Development

Edith has reached nine months and every day we tick off another milestone. We watch her like a hawk, looking for signs that she is developing "normally" or crucially, signs that refute autistic development. We often video or photograph moments which we think are key. So tonight she sat on the bed, giggling at Bea's Tiny Tears doll and I said "kiss baby". She grinned, leant forward, have TT a big slobbery kiss and, critically, turned to her daddy and smiled. That one subtle, natural, usually unnoticed step in development, a missing part of the autistic jigsaw, is so clearly in place. Joint attention. I've never met a baby who shares their experiences so readily. We know James developed this skill, though I'm not sure it was quite this early and certainly never at this intensity, and we have video footage of him reference pointing, cheerfully checking we had seen what he had. Joint attention is so critical in "normal" development yet it is rarely asked about at this young an age. The CHAT test, which has been validated above 18 months, screens for children at risk of developing autism and joint attention, or rather lack of it, is a major red flag. But at 9 months it's not mentioned in the various developmental checks. Simon Baron-Cohen believes you can tell in the first tear of life whether a child is autistic and I was once sceptical. Now I wonder....

All change

It's been a year of change, with the arrival of Edith, Bea starting school and finally employing a permanent after school carer for James. And as the long summer holiday draws to a close we face yet more changes. Change is hard for people on the autistic spectrum. Characteristically, they find it hard to deal with and disruption to their routine throws the whole world into chaos, making it hard for them to predict what's coming next. We've always felt that James isn't actually that affected by changes, he doesn't seem thrown when we get a reavemwnt cater to cover leave or if I serve supper later or earlier than usual. Overall he's quite passive and seems to cope with these sort of changes quite well, at least on the surface. I'm not so sure how well he's going to cope with the changes coming up at school though. He's been in the same classroom for 3 years mow and a couple of his classmates have remained the same throughout too. But this year he's changing classrooms, entering a class with completely different children and has new teachers and teaching assistants.... I hooe he (and they) copes....

Dipping my toe back in...

Hmmm. The water's still warm! Might have to come in more often....

It's been a long time since I last added to these pages and so much has happened. It would take too long to post a full update but the major change for all of us has been the arrival of baby Edith Agatha in January this year. Needless to say, life has been hectic since then but I feel I'm coming out of the fog now and beginning to feel vaguely in control once again.

A major cause for anxiety had been around James' response to another new sibling - the last time we brought a baby home he spiralled into a frightening and profound regression and "declared" his autism. So it was with trepidation that I crossed the threshold for the first time with Edith in my arms. I am very relieved to say he has taken her in his stride. Well, he covers his ears and gets distressed when she screams but quite frankly I often feel the same way! In many ways nothing has changed for him. We still provide him with one to one care and life revolves around him and his needs. It has been Bea who has made all the sacrifices and bourne the brunt of any hardship. Overnight she went from only child to middle child with none of the positives and all of the negatives. Luckily, if there's one thing that James has taught her it is resilience and she has coped very well with all the changes (although she breaks my heart when she turns to me and says "Daddy looks after James, you look after Edith, but who looks after me?....)