Tuesday 25 September 2012

JUST AN EXTRA BIT OF INFORMATION

This blog was originally set up to show what we do as a home educating family with an Asperger child.  It's partly to share our experience of learning and partly so that I have a record of what we do should anyone come knocking asking questions.  We don't do loads of written work, nor do we follow a curriculum, so having a record somewhere is nice for me and it's nice to get feedback from readers.

But I'm digressing!  I just thought I'd add an extra blog today just to say what it's like as a parent of an ASD child.  I know my experience will differ from others because all ASD children are different and on different levels so I can only speak from my own day to day experience.  Why am I writing?  With everything that is in the news with regard to DLA, etc, I feel that people often don't understand the often 'hidden' problems of ASD.

Callum has Asperger.  It means he is bright, logical and can interact.  However, he has trouble interacting.  He worries about new situations, new people and he can't cope with change very well.  He also has to be reminded to do things all the time. Some people will see it as him being lazy or me being too much of a controlling mother, but if I don't remind him he just wouldn't do it.  He isn't lazy, he just wouldn't think to do it in the first place.

We have visual timetables for schoolwork expectations.  We also have a visual timetable for personal things such as cleaning his teeth, washing his face and when to have a shower.  But even with those timetables I often have to still remind him.

Take this morning.  I got up to make lunch to take, feed the dog and sort out what I wanted to take to Faversham (Body Shop brochures to give out, Macmillan Coffee Morning invites and a friend's Body Shop order) and to get dressed.  So far, as normal as every other parent.  Callum got up and had a cuppa with me and then started to play with the dog.

"Have you had your shower?" I said
"Just going now."

After that he got dressed and brought down his washing.

"Don't forget you need breakfast today.  Cereal will do as it'll be quick."  As he went back to playing with the dog.
"Ok"

Cereal got whilst I finished making pack up and eaten while I make another cuppa.

Then I started sorting out the packing and getting ready to go.

Callum sat on the sofa.

"Could you clean your teeth please?"
"Yep."  Off he goes.
"Can you get your bag and make sure you have it packed with what you need?"
"Yep."  Brings back his bag, his shoes and his jacket.
"Got everything?"
"Yep!  But I might take my Dune game this week."
"Ok, go on then, whilst I clean my teeth and get my boots on."

Down he comes, puts the game in his bag and then sits there.

"Can you put your shoes on please."
"Ok."  He does and then puts on his jacket and sits down.
"Did you get your lunch?"
"No."
"Ok, I'll get that as I need mine."
"Ok."

He puts the lunch in the bag and we set off.  We get to the station and he discovers he hasn't got his glasses. First thing I think is 'damn, forgot to ask him if he had his glasses' not 'why didn't you remember your glasses?'

I know that all this sounds really mundane and pathetic, but this happens every single day.  I have to ask him to do things.  I have to prompt him to ensure he has everything he needs.  You might all be saying 'why are you asking him, he's 13!'  But if I hadn't prompted, if I hadn't reminded him, he'd have continued to play with the dog until the 11th hour and we probably wouldn't have made it.

All outings must be organised with military precision.  All outings must be checked beforehand for any issues that might arise such as long escalators, high ceilings, lots of noise risk and whether easily accessible from train station or bus stop and that I know EXACTLY how to get there.  I cannot show any worries or apprehension and I must be ready and be able to take instant decisions or make instant changes if things don't go according to plan.  I must be able to instantly find a solution and be able to approach anyone to find that solution if necessary.  I have to remain calm and deal with the situation as well as dealing with any breakdowns that Callum may be having at the same time which can include running, hiding and/or shaking/flapping.

In addition to this; clothing must be of a certain feel, shoes will have to be prised off feet when new ones are due as he won't recognise that things are getting too small or at least won't want to admit that they are getting too small.  He also hates shopping, but has to be there to feel the clothes to ensure that they are right; if they aren't he won't wear them.  So shopping has to be as planned as any other outing.

If he's anxious, he'll hide or he'll poke me constantly.  He'll want my full 100% attention if his friends aren't there when he expects them to be there, so trying to talk to others will be difficult.

He can still wake in the night with nightmares and left to his own devices he isn't particularly motivated.

He is getting better at dealing with things and there is less running away from uncomfortable situations.  But whether he really is getting better or I'm just getting very good at avoiding the trigger issues, I don't know.

Having an ASD child is an experience.  It's challenging, but often fabulous fun.  Callum has a great sense of humour and he's fun to be with and I love being with him.

But I'd still like people to remember that it isn't always as easy as it looks and it's often all the background work that has gone on that has made it that way.

Anyway, thanks for listening, ranty moment over.  I'm sure many of you that I know will recognise some or all of the things I've mentioned and those of you that don't have ASD kids still may not 'get it', but hey ho.

Cya

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