autism · crafts & knitting

My new apron

As I've mentioned previously my son is severely autistic. He's not yet developed any speech at all and has never uttered a recognisable word although he merrily babbles with lots of consonant sounds. How then can he wander over to me and purposefully ask for some chocolate buttons and a maisy video?

Well it's all down to the magic of PECS (the picture exchange communication system). I have talked about it here before so I'm not going to repeat myself but I will say again that PECs has transformed life for our family and given my little boy a 'voice'. For some time now I have been meaning to put in some intensive time to try and develop Toby's use of PECs further. At the moment he uses it confidently to request food, toys, videos and favourite places like the park but I am hoping that one day he will be able to comment on things he sees, hears and thinks and that we may be able to have more of a 2 way conversation.

So you're probably thinking "what has all this got to do with aprons?" Well, let me introduce my new secret weapon…

Apron

Lovingly handcrafted from beautiful fabrics and made especially for me by the wonderful Carolyn at Laughing Duck it has 2 perfect pockets for storing PECs cards and strips. When I'm wearing this I have all of the symbols that I need readily available so I can show Toby the symbol for 'wait' while saying it, the symbol for 'plane' when he glances up to look at one passing overhead and generally begin expanding his vocabulary and teaching him by example that he can use symbols to communicate rather than just for requesting things.

It will take time and lots of work to get him there but, as we have no reason to believe that he will ever learn to speak, using PECs is the best way to equip him with the ability to communicate with others. He's been a real star to achieve what he has already with it so I've no doubt we'll get there in the end and Carolyn's gorgeous apron is going to make getting there a lot easier and more fun! Thanks Carolyn!

Apron2

autism

mice welcome!

Cheese

Anyone got any mice that they don’t want? They’d find a warm welcome here and would save me from having to hoover 18 times a day! Toby is currently having 2 inset days from school and is in a major grated cheese phase. Cubes and lumps don’t satisfy and coarse grated doesn’t pass muster – only finely grated, easy-to-drop-all-over-the-floor cheese will do!

I know that all kids have food fads but in autistic kids this is often taken to extremes. We’ve had the ‘only eating milky bar buttons’ phase (and then only if they are perfectly round – any irregularity discarded), the mini cheddar biscuit phase (again discarding any with broken edges or an irregular shape), the custard cream phase (ditto if not perfectly sandwiched together) and the banana (only if cut into 3 equal parts) phase. How I long to be able to cook a meal and have all 4 of us sit together at a table and eat the same thing – it’s a small dream of mine and a work in progress!!

Roll on wednesday!

autism

A big thankyou to the tooth fairy!

If you drop in here regularly you'll know that I do my best to keep my blog focused on the happy aspects of my life and mostly on my knitting. But ocassionally there's a need to give it a little flavour of what is going on in the background as there are times when I struggle to be positive and carefree. So today I'm going to be self-indulgent and get something off my chest so that next time we can go on with the business of knitting and having some gentle fun.

Since Toby was diagnosed as severely autistic I've had times where I'd wake each morning with a feeling of expectation and find myself thinking "things will start to get better when…" …he starts nursery, …he starts school, …the summer comes… and thinking in that way is probably a saftey mechanism that has helped me get through some especially tough times. The problem comes when the realisation hits that things haven't got easier and I start to think "what if this is as good as it gets?"

This weekend I realised that I had got through the summer
holidays by thinking that once Toby was back at school
things would be better – foolish thinking because of course they are not. In fact the last week has been one of the toughest for a long while. For a start Toby slept less well than usual (and usual is bad enough!) but he's also been incredibly restless and demanding and the constant high pitched keening noise that he makes when he's distressed is especially hard to take.

Because Toby can't communicate we were left guessing as to why he was so out of sorts and then on Sunday evening I made a breakthrough! I spotted a wobbly tooth. I don't think it was actually causing him pain – it's just the fact that it felt different and in Toby's world different ain't good!

Tooth

This kind of sums up autism – that something as simple as loosing a first tooth can cause so much angst and distress and in turn push a family to the edge of reason. We're all very grateful that yesterday the tooth fairy zapped the offending tooth and since then Toby has seemed much happier and actually slept through last night!

* Since the offending tooth has disappeared without trace (probably swallowed) I've had to use a stunt tooth – one of Amy's which the tooth fairy let me borrow (just incase she reads this!)