The fabulous Mr fabulous, is just that FABULOUS
Today mr fabulous tried something for the first time ever, PASTA WITH SAUCE, was so shocked, I doubt he’ll revisit this moment of madness but was just great all the same.
He is after taking a major stretch and he’s just a whole new child. His interaction is fantastic and his non verbal methods of communication are so clear and visible. He really has amazed me with his new found devilment streak as well. He will do anything for devilment, he loves when I have to run after him to grab something off him or chase him for getting dressed. He is so capable now as well, he’s becoming very independent and interested. He is even starting to tolerate Lunatic john so much more. I have Mr fabulouss tutor Fid and my dear friend Bruno mr fabulous’s therapist to thank for a lot of this. They work so hard with mr fabulous that it’s really showing and paying off. DH, Crazy jane and I will take a little bit of credit of coarse but just a little lol. Now if they could rid me of my crazy artist mr fabulous who paints with shite (no really, shite) I would be so delighted lol.
Lunatic john is still the same lunatic as ever, that child will put me in an early grave I swear. He’s so funny, just so smart, cheeky and energetic. He has us exhausted and his tantrums are horrific but he’s just so damn cute. He walks around the house with the car keys babbling away to him self in Portuguese (Brazilian) and English, add in baby babble and we have www.confusedmamanddad.com we never know what he’s on about but he’s just so funny.
Crazy jane is becoming soo grown up it’s scary. She’s ten going on 14. She went to the cinema to see eclipse (twilight) and she looked amazing all done up in her black dress, denim jacked, perfect hair and make up. I really just had to stop and look at her; she was soo beautiful and just older than her years. I always knew shed be so much more mature in her age than most as I could see the build up to it, I suppose when your telling the world at the age of 4 you want to wear thongs and bras you got to wonder.
I have spent the last few weeks in misery, so much so that I struggled to even get out of bed but I did something on the 6th of July that ill never be more grateful for, go me yay. I STOOD UP FOR MYSELF. I still shed the odd tear when I speak of Dr Rogers and what he has done to me, ok so floods of tears, I lied, but it’s reducing every day. I can’t go into too much detail but most of my blog followers from face book know what I did, maybe in a few months I can go into more detail here.
My birthday brought a lot of different emotions with it. I actually wanted to pretend it wasn’t happening and that it was months away, not because of my age (I’m still the baby) but because of my frame of mind. Life was really bad and I just wanted to fall down a big hole and stay there to be honest. But DH and CRAZY JANE really made it a special day and CRAZY JANE my friend Sam and I went horse riding and I loved it. I was soo happy I didn’t let my depression take my birthday away.
I’m slowly starting to get back to my old self and feeling more positive and good again, it was so bad there for a while. I’m exhausted from all the stress, work and negative thinking that I let it suck me under, I even started to eat soo much crap for comfort and now I’m huge, I have so much weight to loose, I feel soo different and negative about my appearance, I’m even paranoid to wear most of my clothes.
I’m determined to loose this weight and get my backside back in motion. I was recently studying psychology and Child Psychology and gave up through the diagnosis and pregnancy period but I re enrolled and I’m due to start back very soon, I cannot wait as my brain is starting to cry out for me to use it again. I think being around my friend who is a Psychologist/Psychiatrist and our debates and long chats and advice to each other has really made me crave to study again. DH has also been at me for the last year to return to my studies as he knew I needed it. DH is freaky that way; he can read me like a book even when I can’t read my own self.
I got some great news today which has me so relieved and just so happy. A major bill which I hadn’t received but was aware it was coming was cut dramatically down to a third, this is just fantastic news as since having to buy the new car and employ a therapist for Crazy jane and Mr fabulous I’m struggling financially and it’s really hard to make ends meet. I can’t do half the things I used to and take the kids half the places we used to go, even horse riding has had to take a back seat and it’s really the pits. But it will all be worth it I hope in the long run and I know I’m spending my money on vital services for my kids that the state refuses to provide and that makes it easier. Let me hear ya, HOLLER we want DCA, DCA, god I really hope some miracle happens and I get CRAZY JANE’s awarded to me as I really NEED it, fingers crossed, ill keep yee all posted xx and again, thanks for all the support, believing in me and standing up for me, ill never forget it xxxx
Posted by i at 1:47 PM
4 comments:
Jen said...
Delighted to see you on the up hun, such a relief. Sounds like the children are flying along too. Lovely to catch up, thanks for the update:) Jen
July 22, 2010 1:58 PM
Casdok said...
Sounds like you have had a lot on your plate, so good to hear you are begining to feel your old self.
July 23, 2010 12:19 AM
Anonymous said...
great blog maddy, so glad things are looking up for you.
July 23, 2010 12:32 PM
Looking for Blue Sky said...
Hey Maddy, how about going with that website www.confusedmamanddad.com? I like the sound of it! Great to hear that so many things are looking better: I feel really energised after reading this post, not usual for me on a Friday night xx
July 23, 2010 2:00 PM
Sunday, August 15, 2010
part 28 what the hell is happening here
Hi all, it’s been a while I know but for a reason, life has been hell lately, so hell that no energy to think let alone tell its story.
Ok so WHAT NOW??
The recent letter from Doctor Rogers I have told the majority of you anyway but for those I didn’t tell, well the spineless son of a bitch done something very nasty. So nasty it’s scary actually. This man chose to start war and boy he sunk to his lowest blow yet. What the fuck is his problem, seriously, I don’t get him, I always said he should not be a psychiatrist but yet seek psychiatry for his own mental issues but his latest blow just proves how right I am.
He gathered a handful of people who never met me, or else barely had a conversation with me, hell one was a school nurse who done an eye and vision test on Crazy jane once to a meeting and manipulated them into making a nasty decision about me and Crazy jane, again I cannot say much as I know the DICKHEAD reads this blog but he was vicious. he wasted a lot of Medical resources for this meeting, yes our kids had to be put on hold so he could perform his evil, a dca officer, an area medical officer, an area medical doctor, a school nurse, a speech and language manager, a speech and language therapist, and someone else I again DO NOT KNOW to a meeting. Now his concern as he states was the welfare of my daughter, hmmmmmmm and our relationship, huh, ok let me revise.
These people never met me or my daughter, they do not know us nor have a reason to be in our life. I maybe spoke once on the phone to arrange assessment, I think she had 3 sessions of s&l therapy and was told she wouldn’t get any more due to Asperger’s diagnosis as she was now Dr Rogers problem again. A dca officer, well don’t we all know them and yes I had to beg for money from her, DENIED the area medical doctor who referred her for NEPS Psychology to begin with yada yads bla bla
So does that qualify them to know me and my daughter, our relationship, our family life and struggles , fuck no it does not, these people have jobs to do yet they chose to come to this meeting, FOR WHAT cause they where dragged to it. Isn’t it funny how they never invited S***s Psych, you know the one who carried out her Cognitive Psych assessment, the S***s OT and Speech and language therapist, you know the ones who carried out the MULTI D to diagnose Asperger’s. Isn’t it funny how he had all of Crazy jane’s reports at his finger tips yet he never chose to bring the 3 OT ‘s who assessed her to the meeting, the 3 Speech and Language therapists who assessed her to the meeting, the other 2 psychologists to the meeting, the NEPS Psychologist who originally suspected Asperger’s to the meeting, My social Worker from Mr fabulous’s services (you know the family social worker) crazy jane’s teachers / Principle to the meeting
Yea taught that would amaze you, as it sure as hell amazed me too.
The conclusion: we are now referred to Social Services as he fears for Crazy jane’s emotional well being due to her relationship with me, Have you ever heard such a load of bullshit in your life. That child is the best looked after; her needs are met by me daily as she has no services here due to his irresponsible way of thinking, so I am her services, S&L OT Psych etc. I am BROKE trying to keep her entertained, educated, stimulated. I Joined forces with 2 other woman and created The Creativity Mill as I saw it as an opportunity to compliment both Mr fabulous’s and Crazy jane’s therapies, educational needs, occupational therapy needs, social interaction needs, entertainment needs, emotional well being needs, everything. Crazy jane participates in summer camps, art classes, Saturday club, and Glee club everything. She is the happiest she has been in such a long time. I have employed a psychologist to work with both Crazy jane and Mr fabulous just to make sure they have the best of all their needs met. I’m broke as I volunteer my time to The Creativity Mill, I do not get paid. I am putting my heart and soul into everything I can for MY KIDS, I have no life, as my life is my kids. I’m run ragged trying to devote my time, love, affection and attention between 3 very high needs and dependant children. I’m financially fucked as every penny I have goes on my 3 children. I’m physically and mentally exhausted DAILY making sure my kids are looked after, entertained, fed, bathed, their therapies are done, their appointments are scheduled, I have childcare so I can attend their appointments yada yada and this is the praise and thanks I get.
I have no problem printing this on the web either as anyone who knows me knows all to well that what he’s trying to do is bollix. I know in my heart that I am a great mother and I never prioritise anything above my children. Even my life and happiness comes second to my children’s. I am a great mother who is run ragged trying to fight this poxy system to make sure her children are given everything they are entitled to, it seems to me the more you fight the harder you fall, at least it is with me. I’m sick of fighting, I’m sick of filling in applications, I’m sick of praying my kids will get stuff they should be getting, I’m sick of worrying about the future, I’m sick of needing to keep a diary so I can remember all of my appointments and arrangements. I’m sick of having to plan 3 months in advance for EVERYTHING. Can someone tell me does this get easier, does it settle down eventually? I’m sick to death or trying to be so in control of my life as my kids need me to be. I’m sick of trying to keep everyone happy and splitting my self in 3 so that each child has the same amount of my time love affection and attention.
I am so angry that this son of a bitch has the power to hurt me the way he does. I could seriously physically hurt him but id be arrested but yet he gets to torture, emotionally and mentally abuse me like this and gets away with it. He gets to waste all of these medical professionals’ time and resources and gets away with it and all of those kids who need those resources get pushed aside for this. And now he is going to waste social services time, all those poor children who need social services and he is pushing them aside just to hurt me. There is a fine and punishment for people who make stupid calls to Social services, will he be punished and fined also, you bet your ass he won’t. New county abuse case anyone, does he not recall this case and see that social services have better things to be doing. ASSHOLE
I cannot wait for them to call to my house, see the chaos, the constant cleaning, the constant whinging for my attention, the amount of safety measures it takes to get through one day, tellies screwed to the wall, bed screwed to the floor, high fences to stop escape, blocked chimneys, stair gates, pecs cards, blocked off hobs, time schedules, calendar dates highlighted everywhere, daily time schedules, yes come to my house and maybe they will see that I actually need more help to cope with it all and realise that Dr Rogers was being a dickhead and give him hefty talking to and fine for wasting resources.
BRING IT you sick and twisted evil little man
7 comments:
Foodie Mummy said...
So sorry to hear about that! Is there no kind of complaint system in place? Are you not entitled to get second opinions anymore? If all those women that were told their babies were dead hadn't gone and gotten second opinions, they would never have had their children. What kind of country is this? One doctor that is so sure of his diagnosis that he'll bulldoze everything in his way to make it stand? That's just ridiculous. You are such a brave woman, taking on everything you take on and having to deal with such crap. I know it's hard but keep on fighting! If there is anything I can do, please don't hesitate to let me know! X
June 28, 2010 4:38 AM
Jen said...
I know I knew about this but it still shocks me that one person can be so vindictive and unprofessional. Keep going hun, you and you children are worth the battle one hundred times over and if ever there is anything I can do then you know where I am. Big hugs Jen xxx
June 28, 2010 7:46 AM
i said...
thanks girls, im just angry and hurt. it makes me feel worthless and that no matter what i do its just not good enough, i feel like i can never win, and having to cope with this on top of every day stuff and people and stupid carry on just makes me crumble to the pressure
im fighting still but at my own expense, im also at breaking point but thank you for the support, it means the world xxx
il get through it as i have all you fb buddies and great friends to help me
June 28, 2010 11:07 AM
Looking for Blue Sky said...
You are good enough, more than good enough, but there are some people who always enjoy a power trip and what better way than turning the screws on a family that is already stretched to the limit. Keep on fighting: I got there in the end with Smiley and hopefully you will as well xxx
June 28, 2010 2:32 PM
Petunia said...
Hang in there chick, he's definitely on a power trip and being vindictive. Anyone who knows you know this. Keep on fighting and know that we are behind you xxx
June 29, 2010 2:32 PM
jazzygal said...
You are worth a lot more than this Maddy! I knew about this too but like Jen says, it's shocking to see it detailed like this.
I'm inclined to go with the second opinion option, like Foodie Mummy says. Also, the MEDICAL BOARD have complaints procedures in place if you're not happy with the treatment you have received... most organisations do. Maybe you could examine that, get some advice and maybe make a pre-emptive strike ;-)
Yea...I know...ANOTHER battle. Such a pain!
Best of luck with it....repeat after me : I am a great mum.... I am a great mum....!
xx Jazzy
June 29, 2010 3:33 PM
Momx3 said...
OMG Maddy, I didn't realise you were going through all this. I've not had time to read any of the blogs for a while now, sorry!
Keep your head held high hunny. Its an absolute disgrace that you have to face all this on top of looking after your family.
Big hugs,xxx Vicki
July 3, 2010 3:33 AM
Ok so WHAT NOW??
The recent letter from Doctor Rogers I have told the majority of you anyway but for those I didn’t tell, well the spineless son of a bitch done something very nasty. So nasty it’s scary actually. This man chose to start war and boy he sunk to his lowest blow yet. What the fuck is his problem, seriously, I don’t get him, I always said he should not be a psychiatrist but yet seek psychiatry for his own mental issues but his latest blow just proves how right I am.
He gathered a handful of people who never met me, or else barely had a conversation with me, hell one was a school nurse who done an eye and vision test on Crazy jane once to a meeting and manipulated them into making a nasty decision about me and Crazy jane, again I cannot say much as I know the DICKHEAD reads this blog but he was vicious. he wasted a lot of Medical resources for this meeting, yes our kids had to be put on hold so he could perform his evil, a dca officer, an area medical officer, an area medical doctor, a school nurse, a speech and language manager, a speech and language therapist, and someone else I again DO NOT KNOW to a meeting. Now his concern as he states was the welfare of my daughter, hmmmmmmm and our relationship, huh, ok let me revise.
These people never met me or my daughter, they do not know us nor have a reason to be in our life. I maybe spoke once on the phone to arrange assessment, I think she had 3 sessions of s&l therapy and was told she wouldn’t get any more due to Asperger’s diagnosis as she was now Dr Rogers problem again. A dca officer, well don’t we all know them and yes I had to beg for money from her, DENIED the area medical doctor who referred her for NEPS Psychology to begin with yada yads bla bla
So does that qualify them to know me and my daughter, our relationship, our family life and struggles , fuck no it does not, these people have jobs to do yet they chose to come to this meeting, FOR WHAT cause they where dragged to it. Isn’t it funny how they never invited S***s Psych, you know the one who carried out her Cognitive Psych assessment, the S***s OT and Speech and language therapist, you know the ones who carried out the MULTI D to diagnose Asperger’s. Isn’t it funny how he had all of Crazy jane’s reports at his finger tips yet he never chose to bring the 3 OT ‘s who assessed her to the meeting, the 3 Speech and Language therapists who assessed her to the meeting, the other 2 psychologists to the meeting, the NEPS Psychologist who originally suspected Asperger’s to the meeting, My social Worker from Mr fabulous’s services (you know the family social worker) crazy jane’s teachers / Principle to the meeting
Yea taught that would amaze you, as it sure as hell amazed me too.
The conclusion: we are now referred to Social Services as he fears for Crazy jane’s emotional well being due to her relationship with me, Have you ever heard such a load of bullshit in your life. That child is the best looked after; her needs are met by me daily as she has no services here due to his irresponsible way of thinking, so I am her services, S&L OT Psych etc. I am BROKE trying to keep her entertained, educated, stimulated. I Joined forces with 2 other woman and created The Creativity Mill as I saw it as an opportunity to compliment both Mr fabulous’s and Crazy jane’s therapies, educational needs, occupational therapy needs, social interaction needs, entertainment needs, emotional well being needs, everything. Crazy jane participates in summer camps, art classes, Saturday club, and Glee club everything. She is the happiest she has been in such a long time. I have employed a psychologist to work with both Crazy jane and Mr fabulous just to make sure they have the best of all their needs met. I’m broke as I volunteer my time to The Creativity Mill, I do not get paid. I am putting my heart and soul into everything I can for MY KIDS, I have no life, as my life is my kids. I’m run ragged trying to devote my time, love, affection and attention between 3 very high needs and dependant children. I’m financially fucked as every penny I have goes on my 3 children. I’m physically and mentally exhausted DAILY making sure my kids are looked after, entertained, fed, bathed, their therapies are done, their appointments are scheduled, I have childcare so I can attend their appointments yada yada and this is the praise and thanks I get.
I have no problem printing this on the web either as anyone who knows me knows all to well that what he’s trying to do is bollix. I know in my heart that I am a great mother and I never prioritise anything above my children. Even my life and happiness comes second to my children’s. I am a great mother who is run ragged trying to fight this poxy system to make sure her children are given everything they are entitled to, it seems to me the more you fight the harder you fall, at least it is with me. I’m sick of fighting, I’m sick of filling in applications, I’m sick of praying my kids will get stuff they should be getting, I’m sick of worrying about the future, I’m sick of needing to keep a diary so I can remember all of my appointments and arrangements. I’m sick of having to plan 3 months in advance for EVERYTHING. Can someone tell me does this get easier, does it settle down eventually? I’m sick to death or trying to be so in control of my life as my kids need me to be. I’m sick of trying to keep everyone happy and splitting my self in 3 so that each child has the same amount of my time love affection and attention.
I am so angry that this son of a bitch has the power to hurt me the way he does. I could seriously physically hurt him but id be arrested but yet he gets to torture, emotionally and mentally abuse me like this and gets away with it. He gets to waste all of these medical professionals’ time and resources and gets away with it and all of those kids who need those resources get pushed aside for this. And now he is going to waste social services time, all those poor children who need social services and he is pushing them aside just to hurt me. There is a fine and punishment for people who make stupid calls to Social services, will he be punished and fined also, you bet your ass he won’t. New county abuse case anyone, does he not recall this case and see that social services have better things to be doing. ASSHOLE
I cannot wait for them to call to my house, see the chaos, the constant cleaning, the constant whinging for my attention, the amount of safety measures it takes to get through one day, tellies screwed to the wall, bed screwed to the floor, high fences to stop escape, blocked chimneys, stair gates, pecs cards, blocked off hobs, time schedules, calendar dates highlighted everywhere, daily time schedules, yes come to my house and maybe they will see that I actually need more help to cope with it all and realise that Dr Rogers was being a dickhead and give him hefty talking to and fine for wasting resources.
BRING IT you sick and twisted evil little man
7 comments:
Foodie Mummy said...
So sorry to hear about that! Is there no kind of complaint system in place? Are you not entitled to get second opinions anymore? If all those women that were told their babies were dead hadn't gone and gotten second opinions, they would never have had their children. What kind of country is this? One doctor that is so sure of his diagnosis that he'll bulldoze everything in his way to make it stand? That's just ridiculous. You are such a brave woman, taking on everything you take on and having to deal with such crap. I know it's hard but keep on fighting! If there is anything I can do, please don't hesitate to let me know! X
June 28, 2010 4:38 AM
Jen said...
I know I knew about this but it still shocks me that one person can be so vindictive and unprofessional. Keep going hun, you and you children are worth the battle one hundred times over and if ever there is anything I can do then you know where I am. Big hugs Jen xxx
June 28, 2010 7:46 AM
i said...
thanks girls, im just angry and hurt. it makes me feel worthless and that no matter what i do its just not good enough, i feel like i can never win, and having to cope with this on top of every day stuff and people and stupid carry on just makes me crumble to the pressure
im fighting still but at my own expense, im also at breaking point but thank you for the support, it means the world xxx
il get through it as i have all you fb buddies and great friends to help me
June 28, 2010 11:07 AM
Looking for Blue Sky said...
You are good enough, more than good enough, but there are some people who always enjoy a power trip and what better way than turning the screws on a family that is already stretched to the limit. Keep on fighting: I got there in the end with Smiley and hopefully you will as well xxx
June 28, 2010 2:32 PM
Petunia said...
Hang in there chick, he's definitely on a power trip and being vindictive. Anyone who knows you know this. Keep on fighting and know that we are behind you xxx
June 29, 2010 2:32 PM
jazzygal said...
You are worth a lot more than this Maddy! I knew about this too but like Jen says, it's shocking to see it detailed like this.
I'm inclined to go with the second opinion option, like Foodie Mummy says. Also, the MEDICAL BOARD have complaints procedures in place if you're not happy with the treatment you have received... most organisations do. Maybe you could examine that, get some advice and maybe make a pre-emptive strike ;-)
Yea...I know...ANOTHER battle. Such a pain!
Best of luck with it....repeat after me : I am a great mum.... I am a great mum....!
xx Jazzy
June 29, 2010 3:33 PM
Momx3 said...
OMG Maddy, I didn't realise you were going through all this. I've not had time to read any of the blogs for a while now, sorry!
Keep your head held high hunny. Its an absolute disgrace that you have to face all this on top of looking after your family.
Big hugs,xxx Vicki
July 3, 2010 3:33 AM
Part 27, long time no typing
Well where do I begin, it’s been a long time since my last blog. As you know The creativity centre is open and my god we are run off our feet. It has been all go but I won’t complain as we need it to be. We have been successful in getting our message out that we are about children and adults of ALL abilities and we have all abilities participating in our classes.
You would think the smile on my face would be from ear to ear, that Id be beaming with pride and really feeling good about my self, well no, no I am not. You see its really hard work, it’s exhausting and eating into a lot of our time keeping us away from our husbands and children, this is killing me. To the point where I was ready to walk away and never walk back through the doors again.
Our dream of bringing our kids to work was shattered, it just was not working at all, we where gutted, really gutted. Childcare is now in place and costing us a fortune, considering we do not make a penny this is financially frustrating and emotionally upsetting us as we are missing them badly. I’m also being faced with a difficult question, am I running from my problems or am I so secure in myself that my children are just fine without me there 24/7 that I can leave and go to work. Truthfully, I think I’m running
I got Lunatic john’s results from the hospital, all clear so that was a huge stress laid to rest and a major relief. But with good news comes bad also. The doctor went over the history again of my 2 asd and adhd kiddies. He pointed out that Lunatic john is very loud and over hyperactive. He especially pointed it out to me after Lunatic john almost smashed his flat screen computer monitor and then broke his blood pressure thing (again) and as he was picking up all the stuff from his desk that Lunatic john flung off it. He explained that Lunatic john does not eat enough to burn off so there fore he is burning off his muscle tissue also. If he does not calm down and start gaining weight that he will need to be put on a special drink to help him gain weight. They are very concerned with the over hyper activity and have mentioned those lovely magic 4 letters, adhd and will bring him in and monitor him every 4 months. The squeal and loud shouting is also a behaviour associated with ADHD and spectrum disorders but they have completely ruled out asd. So yet again I am faced with more problems. They even said that they NEVER in a million years would even begin to mention adhd this early and never assume a child to have it but given the family history, the evidence before them that they would not patronise me and tell me anything but to not rule it out as they cannot either.
Great, just the news an already stressed out, exhausted, emotionally, physically and mentally drained mother wants/needs to hear, I think Dh is just praying that he grows out of these behaviours and he calms down and is just problem free, in my heart I am too, but in my well tuned brain, I know what’s coming in a few years, even my mother, the most in denial woman I know, is full aware that Lunatic john is very different to other babies she’s been around, there have been plenty. Assessment of need is looming, AGAIN. On a good note lol, mr fabulous also got results back from the hospital, ah yea, one hospital in Galway and the other in Dublin; I’ve been clocking up some mileage these days. Mr fabulous is cast free and will get away with one round of botox, thank god as those casts where like deadly weapons. Mr fabulous knocked me on conscious with those things during a playing session one morning, imagine if it was Lunatic john’s head, well actually mr fabulous probably could more than imagine it being Lunatic john’s head LOL So now, still no news on CRAZY JANE, still waiting for some service to take her, nothing, nada, nout. The poor child is still depressed, she’s struggling more and more with groups and is struggling with her confidence. One of her friend’s broke her heart a while back, she said some really hurtful things to her and she believes them and is hurt by them. Her friend told her that she is useless to her and is holding her back, the girl no more meant them and has a habit of venting with anger and lashing out but unfortunately Crazy jane is convinced that she is in fact useless and holding her friends back, it’s the literal thing, she just takes things to heart and cant really get past it. I know I have plenty more of situations like this to come. What if Crazy jane’s issues stand out more when she is older and she hears worse things than this, I am so afraid that she will just isolate herself from everyone and get severely depressed, she already at age 9 suffers mild bouts. I’m so worried and tormented by what is awaiting her as she gets older.
I’m trying to stay positive and keep my head in a good place but it’s hard, really hard. I have a lot of baggage with me that is really hard to leave behind. I have major guilt issues, failure issues, confidence issues, so much going on inside this head of mine that I have forced myself to come to realise that it is really time for some counselling. It’s something I’ve steered clear of for way too long. I have insomnia coming back and this is something I cannot go through again. I had it for a straight year a good few years back, it destroyed me, I really was miserable for that complete year. I tried every medication there was, nothing worked, I’m even now going to start taking melatonin as recommended by a good friend from face book, thanks Victoria xx
So that’s the story since my last blog. I’m missing all the face book gossip, blog’s and just the general goings on, I’m determined to log on more, blog more and read all my friends blog’s. It’s been ages since I had time to write and read blog’s. My husband has been amazing and so supportive. The kids are fed, bathed and the washing and drying is done by time I get home. But i am missing being home and missing my routine but i have a new routine to get used to and im figuring work arounds and going to start working a lot less hours so that will make all the difference.
11 comments:
Jen said...
Sorry to hear bringing the children with you to work didn't go well, that changes everything. I hope things begin to settle in for you hun. Have missed you around and about and looking forward to seeing more of you on FB when you can manage it, but take it easy on yourself first, everyone will still be here when you are ready :) Take care. Jen.
April 27, 2010 3:01 PM
sam said...
I know those feelings you are going thru coz I quite often go thru them because of Kieran but I can only imagine what it is like for you with the three of them,you could be in denial but your not and thats good your facing them head on and you have alot of support. Don't be afraid to call on me if you need me even if its just to come to the mill to sit on the sofas and have a chat and compare stories about crazy jane and kieran!!
April 28, 2010 1:52 AM
Foodie Mummy said...
I hope you get used to your new routine soon and you manage to get some sleep. Sometimes we need to take care of ourselves first in order to be able to take care of others. X
April 28, 2010 2:04 AM
Sandra M said...
I can't imagine how stressed, overtired and overwhelmed you have to be feeling all the time. Counselling should help but more important the melatonin should too. I hope things quieten down soon and you get some TLC time you absolutely deserve it xxx
April 28, 2010 9:25 AM
i said...
thanx guys
hi sam, anytime, you really are a great friend and we appreciate all your help and support and i do especially xx
now to do the fun stuff, bring on the horse riding :))
April 28, 2010 9:26 AM
Looking for Blue sky said...
Whoah, you always have sooo much going on, and so much to deal with, and so many worries about the future. I get that panicy Oh God here we go again feeling when you realise that another child is going to need help, but with luck, who knows he is so young, maybe he will grow out of it. My 9-year old is unrecognisable from the small child he once was. And Crazy jane? Well she is very clever, so isn't there hope that she can be taught all the stuff that she doesn't absorb naturally about social behaviour? I don't know, but that is what I am hoping for my son anyway. Great to have you back xxx
April 28, 2010 12:28 PM
Petunia said...
You must be exhausted! Seriously how do you manage to fit it all in?? Sorry to hear the insomnia is back, there seriously is nothing worse. Hope the melatonin works its magic for you chick xx
April 28, 2010 12:38 PM
Looking for Blue Scrazy jane said...
Just realised that some of my above comment might upset some people, but can't work out how to delete it! Very sorry if I caused offence to anyone...
At time like this I just want to stop commenting altogether until I remember how much I like getting comments.
April 29, 2010 1:29 AM
Jean said...
Great to see you writing again but wow, is your life at warp speed or what???
Hope you get a chance to have a break soon xxx
April 29, 2010 2:24 AM
i said...
Hey blue scrazy jane, your comment was in my opinion not offensive at all, I love comments too and I love especially to get comments from you as I respect you and your situation very very much, I would not be able to manage the way you do, hats off to you Hun, your amazining
everyone is entitled to their opinion, I value your opinion xxxxxxxxxx
April 29, 2010 8:22 AM
Irish Mammy said...
You have amazing energy that is all I can say! I am always amazed reading your posts. Award for you over at mine!
May 7, 2010 9:34 AM
You would think the smile on my face would be from ear to ear, that Id be beaming with pride and really feeling good about my self, well no, no I am not. You see its really hard work, it’s exhausting and eating into a lot of our time keeping us away from our husbands and children, this is killing me. To the point where I was ready to walk away and never walk back through the doors again.
Our dream of bringing our kids to work was shattered, it just was not working at all, we where gutted, really gutted. Childcare is now in place and costing us a fortune, considering we do not make a penny this is financially frustrating and emotionally upsetting us as we are missing them badly. I’m also being faced with a difficult question, am I running from my problems or am I so secure in myself that my children are just fine without me there 24/7 that I can leave and go to work. Truthfully, I think I’m running
I got Lunatic john’s results from the hospital, all clear so that was a huge stress laid to rest and a major relief. But with good news comes bad also. The doctor went over the history again of my 2 asd and adhd kiddies. He pointed out that Lunatic john is very loud and over hyperactive. He especially pointed it out to me after Lunatic john almost smashed his flat screen computer monitor and then broke his blood pressure thing (again) and as he was picking up all the stuff from his desk that Lunatic john flung off it. He explained that Lunatic john does not eat enough to burn off so there fore he is burning off his muscle tissue also. If he does not calm down and start gaining weight that he will need to be put on a special drink to help him gain weight. They are very concerned with the over hyper activity and have mentioned those lovely magic 4 letters, adhd and will bring him in and monitor him every 4 months. The squeal and loud shouting is also a behaviour associated with ADHD and spectrum disorders but they have completely ruled out asd. So yet again I am faced with more problems. They even said that they NEVER in a million years would even begin to mention adhd this early and never assume a child to have it but given the family history, the evidence before them that they would not patronise me and tell me anything but to not rule it out as they cannot either.
Great, just the news an already stressed out, exhausted, emotionally, physically and mentally drained mother wants/needs to hear, I think Dh is just praying that he grows out of these behaviours and he calms down and is just problem free, in my heart I am too, but in my well tuned brain, I know what’s coming in a few years, even my mother, the most in denial woman I know, is full aware that Lunatic john is very different to other babies she’s been around, there have been plenty. Assessment of need is looming, AGAIN. On a good note lol, mr fabulous also got results back from the hospital, ah yea, one hospital in Galway and the other in Dublin; I’ve been clocking up some mileage these days. Mr fabulous is cast free and will get away with one round of botox, thank god as those casts where like deadly weapons. Mr fabulous knocked me on conscious with those things during a playing session one morning, imagine if it was Lunatic john’s head, well actually mr fabulous probably could more than imagine it being Lunatic john’s head LOL So now, still no news on CRAZY JANE, still waiting for some service to take her, nothing, nada, nout. The poor child is still depressed, she’s struggling more and more with groups and is struggling with her confidence. One of her friend’s broke her heart a while back, she said some really hurtful things to her and she believes them and is hurt by them. Her friend told her that she is useless to her and is holding her back, the girl no more meant them and has a habit of venting with anger and lashing out but unfortunately Crazy jane is convinced that she is in fact useless and holding her friends back, it’s the literal thing, she just takes things to heart and cant really get past it. I know I have plenty more of situations like this to come. What if Crazy jane’s issues stand out more when she is older and she hears worse things than this, I am so afraid that she will just isolate herself from everyone and get severely depressed, she already at age 9 suffers mild bouts. I’m so worried and tormented by what is awaiting her as she gets older.
I’m trying to stay positive and keep my head in a good place but it’s hard, really hard. I have a lot of baggage with me that is really hard to leave behind. I have major guilt issues, failure issues, confidence issues, so much going on inside this head of mine that I have forced myself to come to realise that it is really time for some counselling. It’s something I’ve steered clear of for way too long. I have insomnia coming back and this is something I cannot go through again. I had it for a straight year a good few years back, it destroyed me, I really was miserable for that complete year. I tried every medication there was, nothing worked, I’m even now going to start taking melatonin as recommended by a good friend from face book, thanks Victoria xx
So that’s the story since my last blog. I’m missing all the face book gossip, blog’s and just the general goings on, I’m determined to log on more, blog more and read all my friends blog’s. It’s been ages since I had time to write and read blog’s. My husband has been amazing and so supportive. The kids are fed, bathed and the washing and drying is done by time I get home. But i am missing being home and missing my routine but i have a new routine to get used to and im figuring work arounds and going to start working a lot less hours so that will make all the difference.
11 comments:
Jen said...
Sorry to hear bringing the children with you to work didn't go well, that changes everything. I hope things begin to settle in for you hun. Have missed you around and about and looking forward to seeing more of you on FB when you can manage it, but take it easy on yourself first, everyone will still be here when you are ready :) Take care. Jen.
April 27, 2010 3:01 PM
sam said...
I know those feelings you are going thru coz I quite often go thru them because of Kieran but I can only imagine what it is like for you with the three of them,you could be in denial but your not and thats good your facing them head on and you have alot of support. Don't be afraid to call on me if you need me even if its just to come to the mill to sit on the sofas and have a chat and compare stories about crazy jane and kieran!!
April 28, 2010 1:52 AM
Foodie Mummy said...
I hope you get used to your new routine soon and you manage to get some sleep. Sometimes we need to take care of ourselves first in order to be able to take care of others. X
April 28, 2010 2:04 AM
Sandra M said...
I can't imagine how stressed, overtired and overwhelmed you have to be feeling all the time. Counselling should help but more important the melatonin should too. I hope things quieten down soon and you get some TLC time you absolutely deserve it xxx
April 28, 2010 9:25 AM
i said...
thanx guys
hi sam, anytime, you really are a great friend and we appreciate all your help and support and i do especially xx
now to do the fun stuff, bring on the horse riding :))
April 28, 2010 9:26 AM
Looking for Blue sky said...
Whoah, you always have sooo much going on, and so much to deal with, and so many worries about the future. I get that panicy Oh God here we go again feeling when you realise that another child is going to need help, but with luck, who knows he is so young, maybe he will grow out of it. My 9-year old is unrecognisable from the small child he once was. And Crazy jane? Well she is very clever, so isn't there hope that she can be taught all the stuff that she doesn't absorb naturally about social behaviour? I don't know, but that is what I am hoping for my son anyway. Great to have you back xxx
April 28, 2010 12:28 PM
Petunia said...
You must be exhausted! Seriously how do you manage to fit it all in?? Sorry to hear the insomnia is back, there seriously is nothing worse. Hope the melatonin works its magic for you chick xx
April 28, 2010 12:38 PM
Looking for Blue Scrazy jane said...
Just realised that some of my above comment might upset some people, but can't work out how to delete it! Very sorry if I caused offence to anyone...
At time like this I just want to stop commenting altogether until I remember how much I like getting comments.
April 29, 2010 1:29 AM
Jean said...
Great to see you writing again but wow, is your life at warp speed or what???
Hope you get a chance to have a break soon xxx
April 29, 2010 2:24 AM
i said...
Hey blue scrazy jane, your comment was in my opinion not offensive at all, I love comments too and I love especially to get comments from you as I respect you and your situation very very much, I would not be able to manage the way you do, hats off to you Hun, your amazining
everyone is entitled to their opinion, I value your opinion xxxxxxxxxx
April 29, 2010 8:22 AM
Irish Mammy said...
You have amazing energy that is all I can say! I am always amazed reading your posts. Award for you over at mine!
May 7, 2010 9:34 AM
part 26, rewiring
I was really at an all time low, especially since St Patricks Day. You see I can go out start a new business, all the effort and energy we put in to decorating the premises, planning activities and all that we’ve done, I see the results; they stare at me in bright lime, deep purple and WHITE colours. I see the work we have all put in, I see how successful we where at creating it, I see the results. I do the same with my children yet I rarely see the results when it comes to Mr fabulous.
I was so upset as Mr fabulous is amazing, he is everything a mother dreams of in a child, handsome, happy, strong, affectionate all of this, yet he seems to stay at a level for such a long time, progression is not something that comes easy for Mr fabulous, it’s a snails pace progression, this upsets me as all the work, effort and time everyone to do with Mr fabulous puts in, it’s still not enough to speed things along, it stays at a pace that drives me bonkers.
I remember after Mr fabulous’s first ever seizure seeing huge immediate improvements in Mr fabulouss intellectual development. His eye contact improved, his receptive language skills improved, he vocalised more all of this but yet I taught it was coincidence, and how could something so horrid actually benefit a small child.
I remember thinking another time that Mr fabulous must have had a seizure as something was not right when I found him in the morning, but he must have been well over the seizure as very little evidence he had one, again, improvements, major ones.
This seizure just gone, I knew for definite that these seizures are like a rewiring job on Mr fabulouss brain as the huge improvements where not only visible to me, but to all who know and work with him. He’s like a different child, he seeks interaction and seeks kisses and cuddles. He is flying with P.E.C.S exchanges for everything, food, toys, everything. He is more tolerant THANK GOD of his brother and his mental tone of squeals, crying and laughing. He is trying different food textures, he is trying to do so much more for himself, his vocalising and interest in vocal sounds is really a huge thing, he now puts his hand on your lips and throat to feel the vibrations when you sing, he is just a different child.
It is so strange how our bodies work. A seizure is such a traumatic, frightening and heart stopping event and yet it is doing my son the world of good. I will never understand this and I still would never wish another seizure on my son but im not so frightened of them any more, im comfortable knowing that it is in a strange way helping him and not harming him at all.
I was so proud and happy to watch him playing with my friend Rachel the other night. He gave kisses, cuddles, and interacted with her for ages, he gave her amazing eye contact, he has known Rachel for 2 years and she would never pass by him and not greet him, yet she knew she would never be greeted back, and now he’s on her lap cuddling, looking for tickles and shock of all shock, he allowed her to squeeze his HEAD, this was never allowed by anyone but me and his OT, he requested her to squeeze his head. I was gob smacked. This was huge.
Im so happy that Mr fabulous is coming on so well, I’ve been waiting for this type of progress for a very long time, we all have. He has his EEG in May and I cannot wait to ask some questions and hopefully have a better answer to what is actually going on with him. Fingers crossed all goes well and remains to go well.
7 comments:
Sandra M said...
That is absolutely FANTASTIC - I couldn't be happier for you both xxxxxxx
March 26, 2010 2:48 PM
Jean said...
it's great that Mr fabulous is getting on better with his baby brother, and I completely empathise at your frustration over the slow progress.
Finian has bursts of development and then plateaus for months. We've got used to this pattern, but sometimes we'd love a bit of steady progress.
Re the seizures and his apparent improvements, it'll be very interesting to see what the neuro boffins have to say about it xxx
March 26, 2010 3:08 PM
lastofthemojitos said...
Well done Mr fabulous! It must be awful for you to have to watch him have seizures, it must be so scary as a mam but I'm glad he's doing well x
March 26, 2010 4:03 PM
Looking for Blue Scrazy jane said...
I so hope that this is the start of a much brighter future for Mr fabulous. I know how heart-breaking it is when your child doesn't seem to be progressing. xxx
March 27, 2010 3:25 AM
Jen said...
I am so glad you reposted this, I was away for the weekend and missed it and am kicking myself because this is such fantastic news :D:D:D I am absolutely delighted. The seizures are scary, you have mentioned them before. It will be interesting to see about the EEG and what the Dr.s have to say about it, but for now WOW!! Jen.
March 31, 2010 6:18 AM
claireh said.
I dont know how i missed this before. great blog maddy. Im so thrilled mr fabulous is doing so fantastic, I hope they can explain some stuff at the eeg. Fair play to him for coming on so great after a seizure. they have the opposite affect on me and it takes me days to recover.
Im not surprised youve been feeling down. You have taken on so much, you do so much for everyone else but you need to look after yourself too.
Your a fantastic lady, mother and friend and your a real inspiration
xx
April 8, 2010 2:47 PM
Petunia said...
I'm only seeing this post now Maddy and hope you are feeling a little better now. You have a huge amount on your plate and I seriously don't know how you do so much! Thats fantastic that you have seen so much improvement since the seizures! I'm really interested to see what the EEG shows up and what the doctors say xxx
April 10, 2010 4:20 PM
I was so upset as Mr fabulous is amazing, he is everything a mother dreams of in a child, handsome, happy, strong, affectionate all of this, yet he seems to stay at a level for such a long time, progression is not something that comes easy for Mr fabulous, it’s a snails pace progression, this upsets me as all the work, effort and time everyone to do with Mr fabulous puts in, it’s still not enough to speed things along, it stays at a pace that drives me bonkers.
I remember after Mr fabulous’s first ever seizure seeing huge immediate improvements in Mr fabulouss intellectual development. His eye contact improved, his receptive language skills improved, he vocalised more all of this but yet I taught it was coincidence, and how could something so horrid actually benefit a small child.
I remember thinking another time that Mr fabulous must have had a seizure as something was not right when I found him in the morning, but he must have been well over the seizure as very little evidence he had one, again, improvements, major ones.
This seizure just gone, I knew for definite that these seizures are like a rewiring job on Mr fabulouss brain as the huge improvements where not only visible to me, but to all who know and work with him. He’s like a different child, he seeks interaction and seeks kisses and cuddles. He is flying with P.E.C.S exchanges for everything, food, toys, everything. He is more tolerant THANK GOD of his brother and his mental tone of squeals, crying and laughing. He is trying different food textures, he is trying to do so much more for himself, his vocalising and interest in vocal sounds is really a huge thing, he now puts his hand on your lips and throat to feel the vibrations when you sing, he is just a different child.
It is so strange how our bodies work. A seizure is such a traumatic, frightening and heart stopping event and yet it is doing my son the world of good. I will never understand this and I still would never wish another seizure on my son but im not so frightened of them any more, im comfortable knowing that it is in a strange way helping him and not harming him at all.
I was so proud and happy to watch him playing with my friend Rachel the other night. He gave kisses, cuddles, and interacted with her for ages, he gave her amazing eye contact, he has known Rachel for 2 years and she would never pass by him and not greet him, yet she knew she would never be greeted back, and now he’s on her lap cuddling, looking for tickles and shock of all shock, he allowed her to squeeze his HEAD, this was never allowed by anyone but me and his OT, he requested her to squeeze his head. I was gob smacked. This was huge.
Im so happy that Mr fabulous is coming on so well, I’ve been waiting for this type of progress for a very long time, we all have. He has his EEG in May and I cannot wait to ask some questions and hopefully have a better answer to what is actually going on with him. Fingers crossed all goes well and remains to go well.
7 comments:
Sandra M said...
That is absolutely FANTASTIC - I couldn't be happier for you both xxxxxxx
March 26, 2010 2:48 PM
Jean said...
it's great that Mr fabulous is getting on better with his baby brother, and I completely empathise at your frustration over the slow progress.
Finian has bursts of development and then plateaus for months. We've got used to this pattern, but sometimes we'd love a bit of steady progress.
Re the seizures and his apparent improvements, it'll be very interesting to see what the neuro boffins have to say about it xxx
March 26, 2010 3:08 PM
lastofthemojitos said...
Well done Mr fabulous! It must be awful for you to have to watch him have seizures, it must be so scary as a mam but I'm glad he's doing well x
March 26, 2010 4:03 PM
Looking for Blue Scrazy jane said...
I so hope that this is the start of a much brighter future for Mr fabulous. I know how heart-breaking it is when your child doesn't seem to be progressing. xxx
March 27, 2010 3:25 AM
Jen said...
I am so glad you reposted this, I was away for the weekend and missed it and am kicking myself because this is such fantastic news :D:D:D I am absolutely delighted. The seizures are scary, you have mentioned them before. It will be interesting to see about the EEG and what the Dr.s have to say about it, but for now WOW!! Jen.
March 31, 2010 6:18 AM
claireh said.
I dont know how i missed this before. great blog maddy. Im so thrilled mr fabulous is doing so fantastic, I hope they can explain some stuff at the eeg. Fair play to him for coming on so great after a seizure. they have the opposite affect on me and it takes me days to recover.
Im not surprised youve been feeling down. You have taken on so much, you do so much for everyone else but you need to look after yourself too.
Your a fantastic lady, mother and friend and your a real inspiration
xx
April 8, 2010 2:47 PM
Petunia said...
I'm only seeing this post now Maddy and hope you are feeling a little better now. You have a huge amount on your plate and I seriously don't know how you do so much! Thats fantastic that you have seen so much improvement since the seizures! I'm really interested to see what the EEG shows up and what the doctors say xxx
April 10, 2010 4:20 PM
part 25 melt downs and break downs
St Patricks Day
CRAZY JANE had been invited to join a local parade with her brownies club. I kind of was unsure as to whether CRAZY JANE would like it, you see she is a bit noise phobic and brass bands etc might just send her into overload. I asked her, she wanted to go but I wanted to spend the day with her and mr fabulous so gave her another option. We came to the conclusion that she would not go. I was relieved as DH was working and Mr fabulous would not go near a parade for love nor money.
So I decided to ask CRAZY JANE’s friend to join us swimming and then for lunch for the big day, she was delighted and said yes. They talked about swimming all week and CRAZY JANE was really looking forward to it. I could have picked a handful of kids to ask but I knew this child’s mum was not great emotionally, mentally and physically at present so taught I would do them both a favour.
So the big day arrived. I made pancakes for breakfast with a big bowl of tropical fruit salad, yummy, enjoyed by all. I managed to drop Lunatic john to my mums as out and out war had broken out between him and Mr fabulous. Lunatic john taught it would be great fun to scream his way through breakfast sending us all into a bit of a downward spiral mentally. So Lunatic john gone, Mr fabulous calming down, our nerves settling again.
I for some reason said to my self, im sure my membership to the pool (can’t do public pools with Mr fabulous, too crowded and noisy, rushed and all that crap) was coming to an end, I had better ring just to double check so that I could bring proper stuff to renew etc. Well thank god I rang, pool was closing at 12 for the day (it was then 11.50) Oh no, what the hell am I going to do now. I really want to spend St Patrick ’s Day with Crazy jane AND Mr fabulous, but with Mr fabulous’s condition we are so limited to what we can do.
I looked out at the grey skies and said; maybe we’ll make it to the park and escape rain. I called in the two girls, CRAZY JANE was delighted with this option, and the other girl was not. Oh god, how bad did I feel, the poor kids. I was forced to make a decision I did not want to make. I decided to leave Mr fabulous behind and bring the girls to the cinema and McDonalds. They where delighted with this. I was so sad as I again had to make the decision to leave Mr fabulous behind and not spoil his sisters day. I am being forced to make this decision a lot lately and its really killing me inside. We already can’t really function as a family unit with Mr fabulouss intolerance of his poor little brother so to accommodate Mr fabulous Lunatic john is shipped off a lot to my mums. The poor child spends more time away from us than with us as Mr fabulous simply cannot handle the noises he makes (to be honest we barely can either, its dreadful painful noises) so again we are completely divided as a family.
DH –working, Lunatic john – mums, Mr fabulous home with working dad and CRAZY JANE off with me.
NON FUNCTIONAL AS YOU CAN SEE
Just as we are ready to leave, the little girl we where bringing is all of a sudden out of no where sick, your kidding me. CRAZY JANE broke down, she sobbed and sobbed. Poor CRAZY JANE, and after all that the poor child could have went to her brownie parade. But no I chose to suggest a family day that in the end never took place. Sometimes Autism can really suck at times, as can Asperger’s.
We went to Another new county in the end and caught the start of their parade. A circus was there too so we got tickets for that and went to see the princess and the frog. It’s actually a lovely film about New Orleans and jazz music. We wanted to see Alice in Wonderland although I knew CRAZY JANE would crap herself in certain parts as I had already went to see it on Mothers Day with my mum and sister (my mum loves 3D films) The circus was fantastic I must say. I taught it would be crap but a filler for the day but we actually really enjoyed it. Poor CRAZY JANE was planking her self at the acrobats and tight rope walkers. She was freaking out in case they fell; I had to keep telling her that they would not fall, not to be worrying lol. But we really enjoyed the day and she had nothing but smiles in the end.
I had a chat with her on the way home and I said, I really missed Mr fabulous, Lunatic john and daddy today. Blank, nothing, not a single emotion. So I said, did you miss them? Why? She asked as if to say, but why would I. Im here having a great time isn’t that all that matters she implied. Ah yes Asperger’s and Autism can really suck. It never entered her head that they where not with us, that they where missing out on the fun, the celebration and togetherness. Yes Asperger’s sucks, well if your CRAZY JANE it doesn’t but if you’re her mum and you’re living my DISFUNCTIONAL life, it really does.
So not only did Autism slap me AGAIN in the face, Asperger’s did too. It’s getting so hard to get my head around just what our life is turning into. Im so loosing my bond with Lunatic john as he is always being handed over to my mum as Mr fabulous is too upset by him. CRAZY JANE is really showing more and more of her Asperger’s self the older she gets, Mr fabulous is just Mr fabulous, never changes, and that’s a big problem as it means he never progresses further, he’s just stuck where he’s at since a long time now. He has little tiny itsy bitsy progressions but nothing big, nothing major. I so want that next step to come, that next level but im just waiting and waiting.
I really want the day to come where Mr fabulous and Lunatic john can remain in each others company for a day, not just 1 hour. I want us to be a family and do family things. I hate my husband’s job, he never has time off, it’s really getting to me, never a bank holiday and we are never all 5 together at one time, always separated by circumstances we cannot control.
Life can be sooo crazy sometimes. Im glad CRAZY JANE had a great St Patricks day in the end, she deserved it, she’s been so good helping me with the business, the kids and I really do want to give credit where credit is due, she’s a fantastic kid but her Asperger’s can make her appear rude, selfish and distant and that’s not who she is, she’s the kindest, loving and giving child you could meet but this little thing inside of her can change that in a heart beat. I’d love to stamp all over her Asperger’s and kill it sometimes, it can be torture to live with and it’s hurtful and shocking at times. I hate it, there I said it, I hate it. Autism I can live with but I hate Asperger’s. I hate what it does to my daughter; I hate how it controls her and takes over her. I hate that she struggles so hard to fight it and keep it at a safe distance.
So yea, sometimes Autism and Asperger’s just really sucks
7 comments:
claireh said...
Ah maddy, im so sorry you had such a bumpy day.
It will get better hun, when alex was younger they hated each other so much, AJ fractured his skull. Now on a good day AJ asks him to play "catch you". I never thought id see the day!
Crazy jane is such a mature girl, she'l get there!
Huge hugs
xxx
March 18, 2010 3:54 PM
Anonymous said...
God you have it tough. I find it hard coping with just Eoin and his autism. You are juggling so much and sacrificing so much to try and keep everyone happy. You are a brill Mam to those three lucky kids. I hope things get easier and Mr fabulous will make some good progress
March 18, 2010 4:00 PM
Jen said...
It's not easy trying to juggle everything to try and keep everyone happy. If you had to pick one person who was most put out by the juggling who would it be? I would say you hun, but that might not be your perspective on it and I don't want to appear judgemental, because I am not judging you at all. Just remember to try your best to look after yourself too (pot, kettle etc!). Jen xxx
March 18, 2010 4:22 PM
Looking for Blue Scrazy jane said...
My heart goes out to you Maddy. I too feel torn in three sooo often, they all want to do different things - and when one is happy another is sad or in meltdown. But you just have to do the best you can, and as Jen said, please look after yourself, even if you are just doing it for your kids xxx
March 18, 2010 5:29 PM
Truf said...
It is really hard. But as coming from a phenotype family (i.e. nobody actually autistic until my boy was diagnosed, but plenty of traits) I can testify that with time your kids will become very strongly attached to each other, much more than "ordinary" kids. So hang on there, in couple of years they will be unseparable.
March 19, 2010 4:14 AM
Petunia said...
Hang in there hun, it will get better. As Lunatic john gets older he will get less "noisy" in the way that can press Mr fabulouss buttons. Yep aspergers and autism suck, but as Jen said, the person most affected by it all is you as you crave the bonds you dreamt for your kids. Crazy jane may not have missed the guys on your day out, but that doesn't mean that she loves them any the less. xxx
March 19, 2010 6:29 PM
jazzygal said...
Ah, C******, it really is hard at the moment isn't it. But like the others say, hopefully it will get better in time. Even if you get to the stage where you could pick a family activity that all would like and do it for just 10 minutes., once a week. Hopefully over time that would increase in duration??
You'll get there and you're not alone in having the family split. Hope things feel better for you soon :)) ((xx)) Jazzy
March 20, 2010 10:42 AM
CRAZY JANE had been invited to join a local parade with her brownies club. I kind of was unsure as to whether CRAZY JANE would like it, you see she is a bit noise phobic and brass bands etc might just send her into overload. I asked her, she wanted to go but I wanted to spend the day with her and mr fabulous so gave her another option. We came to the conclusion that she would not go. I was relieved as DH was working and Mr fabulous would not go near a parade for love nor money.
So I decided to ask CRAZY JANE’s friend to join us swimming and then for lunch for the big day, she was delighted and said yes. They talked about swimming all week and CRAZY JANE was really looking forward to it. I could have picked a handful of kids to ask but I knew this child’s mum was not great emotionally, mentally and physically at present so taught I would do them both a favour.
So the big day arrived. I made pancakes for breakfast with a big bowl of tropical fruit salad, yummy, enjoyed by all. I managed to drop Lunatic john to my mums as out and out war had broken out between him and Mr fabulous. Lunatic john taught it would be great fun to scream his way through breakfast sending us all into a bit of a downward spiral mentally. So Lunatic john gone, Mr fabulous calming down, our nerves settling again.
I for some reason said to my self, im sure my membership to the pool (can’t do public pools with Mr fabulous, too crowded and noisy, rushed and all that crap) was coming to an end, I had better ring just to double check so that I could bring proper stuff to renew etc. Well thank god I rang, pool was closing at 12 for the day (it was then 11.50) Oh no, what the hell am I going to do now. I really want to spend St Patrick ’s Day with Crazy jane AND Mr fabulous, but with Mr fabulous’s condition we are so limited to what we can do.
I looked out at the grey skies and said; maybe we’ll make it to the park and escape rain. I called in the two girls, CRAZY JANE was delighted with this option, and the other girl was not. Oh god, how bad did I feel, the poor kids. I was forced to make a decision I did not want to make. I decided to leave Mr fabulous behind and bring the girls to the cinema and McDonalds. They where delighted with this. I was so sad as I again had to make the decision to leave Mr fabulous behind and not spoil his sisters day. I am being forced to make this decision a lot lately and its really killing me inside. We already can’t really function as a family unit with Mr fabulouss intolerance of his poor little brother so to accommodate Mr fabulous Lunatic john is shipped off a lot to my mums. The poor child spends more time away from us than with us as Mr fabulous simply cannot handle the noises he makes (to be honest we barely can either, its dreadful painful noises) so again we are completely divided as a family.
DH –working, Lunatic john – mums, Mr fabulous home with working dad and CRAZY JANE off with me.
NON FUNCTIONAL AS YOU CAN SEE
Just as we are ready to leave, the little girl we where bringing is all of a sudden out of no where sick, your kidding me. CRAZY JANE broke down, she sobbed and sobbed. Poor CRAZY JANE, and after all that the poor child could have went to her brownie parade. But no I chose to suggest a family day that in the end never took place. Sometimes Autism can really suck at times, as can Asperger’s.
We went to Another new county in the end and caught the start of their parade. A circus was there too so we got tickets for that and went to see the princess and the frog. It’s actually a lovely film about New Orleans and jazz music. We wanted to see Alice in Wonderland although I knew CRAZY JANE would crap herself in certain parts as I had already went to see it on Mothers Day with my mum and sister (my mum loves 3D films) The circus was fantastic I must say. I taught it would be crap but a filler for the day but we actually really enjoyed it. Poor CRAZY JANE was planking her self at the acrobats and tight rope walkers. She was freaking out in case they fell; I had to keep telling her that they would not fall, not to be worrying lol. But we really enjoyed the day and she had nothing but smiles in the end.
I had a chat with her on the way home and I said, I really missed Mr fabulous, Lunatic john and daddy today. Blank, nothing, not a single emotion. So I said, did you miss them? Why? She asked as if to say, but why would I. Im here having a great time isn’t that all that matters she implied. Ah yes Asperger’s and Autism can really suck. It never entered her head that they where not with us, that they where missing out on the fun, the celebration and togetherness. Yes Asperger’s sucks, well if your CRAZY JANE it doesn’t but if you’re her mum and you’re living my DISFUNCTIONAL life, it really does.
So not only did Autism slap me AGAIN in the face, Asperger’s did too. It’s getting so hard to get my head around just what our life is turning into. Im so loosing my bond with Lunatic john as he is always being handed over to my mum as Mr fabulous is too upset by him. CRAZY JANE is really showing more and more of her Asperger’s self the older she gets, Mr fabulous is just Mr fabulous, never changes, and that’s a big problem as it means he never progresses further, he’s just stuck where he’s at since a long time now. He has little tiny itsy bitsy progressions but nothing big, nothing major. I so want that next step to come, that next level but im just waiting and waiting.
I really want the day to come where Mr fabulous and Lunatic john can remain in each others company for a day, not just 1 hour. I want us to be a family and do family things. I hate my husband’s job, he never has time off, it’s really getting to me, never a bank holiday and we are never all 5 together at one time, always separated by circumstances we cannot control.
Life can be sooo crazy sometimes. Im glad CRAZY JANE had a great St Patricks day in the end, she deserved it, she’s been so good helping me with the business, the kids and I really do want to give credit where credit is due, she’s a fantastic kid but her Asperger’s can make her appear rude, selfish and distant and that’s not who she is, she’s the kindest, loving and giving child you could meet but this little thing inside of her can change that in a heart beat. I’d love to stamp all over her Asperger’s and kill it sometimes, it can be torture to live with and it’s hurtful and shocking at times. I hate it, there I said it, I hate it. Autism I can live with but I hate Asperger’s. I hate what it does to my daughter; I hate how it controls her and takes over her. I hate that she struggles so hard to fight it and keep it at a safe distance.
So yea, sometimes Autism and Asperger’s just really sucks
7 comments:
claireh said...
Ah maddy, im so sorry you had such a bumpy day.
It will get better hun, when alex was younger they hated each other so much, AJ fractured his skull. Now on a good day AJ asks him to play "catch you". I never thought id see the day!
Crazy jane is such a mature girl, she'l get there!
Huge hugs
xxx
March 18, 2010 3:54 PM
Anonymous said...
God you have it tough. I find it hard coping with just Eoin and his autism. You are juggling so much and sacrificing so much to try and keep everyone happy. You are a brill Mam to those three lucky kids. I hope things get easier and Mr fabulous will make some good progress
March 18, 2010 4:00 PM
Jen said...
It's not easy trying to juggle everything to try and keep everyone happy. If you had to pick one person who was most put out by the juggling who would it be? I would say you hun, but that might not be your perspective on it and I don't want to appear judgemental, because I am not judging you at all. Just remember to try your best to look after yourself too (pot, kettle etc!). Jen xxx
March 18, 2010 4:22 PM
Looking for Blue Scrazy jane said...
My heart goes out to you Maddy. I too feel torn in three sooo often, they all want to do different things - and when one is happy another is sad or in meltdown. But you just have to do the best you can, and as Jen said, please look after yourself, even if you are just doing it for your kids xxx
March 18, 2010 5:29 PM
Truf said...
It is really hard. But as coming from a phenotype family (i.e. nobody actually autistic until my boy was diagnosed, but plenty of traits) I can testify that with time your kids will become very strongly attached to each other, much more than "ordinary" kids. So hang on there, in couple of years they will be unseparable.
March 19, 2010 4:14 AM
Petunia said...
Hang in there hun, it will get better. As Lunatic john gets older he will get less "noisy" in the way that can press Mr fabulouss buttons. Yep aspergers and autism suck, but as Jen said, the person most affected by it all is you as you crave the bonds you dreamt for your kids. Crazy jane may not have missed the guys on your day out, but that doesn't mean that she loves them any the less. xxx
March 19, 2010 6:29 PM
jazzygal said...
Ah, C******, it really is hard at the moment isn't it. But like the others say, hopefully it will get better in time. Even if you get to the stage where you could pick a family activity that all would like and do it for just 10 minutes., once a week. Hopefully over time that would increase in duration??
You'll get there and you're not alone in having the family split. Hope things feel better for you soon :)) ((xx)) Jazzy
March 20, 2010 10:42 AM
part 24 Come with me to the dark place
Ok its 4.35 am, what the hell am I doing AWAKE. Well Lunatic john is asleep but it's Mr fabulous's turn tonight. Me thinks Mr fabulous is only processing now the fun he had with his fab tutor Fidelma in the park today, as it’s Mr fabulous and as he’s thumping around his room in fits of giggles, he’s allowed lol. I love to hear Mr fabulous giggling and happy no matter what time of the day or night it is.
As I’m laying here awake im pondering over a conversation I had with a dear friend today. You see we got talking about depression and the dark places it can take us. We also got talking about the dark places it took us to as she also suffers from severe depression. She asked me a question no one really dared to ask me before, this is allowed, it was a question I realise I owed an explanation to. Especially to the true and loyal followers of this blog. I know I don’t owe anyone an explanation but I do feel that I owe this blog its explanation.
Ok so you all know the lead up to that day, but WHAT THE HELL WAS I THINKING?
I felt a failure; I couldn’t win Dr Roger’s. He beat me down every turn and step I made. I was powerless against him. He held the key to everything Crazy jane needed and I could not turn it. He hounded my thoughts as he hit me where it hurt. Im thick skinned, it takes a lot to hurt me, but my kids and my parenting skills, now that really hurt. Was he right in his opinion, HELL NO but I was at an all time low, I was mentally, physically and emotionally drained. I was at the edge, one gentle see breeze would have pushed me over, he was a hurricane.
I came to the conclusion that day that this was it; I was never going to win. I was watching my daughter struggle with this illness (and that’s the only name I have for it, it is an illness, it may not be curable but it is TREATABLE and will IMPROVE over the years with understanding, therapy, education and empathy) I could see more and more every day that she needed help I could no longer provide. I done a damn good job to get her this far and im proud of that, it was hard all round but we made it. Now thou it was time to get outside help, but WHERE? Well you would from Dr Rogers and his tailored service in this specialised field, but no not a chance in hell, you see don’t forget there is nothing wrong with Crazy jane in his eyes, yet 3 other medical professionals more qualified than him begged to differ.
So in my head this made sense. If I was to die, Crazy jane Mr fabulous and Lunatic john along with DH would be appointed a social worker, this super (in my head) social worker would then push and succeed in getting my kids all the help they needed. They would be looked after by a powerful force that Dr Rogers could not turn away. Crazy jane would get her therapy, her intervention, EVERYTHING. My kids would be better off in their care than mine.
Now in an ideal world that would make perfect sense and that would be how you would expect it to go down. But then I remembered, Social worker, em yea when you can manage to get hold of her/him. MEDICAL BOARD care, LOL don’t make me laugh, the MEDICAL BOARD is a disgrace, a massive failure to all on its waiting lists. Services, ah im almost hysterical with laughter, em no, lol services, you see then you’d be placed back on the queue that social services have, they couldn’t win argument never mind a court case, and Dr Roger’s, ah stop, he’d destroy them just the same as he destroyed me. So you see you really would think that a social worker meant something in this day and age, and you’d like to think they are, and some are great and really do get the job done, but most are not, as they too are fighting the same system as you and me. They are sometimes as powerless as you and me. Look at the New county case, the social workers tried for years to remove those kids, the courts ignored it. I don’t want to sound unfair towards social workers, as I said, some are great, and it’s the system failing them as much as it fails us. They cannot do their job because of this system either.
I love my kids so much and if me doing this for one minute could have made their lives better I would have done it hands down, but as I sat in my car that day I realised I am the only thing that can make their life better. I could have destroyed their life and my DH’s life further by doing what I stupidly taught could make their life better. Its mad how depression can make you think, can make you confused enough to do stupid things. If I had not of had that rethink im my car that day I dread to think of what more damage could have happened to my kids. Someone was looking down on us all that day and I have a fair idea who. You see this person although she died when I was just 4 weeks old; she’s been there a lot for me. I know who she is as there is an amazing story behind her death.
My Nanny was diagnosed with cancer and given weeks to live. My mum was pregnant early on me at the time; she hung on in until I was born. My mum and her mum became so close at that time; she was a strict mother who never really showed her kids affection. The day I came out of the hospital my nanny held me and cuddled me, She turned to my mother and gave her a huge hug and kiss, my mum said never in her life did she get this from her mum. My nanny told my mum, you did good girl and then she died 4 weeks later, she was never supposed to live to see me born but she did. I have always felt that she although I do not remember her is looking down on me. She has always been there and I can feel her around me. I believe that she made me re think my decision; she made me come to my senses and turn that car around.
I am not a coward, I know suicide is cowardly and an easy way out. But that’s not what it was about for me. I taught I could make my children’s life better and in an ideal world where the system worked I would have. It was a stupid decision and I realise that now but I would do ANYTHING for my kids and I would do anything to get them what they needed. I was not a coward I was being naive and trusting of the system. I am so glad I came to my senses but many do not. I was lucky.
I am still struggling for services for CRAZY JANE and I have never come across as many brick walls and deaf ears in my life. Even sign language wouldn’t work, although im not so sure the 2 finger salute is incorporated into the lamh sing language programme) it should be hehe. I’ll make sure to teach Mr fabulous that one.
Any way we will keep looking, pushing and begging for services and maybe someday before it is too late we will get something, anything is better than nothing. Im still waiting for my call back after my 100th message left on the speech and language department’s answering machine since before Xmas. What month we in, March, well maybe by June they’ll have returned my call. What a bunch of assholes, don’t get me started on the OT department. Isn’t it funny how they are getting away with this thou. And there is a loop hole in the system (yes that wonderful system) that is letting them
7 comments:
Looking for Blue Scrazy jane said...
Hey I, I don't have the words to respond to this - it is the ultimate indictment of the MEDICAL BOARD that their 'system' led you to believe that your kids might be better off without you. You are one fabulous Mum and an inspiration to so many. Oh and I have been up for a while listening to Smiley giggling in bed - I thought she was the only one who did this xx
March 12, 2010 10:58 PM
Jen said...
I totally understand that you love to hear Mr fabulous laugh, no matter what time of the day. HRH was up one night last week and we had great fun at 3.30 in the morning:) With regard to you thinking your family would be better off without you, I am so relieved that you realised this is not the case. Not only that but your FB family needs you too, very much hun. Services and brick walls in this country are shocking, to see your family treated this way infuriates me. Big hugs to all of you. Jen. xx
March 13, 2010 3:33 AM
Irish Mammy said...
It makes my blood boil reading this post, it really does. What is wrong with our health care system and its priorities? I can understand you have dark days when faced with such brick walls -- but never let the moods win. You are a fantastic mum and you have already fought so much, and are such an inspiration. Keep up the fight! xx
March 13, 2010 1:53 PM
Jean said...
yep I hear you, loud and clear hun. I'm so glad you still had the insight to pull back from the edge, but it's a horrible place to be. Hang in there xxx
March 14, 2010 2:41 PM
Andra said...
Glad you pulled back from that dark place and if ever you feel back there again you can come on here and get support and encouragement to keep going. xxx
March 14, 2010 2:58 PM
Petunia said...
Have nudged my toes out to the edge a few times and pulled back in over the years with the help of antidepressants and good friends. Hope you never feel that way again sweetie.
I live in Wexford and still remember well the day that Sharon Grace walked into the water with her two gorgeous little girls Mikahla and Abby ending all their lives. She had begged for help from the social workers and was turned away from Ely House as it was friday and the social worker didn't work weekends. She had packed cases for the girls with their stuff which was found at the waters edge. Another tragic case of not getting the help and services they so desperately needed. Heartbreaking xxx
March 15, 2010 9:45 AM
jazzygal said...
Don't know how to respond to this one I. All I can say is that I'm glad someone above was looking out for you that day and that you pulled yourself back.
It is appalling the power that the MEDICAL BOARD and this Government have and how much the lack of services can impact on us. It is so wrong, especially when it's been proven that the Therapies, when received in a timely fashion, are so effective.
That poor woman in Wexford Petunia...I remember it well. There were a number of cases around the same time. All let down by our Social Worker so called "Services".
You are a great mum I and you are EXACTLY what your children need. So stay strong missus! Hang in there. And like Andra says: we're all here.
March 18, 2010 2:58 PM
As I’m laying here awake im pondering over a conversation I had with a dear friend today. You see we got talking about depression and the dark places it can take us. We also got talking about the dark places it took us to as she also suffers from severe depression. She asked me a question no one really dared to ask me before, this is allowed, it was a question I realise I owed an explanation to. Especially to the true and loyal followers of this blog. I know I don’t owe anyone an explanation but I do feel that I owe this blog its explanation.
Ok so you all know the lead up to that day, but WHAT THE HELL WAS I THINKING?
I felt a failure; I couldn’t win Dr Roger’s. He beat me down every turn and step I made. I was powerless against him. He held the key to everything Crazy jane needed and I could not turn it. He hounded my thoughts as he hit me where it hurt. Im thick skinned, it takes a lot to hurt me, but my kids and my parenting skills, now that really hurt. Was he right in his opinion, HELL NO but I was at an all time low, I was mentally, physically and emotionally drained. I was at the edge, one gentle see breeze would have pushed me over, he was a hurricane.
I came to the conclusion that day that this was it; I was never going to win. I was watching my daughter struggle with this illness (and that’s the only name I have for it, it is an illness, it may not be curable but it is TREATABLE and will IMPROVE over the years with understanding, therapy, education and empathy) I could see more and more every day that she needed help I could no longer provide. I done a damn good job to get her this far and im proud of that, it was hard all round but we made it. Now thou it was time to get outside help, but WHERE? Well you would from Dr Rogers and his tailored service in this specialised field, but no not a chance in hell, you see don’t forget there is nothing wrong with Crazy jane in his eyes, yet 3 other medical professionals more qualified than him begged to differ.
So in my head this made sense. If I was to die, Crazy jane Mr fabulous and Lunatic john along with DH would be appointed a social worker, this super (in my head) social worker would then push and succeed in getting my kids all the help they needed. They would be looked after by a powerful force that Dr Rogers could not turn away. Crazy jane would get her therapy, her intervention, EVERYTHING. My kids would be better off in their care than mine.
Now in an ideal world that would make perfect sense and that would be how you would expect it to go down. But then I remembered, Social worker, em yea when you can manage to get hold of her/him. MEDICAL BOARD care, LOL don’t make me laugh, the MEDICAL BOARD is a disgrace, a massive failure to all on its waiting lists. Services, ah im almost hysterical with laughter, em no, lol services, you see then you’d be placed back on the queue that social services have, they couldn’t win argument never mind a court case, and Dr Roger’s, ah stop, he’d destroy them just the same as he destroyed me. So you see you really would think that a social worker meant something in this day and age, and you’d like to think they are, and some are great and really do get the job done, but most are not, as they too are fighting the same system as you and me. They are sometimes as powerless as you and me. Look at the New county case, the social workers tried for years to remove those kids, the courts ignored it. I don’t want to sound unfair towards social workers, as I said, some are great, and it’s the system failing them as much as it fails us. They cannot do their job because of this system either.
I love my kids so much and if me doing this for one minute could have made their lives better I would have done it hands down, but as I sat in my car that day I realised I am the only thing that can make their life better. I could have destroyed their life and my DH’s life further by doing what I stupidly taught could make their life better. Its mad how depression can make you think, can make you confused enough to do stupid things. If I had not of had that rethink im my car that day I dread to think of what more damage could have happened to my kids. Someone was looking down on us all that day and I have a fair idea who. You see this person although she died when I was just 4 weeks old; she’s been there a lot for me. I know who she is as there is an amazing story behind her death.
My Nanny was diagnosed with cancer and given weeks to live. My mum was pregnant early on me at the time; she hung on in until I was born. My mum and her mum became so close at that time; she was a strict mother who never really showed her kids affection. The day I came out of the hospital my nanny held me and cuddled me, She turned to my mother and gave her a huge hug and kiss, my mum said never in her life did she get this from her mum. My nanny told my mum, you did good girl and then she died 4 weeks later, she was never supposed to live to see me born but she did. I have always felt that she although I do not remember her is looking down on me. She has always been there and I can feel her around me. I believe that she made me re think my decision; she made me come to my senses and turn that car around.
I am not a coward, I know suicide is cowardly and an easy way out. But that’s not what it was about for me. I taught I could make my children’s life better and in an ideal world where the system worked I would have. It was a stupid decision and I realise that now but I would do ANYTHING for my kids and I would do anything to get them what they needed. I was not a coward I was being naive and trusting of the system. I am so glad I came to my senses but many do not. I was lucky.
I am still struggling for services for CRAZY JANE and I have never come across as many brick walls and deaf ears in my life. Even sign language wouldn’t work, although im not so sure the 2 finger salute is incorporated into the lamh sing language programme) it should be hehe. I’ll make sure to teach Mr fabulous that one.
Any way we will keep looking, pushing and begging for services and maybe someday before it is too late we will get something, anything is better than nothing. Im still waiting for my call back after my 100th message left on the speech and language department’s answering machine since before Xmas. What month we in, March, well maybe by June they’ll have returned my call. What a bunch of assholes, don’t get me started on the OT department. Isn’t it funny how they are getting away with this thou. And there is a loop hole in the system (yes that wonderful system) that is letting them
7 comments:
Looking for Blue Scrazy jane said...
Hey I, I don't have the words to respond to this - it is the ultimate indictment of the MEDICAL BOARD that their 'system' led you to believe that your kids might be better off without you. You are one fabulous Mum and an inspiration to so many. Oh and I have been up for a while listening to Smiley giggling in bed - I thought she was the only one who did this xx
March 12, 2010 10:58 PM
Jen said...
I totally understand that you love to hear Mr fabulous laugh, no matter what time of the day. HRH was up one night last week and we had great fun at 3.30 in the morning:) With regard to you thinking your family would be better off without you, I am so relieved that you realised this is not the case. Not only that but your FB family needs you too, very much hun. Services and brick walls in this country are shocking, to see your family treated this way infuriates me. Big hugs to all of you. Jen. xx
March 13, 2010 3:33 AM
Irish Mammy said...
It makes my blood boil reading this post, it really does. What is wrong with our health care system and its priorities? I can understand you have dark days when faced with such brick walls -- but never let the moods win. You are a fantastic mum and you have already fought so much, and are such an inspiration. Keep up the fight! xx
March 13, 2010 1:53 PM
Jean said...
yep I hear you, loud and clear hun. I'm so glad you still had the insight to pull back from the edge, but it's a horrible place to be. Hang in there xxx
March 14, 2010 2:41 PM
Andra said...
Glad you pulled back from that dark place and if ever you feel back there again you can come on here and get support and encouragement to keep going. xxx
March 14, 2010 2:58 PM
Petunia said...
Have nudged my toes out to the edge a few times and pulled back in over the years with the help of antidepressants and good friends. Hope you never feel that way again sweetie.
I live in Wexford and still remember well the day that Sharon Grace walked into the water with her two gorgeous little girls Mikahla and Abby ending all their lives. She had begged for help from the social workers and was turned away from Ely House as it was friday and the social worker didn't work weekends. She had packed cases for the girls with their stuff which was found at the waters edge. Another tragic case of not getting the help and services they so desperately needed. Heartbreaking xxx
March 15, 2010 9:45 AM
jazzygal said...
Don't know how to respond to this one I. All I can say is that I'm glad someone above was looking out for you that day and that you pulled yourself back.
It is appalling the power that the MEDICAL BOARD and this Government have and how much the lack of services can impact on us. It is so wrong, especially when it's been proven that the Therapies, when received in a timely fashion, are so effective.
That poor woman in Wexford Petunia...I remember it well. There were a number of cases around the same time. All let down by our Social Worker so called "Services".
You are a great mum I and you are EXACTLY what your children need. So stay strong missus! Hang in there. And like Andra says: we're all here.
March 18, 2010 2:58 PM
part 23 Trigger Happy
So why Triggers for the post name LOL heres why
So you plod along nicely with Autism and Aspergers, oh let’s not forget Brat baby and its hard but you keep plodding along then PLOP, SLAP, THUMP, BANG, it slaps you right in the nut and you are knocked for six. Triggers yes, but somebody pull the trigger and send me to my resting place PLEASE.
So we finally get to the bottom of the biting episode, Mr fabulous’s way of saying I’m not ready for playschool thanks very much. Yes as soon as we took him out, biting stopped and I got my cool, happy, easy going baby boy back, yes Mr fabulouss back in top form and doing great again. That simple, just didn’t want to go to play school, who knew lol so trigger found and all sorted.
To top that off I get a letter from Department Of Education to tell me that as Mr fabulous will be 4 in July that THEY feel his educational needs would be better met in a MAINSTREAM SCHOOL, yes you heard me right, a mainstream school, well they were lucky I didn’t open that letter till 6PM as I’m only an hour away from their offices, and by god I would have hunted the letter signature person B M yes you all know her well down, and I would have plopped Mr fabulous down on her desk and said REALLY, YOU THINK? How insulting and in your face was that letter, well em like how do you figure?? C***S!! then I would have went to financial and grabbed the joy of the department by the neck and shook her till I shook my tutors Home Tuition payment out of them, grrrrr what a useless, wasteful bunch of F*****s they all are.
On that note lol Mr fabulous actually went to the toilet in his special needs preschool, still will not sit on the loo at home as they have small loo there and he’s too nervous to sit up on a higher up loo but he did it, he did his first wee. Was so happy, I’m really hoping we can get him used to big loo now here at home.
Crazy jane had a very bad melt down the other day. It came from nowhere and in public view and also in front of my 2 friends. It all started over her getting excited then confused then panicked and then bang to the ground as she fell while in temper. She didn’t feel a thing until the next day either. She came down heavy on her face, it slid on the path and then her knee and her just recently broken elbow followed. It was such a nasty fall too. But I had to let loose on her in view of all who passed by and my 2 friends, it was not pleasant for anyone. I got so upset as I felt like I had failed her so badly. She has no services and no matter what I do to try get her one it fails, and it's not my fault at all its that pr**k Dr Rogers fault but again, I am her mum, and I cannot win with this son of a bitch no matter what I do so the failure and guilt card was dealt.
My poor friend Aine felt so sorry for Crazy jane and so did I. It’s embarrassing for Crazy jane to show this side of her and she fights hard not to let it come out, she’s very good at handling herself but just once every while she can’t and a major melt down occurs. This is why her supposed mental health service refuse to acknowledge that she has Aspergers even thou they never properly well actually assessed her. It’s not obvious, it does not stand out you have to see it and search for it. So her trigger, chronic tiredness. She was shattered, sleepless nights due to Lunatic john, up at 7.30 every Saturday for CTYI, she had a sleep over and was up at the mental hour of 7 am the following day, her friend is an early riser, Crazy jane IS NOT lol, but to be polite and courteous to her friend she got up with her and they had a good girlie laugh and giggle but then it just caught up on her later on and continued catching up on her during the week.
I have been working non stop lately and I’m exhausted. But when I take a break I just remember the amount of crap still left that we have to do for The creativity centre and I just keep working to try getting it done. We went shopping for a load of stuff the other day so that was cool, we picked our colour scheme and bought our couch, paint and sofas, then we got our cushions and stuff for the baby section which is gorgeous. I’m really looking forward to this, plus if I’m honest I need it as it’s my escape from the mammy bubble and then even more so from the mammy of 2 special needs, possibly 3 kids bubble.
I feel like such a neglectful friend to all my Face Book friends and our support network especially. I’m out of the loop with you all and I’m loosing track of blogs etc, but I’m slowly catching up again. Just know that I’m missing you all and I’ll be back to my usual non neglectful self soon and you’ll be sick of my regular status updates again lol. I’m thinking of you all, especially those who are sick at the min and have sick kids or to those of you having trouble with the services etc. I’m still hear supporting you and wishing you well xx
Today was an odd day for me. I woke at 7 in a bit of a panic as Mr fabulous was not awake yet, you see he’s up at 6.30 eeeeeeing , oooooooing and aaaaaaaaaing out of him at the top of his lungs and banging the window at the cat every morning. I got that eeeerie feeling again, yes I opened the door to find my baby in his bed with that funny shaped mouth again, the milk bottle complexion, the creamy coloured lips and blank expression, but this time he was just coming through it so did not look dead and feel ice cold and stiff. He had had another seizure. But I wasn’t panicked or scared; he was sooo tired and sleepy that I knew he was ok so I let him sleep. I had the monitor plugged in down stairs and I checked him regularly. I refused to go to the hospital as they could do no more than what I could do and he was able to be in his own bed, with his teddies, his own blankets and pillow and with no added noise than usual. He was happier that way. It took till 2 pm and a bit of gentle persuasion for him to get out of bed, but up he got and ate a big bowl of his favourite food, chicken noodles and he hasn’t stopped eating and giving out since, he’s back to his usual self. I reckon ill be too stressed to sleep tonight thou as ill be listening out and watching him like a hawk but I don’t care.
Lunatic john had all his bloods done a few weeks ago and he is being tested for Cystic Fibrosis, thyroid dysfunction, Live, Kidney, bladder function, haemoglobin count, anaemia, well everything really. The hospital is really pleased with his weight gain. He has gained just under 2 pound in 4 months, better than nothing as they say. He’s sleeping a little better, still a nightmare but less of one lol. I’ve gotten a great break from his constant whinging and horrendous squealing over the last few weeks as my mum has been minding him while I’m getting stuff done for The creativity centre. It’s been great to get that break. I’ve missed him loads but knew we both needed it.
My own health is a bit messed up as well. My thyroid packed in a good bit and I’ve been put on a new higher dose of eltroxin. I was so tired and just kept putting on weight and not shifting it no matter how little I ate. I also developed a pregnant belly look as my IBS was acting up. I looked like death walking, no matter how much I washed my hair it looked greasy. My skin looks dreadful and dehydrated. Ah I’m a wreck, yuck but I’m on the right track now and getting better. I got my hair chopped and layered again like I used to have and got my blond and copper highlights back in, I look so much healthier now with a lighter hair colour.
Just to add to things, my hamster Linnie whom I adore almost had a trip to the vet, his eye turned red and the vet said he could lose it yet, apparently hamsters develop glychoma for no reason and their eye bulges and pops out. Me and Crazy jane had dibs on which unfortunate got to take the eye out of the cage lol, then his eye went back to normal, now its red again, stupid hamster, I don’t know a MAD HOUSE I tell you. Then my stupid cat was stinking, I mean real bad, so I put it in the car and headed for the vet, went to turn the corner and couldn’t press my clutch, yes the cat had crawled under it, Jesus Christ had to slow the car down and hand break it to stop, stupid cat. Then he got some injections for gastric. I don’t know, now I got vet appointments as well as hospital and clinic appointments etc PML. Ahhh yes my life, want to trade places hehe
8 comments:
Jen said...
I have been thinking about you as I do miss your updates on FB. Its great to be filled in even though, yes girl, you do have a mad house. Take it easy (yeah I know, sorry, impossible)and hope The creativity centre goes really well:) Seriously impressed with Mr fabulous doing a wee in the toilet:) Jen.
March 11, 2010 12:18 PM
Anonymous said...
Helen Doyle Fitzgerald dont give up,your so brave and keep smiling.
March 11, 2010 12:50 PM
Anonymous said...
Joanne Mulvey Lovedthis bog...brill...thanks maddy
March 11, 2010 1:14 PM
Anonymous said...
Sandra Reilly I dont' know how you do it all - you're pretty frigging GREAT - you should have a big S tatooed onto your chest !!!!
Me lol no better that the rest of us chicks, we should all get one of them tattoed on
March 11, 2010 1:30 PM
Looking for Blue Scrazy jane said...
You are just amazing, you have sooo much energy, reading your blog is better than Red Bull, I'm now wide awake, just as well as so are all 3 upstairs, off to do the rounds now with a smile on my face picturing the cat under the clutch lol!
March 11, 2010 1:42 PM
claireh said...
Maddy, how the hell do u do it all? Sorry to hear bout crazy jane but everyone has bad days. shes such a trooper, a fab little girl. Just a pity this country has let her down so bad!
Such a relief to hear the fit wasnt too bad. Slepp is the best thing afterwards as your head feels like its been hit by a truck!!
And im still so angry for you over that mainstream letter!! couldnt believe it, talk about taking the piss!
Iv so much admiration for you girl but slow down, your makin the rest of us look bad :)
March 11, 2010 1:46 PM
I said...
oh hun that cat, if it didnt need the vet before the trip, it did after lol
he was all cuddled up on the front seat then next i knew GONE hehe, it was a fun moment slowing a car in 5th gear down and trying to turn corner (sharp bend) in one peace, thank god for country roads and no traffice
March 11, 2010 3:32 PM
Autimom said...
you really are a busy bee lately, make sure you dont forget bout some you time ok pet. Hope crazy janera is doin fine now and hope she not too worried, sending big hugs to her, mr fabulouss & lunatic john, to all of ye xxx
March 11, 2010 5:03 PM
So you plod along nicely with Autism and Aspergers, oh let’s not forget Brat baby and its hard but you keep plodding along then PLOP, SLAP, THUMP, BANG, it slaps you right in the nut and you are knocked for six. Triggers yes, but somebody pull the trigger and send me to my resting place PLEASE.
So we finally get to the bottom of the biting episode, Mr fabulous’s way of saying I’m not ready for playschool thanks very much. Yes as soon as we took him out, biting stopped and I got my cool, happy, easy going baby boy back, yes Mr fabulouss back in top form and doing great again. That simple, just didn’t want to go to play school, who knew lol so trigger found and all sorted.
To top that off I get a letter from Department Of Education to tell me that as Mr fabulous will be 4 in July that THEY feel his educational needs would be better met in a MAINSTREAM SCHOOL, yes you heard me right, a mainstream school, well they were lucky I didn’t open that letter till 6PM as I’m only an hour away from their offices, and by god I would have hunted the letter signature person B M yes you all know her well down, and I would have plopped Mr fabulous down on her desk and said REALLY, YOU THINK? How insulting and in your face was that letter, well em like how do you figure?? C***S!! then I would have went to financial and grabbed the joy of the department by the neck and shook her till I shook my tutors Home Tuition payment out of them, grrrrr what a useless, wasteful bunch of F*****s they all are.
On that note lol Mr fabulous actually went to the toilet in his special needs preschool, still will not sit on the loo at home as they have small loo there and he’s too nervous to sit up on a higher up loo but he did it, he did his first wee. Was so happy, I’m really hoping we can get him used to big loo now here at home.
Crazy jane had a very bad melt down the other day. It came from nowhere and in public view and also in front of my 2 friends. It all started over her getting excited then confused then panicked and then bang to the ground as she fell while in temper. She didn’t feel a thing until the next day either. She came down heavy on her face, it slid on the path and then her knee and her just recently broken elbow followed. It was such a nasty fall too. But I had to let loose on her in view of all who passed by and my 2 friends, it was not pleasant for anyone. I got so upset as I felt like I had failed her so badly. She has no services and no matter what I do to try get her one it fails, and it's not my fault at all its that pr**k Dr Rogers fault but again, I am her mum, and I cannot win with this son of a bitch no matter what I do so the failure and guilt card was dealt.
My poor friend Aine felt so sorry for Crazy jane and so did I. It’s embarrassing for Crazy jane to show this side of her and she fights hard not to let it come out, she’s very good at handling herself but just once every while she can’t and a major melt down occurs. This is why her supposed mental health service refuse to acknowledge that she has Aspergers even thou they never properly well actually assessed her. It’s not obvious, it does not stand out you have to see it and search for it. So her trigger, chronic tiredness. She was shattered, sleepless nights due to Lunatic john, up at 7.30 every Saturday for CTYI, she had a sleep over and was up at the mental hour of 7 am the following day, her friend is an early riser, Crazy jane IS NOT lol, but to be polite and courteous to her friend she got up with her and they had a good girlie laugh and giggle but then it just caught up on her later on and continued catching up on her during the week.
I have been working non stop lately and I’m exhausted. But when I take a break I just remember the amount of crap still left that we have to do for The creativity centre and I just keep working to try getting it done. We went shopping for a load of stuff the other day so that was cool, we picked our colour scheme and bought our couch, paint and sofas, then we got our cushions and stuff for the baby section which is gorgeous. I’m really looking forward to this, plus if I’m honest I need it as it’s my escape from the mammy bubble and then even more so from the mammy of 2 special needs, possibly 3 kids bubble.
I feel like such a neglectful friend to all my Face Book friends and our support network especially. I’m out of the loop with you all and I’m loosing track of blogs etc, but I’m slowly catching up again. Just know that I’m missing you all and I’ll be back to my usual non neglectful self soon and you’ll be sick of my regular status updates again lol. I’m thinking of you all, especially those who are sick at the min and have sick kids or to those of you having trouble with the services etc. I’m still hear supporting you and wishing you well xx
Today was an odd day for me. I woke at 7 in a bit of a panic as Mr fabulous was not awake yet, you see he’s up at 6.30 eeeeeeing , oooooooing and aaaaaaaaaing out of him at the top of his lungs and banging the window at the cat every morning. I got that eeeerie feeling again, yes I opened the door to find my baby in his bed with that funny shaped mouth again, the milk bottle complexion, the creamy coloured lips and blank expression, but this time he was just coming through it so did not look dead and feel ice cold and stiff. He had had another seizure. But I wasn’t panicked or scared; he was sooo tired and sleepy that I knew he was ok so I let him sleep. I had the monitor plugged in down stairs and I checked him regularly. I refused to go to the hospital as they could do no more than what I could do and he was able to be in his own bed, with his teddies, his own blankets and pillow and with no added noise than usual. He was happier that way. It took till 2 pm and a bit of gentle persuasion for him to get out of bed, but up he got and ate a big bowl of his favourite food, chicken noodles and he hasn’t stopped eating and giving out since, he’s back to his usual self. I reckon ill be too stressed to sleep tonight thou as ill be listening out and watching him like a hawk but I don’t care.
Lunatic john had all his bloods done a few weeks ago and he is being tested for Cystic Fibrosis, thyroid dysfunction, Live, Kidney, bladder function, haemoglobin count, anaemia, well everything really. The hospital is really pleased with his weight gain. He has gained just under 2 pound in 4 months, better than nothing as they say. He’s sleeping a little better, still a nightmare but less of one lol. I’ve gotten a great break from his constant whinging and horrendous squealing over the last few weeks as my mum has been minding him while I’m getting stuff done for The creativity centre. It’s been great to get that break. I’ve missed him loads but knew we both needed it.
My own health is a bit messed up as well. My thyroid packed in a good bit and I’ve been put on a new higher dose of eltroxin. I was so tired and just kept putting on weight and not shifting it no matter how little I ate. I also developed a pregnant belly look as my IBS was acting up. I looked like death walking, no matter how much I washed my hair it looked greasy. My skin looks dreadful and dehydrated. Ah I’m a wreck, yuck but I’m on the right track now and getting better. I got my hair chopped and layered again like I used to have and got my blond and copper highlights back in, I look so much healthier now with a lighter hair colour.
Just to add to things, my hamster Linnie whom I adore almost had a trip to the vet, his eye turned red and the vet said he could lose it yet, apparently hamsters develop glychoma for no reason and their eye bulges and pops out. Me and Crazy jane had dibs on which unfortunate got to take the eye out of the cage lol, then his eye went back to normal, now its red again, stupid hamster, I don’t know a MAD HOUSE I tell you. Then my stupid cat was stinking, I mean real bad, so I put it in the car and headed for the vet, went to turn the corner and couldn’t press my clutch, yes the cat had crawled under it, Jesus Christ had to slow the car down and hand break it to stop, stupid cat. Then he got some injections for gastric. I don’t know, now I got vet appointments as well as hospital and clinic appointments etc PML. Ahhh yes my life, want to trade places hehe
8 comments:
Jen said...
I have been thinking about you as I do miss your updates on FB. Its great to be filled in even though, yes girl, you do have a mad house. Take it easy (yeah I know, sorry, impossible)and hope The creativity centre goes really well:) Seriously impressed with Mr fabulous doing a wee in the toilet:) Jen.
March 11, 2010 12:18 PM
Anonymous said...
Helen Doyle Fitzgerald dont give up,your so brave and keep smiling.
March 11, 2010 12:50 PM
Anonymous said...
Joanne Mulvey Lovedthis bog...brill...thanks maddy
March 11, 2010 1:14 PM
Anonymous said...
Sandra Reilly I dont' know how you do it all - you're pretty frigging GREAT - you should have a big S tatooed onto your chest !!!!
Me lol no better that the rest of us chicks, we should all get one of them tattoed on
March 11, 2010 1:30 PM
Looking for Blue Scrazy jane said...
You are just amazing, you have sooo much energy, reading your blog is better than Red Bull, I'm now wide awake, just as well as so are all 3 upstairs, off to do the rounds now with a smile on my face picturing the cat under the clutch lol!
March 11, 2010 1:42 PM
claireh said...
Maddy, how the hell do u do it all? Sorry to hear bout crazy jane but everyone has bad days. shes such a trooper, a fab little girl. Just a pity this country has let her down so bad!
Such a relief to hear the fit wasnt too bad. Slepp is the best thing afterwards as your head feels like its been hit by a truck!!
And im still so angry for you over that mainstream letter!! couldnt believe it, talk about taking the piss!
Iv so much admiration for you girl but slow down, your makin the rest of us look bad :)
March 11, 2010 1:46 PM
I said...
oh hun that cat, if it didnt need the vet before the trip, it did after lol
he was all cuddled up on the front seat then next i knew GONE hehe, it was a fun moment slowing a car in 5th gear down and trying to turn corner (sharp bend) in one peace, thank god for country roads and no traffice
March 11, 2010 3:32 PM
Autimom said...
you really are a busy bee lately, make sure you dont forget bout some you time ok pet. Hope crazy janera is doin fine now and hope she not too worried, sending big hugs to her, mr fabulouss & lunatic john, to all of ye xxx
March 11, 2010 5:03 PM
part 22 MANIC
Well what can I say manic depression I do not have but im certainly manic at the moment. Life keeps swinging up and down and I cannot seem to balance it. I don’t even know where to start so that I can write about it so that it will make sense to all reading it.
Lunatic john, Jesus Christ that child, I will put him up for adoption before long lol. What the hell is up with this bloody child? Kiddie Pharmaton, well it worked for 3 days and that’s it, he’s back not eating and sleeping again but the massive ear infection he has just had could have a lot to do with that. He’s killing me, slowly painfully torturing me. I love this child to pieces but I cannot seem to function with him.
The squeal, may god forgive me but that squeal is unbearable, he cannot be alone ever, sleep, what’s that?
Mr fabulous is just impossible at the moment. He is dismantling everything and breaking everything. Biting, anything that he can, including his tutor. He gave her a massive skin breaking bite on her shoulder, I almost cried when I saw it. It’s a very bad bite and she down played but I knew she was hurt and in pain from it. She’s so good that she was trying not to make a big deal of it but it was BAD. He is also trying to squeeze Lunatic john’s head, Jesus he will crush him. I can only assume that when Lunatic john squeals that Mr fabulous thinks he is in pain so as Mr fabulous is constantly getting his head squeezed when he is off form, he thinks this is what Lunatic john needs too. I think the pinching is Mr fabulous’s way of giving deep pressure also.
All I can say its A NUT HOUSE RIGHT NOW
Crazy jane is really enjoying her architecture course in CTYI. Even thoe she is sooo shy and terrified looking every time we drop her in, she comes out smiling and bursting with chat about all she did.
Crazy jane wrote her first blog and she has almost 20 comments on her post and nearly 100 hits. She is so delighted and it really gave her a confidence and self esteem lift
She had so much fun writing it and I was like her PA typing it as she said it lol, we had a giggle doing it. She put a picture of her holding her favourite picture that she ever drew, she loves that picture. I had to laugh as Crazy jane is so vain at times and there where moments of vanity in the blog too.
Crazy jane is going through an odd time, she comes home from school, gets into her PJ’S and stays in all day. I hate when she does this as she loves being out doors. I keep asking if anything is wrong but she’s actually quite happy. I’ve been watching out for all the signs of depression and anxiety but there are none. I think she’s needing her own space from friends as she is so busy in school and she is loving school at the moment so I think she making so much more of an effort and that because she’s so happy in school she’s mixing more and concentrating more so she is just pure shattered when she comes home that she needs a time out from peers, although not from me which is nice but tiring also lol. She is also in an art class, brownies and CTYI every week and that is also a lot of outside interaction and she’s quite happy to maintain that and leave it at that lol.
I had a meeting in her school, I was dreading it but it was great, they are taking everything from the S***S report on board and going with it. We decided to keep her back a year and crazy jane is quite happy with that also. Everything is going really well and they have an excellent education plan for the rest of the year in place for Crazy jane. I might escape private therapy this year which will give me time to save up for it for next year, that will help loads as money is getting tighter and tighter at the moment and they keep cutting me more and more so that’s not helping.
My moods are swinging up and down all the time. Im still exhausted and drained from Lunatic john but im excited about a new project im doing with two other friends of mine. We have been providing art classes to a few kids privately in the art teachers house and my self and my friend where giving her a hand with the kids and materials etc. It got so popular that more kids joined in and were running out of room for them all.
We are now starting up this art class in the town, we are renting a room out and taking 15 kids per class for the 8 to 12 year olds and 10 per class for the 5 to 7 year olds. My self and my friend are fetac level 5 and 6 special needs qualified and we both have personal experience living with special needs and the artist has massive degree in art and also has personal experience with special needs and has worked with special needs in the past. We are hoping to provide this service to special needs children also.
This has been really good for me as it is keeping me focussed and busy. Im enjoying getting everything sorted and in place for it and I am really looking forward to helping out with it. It is nice as I have all these qualifications sitting there going to waist as I cannot work due to my emotional and mental health and my families circumstances so at least I can volunteer some small amount of my time to this. I really hope for the kid’s sake that this is a success as Aine is an amazing artist and great with kids, Crazy janera loves this art group and she is gaining so much from it in all ways possible.
Things are still major stressful and tiredness is crippling me and DH. Again were muddling through and dipping along the way but were managing. Lunatic john is back in hospital this week for his blood tests and to see a dietician so fingers crossed all goes well. I have to take Mr fabulous to the GP for full medical to see if there could be any cause to the sudden biting and pinching like a middle ear infection etc. His OT will get a behavioural psych involved too as he could seriously injure someone and especially another child, that would kill me all together. I really hope Mr fabulous calms down and this is not a continuing thing as it is so out of character from him. He is usually so placid and easy going but of course with the usual autism crap on top but manageable. Jesus every day with Mr fabulous is like groundhog day, it’s the same so you know in advance what your in for so that made it so do able, manageable, predictable, now scrap that and we have unpredictable, un manageable and with Lunatic john on top, haha now all I can say is ST ITAS do you have a spare bed as im a coming your way, seriously, they will bloody send me gaga
11 comments:
Petunia said...
Christ Maddy I'm tired just reading that! You must be exhausted chick :( I did get excited reading that Mr fabulous was squeezing Lunatic johns head as may think he has a headache from squeeling... empathy!! Go Mr fabulous :D (hey we have to look for the silver lining or we'll end up in straightjackets eh??) Good luck with the art classes missus, I hope you get as much out of them as the kids do xxx
February 21, 2010 4:38 AM
i said...
lol tracy yea i suppose mr fabulouss doing a good thing in his own way lol
as for straight jackets, mines ordered and in the post hehe
thanks hun, il keep you all posted on the classes xxxxx
keep the suggestion for special needs coming, we want to include and promote community spirit xx
February 21, 2010 5:06 AM
Lorraine said...
Maddy you sure are having a hard time (suppose you did not get the ear muffs) yet!! sorry to hear that Mr fabulous is playing up right now you could be right about inner ear infection can send them crazy as they cant tell you what is wrong things will be okay for you as you have your heart in the right place and best of luck with the classes dont know how you find the time !! Fantastic work done for Crazy jane on her blog what an artist xx
February 21, 2010 6:12 AM
Jen said...
Oh no, I will keep my fingers crossed that Lunatic john settles down again when his ear clears and the pharmaton kicks back in for him:) Loved Crazy janes blog. Hope the art classes are a huge success, fair dues to you girl, you are a powerhouse:) Jen.
February 21, 2010 9:03 AM
claireh said...
maddy how do u keep so cheerful. im drained just reading this and u get so much done.
Gotta say i admire ur positivity!!! I love that crazy jane is doing so well and ur relationship is so close
:)
February 21, 2010 1:26 PM
Looking for Blue Scrazy jane said...
Just amazing how you keep smiling and achieving so much and helping so many other people :D
February 21, 2010 3:01 PM
Anonymous said...
Lora Hawkins Aspiotis You, my dear, need a week at a spa somewhere! No kidding! You have so much on you that it is incredible. How do you do it? I sure hope that Mr fabulous calms down and that someone finds a way to help him with his behaviors, that has got to be so terribly frustrating.....I feel for you Honey, really I do because you've got a tough road you're on.
I know ... See Morewhat it's like to have mood swings because I am bipolar and I know that it is sometimes terrifying and sometimes you just feel so out-of-control and helpless. Don't know if that's how you feel but when I'm on that rollercoaster that's how I feel.
Love and Hugs to you Hun. You deserve to have a break, hope that you can find a way to give yourself a day of pampering and self-indulgence....wouldn't that be fun?
February 21, 2010 3:20 PM
I said...
hi guys thanx a mil for your lovely comments
im praying this is my bubble burst and im breaking out, this depression has been a really bad one, im still no way near recovered but im recovering and now that i have a goal, an aim, a target and a focus im able to release the pressure of everything else a bit. I just hope it doent bite me in the ass but if you dont try you will never know
im really trying to wash dr george out of my hair LOL
February 21, 2010 3:23 PM
Autimom said...
wow maddy, you really are having all things thrown at you all at once, and it seems like this art thing will be great for you too as well as the kids. YOU ARE SUCH AN AMAZING WOMAN xxx
February 22, 2010 3:25 PM
Anonymous said...
Just wanted to say..great post as usual. Bloody FB won't let me comment on your post.Delighted that Crazy jane is doing so well...I hope the boys settle down soon, and best of luck with the art classes,great idea xx
February 28, 2010 8:48 AM
Casdok said...
Volunteer work saved my sanity (my friends might disagree!). The art classess sound great.
Hope you get to the bottom of Mr fabulous biting as it is very painful - i remember it well from C.
Hang in there - your doing a great job.
March 10, 2010 1:40 AM
Lunatic john, Jesus Christ that child, I will put him up for adoption before long lol. What the hell is up with this bloody child? Kiddie Pharmaton, well it worked for 3 days and that’s it, he’s back not eating and sleeping again but the massive ear infection he has just had could have a lot to do with that. He’s killing me, slowly painfully torturing me. I love this child to pieces but I cannot seem to function with him.
The squeal, may god forgive me but that squeal is unbearable, he cannot be alone ever, sleep, what’s that?
Mr fabulous is just impossible at the moment. He is dismantling everything and breaking everything. Biting, anything that he can, including his tutor. He gave her a massive skin breaking bite on her shoulder, I almost cried when I saw it. It’s a very bad bite and she down played but I knew she was hurt and in pain from it. She’s so good that she was trying not to make a big deal of it but it was BAD. He is also trying to squeeze Lunatic john’s head, Jesus he will crush him. I can only assume that when Lunatic john squeals that Mr fabulous thinks he is in pain so as Mr fabulous is constantly getting his head squeezed when he is off form, he thinks this is what Lunatic john needs too. I think the pinching is Mr fabulous’s way of giving deep pressure also.
All I can say its A NUT HOUSE RIGHT NOW
Crazy jane is really enjoying her architecture course in CTYI. Even thoe she is sooo shy and terrified looking every time we drop her in, she comes out smiling and bursting with chat about all she did.
Crazy jane wrote her first blog and she has almost 20 comments on her post and nearly 100 hits. She is so delighted and it really gave her a confidence and self esteem lift
She had so much fun writing it and I was like her PA typing it as she said it lol, we had a giggle doing it. She put a picture of her holding her favourite picture that she ever drew, she loves that picture. I had to laugh as Crazy jane is so vain at times and there where moments of vanity in the blog too.
Crazy jane is going through an odd time, she comes home from school, gets into her PJ’S and stays in all day. I hate when she does this as she loves being out doors. I keep asking if anything is wrong but she’s actually quite happy. I’ve been watching out for all the signs of depression and anxiety but there are none. I think she’s needing her own space from friends as she is so busy in school and she is loving school at the moment so I think she making so much more of an effort and that because she’s so happy in school she’s mixing more and concentrating more so she is just pure shattered when she comes home that she needs a time out from peers, although not from me which is nice but tiring also lol. She is also in an art class, brownies and CTYI every week and that is also a lot of outside interaction and she’s quite happy to maintain that and leave it at that lol.
I had a meeting in her school, I was dreading it but it was great, they are taking everything from the S***S report on board and going with it. We decided to keep her back a year and crazy jane is quite happy with that also. Everything is going really well and they have an excellent education plan for the rest of the year in place for Crazy jane. I might escape private therapy this year which will give me time to save up for it for next year, that will help loads as money is getting tighter and tighter at the moment and they keep cutting me more and more so that’s not helping.
My moods are swinging up and down all the time. Im still exhausted and drained from Lunatic john but im excited about a new project im doing with two other friends of mine. We have been providing art classes to a few kids privately in the art teachers house and my self and my friend where giving her a hand with the kids and materials etc. It got so popular that more kids joined in and were running out of room for them all.
We are now starting up this art class in the town, we are renting a room out and taking 15 kids per class for the 8 to 12 year olds and 10 per class for the 5 to 7 year olds. My self and my friend are fetac level 5 and 6 special needs qualified and we both have personal experience living with special needs and the artist has massive degree in art and also has personal experience with special needs and has worked with special needs in the past. We are hoping to provide this service to special needs children also.
This has been really good for me as it is keeping me focussed and busy. Im enjoying getting everything sorted and in place for it and I am really looking forward to helping out with it. It is nice as I have all these qualifications sitting there going to waist as I cannot work due to my emotional and mental health and my families circumstances so at least I can volunteer some small amount of my time to this. I really hope for the kid’s sake that this is a success as Aine is an amazing artist and great with kids, Crazy janera loves this art group and she is gaining so much from it in all ways possible.
Things are still major stressful and tiredness is crippling me and DH. Again were muddling through and dipping along the way but were managing. Lunatic john is back in hospital this week for his blood tests and to see a dietician so fingers crossed all goes well. I have to take Mr fabulous to the GP for full medical to see if there could be any cause to the sudden biting and pinching like a middle ear infection etc. His OT will get a behavioural psych involved too as he could seriously injure someone and especially another child, that would kill me all together. I really hope Mr fabulous calms down and this is not a continuing thing as it is so out of character from him. He is usually so placid and easy going but of course with the usual autism crap on top but manageable. Jesus every day with Mr fabulous is like groundhog day, it’s the same so you know in advance what your in for so that made it so do able, manageable, predictable, now scrap that and we have unpredictable, un manageable and with Lunatic john on top, haha now all I can say is ST ITAS do you have a spare bed as im a coming your way, seriously, they will bloody send me gaga
11 comments:
Petunia said...
Christ Maddy I'm tired just reading that! You must be exhausted chick :( I did get excited reading that Mr fabulous was squeezing Lunatic johns head as may think he has a headache from squeeling... empathy!! Go Mr fabulous :D (hey we have to look for the silver lining or we'll end up in straightjackets eh??) Good luck with the art classes missus, I hope you get as much out of them as the kids do xxx
February 21, 2010 4:38 AM
i said...
lol tracy yea i suppose mr fabulouss doing a good thing in his own way lol
as for straight jackets, mines ordered and in the post hehe
thanks hun, il keep you all posted on the classes xxxxx
keep the suggestion for special needs coming, we want to include and promote community spirit xx
February 21, 2010 5:06 AM
Lorraine said...
Maddy you sure are having a hard time (suppose you did not get the ear muffs) yet!! sorry to hear that Mr fabulous is playing up right now you could be right about inner ear infection can send them crazy as they cant tell you what is wrong things will be okay for you as you have your heart in the right place and best of luck with the classes dont know how you find the time !! Fantastic work done for Crazy jane on her blog what an artist xx
February 21, 2010 6:12 AM
Jen said...
Oh no, I will keep my fingers crossed that Lunatic john settles down again when his ear clears and the pharmaton kicks back in for him:) Loved Crazy janes blog. Hope the art classes are a huge success, fair dues to you girl, you are a powerhouse:) Jen.
February 21, 2010 9:03 AM
claireh said...
maddy how do u keep so cheerful. im drained just reading this and u get so much done.
Gotta say i admire ur positivity!!! I love that crazy jane is doing so well and ur relationship is so close
:)
February 21, 2010 1:26 PM
Looking for Blue Scrazy jane said...
Just amazing how you keep smiling and achieving so much and helping so many other people :D
February 21, 2010 3:01 PM
Anonymous said...
Lora Hawkins Aspiotis You, my dear, need a week at a spa somewhere! No kidding! You have so much on you that it is incredible. How do you do it? I sure hope that Mr fabulous calms down and that someone finds a way to help him with his behaviors, that has got to be so terribly frustrating.....I feel for you Honey, really I do because you've got a tough road you're on.
I know ... See Morewhat it's like to have mood swings because I am bipolar and I know that it is sometimes terrifying and sometimes you just feel so out-of-control and helpless. Don't know if that's how you feel but when I'm on that rollercoaster that's how I feel.
Love and Hugs to you Hun. You deserve to have a break, hope that you can find a way to give yourself a day of pampering and self-indulgence....wouldn't that be fun?
February 21, 2010 3:20 PM
I said...
hi guys thanx a mil for your lovely comments
im praying this is my bubble burst and im breaking out, this depression has been a really bad one, im still no way near recovered but im recovering and now that i have a goal, an aim, a target and a focus im able to release the pressure of everything else a bit. I just hope it doent bite me in the ass but if you dont try you will never know
im really trying to wash dr george out of my hair LOL
February 21, 2010 3:23 PM
Autimom said...
wow maddy, you really are having all things thrown at you all at once, and it seems like this art thing will be great for you too as well as the kids. YOU ARE SUCH AN AMAZING WOMAN xxx
February 22, 2010 3:25 PM
Anonymous said...
Just wanted to say..great post as usual. Bloody FB won't let me comment on your post.Delighted that Crazy jane is doing so well...I hope the boys settle down soon, and best of luck with the art classes,great idea xx
February 28, 2010 8:48 AM
Casdok said...
Volunteer work saved my sanity (my friends might disagree!). The art classess sound great.
Hope you get to the bottom of Mr fabulous biting as it is very painful - i remember it well from C.
Hang in there - your doing a great job.
March 10, 2010 1:40 AM
part 21: lunatic john and tests
A lot has been happening since my last blog, it’s been like im in a spinning machine and im so dizzy and I cannot make it stop. I have been really down and out and completely exhausted lately. So tired that im avoiding people as I do not have the energy to have a conversation with them. My only contact with people is through face book, but im happy that way as I type not speak, and I can switch it off at any time I please, I can be rude and walk away and leave it lol.
Im really aggravated over the attitude of CRAZY JANE’s mental health service. He flat out accused me of wanting to stick any oul label on CRAZY JANE so that I don’t have to be responsible for how she behaves. I cannot get these words out of my head. Why? I don’t know, im so deeply hurt by him and his comments and he has done what I swore I would not let him do, put me in a deep depression again. The fact that im so tired is not helping me shrug him off like I know I should and normally would.
I went to see my NEW doctor, woohoo, she’s lovely. I show her all of CRAZY JANE’s reports and explain Dr George and show her his repost. She’s shocked. Even she cannot understand what is happening with him. She has explained that she has come close to many battles with him before. He is known to be pig headed and stubborn shit, she said, look forget this guy, he’s not going to change his mind. I explained about my last Doctor and her lack of penman ship skills and help. My new doctor is writing me the letters I need. As im speaking with her I break down. You see im so used to fighting and begging, she just asked me what I needed. I think I got so confused and just burst into tears. She said that she as my doctor can see that I am for real, that CRAZY JANE’s problems are real, that our situation is real. She explained that she is here to help me not make my life more stressful. I really was blown away by her kindness and sincerity.
I felt so comfortable that I told her everything about the latest bout before and now of depression. I mean everything I have been going through and my horror taughts and attempts to end it. She was so gutted for me that life has been so hard to it put me on this strange helpless road. She was so concerned that I needed a little pick me up to help me get through the day. That little pick me up goes by the name of efexor. I have the prescription but I never touched even just one. I gave it serious taught and even asked my Face Book buddies how they felt about them, and I considered it greatly. But then I also remembered that I need to understand my depression in my own head first not quick fix it.
I am not depressed with my life, my kids, my husband, my marriage; I am depressed from exhaustion of fighting a medical health service, education system, and social welfare system and that they are just so useless and so stupid. They do not listen to you, deny you your entitlements, and put you on waiting lists, they make you feel intimidated, demeaned, powerless, you actually start to take on the role of a street begger, any spare appointments there please, help the asd kid, please just an hour of therapy, please just an hour of your time, please assess my child, please stop being an arrogant ass and accept you were wrong with your diagnosis of my child, please community care can you see my child cause arrogant ass will not, please stop playing pass the parcel with my child, well you get my point surely. PLEASE PLEASE PLEASE.
Lunatic john’s appointment is soon, im dreading it as im frightened of the results, of Corse at this stage how could I not be. Im not frightened of a problem with him, im frightened that I don’t have the energy to fight for him as well. How many battles does one mother have to endure, im 34 years old, is this even possible that I could be this young and yet have lived my life twice over ?? It certainly feels like I have.
We all got the winter vomiting bug. Well i never have experienced anything that horrendous in my life. Poor DH blacked out twice, i was on my hands and knees as room was spinning and my poor two kids Crazy jane and Mr fabulous, oh my god, they were BAD. Crazy jane is never sick, ever, so she was rightly pissed off with this bug, she was barely able to stand she was that weak, i have never witnessed anything like it. Thankfully Lunatic john was in my mums for a sleep over and the bug passed by him, if that poor child had of got it, he was in hospital for sure. I would just like to say A BIG WHOPPING THANK YOU TO VILMA, my god woman, you are just an angel, my family would be lost without you. She came in and took care of us all, we were all so weak we could not get out of our beds. Bed clothes, pj's, destroyed with vomit and everything that comes with the winter vomiting bug. I really taught at one stage DH was going to have to go to hospital, he was blacking out, waking up on the floor and not remembering how and why he was there. I could not help him up as i could not stand. It was a vicious bug, but my waist line was very greatful LOL
The last few weeks Mr fabulous has been very restless, he is always at the door with his school bag. He keeps taking my car keys, mine and his jacket and standing at the door with his bag. It’s so bad outside we cannot leave the house. DH takes him shopping to try and get him out and about. He is so agitated being stuck in, even when he gets home from the shops he will refuse to take off his jacket and shoes. What is going through his head is anyone’s guess. We wrestle him to the ground nearly to get his jacket and shoes off (I try to kick the habit early and not entertain it)
Really I think Mr fabulous just wants to be Steve McQueen and do the great escape, so do I so I can’t blame him. Lunatic john is keeping us all awake at night and has temper tantrums and shakes in temper in the cot if we do not go to him. He is such an odd child. He does not need a bottle, nappy change anything, just constant attention. He even wakes from sleep to get it. We are so so tired and barely functioning. Mr fabulous is at his tolerance overload with Lunatic john’s high pitch cry, as am I. When he screeches Mr fabulous hugs me so tight and pinches me so hard that he bruises me. It really hurts but what can I or he do. I try giving really deep pressure on his head, joints and feet.
The day arrives, I set out on the school run, and the ice is thick on the ground. Oh no the phone call came, no transport so Mr fabulous cannot get to school. No no no, he really needs school today, he’s been at the door since 7am with his bag. School is open just no transport, fuck it, ill bring him. What was I thinking? I drive up, im slipping everywhere on the road, im almost there when reverse reverse reverse, a truck had jack knifed across the road, all blocked off. STUPID F’ing truck. On the way home im shaking as it’s even worse coming home than going. A hill, a mother fucking hill, oh shit, could my dinky Yaris get up that hill, hell no, I put my foot to the floor, almost there, just a little bit more, car cut out and car slides back down, only problem, car sliding sideways aghhhhhhh . I manage to sort it out and a very nice man gets my car up the hill, im shaking with fright. Poor Mr fabulous was so upset when he came home. He refused to come through the door. I managed to get him in but he was slamming his body against the very low sitting room window, shit he’ll end up going through it. I ring my wonderful friend Siobhan, HELP are you home for day, she was here to collect him within minutes, oh god she is a life saver. I was shaking with the stress.
Right now the drive to another county, I kind of recover, im still planking about the roads but there not half as bad, I took the motor way, longer but safer. My mum was with me. We arrive and are called in. The doctor is just so lovely. Again im pinching my self to make sure im not dreaming. She’s so interested in all I have to say, all the genetics in the family history, everything. She remembers me from Mr fabulous’s seizure. She’s asking all about him, and then we come to the Crazy jane situation. I explain all; she is horrified at what CRAZY JANE is being put through. She cannot believe all I endured from Dr George and my previous GP. When I told her my new GP she was as happy as she knows her well, now that was a major relief. She assured me that my family were in the best of hands. She gave me loads of advice and support with CRAZY JANE too. I was blown away by her level of interest and compassion that I got a bit weepy. She said Crazy jane sounded Asperger’s to her also and that considering the genetics that Dr George was a very stupid guy to dismiss without proper assessment.
She loved Lunatic john, she said she’s seen skinnier, and I was relieved by that. She is very concerned but she said that he is so lively, hyperactive (“ahem” we had a giggle and assumption on that one) and alert and chatty. She said that he is appearing very advanced for his age. She has ordered a celiac and thyroid function test on him. She is also sending him to dietician. She noted all the genetics and said that she will keep regular checks on him. I left feeling assured he was ok, that it was nothing major and that he was in good hands. I think that hospital appointment made me understand why I was depressed, something clicked with me that day. I had so many people ask me how the visit went and I realised how luck I am to have so many people care, online and in the flesh. I realised that life is what you make it and that even when your down and out there will always be someone to pick you up off your ass and make you feel better. I remembered a song that reminds me of Mr fabulous, Little wonders by Rob Thomas and I listened to it on YouTube over and over, I even wrote a blog little wonders the next day. I remembered that life is stressful and if you let it beat you it made the little things in life so insignificant that you forget to appreciate them.
I started to realise that I could get through this bout of depression without medication. I know how to get through it and what you do and avoid doing so I’ll try all of that first, medication if and only I cannot get through it. Lunatic john’s scream is so horrendous that I now have to put him in a different room when he starts and nothing I do pacifies him. I start to almost shake and jump with nerves when he starts it. It is just unbearable and yet he is such a good baby and so happy and jolly normally, just that squeal is penetrating.
I have accepted that Dr Ass George is not going to change his mind about CRAZY JANE. Even a professional friend of mine read the report from S***s and told me I could challenge him big time with their report but it is a fight I cannot be dealing with right now. I’m praying that the meeting next Tuesday with her school will get her the help she needs and that they can work more with her. I am looking into private therapy if I find she’s struggling too much, I cannot wait on the community care team any longer, hey the speech and language department wont even return my calls, now that’s insane.
I am starting to come around, I’m even starting to get dressed again lol. I found that the hardest, I was struggling to get everything done in the house, get kids to school, get kids bathed etc that I was realising that I was still in pj’s or pj top under huddy top with tracky bottoms on, that’s so not me lol. I am a real people person and yet I talked to no one, again, that’s really not me. I hate being stuck in the house, yet I only left if I absolutely HAD to.
I met up with a lot of the face book girls and we had a night away in another county. We had a lovely time; it was certainly different but really lovely. The girls were the sweetest and nicest bunch. I think we laughed most of the night and it was exactly what I needed. We are all going to try making it a regular thing.
I received a letter that my carers allowance is being cut by half, can you believe that. How in their right mind did they think that oh well we will means test her and ah she does not need it, lets cut it by half. I was disgusted. I wrote my appeal letter while in utter temper as if I had of calmed down I would have bottled it and not said the half of what I should and would have liked to. I have major expenses with a child minder on a Thursday so I can get a break, in home support that I pay towards along with the brothers, all the extra activities and resources for the kids, a 1 year old baby so nappies, formula, wipes, all that crap. kids with ADHD so a lot of replacements have to be made when they break stuff. Sensory equipment, toys and private therapies now also. I have to seek a play therapist for Mr fabulous privately as MEDICAL BOARD, ah yea right, Art therapy for CRAZY JANE, CTYI for CRAZY JANE, dancing for CRAZY JANE, swimming for Mr fabulous and CRAZY JANE, horse riding for CRAZY JANE, like I can afford a 40 euro cut, assholes. I know I must be on the mend as I didn’t cry and let it drag me down, I fought back, Im a natural fighter so I have to be getting some strength back. See my appeal letter here @
I think knowing Lunatic john is not in any life threatening danger has my nerves at ease. My lovely friend Sandra advised me to put Lunatic john on kiddie Pharmaton, I did, and guess what, the little bugger is eating a full bowl of potatoes veg and gravy. He is even starting to sleep for a good 7 hours interrupted. Im feeling so much more human again. Im still looking like shite lol but im more with it. Im functioning at a manageable level. Today was a biggy. I got up had a shower, got dressed and went to the parent toddler group, we are a well knit group us ladies and they are the best in the world. Yes SHES back, maddies back, it’s still a work in progress but im back and im smiling again.
Now for the next phase: potty training a tugger child. You know the child that cannot leave a certain body part alone, yep that The Fabulous Mr fabulous for you. Oh what great fun awaits me.
13 comments:
Jean said...
You deserve a girlie spa weekend hun...any chance you could get one??
It's no wonder you're depressed...your nerves have been in overdrive for so long that they must be burnt out.
Thank the stars you have some good docs on board at last.
xxx
February 10, 2010 2:18 PM
Irish Mammy said...
Good on you, you are very strong (look at how much you have accomplished!) and you will pull through xx Great about that female doctor I think you know Dr George had a lot to do with your depression, maybe try and steer clear of him if you can. Good luck with the potty training, my bundle of joy had loose poos tonight that dripped out and down and all over the place. Oh the joys!
February 10, 2010 2:22 PM
i said...
thanx girls, im so luccrazy jane that my mum is the best in the world and she lets me escape a lot at weekends. i had a girlie one last week and a rosemantic one this week lol
hope your feeling better too jeanie xx
oh god irish mammy, i hate those nappies, yuck. good luck with the training, were at sitting on and getting "feel" for things, pardon the pun, hehe poor mr fabulous will never live his habbit down pml
thanx guys xxxx
February 10, 2010 2:28 PM
Anonymous said...
You give me great inspiration girl I hope some day I can put together a blog like you and Jean and everyone that has been so honest in sharing their personal experiences xxx
February 10, 2010 2:33 PM
Anonymous said...
its great things are looking up maddy! great that lunatic john is eating his dinners!!! you are doing a fab job, in spite of peope like dr george. keep it up, well done you! (i want a signed copy of the book!!)
February 10, 2010 2:34 PM
Anonymous said...
Just read your blog. Keep up the fight (I know easier said than done). You're a great mum. I couldn't do the half of what you're doing. And thanks for following my blog! Hugs
February 10, 2010 2:46 PM
oddityaud said...
Fab blog, I love it. It takes so much courage to be able to sit down and write so open and honestly. I cant wait to read your book xxx
February 10, 2010 3:14 PM
Lora said...
Wow! You have been through the mill haven't you? My heart goes out to you Maddie because even though you are a fighter it is still very hard and sometimes you just lose it and break down and have to cry....I've been there. It's perfectly natural. You are such a fantastic mother and you have so much to take care of I truly admire you!!!! Honestly I do!!! It is no wonder that you have a bought of depression anybody would! I take medication but if you choose not to then I wish you well and that it works out for you. It might be a bit harder for you because medication can help but it is your choice and I support you 100%! I treasure the friendship that we have here on facebook and I always look forward to hearing from you and reading about you and your family. You are a supermom indeed and a super friend!!!!
February 10, 2010 4:11 PM
Jen said...
Ah hun, I am so sorry to hear you are so down. But I understand it too, I don't think anyone could stay 'up' having been through what you have experienced. I hope your new GP continues to help like this, it will make all the difference to have someone fighting your corner:) Massive hug to you. Jen. xx
February 11, 2010 2:42 AM
Anonymous said...
Comment by claire louise 6 hours ago God thats a rant and a half. I sound like u a lot Of the time.
I hear my own voice in my head telling me to give up the war but I can't u 2 have to stay strong. I had such a hard to years getting him assessed that I ended up o antidepressants. I was worn down by all the services u have listed. Once He was diagnosed nothing improved In fact it was worse, I m not being silly wen I tell u his school hated me. THEY WERE TELLING HIS DR AT THAT THEY HAD NO CONCERNS AT SCHOOL ONLY HIS ATTENDANCE WAS A PROBLEM. OMG thats only because they would not help he was not sleeping and and had a huge range of other problems. Main on being sensory problems he was refusing to wear everything, Eat anything and so on. When I did start getting him there they would make me feel useless as he was likely to be an 1hr late ( Meaning so was his siter ) His been diagnosed 1 yr and the school have me up in court for that 5 months he was in and out. Im going on the 30th March. Now they phone me everyday asking me to come down and sort him outb as his being rude running away hitting swearing u name it his there doing it. Now this is a far cry form 2 yr ago when they were saying nope it not at school just home making it look like parenting. I found out that after a whole yr they dont have his formal diagnosis on paper. OMG and they are havin me up in court. I phoned the dr who diagnosed him and she was out raged saying how comes as we had the meeting and the Senco comfrimed she had it and was yet to share it with class teacher. God one yr later that has not happened I was a little more then SHOCKED when I discovered he was not getting extra help and wen they said they will not assess for statement I wanted to kill um.
Are things better no they are worse then ever the only thing better is me. Reason one day I woke up Opened my letters to read G may be excluded. ( U cant statement becoz his behaviour is not as bad as it can be they told me lol. Yet they want to exclude him ) I looked at my son and I knew that I had to be his voice his only support his only hope to get what he should get from life ( I just hope court see that and dont bang me up :( Has happened to a friend of a friend of mine ) What Im saying it DO NOT GET DEPRESSED OR THEY ARE WINNING. THING IS THEY THINK U GET FED UP AND FALL APART OR WALK AWAY. THEY HATE US COZ THAT ANIT GONNA HAPPEN.xxx
Chine up she needs mummy.x
February 11, 2010 1:26 PM
Anonymous said...
Comment by Venessa Brown 22 hours agoI know how you are feeling... I am going through the same thing with the educational service and school. So I have made my complaints to everyone that deals with my son. They cannot say to me, that I did not go through the proper channels as I feel that putting pen to paper works instead of talking with these non educated, lack of empathy and willingness to support our children. I think it is all about saving money or who makes the most noise.... Complain to your Local MP, the local authorities and education authorities about what you are experiencing.. Oh yeh complain to Ofsted....
February 11, 2010 1:26 PM
Sandra M said...
God hun you have been going through so much - sending all my love and hugs,you are so strong and a role model for everyone. You should be very proud of your strength and courage to keep fighting and writing. Pharmaton rocks :)
February 11, 2010 1:56 PM
popsie said...
hi there
another interesting and enjoyable post. am with you all the way on your journey, as i have similar struggles especially with misunderstood asperger son. i think us mums of kids with autism all suffer depression at times and your right it is probably exhaustion looking for services. i find walks alone are the cure for me i push myself out that door and plug in the earphones to drown out the thoughts every day and it keeps me afloat! good luck i love your blog x
February 14, 2010 2:07 AM
Im really aggravated over the attitude of CRAZY JANE’s mental health service. He flat out accused me of wanting to stick any oul label on CRAZY JANE so that I don’t have to be responsible for how she behaves. I cannot get these words out of my head. Why? I don’t know, im so deeply hurt by him and his comments and he has done what I swore I would not let him do, put me in a deep depression again. The fact that im so tired is not helping me shrug him off like I know I should and normally would.
I went to see my NEW doctor, woohoo, she’s lovely. I show her all of CRAZY JANE’s reports and explain Dr George and show her his repost. She’s shocked. Even she cannot understand what is happening with him. She has explained that she has come close to many battles with him before. He is known to be pig headed and stubborn shit, she said, look forget this guy, he’s not going to change his mind. I explained about my last Doctor and her lack of penman ship skills and help. My new doctor is writing me the letters I need. As im speaking with her I break down. You see im so used to fighting and begging, she just asked me what I needed. I think I got so confused and just burst into tears. She said that she as my doctor can see that I am for real, that CRAZY JANE’s problems are real, that our situation is real. She explained that she is here to help me not make my life more stressful. I really was blown away by her kindness and sincerity.
I felt so comfortable that I told her everything about the latest bout before and now of depression. I mean everything I have been going through and my horror taughts and attempts to end it. She was so gutted for me that life has been so hard to it put me on this strange helpless road. She was so concerned that I needed a little pick me up to help me get through the day. That little pick me up goes by the name of efexor. I have the prescription but I never touched even just one. I gave it serious taught and even asked my Face Book buddies how they felt about them, and I considered it greatly. But then I also remembered that I need to understand my depression in my own head first not quick fix it.
I am not depressed with my life, my kids, my husband, my marriage; I am depressed from exhaustion of fighting a medical health service, education system, and social welfare system and that they are just so useless and so stupid. They do not listen to you, deny you your entitlements, and put you on waiting lists, they make you feel intimidated, demeaned, powerless, you actually start to take on the role of a street begger, any spare appointments there please, help the asd kid, please just an hour of therapy, please just an hour of your time, please assess my child, please stop being an arrogant ass and accept you were wrong with your diagnosis of my child, please community care can you see my child cause arrogant ass will not, please stop playing pass the parcel with my child, well you get my point surely. PLEASE PLEASE PLEASE.
Lunatic john’s appointment is soon, im dreading it as im frightened of the results, of Corse at this stage how could I not be. Im not frightened of a problem with him, im frightened that I don’t have the energy to fight for him as well. How many battles does one mother have to endure, im 34 years old, is this even possible that I could be this young and yet have lived my life twice over ?? It certainly feels like I have.
We all got the winter vomiting bug. Well i never have experienced anything that horrendous in my life. Poor DH blacked out twice, i was on my hands and knees as room was spinning and my poor two kids Crazy jane and Mr fabulous, oh my god, they were BAD. Crazy jane is never sick, ever, so she was rightly pissed off with this bug, she was barely able to stand she was that weak, i have never witnessed anything like it. Thankfully Lunatic john was in my mums for a sleep over and the bug passed by him, if that poor child had of got it, he was in hospital for sure. I would just like to say A BIG WHOPPING THANK YOU TO VILMA, my god woman, you are just an angel, my family would be lost without you. She came in and took care of us all, we were all so weak we could not get out of our beds. Bed clothes, pj's, destroyed with vomit and everything that comes with the winter vomiting bug. I really taught at one stage DH was going to have to go to hospital, he was blacking out, waking up on the floor and not remembering how and why he was there. I could not help him up as i could not stand. It was a vicious bug, but my waist line was very greatful LOL
The last few weeks Mr fabulous has been very restless, he is always at the door with his school bag. He keeps taking my car keys, mine and his jacket and standing at the door with his bag. It’s so bad outside we cannot leave the house. DH takes him shopping to try and get him out and about. He is so agitated being stuck in, even when he gets home from the shops he will refuse to take off his jacket and shoes. What is going through his head is anyone’s guess. We wrestle him to the ground nearly to get his jacket and shoes off (I try to kick the habit early and not entertain it)
Really I think Mr fabulous just wants to be Steve McQueen and do the great escape, so do I so I can’t blame him. Lunatic john is keeping us all awake at night and has temper tantrums and shakes in temper in the cot if we do not go to him. He is such an odd child. He does not need a bottle, nappy change anything, just constant attention. He even wakes from sleep to get it. We are so so tired and barely functioning. Mr fabulous is at his tolerance overload with Lunatic john’s high pitch cry, as am I. When he screeches Mr fabulous hugs me so tight and pinches me so hard that he bruises me. It really hurts but what can I or he do. I try giving really deep pressure on his head, joints and feet.
The day arrives, I set out on the school run, and the ice is thick on the ground. Oh no the phone call came, no transport so Mr fabulous cannot get to school. No no no, he really needs school today, he’s been at the door since 7am with his bag. School is open just no transport, fuck it, ill bring him. What was I thinking? I drive up, im slipping everywhere on the road, im almost there when reverse reverse reverse, a truck had jack knifed across the road, all blocked off. STUPID F’ing truck. On the way home im shaking as it’s even worse coming home than going. A hill, a mother fucking hill, oh shit, could my dinky Yaris get up that hill, hell no, I put my foot to the floor, almost there, just a little bit more, car cut out and car slides back down, only problem, car sliding sideways aghhhhhhh . I manage to sort it out and a very nice man gets my car up the hill, im shaking with fright. Poor Mr fabulous was so upset when he came home. He refused to come through the door. I managed to get him in but he was slamming his body against the very low sitting room window, shit he’ll end up going through it. I ring my wonderful friend Siobhan, HELP are you home for day, she was here to collect him within minutes, oh god she is a life saver. I was shaking with the stress.
Right now the drive to another county, I kind of recover, im still planking about the roads but there not half as bad, I took the motor way, longer but safer. My mum was with me. We arrive and are called in. The doctor is just so lovely. Again im pinching my self to make sure im not dreaming. She’s so interested in all I have to say, all the genetics in the family history, everything. She remembers me from Mr fabulous’s seizure. She’s asking all about him, and then we come to the Crazy jane situation. I explain all; she is horrified at what CRAZY JANE is being put through. She cannot believe all I endured from Dr George and my previous GP. When I told her my new GP she was as happy as she knows her well, now that was a major relief. She assured me that my family were in the best of hands. She gave me loads of advice and support with CRAZY JANE too. I was blown away by her level of interest and compassion that I got a bit weepy. She said Crazy jane sounded Asperger’s to her also and that considering the genetics that Dr George was a very stupid guy to dismiss without proper assessment.
She loved Lunatic john, she said she’s seen skinnier, and I was relieved by that. She is very concerned but she said that he is so lively, hyperactive (“ahem” we had a giggle and assumption on that one) and alert and chatty. She said that he is appearing very advanced for his age. She has ordered a celiac and thyroid function test on him. She is also sending him to dietician. She noted all the genetics and said that she will keep regular checks on him. I left feeling assured he was ok, that it was nothing major and that he was in good hands. I think that hospital appointment made me understand why I was depressed, something clicked with me that day. I had so many people ask me how the visit went and I realised how luck I am to have so many people care, online and in the flesh. I realised that life is what you make it and that even when your down and out there will always be someone to pick you up off your ass and make you feel better. I remembered a song that reminds me of Mr fabulous, Little wonders by Rob Thomas and I listened to it on YouTube over and over, I even wrote a blog little wonders the next day. I remembered that life is stressful and if you let it beat you it made the little things in life so insignificant that you forget to appreciate them.
I started to realise that I could get through this bout of depression without medication. I know how to get through it and what you do and avoid doing so I’ll try all of that first, medication if and only I cannot get through it. Lunatic john’s scream is so horrendous that I now have to put him in a different room when he starts and nothing I do pacifies him. I start to almost shake and jump with nerves when he starts it. It is just unbearable and yet he is such a good baby and so happy and jolly normally, just that squeal is penetrating.
I have accepted that Dr Ass George is not going to change his mind about CRAZY JANE. Even a professional friend of mine read the report from S***s and told me I could challenge him big time with their report but it is a fight I cannot be dealing with right now. I’m praying that the meeting next Tuesday with her school will get her the help she needs and that they can work more with her. I am looking into private therapy if I find she’s struggling too much, I cannot wait on the community care team any longer, hey the speech and language department wont even return my calls, now that’s insane.
I am starting to come around, I’m even starting to get dressed again lol. I found that the hardest, I was struggling to get everything done in the house, get kids to school, get kids bathed etc that I was realising that I was still in pj’s or pj top under huddy top with tracky bottoms on, that’s so not me lol. I am a real people person and yet I talked to no one, again, that’s really not me. I hate being stuck in the house, yet I only left if I absolutely HAD to.
I met up with a lot of the face book girls and we had a night away in another county. We had a lovely time; it was certainly different but really lovely. The girls were the sweetest and nicest bunch. I think we laughed most of the night and it was exactly what I needed. We are all going to try making it a regular thing.
I received a letter that my carers allowance is being cut by half, can you believe that. How in their right mind did they think that oh well we will means test her and ah she does not need it, lets cut it by half. I was disgusted. I wrote my appeal letter while in utter temper as if I had of calmed down I would have bottled it and not said the half of what I should and would have liked to. I have major expenses with a child minder on a Thursday so I can get a break, in home support that I pay towards along with the brothers, all the extra activities and resources for the kids, a 1 year old baby so nappies, formula, wipes, all that crap. kids with ADHD so a lot of replacements have to be made when they break stuff. Sensory equipment, toys and private therapies now also. I have to seek a play therapist for Mr fabulous privately as MEDICAL BOARD, ah yea right, Art therapy for CRAZY JANE, CTYI for CRAZY JANE, dancing for CRAZY JANE, swimming for Mr fabulous and CRAZY JANE, horse riding for CRAZY JANE, like I can afford a 40 euro cut, assholes. I know I must be on the mend as I didn’t cry and let it drag me down, I fought back, Im a natural fighter so I have to be getting some strength back. See my appeal letter here @
I think knowing Lunatic john is not in any life threatening danger has my nerves at ease. My lovely friend Sandra advised me to put Lunatic john on kiddie Pharmaton, I did, and guess what, the little bugger is eating a full bowl of potatoes veg and gravy. He is even starting to sleep for a good 7 hours interrupted. Im feeling so much more human again. Im still looking like shite lol but im more with it. Im functioning at a manageable level. Today was a biggy. I got up had a shower, got dressed and went to the parent toddler group, we are a well knit group us ladies and they are the best in the world. Yes SHES back, maddies back, it’s still a work in progress but im back and im smiling again.
Now for the next phase: potty training a tugger child. You know the child that cannot leave a certain body part alone, yep that The Fabulous Mr fabulous for you. Oh what great fun awaits me.
13 comments:
Jean said...
You deserve a girlie spa weekend hun...any chance you could get one??
It's no wonder you're depressed...your nerves have been in overdrive for so long that they must be burnt out.
Thank the stars you have some good docs on board at last.
xxx
February 10, 2010 2:18 PM
Irish Mammy said...
Good on you, you are very strong (look at how much you have accomplished!) and you will pull through xx Great about that female doctor I think you know Dr George had a lot to do with your depression, maybe try and steer clear of him if you can. Good luck with the potty training, my bundle of joy had loose poos tonight that dripped out and down and all over the place. Oh the joys!
February 10, 2010 2:22 PM
i said...
thanx girls, im so luccrazy jane that my mum is the best in the world and she lets me escape a lot at weekends. i had a girlie one last week and a rosemantic one this week lol
hope your feeling better too jeanie xx
oh god irish mammy, i hate those nappies, yuck. good luck with the training, were at sitting on and getting "feel" for things, pardon the pun, hehe poor mr fabulous will never live his habbit down pml
thanx guys xxxx
February 10, 2010 2:28 PM
Anonymous said...
You give me great inspiration girl I hope some day I can put together a blog like you and Jean and everyone that has been so honest in sharing their personal experiences xxx
February 10, 2010 2:33 PM
Anonymous said...
its great things are looking up maddy! great that lunatic john is eating his dinners!!! you are doing a fab job, in spite of peope like dr george. keep it up, well done you! (i want a signed copy of the book!!)
February 10, 2010 2:34 PM
Anonymous said...
Just read your blog. Keep up the fight (I know easier said than done). You're a great mum. I couldn't do the half of what you're doing. And thanks for following my blog! Hugs
February 10, 2010 2:46 PM
oddityaud said...
Fab blog, I love it. It takes so much courage to be able to sit down and write so open and honestly. I cant wait to read your book xxx
February 10, 2010 3:14 PM
Lora said...
Wow! You have been through the mill haven't you? My heart goes out to you Maddie because even though you are a fighter it is still very hard and sometimes you just lose it and break down and have to cry....I've been there. It's perfectly natural. You are such a fantastic mother and you have so much to take care of I truly admire you!!!! Honestly I do!!! It is no wonder that you have a bought of depression anybody would! I take medication but if you choose not to then I wish you well and that it works out for you. It might be a bit harder for you because medication can help but it is your choice and I support you 100%! I treasure the friendship that we have here on facebook and I always look forward to hearing from you and reading about you and your family. You are a supermom indeed and a super friend!!!!
February 10, 2010 4:11 PM
Jen said...
Ah hun, I am so sorry to hear you are so down. But I understand it too, I don't think anyone could stay 'up' having been through what you have experienced. I hope your new GP continues to help like this, it will make all the difference to have someone fighting your corner:) Massive hug to you. Jen. xx
February 11, 2010 2:42 AM
Anonymous said...
Comment by claire louise 6 hours ago God thats a rant and a half. I sound like u a lot Of the time.
I hear my own voice in my head telling me to give up the war but I can't u 2 have to stay strong. I had such a hard to years getting him assessed that I ended up o antidepressants. I was worn down by all the services u have listed. Once He was diagnosed nothing improved In fact it was worse, I m not being silly wen I tell u his school hated me. THEY WERE TELLING HIS DR AT THAT THEY HAD NO CONCERNS AT SCHOOL ONLY HIS ATTENDANCE WAS A PROBLEM. OMG thats only because they would not help he was not sleeping and and had a huge range of other problems. Main on being sensory problems he was refusing to wear everything, Eat anything and so on. When I did start getting him there they would make me feel useless as he was likely to be an 1hr late ( Meaning so was his siter ) His been diagnosed 1 yr and the school have me up in court for that 5 months he was in and out. Im going on the 30th March. Now they phone me everyday asking me to come down and sort him outb as his being rude running away hitting swearing u name it his there doing it. Now this is a far cry form 2 yr ago when they were saying nope it not at school just home making it look like parenting. I found out that after a whole yr they dont have his formal diagnosis on paper. OMG and they are havin me up in court. I phoned the dr who diagnosed him and she was out raged saying how comes as we had the meeting and the Senco comfrimed she had it and was yet to share it with class teacher. God one yr later that has not happened I was a little more then SHOCKED when I discovered he was not getting extra help and wen they said they will not assess for statement I wanted to kill um.
Are things better no they are worse then ever the only thing better is me. Reason one day I woke up Opened my letters to read G may be excluded. ( U cant statement becoz his behaviour is not as bad as it can be they told me lol. Yet they want to exclude him ) I looked at my son and I knew that I had to be his voice his only support his only hope to get what he should get from life ( I just hope court see that and dont bang me up :( Has happened to a friend of a friend of mine ) What Im saying it DO NOT GET DEPRESSED OR THEY ARE WINNING. THING IS THEY THINK U GET FED UP AND FALL APART OR WALK AWAY. THEY HATE US COZ THAT ANIT GONNA HAPPEN.xxx
Chine up she needs mummy.x
February 11, 2010 1:26 PM
Anonymous said...
Comment by Venessa Brown 22 hours agoI know how you are feeling... I am going through the same thing with the educational service and school. So I have made my complaints to everyone that deals with my son. They cannot say to me, that I did not go through the proper channels as I feel that putting pen to paper works instead of talking with these non educated, lack of empathy and willingness to support our children. I think it is all about saving money or who makes the most noise.... Complain to your Local MP, the local authorities and education authorities about what you are experiencing.. Oh yeh complain to Ofsted....
February 11, 2010 1:26 PM
Sandra M said...
God hun you have been going through so much - sending all my love and hugs,you are so strong and a role model for everyone. You should be very proud of your strength and courage to keep fighting and writing. Pharmaton rocks :)
February 11, 2010 1:56 PM
popsie said...
hi there
another interesting and enjoyable post. am with you all the way on your journey, as i have similar struggles especially with misunderstood asperger son. i think us mums of kids with autism all suffer depression at times and your right it is probably exhaustion looking for services. i find walks alone are the cure for me i push myself out that door and plug in the earphones to drown out the thoughts every day and it keeps me afloat! good luck i love your blog x
February 14, 2010 2:07 AM
part 20 lunatic john's Turn
So Now what I hear you say, if you remember I commented in my last blog that Lunatic john is having problems, well now it’s his turn to steal the spot light from Mr fabulous and Crazy jane.
Lunatic john was born Jan 7th 2009. He was perfect weighing in at 7lb 8 oz, my biggest of the 3. He wasn’t really jaundiced, a bit but not like Mr fabulous, he was a vomiter, but not like Crazy jane. He was just your typical new born, but his vocal pitch was ear piercing. Yes he screeched not cried. This was a hard sound to hear and sent poor Mr fabulous into a sensory melt down. I remember the Health nurse commenting on it and asked me to ask the doctor for advice. I was simply told by the doctor that other than send him to a speech and language therapist there was nothing she could say or do. Fair enough, helpful as always.
Lunatic john was born with 2 webbed toes on each foot, and he had a funny habit of lifting his knees up in a funny position, this was checked by ultra sound and was given the all clear, they reckoned it was a hormone settling problem, fair enough. I always had an eerie felling about Lunatic john since the day he was born. I will call it my gut instinct and mother’s intuition, but my sister and my mum also feel it. I remember once he slept through the night and I leapt up out of bed in a sweat, I really taught I was going to find him dead in his cot, but no he was fine, he had just slept through, but there is just something inside of me that has a fear of something being wrong with Lunatic john, not intellectually but physically.
Any way time went on, he was a very advanced baby, he said crazy jane from about 5 months, and Mr fabulous followed shortly after. On the 31st of October he took 2 steps and then sat back down in middle of floor. He was walking against furniture at 6 months. He is doing everything very early, this is great, but is it? I’m not really sure if it is to be honest but I’ll take it as it is for now, an advanced baby.
Lunatic john one day out of no where began to have a yellowish tinge to his skin; I taught I was actually imagining it so never really took much interest. I met up with my sister 2 days later, she asked: what’s up with Lunatic john, why is he yellow? What did the doctor say about that? I had to confess that as I taught I was imagining it I never brought him, he’s fine, he’s eating, he’s drinking, he’s his usual self, so never taught more of it. Maybe I should bring him to the doctor, Na he’ll be fine wont he? The next day it was gone, all yellow had disappeared. Strange, so I cancelled the doctor’s appointment. A month later it happened again. What the hell is that? I remembered my brother and I got a bit panicked. My brother almost died from a haemoglobin auto immune anaemia. He was surviving in 70% of water as his white blood cells had attacked and destroyed his red blood cells after a bad flu, his only symptom, HE TURNED YELLOW. I remember he was told that it was genetic.
I brought Lunatic john straight to the doctors, who sent him straight to the hospital. He had tests done, liver, blood, stool, urine, everything, all clear. How odd, but they will keep an account of it and my brothers illness on file for future ref. It took 4 days for him to go back to his normal colour. The local AMO saw Lunatic john for a developmental check. She put the yellow thing down to DH being of Italian decent, that the yellow tinge could be the sallow complexion coming out in Lunatic john. Lunatic john failed his hearing test that day (there is nothing wrong with his hearing believe me) but this also sparked concern as Mr fabulous and crazy jane also failed theirs during their developmental checks
So anyway, Lunatic john continued to be a really bad eater, he eats like a sparrow and probably weighs the same as one. I am constantly trying to get food into him, he won’t swallow and will gag on any food with lumps in it, yet he can eat finger food. He will only really drink a full bottle at night time, during the day it’s a struggle to get him to finish a 5 oz bottle, 8 we gave up on as it just went down the sink I try him with anything I can think of, nope its waffles and chips all the way, I hate giving kids rubbish foods, so giving it to my baby is even worse, but if he eats even some of it, I’ll give it to him. . He is still not sleeping through the night.
All over and before Xmas the kids had been sick with throats, chest and ear infections. It was non stop and they were constantly on antibiotics. Lunatic john was off his food due to this, and I had been noticing him loosing weight. Xmas was a nightmare as we were all sick and as much as we tried to get into the spirit, we couldn’t, we were exhausted from sleepless nights with the kids, and the snow and floods previous had us house bound and feeling a bit drained. We celebrated DH’s Xmas on the 24th and it was lovely, we made a huge effort and enjoyed it. The 25th was a disaster; the boiler had broken down so no heat and lots of snow. The down stairs bathroom flooded, the 2 boys were so crancrazy jane and irritated that they didn’t even open their presents. I didn’t care as we were going to my mums for dinner and the day. We had a nice time there and we picked up a bit.
New Years Eve the boys were sick again, especially Lunatic john. We stayed home and barely made it till 12 and went to bed. New Year’s Day we were due in my mum’s house, again stayed home. Jan 2nd I was changing Lunatic john’s nappy, and it hit me, how much weight he had lost. I cried as he was so thin and so sick. I went straight to New county hospital, I couldn’t leave it anymore. They agreed that he had lost way too much weight and was starting to loose muscle also. They advised us to go to new county Hospital; again our concerns were taken seriously. Yes he was loosing way too much weight. His ribs protruding through his skin and he had a lollipop look to his head and body. But he was full of beans and lively and alert. He is advanced for his age and perfect bar his weight.
They have decided to start an investigation into his weight loss. They are concerned but it is not so serious that he requires medication just yet. They weighed him, he weighs the same as he did at 8 months, 8.26kg, he had not gained a pound in 3 months, and even at 8 months he was too thin for his age. They did express concerns at his hyperactivity (ah yea, sure why not, bring it on) and he was very tall for his age at 76 cm. This could also be the reason for weight loss, he is so hyper active, tall and his metabolism is high. They have the previous history of turning yellow listed as a concern and of the haemoglobin anaemia documented. There is also a genetic protein issue in our family. It is similar to PKU as well as PKU being in our family, (I have got to be born into the dodgiest genetics ever)
New county hospital have asked me to get a letter from my doctor advising of all illnesses and medicines the child has been on since birth, all issues I raised with the doctor is needed for their investigation. I advise them that my doctor isn’t fond of letters or assisting me with my children in any way, I was advised to get rid of my doctor as she is not fond of doing her job, that I am in need of a good doctor who will support my applications for therapies, benefits and intervention for my children, they were appalled that my doctor did not support me at all, when I told them of all the problems I have been having with the kids they were horrified at her lack of support.
I’m trying to fill Lunatic john up as much as possible and fatten him up, it’s impossible but I’m trying everything. Rice in his formula milk, Rice in his cereal, Vitamins, lots of Butter, all I can think of. He’s a very fussy eater anyway so it’s a challenge and a struggle. The health nurse comes to weigh him, never a single pound gained. He has his first Paediatrics appointment February 1st so I am counting the days. I’m not too worried as it is in the hands of professionals and I trust them. Do I think some crazy genetic or chromosome issue will be found, YES as its just my luck with my kids, Is he my last child, NO I don’t think so, but I can say for now, I’m not even close to thinking about anymore, time will tell, but I am waiting till Lunatic john is sorted before I make a decision on more kids either way.
I asked my doctor for the letter for Lunatic john, I was told that if the hospital needs any information they can contact them directly. I was so shocked again by this that I actually lost it. I said, yes well I told them that would be your response, they were in fact insistant that it is your job to supply me with such information for them. I also advised her that i had informed the hospital of my concern that i had no help from them when requesting letters for Crazy jane. They told me that it is my GP's job to support me in this way. She was speechless; she told me I could get the letter for Lunatic john at the desk. I changed my doctor as again no matter what help I have asked for, I receive none.
The mental health services that were dealing with CRAZY JANE are back to haunt me also. My stupid Doctor requested they review CRAZY JANE without seeking my permission. I ended up having an argument on the phone with Dr George again, and he flat out accused me of wanting to inflict any oul label on CRAZY JANE just so I do not have to deal with my bad parenting skills. I request CRAZY JANE to be released completely from their services. I also hear from reliable source that he had done this with another child, and this child lost out on vital early intervention and therapy, the child later received an Aspergers diagnosis by the same services but not by Dr George.
Crazy jane has been accepted onto the CTYI courses, we are over the moon, Crazy jane is just so happy in her self, it seems to have given her self confidence and self esteem a bit of a lift. She will be doing architecture and she cannot wait. Crazy jane really needs this as she has just been through way too much the last 2 years, this is something for her and something that she accomplished and her intelligence and her Aspergers have given her this opportunity. She feels so proud of her self and its so rewarding for us to see.
So for now we just have to wait and see how Lunatic john will get on Feb 1st, I’m still waiting for my change of doctor to be approved, you know your self, I explained the need to rush the application, but deaf ears in our MEDICAL BOARD services still leave us doctor less for now. I sent off yet another appeal for DCA, still no word, I can only imagine I will be refused again, of coarse, Aspergers is not a disability bla bla bla So that’s the story to date, I will of coarse update when I have more news.
20 comments:
Jen said...
It's fantastic news about Crazy jane and CTYI, I am delighted for her and that it has given her a boost:) I hope all goes well with Lunatic johns' appointment, its not far away now. I hope you can get answers quickly and there is not too much stress involved for you all. Jen xx
January 23, 2010 6:21 AM
Lora said...
That is quite a story about Lunatic john, I hope things go well at the appointment, good thing that it is not far away. Great news about Crazy jane....Kudos to her and her achievements. She must be so very proud and you as well because that is such a wonderful accomplishment.
January 23, 2010 7:33 AM
Lora said...
Oh Geez, I just left a comment and it didn't post.
Great news about Crazy jane, you all must be so proud! Hope that the appointment for Lunatic john goes well.
Hope this comment posts this time!!
January 23, 2010 7:35 AM
Taz said...
Having had an underweight baby, my heart goes out to you mand! At 12 months Button weighed just under 6kg (I just ran and double checked that with his growth charts, cos I couldn't believe it could be right!)The only consolation we had is that we knew the reason. It must be so worrying for you. Button was put on a formula called Nutrini which made a huge difference - it's super concentrated so a little goes a long way! It's prescription only, but might be worth checking out. In the meantime keep doing what you're doing - plenty of high fat snacks and squeeze in a bit of bottle at any chance. xx
January 23, 2010 7:57 AM
Autimom said...
oh mandie, my heart goes out to you. You are such a strong woman, and never gives up the fight. Wishing you all the best for feb. will be thinking of you and lunatic john xxx
January 23, 2010 8:40 AM
popsie said...
as usual my first comment didnt post, so sorry. i really hope Lunatic john is o.k and you dont have too much worry btween now and the appointment. no matter what those kids have a great mum and i could ring that dr crinkles bloody neck for you!!x
January 24, 2010 6:40 AM
Maddy said...
It seems we have a lot in common. For the moment I'm still to dazed to comment = one with pneumonia, one with Bronchitis and two with asthma......still, it can only get better right.
January 24, 2010 8:29 AM
Looking for Blue Scrazy jane said...
It just sounds so complicated, don't know how you manage, so many different battles to fight. Your kids are sooo luccrazy jane to have you as their Mum
January 25, 2010 8:04 AM
Petunia said...
You truely are a remarkable mum. I hope that you find answers to Lunatic johns weight problem and he makes progress. A huge congrats to Crazy jane for getting into CTYI :) You must be so proud of her xx
January 28, 2010 11:27 AM
Casdok said...
Hope all goes well tomorrow.And congratulations to Crazy jane!
January 31, 2010 5:28 AM
isaid...
thanks everyone for your lovely comments and congrats to crazy jane , thanks casdok, i stumbled onto your blogs today and im hooked, trying to get through them, your an amazing mum and you beautiful son is very luccrazy jane to have you xx
January 31, 2010 5:37 AM
Irish Mammy said...
Well done Crazy jane!!! but it must be so worrying for you with little Lunatic john. I hope that you get some answers soon, the inbetween waiting is the hardest. He does sound very advanced though in other areas so a hardly little guy. My little one keeps spitting out and throwing up food with bits in it. (He only has 2 teeth so I guess it is too much to expect him to chew it). So I went back to the puree foods, also the Milupa boxes with cooled boiled water, might be worth trying that to bulk him up?
Thanks for your lovely comment on my blog it cheered me up no end! By the way I have spent many a night in Rockfords!
February 3, 2010 12:22 PM
Cinda said...
I checked back today to see how everything was going for Lunatic john and your family. An amazing family with a special mom! Fingers crossed that things are going the right direction for you. Cheers for Crazy jane as well!!
February 3, 2010 1:49 PM
Anonymous said...
I hope you don't keep vaccinating him. If you don't think that is a major cause of all of this better look into it or you'll have one more autistic kid, which it is sounding like.
February 6, 2010 6:27 AM
i said...
my son has possible thyroid disfunction or celiac disease, i think il leave in in the hands of the experts and medical professionals
my son is not autistic and such an abrupt tone to your comment can only cause offense. And if i were to have one more autistic child it shall be loved cherished and adored just like his siblings, autism is not the enemy, lack of services and therapy is. it is dangerous to comment on sucha a toppic you obviously know nothing about, research before you preach
February 7, 2010 9:47 AM
Anonymous said...
Well said Maddy, what a bleeping idiot, especially in the wake of the Wakefield fiasco being overturned. Has to be a troll, nobody is THAT stupid!! Fabby answer hun, you hit just the right tone:)
February 8, 2010 9:40 AM
Anonymous said...
Good on ya Maddy! Well said!
February 8, 2010 9:41 AM
Anonymous said...
Well done Maddy - what an ignorant ass
February 8, 2010 12:41 PM
Anonymous said...
It does sound like a history of auto-immune issues are going on. This does put kids at higher risk for autism. I wouldn't vaccinate knowing this. I do feel some kids are at risk particularly when more than one child in the family is diagnosed.
February 17, 2010 7:05 AM
i said...
thanks anonymous, i never knew that
i know lunatic john is not autistic as he has all his witts about him and no autistic traits whats so ever, this has also been ruled out by peads team.
but autoimmune is rife in my family and id say you are right with the connection
thanx for comment and useful info xx
February 17, 2010 12:03 PM
Lunatic john was born Jan 7th 2009. He was perfect weighing in at 7lb 8 oz, my biggest of the 3. He wasn’t really jaundiced, a bit but not like Mr fabulous, he was a vomiter, but not like Crazy jane. He was just your typical new born, but his vocal pitch was ear piercing. Yes he screeched not cried. This was a hard sound to hear and sent poor Mr fabulous into a sensory melt down. I remember the Health nurse commenting on it and asked me to ask the doctor for advice. I was simply told by the doctor that other than send him to a speech and language therapist there was nothing she could say or do. Fair enough, helpful as always.
Lunatic john was born with 2 webbed toes on each foot, and he had a funny habit of lifting his knees up in a funny position, this was checked by ultra sound and was given the all clear, they reckoned it was a hormone settling problem, fair enough. I always had an eerie felling about Lunatic john since the day he was born. I will call it my gut instinct and mother’s intuition, but my sister and my mum also feel it. I remember once he slept through the night and I leapt up out of bed in a sweat, I really taught I was going to find him dead in his cot, but no he was fine, he had just slept through, but there is just something inside of me that has a fear of something being wrong with Lunatic john, not intellectually but physically.
Any way time went on, he was a very advanced baby, he said crazy jane from about 5 months, and Mr fabulous followed shortly after. On the 31st of October he took 2 steps and then sat back down in middle of floor. He was walking against furniture at 6 months. He is doing everything very early, this is great, but is it? I’m not really sure if it is to be honest but I’ll take it as it is for now, an advanced baby.
Lunatic john one day out of no where began to have a yellowish tinge to his skin; I taught I was actually imagining it so never really took much interest. I met up with my sister 2 days later, she asked: what’s up with Lunatic john, why is he yellow? What did the doctor say about that? I had to confess that as I taught I was imagining it I never brought him, he’s fine, he’s eating, he’s drinking, he’s his usual self, so never taught more of it. Maybe I should bring him to the doctor, Na he’ll be fine wont he? The next day it was gone, all yellow had disappeared. Strange, so I cancelled the doctor’s appointment. A month later it happened again. What the hell is that? I remembered my brother and I got a bit panicked. My brother almost died from a haemoglobin auto immune anaemia. He was surviving in 70% of water as his white blood cells had attacked and destroyed his red blood cells after a bad flu, his only symptom, HE TURNED YELLOW. I remember he was told that it was genetic.
I brought Lunatic john straight to the doctors, who sent him straight to the hospital. He had tests done, liver, blood, stool, urine, everything, all clear. How odd, but they will keep an account of it and my brothers illness on file for future ref. It took 4 days for him to go back to his normal colour. The local AMO saw Lunatic john for a developmental check. She put the yellow thing down to DH being of Italian decent, that the yellow tinge could be the sallow complexion coming out in Lunatic john. Lunatic john failed his hearing test that day (there is nothing wrong with his hearing believe me) but this also sparked concern as Mr fabulous and crazy jane also failed theirs during their developmental checks
So anyway, Lunatic john continued to be a really bad eater, he eats like a sparrow and probably weighs the same as one. I am constantly trying to get food into him, he won’t swallow and will gag on any food with lumps in it, yet he can eat finger food. He will only really drink a full bottle at night time, during the day it’s a struggle to get him to finish a 5 oz bottle, 8 we gave up on as it just went down the sink I try him with anything I can think of, nope its waffles and chips all the way, I hate giving kids rubbish foods, so giving it to my baby is even worse, but if he eats even some of it, I’ll give it to him. . He is still not sleeping through the night.
All over and before Xmas the kids had been sick with throats, chest and ear infections. It was non stop and they were constantly on antibiotics. Lunatic john was off his food due to this, and I had been noticing him loosing weight. Xmas was a nightmare as we were all sick and as much as we tried to get into the spirit, we couldn’t, we were exhausted from sleepless nights with the kids, and the snow and floods previous had us house bound and feeling a bit drained. We celebrated DH’s Xmas on the 24th and it was lovely, we made a huge effort and enjoyed it. The 25th was a disaster; the boiler had broken down so no heat and lots of snow. The down stairs bathroom flooded, the 2 boys were so crancrazy jane and irritated that they didn’t even open their presents. I didn’t care as we were going to my mums for dinner and the day. We had a nice time there and we picked up a bit.
New Years Eve the boys were sick again, especially Lunatic john. We stayed home and barely made it till 12 and went to bed. New Year’s Day we were due in my mum’s house, again stayed home. Jan 2nd I was changing Lunatic john’s nappy, and it hit me, how much weight he had lost. I cried as he was so thin and so sick. I went straight to New county hospital, I couldn’t leave it anymore. They agreed that he had lost way too much weight and was starting to loose muscle also. They advised us to go to new county Hospital; again our concerns were taken seriously. Yes he was loosing way too much weight. His ribs protruding through his skin and he had a lollipop look to his head and body. But he was full of beans and lively and alert. He is advanced for his age and perfect bar his weight.
They have decided to start an investigation into his weight loss. They are concerned but it is not so serious that he requires medication just yet. They weighed him, he weighs the same as he did at 8 months, 8.26kg, he had not gained a pound in 3 months, and even at 8 months he was too thin for his age. They did express concerns at his hyperactivity (ah yea, sure why not, bring it on) and he was very tall for his age at 76 cm. This could also be the reason for weight loss, he is so hyper active, tall and his metabolism is high. They have the previous history of turning yellow listed as a concern and of the haemoglobin anaemia documented. There is also a genetic protein issue in our family. It is similar to PKU as well as PKU being in our family, (I have got to be born into the dodgiest genetics ever)
New county hospital have asked me to get a letter from my doctor advising of all illnesses and medicines the child has been on since birth, all issues I raised with the doctor is needed for their investigation. I advise them that my doctor isn’t fond of letters or assisting me with my children in any way, I was advised to get rid of my doctor as she is not fond of doing her job, that I am in need of a good doctor who will support my applications for therapies, benefits and intervention for my children, they were appalled that my doctor did not support me at all, when I told them of all the problems I have been having with the kids they were horrified at her lack of support.
I’m trying to fill Lunatic john up as much as possible and fatten him up, it’s impossible but I’m trying everything. Rice in his formula milk, Rice in his cereal, Vitamins, lots of Butter, all I can think of. He’s a very fussy eater anyway so it’s a challenge and a struggle. The health nurse comes to weigh him, never a single pound gained. He has his first Paediatrics appointment February 1st so I am counting the days. I’m not too worried as it is in the hands of professionals and I trust them. Do I think some crazy genetic or chromosome issue will be found, YES as its just my luck with my kids, Is he my last child, NO I don’t think so, but I can say for now, I’m not even close to thinking about anymore, time will tell, but I am waiting till Lunatic john is sorted before I make a decision on more kids either way.
I asked my doctor for the letter for Lunatic john, I was told that if the hospital needs any information they can contact them directly. I was so shocked again by this that I actually lost it. I said, yes well I told them that would be your response, they were in fact insistant that it is your job to supply me with such information for them. I also advised her that i had informed the hospital of my concern that i had no help from them when requesting letters for Crazy jane. They told me that it is my GP's job to support me in this way. She was speechless; she told me I could get the letter for Lunatic john at the desk. I changed my doctor as again no matter what help I have asked for, I receive none.
The mental health services that were dealing with CRAZY JANE are back to haunt me also. My stupid Doctor requested they review CRAZY JANE without seeking my permission. I ended up having an argument on the phone with Dr George again, and he flat out accused me of wanting to inflict any oul label on CRAZY JANE just so I do not have to deal with my bad parenting skills. I request CRAZY JANE to be released completely from their services. I also hear from reliable source that he had done this with another child, and this child lost out on vital early intervention and therapy, the child later received an Aspergers diagnosis by the same services but not by Dr George.
Crazy jane has been accepted onto the CTYI courses, we are over the moon, Crazy jane is just so happy in her self, it seems to have given her self confidence and self esteem a bit of a lift. She will be doing architecture and she cannot wait. Crazy jane really needs this as she has just been through way too much the last 2 years, this is something for her and something that she accomplished and her intelligence and her Aspergers have given her this opportunity. She feels so proud of her self and its so rewarding for us to see.
So for now we just have to wait and see how Lunatic john will get on Feb 1st, I’m still waiting for my change of doctor to be approved, you know your self, I explained the need to rush the application, but deaf ears in our MEDICAL BOARD services still leave us doctor less for now. I sent off yet another appeal for DCA, still no word, I can only imagine I will be refused again, of coarse, Aspergers is not a disability bla bla bla So that’s the story to date, I will of coarse update when I have more news.
20 comments:
Jen said...
It's fantastic news about Crazy jane and CTYI, I am delighted for her and that it has given her a boost:) I hope all goes well with Lunatic johns' appointment, its not far away now. I hope you can get answers quickly and there is not too much stress involved for you all. Jen xx
January 23, 2010 6:21 AM
Lora said...
That is quite a story about Lunatic john, I hope things go well at the appointment, good thing that it is not far away. Great news about Crazy jane....Kudos to her and her achievements. She must be so very proud and you as well because that is such a wonderful accomplishment.
January 23, 2010 7:33 AM
Lora said...
Oh Geez, I just left a comment and it didn't post.
Great news about Crazy jane, you all must be so proud! Hope that the appointment for Lunatic john goes well.
Hope this comment posts this time!!
January 23, 2010 7:35 AM
Taz said...
Having had an underweight baby, my heart goes out to you mand! At 12 months Button weighed just under 6kg (I just ran and double checked that with his growth charts, cos I couldn't believe it could be right!)The only consolation we had is that we knew the reason. It must be so worrying for you. Button was put on a formula called Nutrini which made a huge difference - it's super concentrated so a little goes a long way! It's prescription only, but might be worth checking out. In the meantime keep doing what you're doing - plenty of high fat snacks and squeeze in a bit of bottle at any chance. xx
January 23, 2010 7:57 AM
Autimom said...
oh mandie, my heart goes out to you. You are such a strong woman, and never gives up the fight. Wishing you all the best for feb. will be thinking of you and lunatic john xxx
January 23, 2010 8:40 AM
popsie said...
as usual my first comment didnt post, so sorry. i really hope Lunatic john is o.k and you dont have too much worry btween now and the appointment. no matter what those kids have a great mum and i could ring that dr crinkles bloody neck for you!!x
January 24, 2010 6:40 AM
Maddy said...
It seems we have a lot in common. For the moment I'm still to dazed to comment = one with pneumonia, one with Bronchitis and two with asthma......still, it can only get better right.
January 24, 2010 8:29 AM
Looking for Blue Scrazy jane said...
It just sounds so complicated, don't know how you manage, so many different battles to fight. Your kids are sooo luccrazy jane to have you as their Mum
January 25, 2010 8:04 AM
Petunia said...
You truely are a remarkable mum. I hope that you find answers to Lunatic johns weight problem and he makes progress. A huge congrats to Crazy jane for getting into CTYI :) You must be so proud of her xx
January 28, 2010 11:27 AM
Casdok said...
Hope all goes well tomorrow.And congratulations to Crazy jane!
January 31, 2010 5:28 AM
isaid...
thanks everyone for your lovely comments and congrats to crazy jane , thanks casdok, i stumbled onto your blogs today and im hooked, trying to get through them, your an amazing mum and you beautiful son is very luccrazy jane to have you xx
January 31, 2010 5:37 AM
Irish Mammy said...
Well done Crazy jane!!! but it must be so worrying for you with little Lunatic john. I hope that you get some answers soon, the inbetween waiting is the hardest. He does sound very advanced though in other areas so a hardly little guy. My little one keeps spitting out and throwing up food with bits in it. (He only has 2 teeth so I guess it is too much to expect him to chew it). So I went back to the puree foods, also the Milupa boxes with cooled boiled water, might be worth trying that to bulk him up?
Thanks for your lovely comment on my blog it cheered me up no end! By the way I have spent many a night in Rockfords!
February 3, 2010 12:22 PM
Cinda said...
I checked back today to see how everything was going for Lunatic john and your family. An amazing family with a special mom! Fingers crossed that things are going the right direction for you. Cheers for Crazy jane as well!!
February 3, 2010 1:49 PM
Anonymous said...
I hope you don't keep vaccinating him. If you don't think that is a major cause of all of this better look into it or you'll have one more autistic kid, which it is sounding like.
February 6, 2010 6:27 AM
i said...
my son has possible thyroid disfunction or celiac disease, i think il leave in in the hands of the experts and medical professionals
my son is not autistic and such an abrupt tone to your comment can only cause offense. And if i were to have one more autistic child it shall be loved cherished and adored just like his siblings, autism is not the enemy, lack of services and therapy is. it is dangerous to comment on sucha a toppic you obviously know nothing about, research before you preach
February 7, 2010 9:47 AM
Anonymous said...
Well said Maddy, what a bleeping idiot, especially in the wake of the Wakefield fiasco being overturned. Has to be a troll, nobody is THAT stupid!! Fabby answer hun, you hit just the right tone:)
February 8, 2010 9:40 AM
Anonymous said...
Good on ya Maddy! Well said!
February 8, 2010 9:41 AM
Anonymous said...
Well done Maddy - what an ignorant ass
February 8, 2010 12:41 PM
Anonymous said...
It does sound like a history of auto-immune issues are going on. This does put kids at higher risk for autism. I wouldn't vaccinate knowing this. I do feel some kids are at risk particularly when more than one child in the family is diagnosed.
February 17, 2010 7:05 AM
i said...
thanks anonymous, i never knew that
i know lunatic john is not autistic as he has all his witts about him and no autistic traits whats so ever, this has also been ruled out by peads team.
but autoimmune is rife in my family and id say you are right with the connection
thanx for comment and useful info xx
February 17, 2010 12:03 PM
Subscribe to:
Posts (Atom)