Fair warning - this could be disjointed and sketchy (and long, and make little sense, so I promise the next post will be a picture of cookies). Yesterday was a huge day. I think it's going to take me days to process it.
I think I said at some point that the other reason I'm doing this baking project is that baking is my therapy. I love baking, and I love writing, but I'd gotten lazy and rushed with one and abandoned the other completely, and embraced stress a little too much. I'm trying to slow down and make time and these are two of my ways. I need to do this as much as I want to - I think and move too fast, and the little ginger gets lost in that. He thinks differently and I need to slow down so there's time to think about what is going on with him at any particular moment. If I move too fast and don't think enough then that in turn causes stress - for him, for us, for the not-ginger, and the end result is no good for anyone. This is my battle because usually our crappest days happen when I'm moving too fast - I'm unpredicatable (to the little ginger) because I'm trying to do too much and I don't listen as well as I need to. So, slowing it down. Stopping to smell the flowers.
Which bring me to the other thing that it's all about - Wellington Early Intervention Trust (WEIT). I need therapy because the little ginger is having therapy. Heh. (Well, you do have to see the funny side) Yesterday was our first session day with WEIT. For now we have a fortnightly place which may increase to weekly in term four if we need more intervention. I'm not sure whether that depends on progress, or whether he'll need attendance to be regular to keep him focussed.
I was exhausted by the end of yesterday's session and I expect the little ginger felt the same because he fell asleep just a few minutes after we left. It was more stressful than I thought watching the sessions (he starts and ends with a group therapy session, then moves on to speech language, music and physical therapies and another therapy that I'm not sure about - how awesome am I? A+ for attention) and seeing him being placed in situations where he would be out of control and stressed. He hated physical therapy and came closest to panic and meltdown during that session. The first group session he was all over the place, and by the last he'd pretty well shut down. I think the drives to and from the Centre (around an hour from the Coast to the Hutt) are going to be really good - it's time to think what we need moving forward before we get there (in theory - the little ginger managed to talk the entire way yesterday), and then to reflect on what happened in session when we're heading home and for the little ginger to recover. It's a beautiful drive too.
Yesterday was a lot about the therapists talking to me, starting to learn where our particular challenges are, and pushing Cuinn out of a position of control to see how he would react. I guess also they were looking for confirmation of some of the things I had advised them in our paperwork and interviews, and also taking things in that I hadn't told them. It's the tricky thing with him being our first child - he's our scope of reference for normality. We don't know if something is significant or not. That's been a hard thing to process for us, because we don't know whether it's the ASD or normal psychotic 3 year old behaviour sometimes, and you have to make a call which is sometimes wrong. We started questioning absolutely everything. Also, there was a fair amount of control taken away from him yesterday in session, and of course that meant trying to regain it when he got home which was hard work. Probably made harder because it took me a while to realise that's likely where it was coming from, but I'm wise for next time and it's a good thing to talk to the therapists about (dealing with it the best way) because I want to ensure I'm carrying on what they're working towards with him.
Probably the biggest thing I got out of yesterday was that both the husband and I worry about how much TV he watches, or how much time he spends on the ipad. He doesn't sit there for hours, not in that way, but he is brought back to base fairly often when he starts to lose it and starts to overload for whatever reason. It re-settles him. We restrict his watching/game playing hugely to gentle cartoons (like Franklin or Wild Animal Baby Explorers (whatever it's called), Dora ... Peppa Pig is his absolute favourite) or things like Monkey Lunch Box or Lego on the ipad. But he ends up having quiet time with them a lot and that concerns me. Actually, I'm more concerned about whether I should be concerned.
Our Speech language Therapist said not to even worry about it. We're right at the beginning. See? Moving too fast. She explained to me how tiring it is to be him. I knew that, but she really brought it home to me with an example showing where meltdowns can come from. She told me how when we walk into a room and see four chairs and a table, we know them to be and log them as a table and chairs without even thinking about them. For him, he walks into the room and thinks - that has four legs, a seat, a back. That's a chair. That has four legs, a seat, a back. That's a chair. Times four. Then that has four legs and a top. That's a table. And he's doing that, cataloguing everything, all the time. Then if something changes, a chair moves or disappears, it's not only that that impacts on his catalogue, but he questions what else may have changed - if that has changed, the whole world could have, and the catalogue has to be done again. You can see where meltdowns and freak outs come from. I would. Yeesh.
It's good for us to understand the why. I knew that it was important to him that things have their place and I know he can clock that something on his radar (that something I'm curious about - why one thing would be important, but not another - I'll find out, I'm sure) has moved even when you'd think he couldn't possibly, and an example of how control was taken away from him yesterday in relation to that was the music therapist took gym ribbons (no idea what they're called - ribbons on a stick? Whatever. You know what I mean ... the Olympic sport that doesn't make any sense) out of a cupboard to work with. Afterwards, she asked him to put them back in a bucket. It's nothing to us, but massive to him. They go in the cupboard, not a bucket.
One thing that happened that was really significant, although I don't know how or why, is that the little ginger has been speaking about the other boy who was at his WEIT session (there are two boys including the little ginger and two girls - two autistic spectrum (ASD) boys and two Downs Syndrome girls), and this morning has been using his name. It seems a nothing thing, but actually it isn't. It's a connection he's made that's strong enough for him to remember the boy's name. Usually he'd have referred to the boy or that boy or that other kid. There's only really one other kid on his radar at the moment and that's the wee girl that the not-ginger goes to play with on Wednesdays while we go to therapy - he's clocked her because she's important to the not-ginger who is important to him.
So, lots of learning. I'm a bit relieved it's only fortnightly for the moment though - I think I need to build myself up to it as well. Amazing team of people - we're really, really fortunate to be working with them.
Now I need a coffee. I've probably forgotten a whle bunch of interesting and important things, but this big ginger is in overload herself just now.
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