Posted on January 11, 2016
It is almost a year since Boodi’s paediatrician pronounced him to be 100% autistic. That seems like such a long time ago. People ask me how his therapies are going, and I answer that while they are going well, the journey that we are on is very long and very slow. There is no end point. It’s not a cure that we’re seeking; not rehabilitation.
Our autism dance is one step forward, two steps backward. Our paediatrician once said that regression is “the name of the game” for classic autism, which is to say that a child might make progress and learn new things, but then mysteriously lose those skills. I don’t see that so much with Boodi, but when I speak of the dance, I refer to the dance of gaining good support and therapy, and how we have struggled with that.
After a very shaky start in regards to therapy, we were in a very good place for 6 months, and it made a difference to everyones lives. We had a bit of a crisis before xmas, and I had to call in every direction of support to stop us all from falling in a heap, and the response was great. In the new year though, suddenly we are left with no speech therapist or key worker and a lovely but inexperienced Occupational Therapist, with no word on when the other positions will be filled, and it feels like the worst kind of limbo.
There are so many things that Boodi needs, so many things that we could be trying, and his NDIS plan is up for review in two months, but here we are, out in the cold again.
It’s not all bad news. We have wonderful support in the form of our respite carer, family and friends, and as for tunes to dance to, though, over the xmas break, Boodi started sweetly singing Twinkle Twinkle Little Star all by himself in the back seat of the car, and he sings it often now. The first time, tears leaked from one end of my face, while the other end couldn’t stop the love smiling from my mouth. Also, if you should begin to sing “Dance dance dance”, little Lady will oblige with a spinning, giggling, darling version all of her own, and these are the sunshines which warm our skins out here in the cold.
What are you dancing to in these summery days?
Linking up with Essentially jess for #IBOT for the first time in 2016