autism spectrum disorder
I can honestly say that I've lost count of the number of times I have changed my son Brody's nappy in our car boot. Trying to shield him from passers-by, some of whom almost tut at the fact that I'm doing it. Like I want to be doing it.
Although, I wish so much Brody that we could have walked that path to your local school together, I know that your new school will take great care of you. I know that you'll meet lots of other boys and girls just as special as you are. And I know that you will continue to develop and amaze us - taking everything at your own pace, surrounded by love from people who care.
There are so many people, like Naoki and myself, who are struggling to find a way to live with enormous challenges. Together, I hoped we might be able to help and guide people in today's world, because disability, disease, accident and bereavement are life-changing events that we all have to face.
My daughter, Ava, was just shy of three years old when she received her autism diagnosis. I remember sitting in our developmental pediatrician's office and hearing the word "autism" leave her mouth with a sense of unforgettable finality. As a mother, I was at a loss. But three years later, that early diagnosis has changed everything for the better.
I on the other hand, wondered what the shitting hell had happened to me. My body had been violated, I was exhausted and all of a sudden I had to deal with this crying seven pound bundle of skin and hair. I wondered where my motherly instinct had pissed off to and why I had no idea as to what type of cry my baby was making. Please tell me I am not the only one who could not decipher, hungry, tired, sick and bored cries?
But it's also oh so bittersweet, like so many things, because I think of how easy she has it compared to our five year old son, Brody, who struggles to tell us what he wants constantly because of a learning disability and autism.
I felt angry at nobody other than myself; I should have pushed harder so that it hadn't got to this stage. The person who needs me most, I had let down badly and no matter how many supportive words of there being nobody who could fight harder for this boy, it does not soothe the pain I feel right now.
It was only as time moved on -- when we realised that Brody had various disabilities and I had the opportunity to meet more doctors, therapists and mums walking similar paths-- that I discovered sensory issues was a thing. And that it was known to many as sensory processing disorder (SPD).
The autistic spectrum is very similar. People who also suffer from social anxiety often suffer the same feelings and situations. We don't understand a lot that other people seem to. Often we're just referred to as 'a bit weird'.
Now that Brody is nearly 5, I have finally got used to the fact that Global Development Delay (GDD) doesn't mean "may catch up" for us. It's forever. And because he is still primarily undiagnosed, despite an autism and epilepsy diagnosis (as well as a few others), GDD seems to be moving on to a new "catch all" term - learning disability.