Thursday, August 6, 2009

Catch 22, autism & the education system

Its 1.45 am. Its been an hour and he may still awake. I've lain in bed listening to him happily burbling, "chatting", guerring and playing with his blind, but hes gone he asleep? Meanwhile my mind has been racing, leaping from thought to thought...I call it monkey brain (its a term I heard somewhere) and it aptly describes the chaos going on in my head.
We have one more assessment to many ways and professionals does one have to have say that Liam has a problem.
He's quietly chattering, maybe he's getting sleepy :)
Its all rather black...I want shade and light and colour (and humanity), not pigeon-holing.

Liam turns 5 this month. The catch 22 is that he is eligible for another year of early intervention. If he was a typically developing child (sometimes political correctness helps, sometimes....), with his physical health issues, he would have repeated another year of kinder. Its well known that physical illness in itself can cause developmental delays. This is the first year Liam has appeared physically robust, but its still not uncommon for me to be called to collect him from kinder as he has fallen asleep.
He's silent again
I know I would have been advised to do another year of kinder and allow him to mature. When Simon started school, one of the boys in his year just starting was a almost 2 years older than him as he had been too unwell to start school earlier.
Liam isn't normal though and although children with autism are developmentally delayed that doesn't matter. Here comes the second catch, Liam is on the wrong (I use this word deliberately), ie severe end of the spectrum. This is compounded by moderate to severe intellectual disability. If he cannot go to a mainstream school, he has to start school the year he turns 6. If Liam was higher functioning he could have an extra year of intervention and kinder, even if he needed an aide at school. If Liam was normal ( how I dislike that word...its so excluding), he could repeat 4 yo kinder or like his older brother or cousin repeat a year of school to allow him to mature as they did. These are not options for him.
Perhaps I should check up on him, but I don't want to disturb him unless I have to.
All this negativity being flung at you gets to you eventually. I still have hope, but I just wish the system was a little more flexible so he could start school a year later. So I wouldn't feel that being at the wrong end of the spectrum was disadvantaging him further. Surely there should be hope for my child, not just for the ones who are higher functioning.
So Liam will go off to school next year, ready or not. I am very happy with the school we will be sending him to. They do specialise in autism afterall :).

One very important thing I have to add here is that the professionals, aides and teachers who work with our children are truly wonderful people. They all do it by choice, because they want to. All three special schools we visited were welcoming and Liam was obviously as comfortable there as we were. It was a soothing, calming experience for both Kris and I. We know Liam will be well looked after and hope still exists for his potential to be realised.
I cannot believe he is still awake. Imp! adorable imp, but still...
I think I better go see him...usually when this happens a snuggle and a bottle re-establish the sleep routine.

Then perhaps my brain will behave itself and have a rest LOL


  1. Don't stress Shaz - you've always told me Liam is one of the happiest people you know - take heart in that!! He will be happy with any situation he's in - and may well thrive in the new environment. Hindsight is always a wonderful thing - but we don't have it - so all you can do is your best, and go with what the experts recommend! I still wonder sometimes if I should have held Sarah back that extra year so she wouldn't have these age'ist issues now, how dumb is THAT!!!
    Luvya - hope you got some rest!!

  2. everything will work out the way it should. Try not to fret. You are a loving and great mum, it shows cos you worry so much. You have a good team, trust them. We are here for you in blog land

  3. Sharon,

    I just read all about your issues with the education system. As you know I have been going through all the fiddly stuff with this as well. I have been everywhere regarding my son. I am in the final stages and my son is 3 turning 4 at the end of the year and I have been struggling with the decision whether he will be really ready at the end of next year for school i have too also thought about holding him back another year because I am not sure whether he will cope in a school environment. It is nice to hear someone else a little fustrated by the system too. My son hasn't been diagnosed with anything as yet but many signs point to autism but I keep getting told he has a problem but they don't want to diagnose him with anything because they want to see how he is going yet I still have to do all the other appointments like speech privately in the meantime and no support in terms of others that face the same drama as me. It is like being on a roller coaster I hate it. so I know what you are going through. Know that I am thinking of you and know there are others that feel the same way. I keep saying to myself it is all worth it because it is for the benefit of my son and I will keep fighting to give him the best. Hope you get a little rest and know you are being the best mum to him and I am sure Liam knows that too.

    Liam P

  4. Take heart and dont give up hope.I understand totally about your mind going round in circles,
    you will come through it and eventually get answers.I will think about you and send you my good wishes.

  5. Aawwwwww Sharon (hugs) it must be so hard. And I echo what your sister says... take heart that you have in your care a beautiful, loving (and LOVED) happy little boy. You are a fanastic mum!

    Lots of love to you sweetheart. I'm on the end of a phone if you need a chat.

    Hugs! Vikki xoxo

  6. Hi Sharon,
    I'm feeling for you honey. Such big decisions!
    I wish I had the answer for you.

    As a Mum I'm sure you'll make the best decision for Liam as "MUM's know best".
    Have a warm, cozy weekend.
    Big hugs coming your way.

  7. Hello Sharon, thank you for your advice in regard to my fabric finding......I think Mother's know their child/children better than anyone else.....I wish I had the answers for you....night time is always the worst time for my troubled times I call it the monkey's are chitter chattering again.....take care Warm Regards Lyn

  8. My heart aches for you. I want you to know that my son was a non verbal, headbanging, bitting and spitting maniac when I pulled him out of school. He was not exactly high functioning...
    He now talks, argues and complains like the best of them. He does math (yes, math...real math, not weenie math!) and even sings!
    There is hope for your Prince too. I think every autistic child can do what he does, I really do.
    Simple things like getting him to sleep through the night might be as easy as taking him off milk and dairy, you don't have to go glutten free,(did you know that the flapping and screeching gets worse with dairy??? Try it...take him off the stuff for a week and then you'll see what I mean... no kidding!) GP is flap happy all summer long (ice cream, LOL!) but we'll have none of that during the school year...
    other simple solutions help. A trampoline (I had a small one in my living room, no coffee table but I had a trampoline, LOL!) to help him calm down and get ready for learning.A balancing pillow for his tushy so he can focus on what you are teaching him instead of the chair that is making him nuts...a seat belt at the table so he can't get out of his seat and wander at dinnertime.
    Oh, I have walked in your shoes, I so know your pain. my son was four once...and although it was a long time ago my heart still aches when I think about it.
    GP told me just recently (when I told him that we were going to have a guest, a little boy who was "autistic"-like him- was going to come to meet him; and Mom was going to teach his mom how to homeschool him so he could talk -like him-. Then I asked GP, "Do you remember when Gene Paul didn't talk?" To this he replied, "Yes, Gene Paul was silent." and I asked him, "And you remember being silent?" And he said "Yes!" I couldn't say anything else. I was in shock. He remembers being "silent"...but I just couldn't go there. That little boy is sooo different from this one, how could it be? I wanted to ask him why he didn't speak, why he banged his head, why he didn't look at me; but I just couldn't find the words. But this is just one of many reasons why I believe that he was "trapped" in there (in his own little world), if he remembers it he was there! We never talk about it at home, about the years he was "Silent" and I had never asked him about it either. I just wanted him to know that this litle boy will look and sound different but he was just like him, once upon a time. Just trapped in that silence, and his Mommy is going to go and pull him out! Please feel free to Email me, I remember feeling so alone and thinking no one understood what it was like to live with a child who was so out of control.Trust me, there are many of us, and you too shall live through this.Hang in there!!!
    Oh, you'll find more stories about GP and his adventures on my blog. He is a funny guy!