We had a funny weekend (funny peculiar not funny ha ha!). As Toby gets older and becomes more aware of the world outside his insular one he’s beginning to find changes to routine harder to cope with. He’s also developing a stronger will so although he’s 5 years old he’s really just hitting the terrible two’s tantrum phase – if he wants something and doesn’t get it we know all about it!  Anyway, Saturday was a nightmare day. Toby was very unsettled – probably because he’d had only 2 days back at school and then along comes the weekend (that is NOT his routine!). There was much crying, screaming, flinging and fussing and he ruled the roost with the rest of us mostly doing his bidding in an attempt to have a quiet(ish) life. He finally went to bed at 11pm and we rolled in soon after, completely shattered. So on Sunday we decided to keep busy and got up early to go swimming. The local pool does a fun family session with waves and floats. The kids had a great time but once again we were reminded just how different life is when you’re living with autism. I looked around me at all those happy children, chattering and laughing and playing with their mums and dads and there was Toby – happy as anything, drinking great gulps of pool water, oblivious to all but the ripples in the water and literally screaming with excitement at the waves. I’m long used to ‘funny looks’ and stares from others but it is hard when your child is so obviously different and people make an effort to move away from you. We came home to lunch and then Toby spent the afternoon on his trampoline in the garden.

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Fun you might think – well yes, but Toby has to bounce with no socks and no trousers and it was raining lightly. It goes against all my maternal instincts to let him stay outside for 3 hours and bounce with no trousers in the winter rain but then I’m learning that flexibility is the key to surviving with autism and if he’s happy then we all are! (and I bundled 4 tops on him so he looked like the michelin man with 2 stick legs!) I think my New Year’s resolution this year is to have the confidence to go with my gut instinct and not worry so much what others think, afterall what counts is your kids happiness not the judgement of others. A lofty ambition for me, but I feel so supported by all of you who read and comment on my blog that I might just achieve it. Thanks so much for reading my whitterings and commenting – it means a lot to me!

And no I don’t mean the rippling muscle variety, although come to think about it I am pretty passionate about those too – but that’s an entirely different story. I mean the Picture Exchange Communication System which is what Toby has learnt to use so he can communicate his basic needs.

One of the first indications of there being something amiss with Toby’s development was that he just failed to develop speech. He’d been early to do all the physical stuff – walking at 11 months etc but though he’d been babbling all those precursors to speech like bababa, mamama and dadada he seemed stuck there and his speech just never materialised. Toby was 2 years old by the time we got the diagnosis of Autism and he still had no form of communication whatsoever. He didn’t point, wave or gesture in any way in fact he didn’t have any way of communicating anything. I used to guess when he was hungry, thirsty or tired and when I got it wrong life was miserable for us all. Getting a diagnosis is a battle in itself and for many families it can take over a year to get to a point where a professional is prepared to put anything definite in writing. This is an agonising time for families as there is very little support available to children without a confirmed diagnosis. Even with a diagnosis we were facing a wait of 6 months to get an initial consultation with a speech therapist to assess Toby’s needs. It was time for action.

Thankfully the internet is fabulous as a resource and I spent hours every evening reading all about language development, autism and various intervention methods. There is a lot out there to sift through. I looked into some of the more intensive interventions (ABA and Son-rise) but with Amy’s needs to consider as well it didn’t seem possible to commit the considerable time and expense that both of these entailed. PECs on the other hand was based on a simple theory that anyone with a bit of dedication and determination could put into practice. I ordered the manual, computer software and all the materials that we needed and we started as soon as they arrived. The first PECs card we ever made was for milky bar buttons and although it was slow to begin with, by Christmas Toby had 4 additional symbols that he could exchange without prompting. He’s gone from strength to strength and is now able to construct very simple sentences to request food, drink, toys, dvd’s and a few simple activities.

If anyone out there has a non-verbal child I would encourage them to look into PECs. It’s widely used in the USA and Canada and is becoming more widespread over here. It’s certainly transformed life for my little boy and I can’t express how thrilling it is to see him walk purposefully to his book, browse his symbols, compose his sentence and bring it to me to ask me for a custard cream and drink. Without PECs life would be a whole lot harder and more frustrating for him.

For more info on PECS see here.

On a knitting note, my moo cards arrived – printed via my pics on flickr. I’m so pleased with them but am having difficulty parting with any at the moment!

 

For those of you who’ve asked, moo cards are cute little contact cards that you can order straight off any photos that you upload to flickr. They’re around 7cm long by 2.8cm wide and you can get 100 (of whichever of your photos you want – all different or all the same). You can customise the back to give your contact details and hand them out to all of your friends. It’s free to open a flickr account and upload photos and the moo cards were quite cheap – around $24 per 100.
Also, for those who’ve kindly asked about buying my rabbits – I’m afraid that there won’t be anymore for 2006. I’m planning to make as many as possible over the next month and put some into my ‘shop’ in the New Year. Will post glimpses between then and now and let everyone know beforehand when they’ll be available – thanks so much for your interest.