Thursday, February 18, 2010

Thomas and the travelling milkshake!

I've mentioned it and skirted around it in previous blogs and today, I'm addressing it straight on the nose - Asperger's Syndrome!

William is a very clever little boy who was reading fluently at the age of 4. It's easy for him as he has a photographic memory for words. He's fascinated with facts, he stores them and recites his treasured collections over and over again. He can appear someone obsessed, especially with Thomas the Tank Engine and his current interests - natural disasters, planets and 'A Christmas Carol' (still in February!) People often say he's like a mini adult. He talks in adult sentences with a rich vocabulary. Not surprising for someone who has spent his early childhood in hospitals, isolated from the other children, with only adults to converse with. He can be anxious in social situations, especially with other children who have a tendency to be unpredictable. He likes routines and likes things to be ordered. Anyone who has found this blog because of today's title will recognise him, perhaps in their own child. Wills hasn't yet been formally diagnosed but everyone involved in his care believes he has 'High Functioning Autism or Aperger's Syndrome. We have known he is 'different' for a while but it's hard to tease out what is just down to a very challenging start to life and what is a biological difficulty in its own right.

When people first started using words like 'Asperger's' and 'Autism' I refused to listen. I refused to accept it. After all, Wills is charming, funny. He loves cuddles (OK, not always but several times a day). He does understand emotions and has some level of emotional empathy, although, I am learning that he doesn't really understand quite how another person got to be in the emotional state they're in or quite what he should do about it. In many ways, I initially found the idea that he has Asperger's more difficult to cope with than the fact he had intestinal failure and needed a transplant. This is all down to society and the way people who are 'different' are viewed and accepted. Wills is 'different' too. He's not less able than other children. In many ways, he's more able. In others, it will take him longer to get there but he will, eventually. He can adapt, especially if people adapt to him as well.

We're having a great half term holiday. One of the key reasons to this is that we are all learning to adapt to the way Wills is and the way he sees the world. He, in response, is adapting to the world he lives in. This equates to much better harmony among us all, less stress and more fun together. We are learning to read the signs that tell us William is over stimulated and needs a time out. We know that shouting at him, no matter how cross, is pointless at best and distressing at worse. Thanks to his fantastic teacher, who has a particular interest in Asperger's Syndrome, we're also learning to use resources to help William. One of the things that is particularly difficult for him is disengaging from something, be that a task, play time or an obsession. On Tuesday, Wills and I sat down and made a visual timetable with pictures of all the things he does in a day on velcro. At the start of the day, we talk about what we're doing and stick everything on the chart. As something is finished, he takes it off. This really helps him to move onto the next activity but, if he's still a bit stuck and upset, we pull out something else in our 'toolkit'. We have 5, 10, 15 and 30 minute sand timers. They are fantastic. If William isn't keen to move on we negotiate which to use and allow him until the sand is gone before having to stop. These can also be used in anticipation that he won't want to move on from and activity and are great for 'timeout'. In fact, earlier today in a very fraught moment, Wills spontaneously took his timeout picture, stuck it on the chart, took his 5 minute timer and sat in the corner of the room on his big cuddly giraffe! He was lovely and calm afterwards. Children with Asperger's struggle when plans have to change and we've found the chart great for this. He simply moves the pictures around and has been happy to rearrange his day that way.

One of my tasks for the weekend is learning to write 'social stories' where you write an individualised story around something the child finds difficult and needs help with. There is a prescriptive method and the stories have to be entertaining enough to read over and over again. Thankfully (in this instance at least) William likes the same stories again and again.

Tomorrow, we're all off bowling and having lunch out. This means confronting one of William's biggest challenges. He hates drinking his milkshake anywhere other than home and school. This is special, nutritional scandishake and his only nutrition and fluid during the day so not an option! You know, sometimes you can miss the obvious, the simple things. I was thinking all the deep and psychological things he may struggle with drinking his drinks out and about. Is it the over stimulation, the unpredictable environment, the smell.... Last week I asked him, why I didn't before I don't know! Every time we go somewhere like McDonalds, I pick up handfuls of their wrapped straws for William's shakes on the move. At home, we have red, yellow, green or blue bendy straws. He doesn't drink his shakes out and about because he doesn't like the straws to be different or to have it from the tupperware cup! So, tomorrow, we'll take his straws and his cup. With summer on the way, the first one where we are really able to get out and about and, hopefully, away somewhere, I really hope this works. If not, one of my first social stories will have to be all about Thomas and the travelling milkshake!


J Didsbury and said...

Sarah that was really interesting! I have a particular interest in Aspergers as my 32 yr old brother in law has this. You have just summed it up so well and I am sure those tips will really help others with this. glad all is going well for you x

Jac said...

oops - that's our body image project account lol. above comment was from Jac x