This Week In Autism - A Rare NDIS Win
Honestly, this week has been really good compared to some of the hectic weeks of recent.
The big win is that Henry’s NDIS funding was increased by 150% (more than doubled, doubled and a half!).
We originally got a rather small amount that didn’t compare to what the other kids at his special autism daycare got, according to what we’ve heard, and it didn’t compare to what the paediatrician who diagnosed him said he should’ve got. In fact, everyone we spoke to was basically mortified about how little it was compared to how severe or serious his diagnosis is and how high his level of support is. One of the really cool parts about the increase is that some of it is for an in-home support worker for up to 10 hours a week. It’s my understanding (so far) that they’ll help us to try to do more of the at-home exercises that the speech and OT give us — you know, those homework tasks you’re really meant to do and we want to do, but seem to just never find the time and energy to do because you’re working full-time running a business and your wife is looking after a whole other child. So the idea of finding a spare hour to try and practice holding a pencil or doing puzzles or exclusively sitting at the table to eat instead of letting him walk around the house free-eating whatever he wants… yeah, stuff like that.
At least that’s my primitive understanding of it so far — more soon.
One of the sad things about his support plan increase, however, is that they weren’t able to cover all of his special autism daycare — they weren’t able to increase it all, sadly. The cost of his special autism daycare is $50,000 AUD per year; his plan will only allow $20,000 towards it, which means we are covering the remaining $30,000.
What else is new?
I decided to make some clothes for parents of autistic kids. In case this blog ever gets any traffic and connects with the right people, then I assume they might share a similar feeling to me, which is — I don’t really want to wear super loud and proud rainbow puzzle piece T-shirts to signal that my son is autistic. But I do, in fact, want to wear clothing that signals that my son is autistic, mainly to just let other parents know at the park — for parents of neurotypical kids, but also in case another ASD parent is at the park too. Like recently, when a dad came over to me with his kid and engaged with me and my son, but Henry walked off, so I went with him, but later, from the other side of the park, I realized his son was also ASD and likely Level 3 — I just wish I had made the connection and been able to have the chance to chat with him about things.
Here’s a couple of the designs and a link to the online store — I’m limited on time, so I’m trying to just keep adding to it whenever I can or when I think of a design I’d like.
Lastly, Henry has one underlapping toe on each foot. I noticed it from super early on, way before even noticing he had autism. And from what I’ve researched, the two are unrelated. But since he has autism and is a toe-walker, it’s made one toe (on each foot) just completely curl under, and I can see it’s starting to bother him. From the top, it looks like he only has four toes, and from the bottom, you can see his middle toe just squished up in between them. I feel like an idiot for leaving it this long to start doing anything, but with everything going on over the last year, it honestly didn’t bubble up. But yeah, now it’s time to look into that, and I am not looking forward to the resistance I anticipate in regard to making him wear toe spacers or corrective shoes that he doesn’t like. But we’ll see how it all goes.
Oh, I almost forgot! We went for a brief orientation at a special early childhood development program where, if successful (and they say we will be), he will go there every Wednesday for the next couple of years until he starts school. The goal of this program is to familiarise ASD3 kids for school. The two ladies that run it have ASD3 sons in their 20s. I’ve never seen Henry instantly adapt to a new space so quickly and seamlessly as he did when we walked into this room — I just instantly knew we were in the right place.
