Photos

If you have read my essays about Rett Syndrome then you will likely not need much explanation of these photos, but for those who haven’t, my son and I have a Rett Syndrome that is specific to us and I will explain some about us and also these photos. There isn’t many photos of me as a youngster. There are a few others I haven’t placed here, but are/will be in my book that I wrote in 1995/96. I’m going to publish it and will note it here when that happens for anyone that’s interested.

Sean has a ton of photos and there’s more I would have liked to place here too. My book will contain those as well though and also more current ones. These photos here are more for the purpose of helping folks understand the early stages of our particular courses of Rett Syndrome.

Sean had such a severe case of reflux that all his photos through his first year have him wearing a bib. (I wore a tea towel everywhere) Our paediatrician was going to operate if it didn’t settle down by Sean’s first birthday and thankfully, a few weeks past his birthday, it did, significantly.

During his second year, still a happy boy but there were odd moments that began to increase in number. He would startle and cry, and in some situations, hands to the ears and began to have episodes that went far beyond a child’s tears. I was the first to say that something was wrong but because Sean was at times his happy self, this confused everyone around us, including medical people. Sean began to dislike the camera and its little whirring sound when it took a picture. He was miserable on his second birthday and wanted no part of his day or his pedal car.

In the following weeks he took to his pedal car and could drive it around fast and miss your toe by an inch, but at the same time he could barely say a word, among his other difficulties. And he’d had some words, he wasn’t saying them properly, but he’d ceased doing that. His paediatrician had never seen Sean’s problems before and so we plodded on. Then Sean would become blank in the face and eyes. By this time, he’d been for a hearing test. Hearing fine. Nobody really had any idea. I took him to a young man who was a psychologist for an organisation and though he didn’t know what we were dealing with, he was in contact with experts who might. And that’s when Autism was suggested. Sean at the beach shows him intermittently covering ears and joining his hands.

I had looked for answers to my problems for years on my own, and I’d never found anything that came close. I decided that it must have been when I fell and hit my head on concrete at two years. Nobody had ever talked to me about my issues.
I read a book about Autism and certainly recognised things discussed in the book and of course was so relieved to have some insight to our situation finally. We each received a diagnosis and we joined an autism group and I was also in contact with some autistic folk and I began to realise that we had additional issues that autistic people didn’t have. I kept wondering why they wouldn’t talk about them and finally realised why.

Sean kept losing skills, stopped riding his pedal car, his hands would join as mine had, he couldn’t use his hands as well as he had and even lost the ability to drink to name just a few of the severe problems he was having. I had to spend a great deal of time every day, repetition, and keep him working.

At the same time my father had been given a year to live and there was no time for being sad, Sean needed as much input as I could find and we had to support dad through this and make his last year very special. And there was another devastating event at this time as well, so really was a very painful time for all.

As for myself, I followed a more typical course of Rett Syndrome in my childhood. At one year of age I wasn’t walking (I have my sisters’ shoes on in photo). I still wasn’t walking at eighteen months but I could stand with assistance. (As seen with my grandmother). At age two I began walking and I’m sitting in a highchair at that age, I have the startled look. I suspect it was a good place for me to sit as there’s a few photos of me in the highchair.

I knew I had been put into a children’s care facility because I had bits of memory of it, but no one had told me or for how long. With my dad’s ill health, we saw a lot of each other and became very close and I was able to ask him some things I needed to know and that’s when I learnt that I had been placed in this facility for three plus years. It was a shock to know it was that long but things made much more sense.

I loved to swing and did that a lot. And I often sat on this chair with Elsa (our dog) each weekend.