part 33 whats better than loving one daughter ?? well loving 2 of corse

Hi guys

Hi guys, it’s been so so long since I last blogged, been so so busy gallivanting and living a little.  I have had the best few months taking a break from being in the hole scratchers elite wrestling ring, and you know what, I bloody needed it.

I dragged my hubby and daughter crazy Jane off to Rome for a 4 day mini break.  We had a great time and actually got to do that thing I hear you all talk about, sleep, yes I slept, now I know why you all rave about it so much lol, it was as wonderful as you made it sound lol.

So over the last few months you know I won a major battle with the elite services regarding crazy, now I still have major battles ahead and have refreshed enough to start wrestling them again and giving it welly to a person or two and I actually cant wait to give it to them lol but I have also revisited decisions I made a few years ago.

Before Lunatic john was born I decided to fulfil a life long dream I’ve had since I was a very young girl, but then Lunatic John came along and put it in the not for now pile.  I have always regretted not having a child closer in age to Crazy Jane, I should have and was always the plan but she was just too hard to manage that introducing a child to either one of us would have been so unfair all round.  Before Lunatic was born I again wanted to add to our family but the surprise of being pregnant with him was enough to be taking on for that time. 

 I have decided to adopt a child from a country I have great friends from and great respect for Brazil.   I will of Corse be hoping to adopt a young girl aged between 7 and 9 years of age, why because I can get pregnant, I can have babies, I have had the good fortune of doing both, there are couples who cannot and a baby is the perfect age for them to adopt.  I on the other hand, have decided that I’m done with babies and toddlers; I have a lot of love to give and time to devote to an older child with the experience and training to support this age group.  My daughter will have a sister close to her age which she has always dreamed of and our family dynamic will not change, Crazy the oldest, our beautiful new addition the second oldest, Mr Fab the middle child and Lunatic the youngest, PERFECT.  I will also have my dream 4 children of 2 boys and 2 girls, again PERFECT.

Now of Corse, its not all perfect, as I have to do courses, be assessed and valuated, my personal, family and marriage life ripped to shreds by social workers to judge us, make the decision on if we can adopt for us blab bla and of Corse, just to add to the stress, the recent referral Doc Prick made to Social regarding me and Crazy will undoubtedly cause us no ends of stress, heart ache and just annoyance, but can I take it on, haha sure I can, its me after all.

So I’m off to Brazil to hand over all of my personal documents, cert’s, qualifications, bank details, photos, references etc in November to get ball rolling brazil side, sometimes it’s the country your adopting from who hold it all up and delay it, but I’m hoping to jump that gun at least, you know me, over organised and on the ball, it’s the only way to be lol

So that’s my news, I’m really looking forward to Brazil and dreading visiting their local children’s homes as I’ll find it hard to leave those children behind me and will probably try smuggle them all out lol but yea that will kill me, I’m not sure how prepared I am for this part of it all, I’m not one for leaving a pet shop empty handed, can you imagine a children’s home, It will kill me.

But in the mean time I’m learning all I can, preparing all I can, contacting all I can, and redesigning Crazy’s room to fit my 2 beautiful daughters, I know I’m going to have a 2/3 year wait for her, but I want everything to be perfect for when she is here with us.  Thankfully I have 2 cousins with adopted overseas children and there is adoption from my hubby’s side too so we are well prepared with a lot of support.

My friends and family are hugely supporting my decision and are excited about it all, especially my mum.  I have people so happy to write references for us and one came through the door this morning from a woman I hugely respect, it really said all I could wish to hear about myself  and my family in her reference and I am just overwhelmed by it,

And just in time, the winter vomiting bug has hit the house, lovely, a few pounds dropped for my hols without even trying and a good week before I fly out, bliss

But if only the room didn’t spin when I stood up and the loo wasn’t my best friend right now be even better, paracetamol and motilium anyone, I have plenty J)

part 32 my fabulous kids alive again

ALIVE AGAIN

In my last blog I sounded so down and out, even I didn’t know what was wrong with me, I was just on an all time low, WHY? I forgot how to live for a while I think.

I like my 3 kids have a mild disability, I have an actual diagnosis of ADD with ODD type behaviours (possibly had the disorder as a teenager but grew to control it but still got traits of it) I have a constant need to be out of my house doing something, my brain is permanently thinking of projects to get started on, some never completed but also never forgotten and some I do till the bitter end with amazing results.  I’m very driven and passionate about all I do and I never give up, this can be a god send but also a curse.

When I met DH almost 17 years ago we immediately fell in love, it was so quick, we where engaged after 4 months and buying our first house and planning our beautiful baby girl crazy Jane.  I would not change a thing to this day, my husband is the most amazing guy you could meet but we struggled to cope with each other’s ways, on paper we really should not work but we do.   He actually calmed me down and although we both have the need to argue our point to the death and we are both as stubborn as they come we work, but only through long battles and learning slowly over the years to compromise to finish the battle.  But he also recognised that I have an ability to do and succeed at anything I put my mind to, I only got this praise and encouragement from him as I did not get it as a child, through no fault of anyone only circumstances and hard life with all involved.  I don’t blame anyone I just recognise the issues and understand it, but this took years of trying. 

My husband is quiet and so laid back, I am hyperactive and impulsive; we are two very different people.  I have learned to respect the fact my husband is not a night clubbing, do something on a whim type of guy, and he has learned that I am LOL so in order for us to work he lets me do my thing and I let him do his thing, its just the way it is as neither one of us will ever change EVER lol There is a draw back as I always look like my marriage is in trouble at family weddings when he’s not with me or when he is and  its 2 am, I’m still wanting to carry on partying and he just wants his bed, lets just say his facial expressions tell all and hide nothing, I call him the hulk as you can see when he’s at his exploding limit.  But if I’m honest I wouldn’t change him as then we really just would not work otherwise.

Anyways for the last 13 years I’ve been fighting

RECAP: Met my hubby, mortgage application, baby making but no baby, tests, heart ache, struggles, new house, pregnant, horrid pregnancy, my gorgeous baby girl, hell as she is an insomniac, projectile vomiter, hyperactive head case, new house, play school probs with crazy Jane, she’s as odd as two left feet, grrrrrr still odd and so difficult, new mortgage almost killed us, Jane calmer but stranger, yay school, grrrr no not yay school but ugh school, problems raised, hard struggles with her, worried about her, wedding plan stress, wedding, new baby plans, some hitches, pregnant, threatened miscarriage, pregnancy issues raised, heart ache, beautiful baby Mr. fabulous, autism, county move and new mortgage, school issues for crazy, new school, still issues for crazy, Mr. fabulous diagnosed, hse enough said, and the rest as you all know its just been horrendous stress and never a let up EVER

I got trapped in problems, they consumed me, they took over my life, they where crushing me and near killing me.  I never stopped fighting or gave up but it damn near killed me.  I was dying slowly inside.  So many years of stress, heart ache, fears, worries, guilt, fighting, trauma, shock and depression that I can safely say I was dying inside. 

I NEED RESPITE so badly or I will be no use to anyone or anything, if I so much as drop my guard and give up, its game over for my kids, I cant and wont let this happen.  I will be fighting for my crazies for the rest of their lives and right now I need to fight for me first to get the strength to continue their fight.

So what am I going to do

Well on a whim I flew to Rome with another friend who is as mental as I used to be, we then went to Florence, Venice, Switzerland and to Milan and home.  Why because we could.  I felt alive again for a while, it was just about fun, being spontaneous, and stress free and I didn’t realise I needed it till I went.  I had a great time and it was just an adrenalin rush through and through.  I was gutted my husband wasn’t with me and I did miss my kids but realised more than ever that I needed the head space to reclaim my brain and train of taught so I could come home stronger to fight even harder for them.  I have also just booked an 11 day holiday to Brazil with the same nut job friend for just pure out and out adrenalin rush to just boost me up to keep going.  I am also going to book a nice calm holiday to Rome with my hubby and Crazy Jane as they will love it there and my poor hubby needs some out and out time as well, he refuses to acknowledge it and is plodding along every day but he too is in this same bubble and stress as me, ok he deals with it better but he’s the hulk, not superman, he needs to reboot him self as well. 

I am so blessed that I have a hubby who realised I needed this before I even did.  He had nothing but encouragement for me to do this and was just so happy for me to get the opportunity to do it, which to me says everything about my relationship with my husband, about the love we have for each other and about the trust and respect we have for each other.  We have been through hell that would separate the strongest of couples, but were still here, still in love and still as strong and happy as we ever where. 

I plan to make sure my family has memories of happiness as well as hard ships from now on, we will always have memories of the tough times, they get permanently stamped into you brain, you cant help but remember them, but the happy memories sometimes get lost and stored to the back of the pile, it should not be this way, and I plan to make sure from now on that the happy memories start taking over the miserable ones and soon push their way to the start of the pile.  My husband and kids deserve better and happier memories, and I plan to make sure they get them. 

So to my hubby, I love you and have never had a day where I didn’t love you, you are my everything and I couldn’t, wouldn’t, and shouldn’t ever wish for anything more or less from you as you have given me everything in life I could ever wish for, but truly my kids are the best gift in my life so I need nothing more.  I just hope that I too can give to you all you have given to me and more, as you deserve it, you are amazing and I am so blessed to have found you, but I knew I loved you before I met you, and I really do think I dreamed you into life, just as our wedding song says lol

I am somewhat alive again; just a few more adrenalin rushes then god help all who stand in my kid’s way, I’m ready and waiting, bring it

Part 31 something old, something new, but feeling very blue

WHAM, BAM, WHAM

What?

Wham, Bam, smack, slap

WTF was that, YOUR LIFE that’s what.

Yep that sums it up, could almost end this blog there really.

What is wrong with me these days, something is just not right at the moment.  Im feeling overwhelmed, tired, grumpy, defeated and just worn out.

I should be on top of the moon, and hard to believe but im actually quite a positive person who just jumps to it and gets the job done, but at the moment, im feeling like im failing the most simple every day tasks.

Im under immense pressure and I have so many balls in the air that im dropping them one by one.  I really hope I start catching them soon as knowing my luck ill trip on one and do myself an injury lol.

I think im just coming to terms now with being so sick a while back, Mr Fabulous starting school so sudden, which was really just so quick that I don’t think I’ve even processed it yet and still fighting the Hole Scratchers Elite is exhausting, but im winning the fuckers so really I should be celebrating that fact.

The Mill is nearly finished, just putting the finishing touches to the retail part, the stock starting to come in so its looking great, but its been such hard work and I feel I let both Aine and Rachel down as I had been so sick when we where trying to get it all sorted.  Normally id work even if my head was hanging off but I just couldn’t function, I had never felt so tired and unwell in my life.  I also really did get a shock with the whole Mr fabulous thing, I mean I was expecting home tuition and plain sailing and I think I taught his tutor Fid would be with him for ever, I never expected to loose her or have to loose her, stupid I know but Mr Fab loved her, I loved her, she was such a great support to us and just such a lovely person.  She has a new job now and I know she will change the life of the little boy she’s going to work with; they are such a lucky family to have her with them.  Mr Fab is doing really well in school, I couldn’t be happier for him; he had no transition problems, no melt downs, nothing, just big smiles and working the charm on all his teachers, as Mr Fab does best.

I got great news regarding Crazy Jane, we after 2 and half years and 4 declined letters and 5 appeals, we have won our fight for entitlement to DCA.  Can you believe it, and I actually only sent the last letter and appeal in just to stick it to them, I was so nasty and in your face in that letter LOL and I really said how I felt in it.  I even told them id bring a child the same age as crazy with me, plonk them both in his office and play a game of spot the difference between a typical child and an Aspergers child, I was waiting for a “we are suing you for harassment letter” not a reversed decision and appeal approved letter.  I was in shock; I will frame that last letter LOL.  And thanks to my wonderful solicitor we have also been sent a letter considering  review of  service by the Hole Scratchers Elite, WOOHOO SO ITS ALL LOOKING REALLY GOOD.

So what could be wrong with me, fuck knows really, im just feeling really blue.  Im not depressed by any means but just low in myself.  I suppose Lunatic john is a main source to my problems.  The 21 months of fucked up sleep finally getting in on me lol, the fact that hyperactivity has already been confirmed at this early age, the fact that yes ill be fighting for him as well in few years, does it ever end really, what did I do in my former life ill never know to deserve this.  The financial pressure of 3 kids with very different needs, childcare costs, petrol, bills and all that jazz.  That cheque from DCA has never been more needed and I am escaping the madness with 2 long weekend holidays with a friend, no kids and a family trip to add to it.  I deserve it after all this fighting and abuse from Dr George (oh the day when I get to announce his real name, cant wait) I still haven’t heard from the social work department, I think they know them selves hes just a dick as ive heard since hes famous for referring innocent families there and they are just as sick of him as we are.  So that’s comforting.

Me and DH are two people and we are struggling.  We are exhausted mentally and physically.  Someone once said to me, how can you work with all you have going on, truth, it’s my escape, it’s my rest from it all, my break from it all, it’s my refuge from it all.  If I was an outsider looking in at my life, id have us all institutionalised and on Prozac drips in a padded cell, we are a psychologists dream, we are our own psychological experiment.  We are a nut house.  My working day may end at 5 but my living hell continues on where the working day left off lol.  My kids are the best kids and for all that’s going on with them they make Autism look so damn easy but if I fall behind, they do to, if im tired and cranky, they suffer, if im unwell, they get neglected, if im not home they have a substitute who loves them just as much as we do but it means they come flooding to me for me time as soon as I get home.  I miss being a stay at home mom but I miss my sanity even more, so working really is my best medicine.  Just brings with it added stress, tiredness and out and out madness.

I hope I get to a full nights sleep again some day, I hope I wont be downing double vodka’s praying to get so shit faced that I forget my own name for a while, I pray to god ill be me again some day, I vaguely remember me, I think there was a time in my life where I had no kids, I did not live in an autism bubble, and I was fun and alive, not half dead and grumpy.  My children are my world, but do they have to be my whole life as well?  Surely im allowed having some life of my own that does not revolve around them, this for me is the Mill, and it’s just all about me, and the future im building for them. 

 I don't eben know if this blog made sense but i do know its home im feeling right now

part 30 Decisions decisions scary decisions

What a few weeks it’s been. It’s been like a whirlwind. My head had just been spinning and spinning. All the crazy jane stuff aside, I now faced a new problem.

I was one of the many parents caught in the department’s new circular, and it was quite a sneaky circular too, very much on the down low, so much so that even organisations hadn’t been made aware till last minute.

I filled out the HT forms, sent them off expecting the usual department hassle they like to give you but this, this was mental. One night I got a phone call from the head of the organisation, form can’t be signed by the seno, as now mr fabulous is 4 so his options are special needs school, asd unit etc. WHAT I was speechless; I honestly did not know what to say as the news came after a string of other bad news blows. The organisation where just as baffled as me, surely they cannot expect a barely turned 4 years of age non verbal severe autistic child to start school, I just couldn’t get my head around it all.

The head of the organisation said leave this to me, il get back to you tomorrow, she too was shocked at how my child was going to be thrown into the deep end. I was too numb and just overwhelmed by bad news to really think straight. I had also been very unwell as I somehow bumped my thyroid into over active which played havoc on all my internal organs causing chronic fatigue and just reducing me to a coma type sleep at stupid hours of the day. I was in pain as the pressure was sore and I had a constant head ache from my blood pressure shooting too high to too low and my blood sugar kept dropping rapidly. I had never experienced anything quite like it, it was weird, I had to have bloods, tests and x rays all round me. I almost crashed my car one day from nearly collapsing behind the wheel.

I was so lucky to have help from my good friend Bruno, Mr Fabulous’s carer. He drove me where I needed to go and took care of the kids while I was too tired to function. I had to ring Mr Fabulous’s tutor to explain all to her which was horrible as she was on holidays and I was devastated at the tops of her not being with him again or moving forward with him as was part of our bigger plan. I taught id get HT till he was 5 and a half at the least and that he’d then be ready to mainstream slowly with his tutor as his sna which I had also arranged with the school I had in mind for him. I had it all so planned and taught out, that’s what I do, its how I cope, this threw me for 6.

We fought for HT hours and if not granted a place in an excellent ASD unit but it was 45 min drive from my house, im some woman but im not super woman, there was no way id manage that with my crazy life. We needed transport which department provide. Another blow, no transport as special needs school right beside me, HELL NO he isn’t going there, it’s a great place just not right now for Mr Fab. Ok letters and documentation as to why HT better option and why he cant go to local school. I got it all done and seno came to my house, the one day I needed my two boys to be their usual selves, they were best behaved. Ok Mr Fab took offence to the head of the organisation leaving her keys and cardigan on my mantle piece, they got flung, he took offence to so many people in his sitting room and became quite vocal sounding and proceeded to bang on the window continuously as if to say, there’s your car, now hop out to it.

The more I taught about the ASD unit the more it started to make sense. They are fantastic and the services are second to none. They have a huge reputation and they get results. Maybe I should let him go to this unit, maybe its just the kick up the arse he needs. What if it’s not tho, would he regress on me, he had started to since leaving his resource centre. I can’t risk that, home life is bad enough but could I handle Mr Fab to be even more of a challenge than he is? Oh god, everything felt right tho, my self and DH where constantly trying to figure things out. We’d have to move if no transport provided, ok let’s do it. Then something happened and I felt totally different, nope he can’t I said. DH said he was sure the ASD unit was the way to go. I can’t move tho, I just can’t, and what if regression starts, I can’t handle that especially as our circumstances will change rapidly in December, my DH shall have to work in Dublin and not from home anymore. I will be on my own 5 days’s a week with three very dependant children. I just can’t move or risk it.

More news, transport of some kind would be granted as local school has no place to suit him, great, also HT was granted and ASD granted, pick one. Oh god, you’re just kidding me, I won both fights and still had to make this horrible life changing decision. This decision did not just affect Mr Fab’s life but ours too. I had to make the right decision for him that, was priority. I spoke with his amazing tutor, she also agreed with DH, ASD unit best option, if I didn’t take the place this year it was not an option next year as place already filled for next year, GULP, I rang petunia, what do I do, advice in favour of ASD unit also, this was it, decision made, ASD unit it is.

I went to see the school a few times and timed the journey, ITS long 45mins long. I got into see it on the 31st of August and Mr Fab was welcome to start September 1st.

Just like that, no issues, no we’ll get back to you, nothing just welcome aboard, Im a wonderful principle, I’ll accommodate you and your child anyway I can, its all about what works best for him, you and your family, GULP, I was just shocked. Transport forms filled out, he even invited Crazy Jane to their July prov 2011 and told her she could come to his school if she wanted, to which Crazy Jane gave great consideration and is still considering. Ah they have a special shared hobby herself and the principle, horses and ponies. They clicked right from the get go. He was showing her his connemara ponies on his phone, she was showing him snowy on my phone, they were discussing breeds, and all sorts. He brings his ponies to the summer camp you see, Crazy jane in heaven.

Mr fab is just in the best place ever. He loves the school, teachers, the big open wide spaced classroom, the sensory room, gross motor room, the playground they have is fantastic and its always available to them. Mr Fab needs to get up and run it off every couple of mins and he has the freedome to do that, he also loves to work and he has his own partition’d off table to work one to one. I couldn’t be happier for him as the smile on his face says it all. I will miss Fid his tutor but we are keeping in touch so that’s great. She even went in this week to help them settle him in. Mr Fab will remain with the organisation for life due to his IQ score and ID outcome of his cognitive assessment which will be done very soon, that’s a major relief to me as they are a godsend and without them I’d be just lost, their support and services are second to none and their always there for me and Mr Fab, they have never let me down the entire time we have been with them. I am forever grateful to them.

Other news is just the usual crap. Lunatic John has been diagnosed with hyperactivity at the age of 20 month’s, nothing I was’nt expecting, under observation every 4 months still, he gained a massive (sarcasm) kilo and a half in 4 months LOL. That’s good going for him especially since he had yet another antibiotic and trots from it.

Crazy jane is doing the best in a long time. Freedom has definitely been the best move forward with her. She’s loving being able to go to the next estate to her friend and the local shops and pool. Im really impressed with her maturity level. She’s such a careful and law abiding child, she doesn’t get it from me and that’s for sure. I know I can trust her with this new found freedom so that’s a huge help, plus the fact that she gives me a late night chat about every SINGLE thing she did, nothing left out and I mean nothing. She’s growing too fast, she only 10 but she looks 14 sometimes, especially if she has make up on which is her new passion. She’s been into clothes for a good while now. At last we have removed her from tracksuits and jeans, she wears skirts, dresses, and pretty shoes lol, not just uggs and tracky’s. She really is a stunner of a child and she has the best heart you could ever want your child to have.

We have been back and forward to the Hole Scratching Elite with letters, they actually have the neck to be snotty in their letter’s their sending back, they shit themselves recently when a very official letter went out to them, let’s just say they copped it was a solicitor’s letter and not just a letter from me, well their attitude changed rapid, oh Mrs Maddy, we are so happy to offer your daughter a review with aim to new assessment and review of services. They make me sick, so here’s hoping something good happens, probably get another dick head saying no she has traits but not actual condition blab la but at least shell get services with it of some kind, we will be reviewed in another county with new psych. We have also sent to ombudsman etc so maybe ever a benefit or two if im lucky, would be nice, especially now as im paying out all round me for private services.

HERES HOPEING
But it’s looking good, long may it last

PS if you where a follower of the blog when at it’s last home could you click follow again, its looking lonely LOL

Part 29, onwards and upwars i hope

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

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

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

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

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

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

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