Back in 2009 I tried blogging about my son’s autism as a therapeutic exercise that had been recommended to me by a friend. I felt awkward about writing about my son so publicly, so I didn’t turn on the search feature, and abandoned it after only four posts. In 2010 I started keeping a written journal about my son, and at the end of 2010 I decided that I’d attempt blogging again to seek out more interaction with others in the autism community. Obviously, I decided blogging was a good idea this time around, and kept at it. For the sake of completeness, and so I can just shut down that other blog, I’m going to reproduce my original four posts below (none of them are particularly lengthy). So here they are:
January 17, 2009, 8:04 am
This blog is about my son, who is on the Autistic Spectrum. He is three years old. We’re on a very long waiting list for a full diagnosis of how “bad” he is, and in the meantime my husband and I struggle through everyday – learning what we can from anyone who will help us.
This blog exists for three purposes: (1) To track his progress so I feel like there is actual progress – each day can feel like the one before and I need some way to remind myself that little wonders do happen here and there. (2) To reach out to other people, for their support and encouragement. (3) The hope that some people who read this will be able to give me advice and help, and maybe see things I’m missing or taking from granted.
The Wheels Off The Car…
January 17, 2009, 8:31 am
My son loves anything with wheels, they are his obsession. First word out of his mouth each morning is “car?” as he pleads for a car ride. The task he completes each morning before he will have breakfast, and often before he will let us change his nappies, is lining up his scores of cars on the couch. They stay there all day, we’re not allowed to move them, so we don’t use the couch to sit on during the day at all. Through-out the day he adjusts his cars and lies his head down beside them to examine them up close as he carefully moves them into his idea of perfect alignment.
Today we had a special moment. He takes the wheels off a lot of his cars – if they can be removed they tend to get removed. Then he throws the wheels somewhere that he can’t reach them – usually over the boundary gate at the front door. Today he collected a lot of them on the way inside after we’d been out in the stroller, and took them to his cars. It was a very hot day so I went to my computer to relax and rest my feet for a bit. One by one he bought in to me a wheel, and the correct car for that wheel. To understand how amazing this is you need to realise that he has literally scores of them, I would get tired if I tried to count them all (though I might attempt that tomorrow). He was choosing the right tyre for each car (that he had stripped off on previous days) and was bringing them to me to put back on. Each time I’d take the tyre and I’d say my usual phrase when he brings me a problem “mummy fix”. I’d let him watch closely as I put the tyre on, and he watched quietly and calmly. Then he’d take the fixed car, leave the room, and come back with the next. He did that about four times. No words from him – he doesn’t talk much at all and has never spoken a complete sentence – just that lovely calm determinedness that he always puts into his cars as he came and went.
It might seem like such a small thing, but it is huge to me. Any little sign of comprehension, purposeful behaviour, and advancement, means the world to me. And in my books this fulfilled all three of those.
May 6, 2009, 4:29 am
My son is now three and a half. Back in February he was finally diagnosed as being on the autistic spectrum. Other various professionals had told us they thought he was, but it was the developmental paediatrician at the children’s hospital who officially got the ball rolling. After her diagnosis he got placed on waiting lists – so many waiting lists. Now two and half months later we’re still sitting on those waiting lists and slowly going mad.
We had a brief call from the occupational therapist who apologized for what would be a very long wait for us. She asked me over the phone whether there was anything specific I wanted her help with at the time. It was hard for me to answer that when I had no idea what her role and expertise was! I ended up in accidental tears to her through my frustration as I talked about all the things that were worrying me. She wasn’t the last professional I would break down into tears to as I talked about my son.
So we wait to see her, to see a physiotherapist, and a eye specialist, and a speech therapist, etc. I don’t even know all the lists he’s on! I know that making phone calls seems to change nothing, and just add to my stress and frustration. Everyone I talk to is very sympathetic and concerned for my well-being, but nothing ever seems to come of it. I need help, my son needs help, my family needs help. They say if you want help you have to ask for it, but they forget to tell you that you’ll be placed on a very long waiting list before anything comes of it.
Oh and, as if that wasn’t enough, I’m also pregnant with my next kid. It’s going to be a bumpy ride…
July 31, 2009, 10:47 pm
My son now has an amazing number of therapists involved with him on a weekly basis: An occupational therapist, physiotherapist, speech therapist, and an educational psychologist. He also goes to an ABA playgroup with other preschool autistic kids for two hours every week. He’s also just got a placement at a local kindergarten, where the head teacher has experience with special needs kids – he’ll start there in late August. Which is to say that a heck of a lot has happened and changed over the past couple of months!
The steep learning curve keeps going – I have so much still to learn about the differences and conflicts between various therapies like ABA vs RDI. I’m still forming opinions on the causes and diagnoses of autism, and on the relationship between high-functioning autism and Aspergers, vs more “classic” autism. So much to learn, but a life-time to learn it, so I’ll get there!
My son is responding well to the various therapies and therapists, none seem to be harming him or setting his on a backwards path. At this point we are very much trying out a wide range of options and observing and evaluating their effects.
My next child – due in December – is a boy. The pregnancy is going well and the baby-to-be is healthy in all checkable regards. We know it will be hard bringing up another kid when my existing son is already so much work and exhausting in so many ways, but we’re feeling hopeful and happy on the whole.