Ch ch ch ch Changes

Day six of the Autism Awareness Blogathon

Part Four. Part Thee is here, Part Two is here Part One is here

Isn’t the brain an amazing thing? We take it for granted a lot of the time, but it’s always there processing away. My boy’s brain was going it’s own way in a few different areas. Processing was slow but there was always progress and so long as there is progress, you know you are heading in the right direction.

There were a lot of changes in this year. Baby E went to her new family. What a wonderful experience that was to be able to introduce a bubba to their new mum & dad. So wonderful, I signed up for another little pre-adoptive bub – Baby R, a boy.

Now I know that change can be a massive issue for some kids on the spectrum. For some reason, this is not the case for L. At this time, he was very accepting of all these little babies and mostly just got on with his own thing. Anyway, he wasn’t officially on the spectrum yet.

We’d had our official diagnosis of cortical vision impairment (CVI). It turned out that there was a link between L’s vision issues and the meds his birth mum had been using during pregnancy. The main ways in which L was affected were that he had very little peripheral vision (interesting, given that this is often an autistic preference rather than direct eye to eye contact). He finds it difficult to understand changes in texture, especially on the floor and his depth of field is fairly poor also. This means that he finds it hard to judge something like steps – a big step or a little step, a step up or a step down. He has found it very difficult to understand representational images (ie PECS). For a long time he would prefer to flick the pages of a board book rather than look at the images. Visually motivated? No.

L was also prescribed glasses. So we slowly started getting him to wear them and he adapted to them over a couple of months. He’s pretty rough on them too, so his glasses only usually last about 6 months or so, if I’m lucky.

I’ve certainly had my share of massive meltdowns, but at this point L was relatively easy to manage. I’d wanted to keep everything very consistent and predictable for him, but with so many of the people who I love living in other parts of the country, the time eventually came where we were headed off into unknown territory – a holiday.

We travelled by air and I had every possible special, extra fun and entertaining activity ready for the flights. I had a supply of junk mail for him to thumb through (a new interest) and various stringed toys of course. He was pretty good all round. He was certainly no more trouble than any kid on a plane. What I hadn’t expected was the burst of development in so many areas that followed this trip. His language jumped up a notch, he added new play routines to the repertoire and he really enjoyed meeting all these new people, spending time with cousins, family and friends and walking, walking, walking! He won a lot of fans on that trip.

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After we got home I made up a little photo album for him of the trip and all the people that he’d met and the places we’d been. He still loves to look through that album though it’s a little worse for wear these days.

The evaluation process for autism took quite a while. It involved a number of visits to the specialist developmental clinic at the main children’s hospital. They also asked for reports from any professionals who knew him. He had started with an OT & physio program and they were able to provide a detailed update on where he was at functionally. Of course the Narby professionals were also able to contribute a lot of information as they had seen him now for over 2 years.

Before we knew it another year had passed and he was three years old. An appointment was set for April and this was when the diagnosis would be decided.

All along as I’ve said, I wasn’t worried about what that decision would be. This is not because I didn’t care, but because a label would not change anything for me. Also, I knew that he’d been given every possible early intervention from a very young age, so I knew that whichever way the cards would fall on that day in April, I was ready for it.

I’m ending this story here for now. You will find out why when we get to day 26.

A note about photos: of course I have a million photos, I’ve tried to choose ones that show him without breaking any confidentiality

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4 thoughts on “Ch ch ch ch Changes

  1. Oh Rose you are leaving us in suspense again….how wonderful you had things in place early in the piece. You have also had the courage to explore all options. Love learning about L.

    • Yes, it was very reassuring to know that he’d been getting all that early support from 6m. That is not usually the case and for some parents it is such a very tough time. Knowing how important early intervention is, it would be a different boy you see today if he hadn’t had all that those lovely therapists and educators overseeing his development.

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