Well, Toby’s annual statement review is sorted for another year. It was great to hear his teachers say that he’s making some progress and having compared notes with them it seems that he’s more aware of the world since starting school. Often autistic children are very withdrawn, not making eye contact or even acknowledging the presence of anyone else in the room. They can sit for hours at a time completely lost in a repetitive activity and often strongly resist being touched or held. Toby used to be quite withdrawn and can still get like this when he’s extremely stressed. I try and comfort him by touch and a soothing voice but this increases his stress and can result in a full-blown, self-harming outburst. Although it’s hard, I’ve learnt that when Toby withdraws into himself it is best just to give him some space and peace so that he can deal with his stress and I just look for the signs that he’s ready to return to our world and accept a little gentle interaction. So, the good news is that he’s withdrawing into himself less frequently at school and is noticing more around him. He’s also discovering his own opinion and often makes it quite clear – most parents are familiar with this in a normally developing child as the terrible twos!

Anyway, due to this increased awareness school have decided to start toilet training. It could be a long and arduous process but it will be wonderful to ditch the nappies at last and to think that he’s moving towards some sense of independance. At home our main target is to tackle the issue of clothing and gradually build up to getting him to wear some! Issues with clothing are typical in autistic children and can include hypersensitivity to certain textures. Toby happily accepts wearing his uniform for school but at home he strips down to his vest and nappy. He also strips when we visit friends and family or even in an indoor play area. Again this is quite common with autistic children – they’ll accept something in one location and refuse it in another. It definitely needs tackling because although it’s perfectly acceptable for a six year old to wander around half naked, it’s quite a different thing for a 6ft teenager and the longer it stays a habit, the harder it will be to change!

So, I’m now on strip-alert and as soon as I see the clothes coming off, I rush to get them back on again quickly. I am not popular at the moment and it will certainly be a challenge!

Thanks for all of the kind comments about my prototype mouse – I think bigger ears and a pointier nose is the next thing to try out. I also wanted to say that if you fancy revisiting some of the fun songs from your childhood there is a great CD with lots of them on – Nellie the Elephant, The Runaway Train, The Ugly Duckling, The laughing Policeman… and many more although sadly not the Old Amsterdam song. It’s called Hello Children Everywhere by EMI records.

Over the next week I need to take a wee blogging break and get some stuff sorted out for Toby. I need to read some stuff and write some stuff and get my head around some other stuff! A friend recently sent me this and I thought I’d share it here as it does sum up many of the feelings that you live with when your child has special needs…

WELCOME TO HOLLAND

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child
with a disability – to try to help people who have not shared that
unique experience to understand it, to imagine how it would feel. It’s
like this……

When you’re going to have a baby, it’s like planning a fabulous
vacation trip – to Italy. You buy a bunch of guide books and make your
wonderful plans. The Coliseum. The Michelangelo David. The gondolas in
Venice. You may learn some handy phrases in Italian. It’s all very
exciting.

After months of eager anticipation, the day finally arrives. You
pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for
Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going
to Italy."

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease. It’s
just a different place.

So you must go out and buy new guide books. And you must learn a
whole new language. And you will meet a whole new group of people you
would never have met.

It’s just a different place. It’s slower-paced than Italy, less
flashy than Italy. But after you’ve been there for a while and you
catch your breath, you look around…. and you begin to notice that
Holland has windmills….and Holland has tulips. Holland even has
Rembrandts.

But everyone you know is busy coming and going from Italy… and
they’re all bragging about what a wonderful time they had there. And
for the rest of your life, you will say "Yes, that’s where I was
supposed to go. That’s what I had planned."

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get
to Italy, you may never be free to enjoy the very special, the very
lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

I landed in ‘Holland’ four and a half years ago when we had a diagnosis of severe autism confirmed for our 2 year old son.

These days I have moments when I forget that I ever wanted to go to ‘Italy’ but most of the time I’m still struggling to get to grips with the language and different customs of ‘Holland’. Sometimes it needs quite a lot of hard work and some new guide books and I’m at that point right now where I need to go find a quiet corner and read for a bit in the hope of better understanding where I find myself. I’ve also got lots of paperwork to fill in for his annual statement of educational needs review.

So I’m off for a little break from blogging (just a week or so) to give myself time to concentrate fully on the task in hand.

Gauw tot ziens! (see you soon in Dutch – I think!)

Hello to all of my Dutch friends (especially the lovely Martine)

 

He may be autistic but my son knows me all too well. He knows that it’s no good just trying to pull me upstairs to play bounce-on-the-bed while I’m in the middle of making tea. But taking my knitting bag as a hostage is guaranteed to get me following! What a tinker!

Have a great weekend everyone.