Sunday, August 15, 2010

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

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