Food!

Open morning in P's classroom. I often find these sorts of occasions to be the hardest, when I see him amongst his peers; usually, despite my enthusiasm for his progress and my faith that he is by and large managing well, some gulf that I hadn't expected becomes apparent. Well this morning, there were no sad surprises. Indeed, there were some new, positive things. He really seems to be enjoying the little story books that he makes, and is sharing them with us to a new degree, in that his explanations of what is happening on the page seem more coherent. Actually, the pages themselves seem more coherent too. They are all on his favourite themes: Ben 10, Hot Wheels, stuff like that. There are no narratives; he is modelling them on the fanzines we give him, with mazes, spot the difference, etc. And also on the I-Spy books. So they are coherent in that way, all discreet, contained choices, & I am delighted that his efforts are taking a shape that he can be proud of and share with others. My memo to self, though, was to try to encourage some more rudimentary storytelling at home. Although he clearly enjoys these sorts of texts, I have a feeling that stories present difficulties because of his confusion about time (amongst other reasons of course). So I don't think I would be foisting something on him that he doesn't want, but rather helping him to understand the difficult area of temporality, not to mention causality.

I am so aware of how dreadful I must sound when I put this into the public domain, but the hardest thing this morning was his breath, which was akin to gorgonzola. His diet is so utterly shocking, he has had almost permanent halitosis for nearly 4 years. I am hoping that other parents of ASD/AS kids have some understanding and maybe sympathy for me here! Every time I leaned in to hear his tiny voice through the chatter of about 20 parents, children and also younger siblings, I was hit with a foul blast, which, besides being physically hard to deal with, seems to hit an alarm in my brain every time I smell it, that announces that I am failing my son's health needs big time. So I missed parts of what he had to say, which was not so bad, as he was clearly tiring from all the effort. But it did make me irritable. Bad, bad mother ...

Briefly, then, the food thing. I breastfed both boys for extended periods, and wasn't worried when P showed little interest in solids around the 6-month mark. The nurses started getting upset around 1 year, but not me. A few months later he was eating a daily meal of scrambled eggs and strawberry yoghurt. After a few months, this changed to something else. Fresh vegetables and fruit were never on the agenda, so we started making fresh juice, figuring it was better than nothing. Even after his diagnosis, I thought I was just patiently waiting out the picky toddler years, until I heard a dietician who specialises in ASD give a talk. There, I heard about the "white diet", that kids on the spectrum are capable of harming their own health rather than give into hunger, and the comments from parents at the ends of their tethers. That was a bad, bad night.

We made an appointment with this dietician, and have had a few more over the years. Patience is her main message, as forcing the issue will produce anxiety in the child, but keep offering him choices. At the last consultation, she told us that he needed desensitisation, because he was phobic about food; indeed he is. Following a suggestion from a book last year, I put some dried fruit in a clear container in his kinder lunch, but forgot to warn him it was there. Come lunchtime, I get a call to say he has vomited. He tells me it was the sight of the fruit. Fine, desensitise him. Get him to play with, but not expect him to eat, a variety of foods. She was to set up a small clinic, but it hasn't happened. And I haven't done anything at home. Because to supervise 2 children, keep calm when one is extremely reticent, & really needing 1-on-1 attention, is a recipe for conflict in this house. And then, there are only so many therapies you can manage at any 1 time. We recently started an intense specialist gym program, taking over from the years of OT, with some intermittent speech, and social skills sessions with his S. I have been to 2 all-day ASD workshops in recent months, & will attend another 2-day workshop next month. I try to produce various supportive visual documents for him at school, do a bit of reading ... there's only so much I can sanely fit in. So without professional help, I try to simply tolerate giving him almost nothing but bread, crackers, and plain pasta with bought tomato sauce. At least every morning he has a Pediasure and banana smoothie, but that can be touch and go. We do cook fruit and vegetables into muffins, but the amounts are tiny, and the reasons for rejecting the muffins myriad. I hide a seed mix in biscuits sometimes, but that is the extent of our success with concealing things; he is so sensitive to texture, almost nothing gets past him. And he hasn't touched juice for 2 years. In short, if it's not coated in sugar, we can't get anything "healthy" into him.

I keep trying to drop hints to OTs and other professionals that they would make a mint if the could find a financial backer and open up a food clinic locally for families like ours!