What do I do about these appointments?

[SinkGirl]

Last year when DT2 started portage they referred him for music therapy as music (especially singing) was the only thing that engaged him.

12 months on we got a block of 4 appointments - they were during “nap time” but given that he often skips his nap I figured it would be fine.

First one was last week - he spent the whole session trying to eat instruments, having meltdowns (unlike him) and being angry because he was tired.

Today I extended his nursery session by an hour hoping he would sleep before we picked him up and then be okay for the session, as sometimes he will randomly fall asleep at nursery anyway. Nope. He was crying at the start of the session and fell asleep 10 mins in.

It takes him hours to go to sleep at night. He’s often awake for hours in the middle of the night. The only time he sleeps reliably is when I need him to be awake.

I’ve just cried all the way home on the bus (the third bus, since the first two had buggies on already, just squeezed in next to a buggy on the third which had no child in it, only shopping). I don’t even know why I’m crying, I’ve just reached saturation point I think.

I know these sessions are in very high demand and we are wasting them. I feel bad for the music therapist who hasn’t been able to get any response from him. I feel worried about my twins and how I’ll ever get them to engage. I’m just a mess.

What do I do about these last two sessions - do I just cancel them? I doubt they’d be able to fill them at such short notice, especially when they do blocks of 4... but I feel so guilty for wasting them.

[openupmyeagereyes]

Don’t think like that, you’re not wasting them at all. You were referred for them and are entitled to them.

I would see how the next two go. Does this twin already have a diagnosis? If not then it’s more evidence, equally you may have a breakthrough at one of the next ones.

4 seems a small number, is it with a view to more if it goes well?

[Hello1290]

No don't cancel them. The therapist will be used to all sorts of behaviour. Like the pp said there might be a breakthrough soon.

[SinkGirl]

He has ASD, Ketotic hypoglycaemia, optic nerve hypoplasia and a type of brain damage, and still more tests ongoing for metabolic, endocrine and genetic issues. His twin is much more straightforward with “just” - he wasn’t referred as he’s never been very fussed about music!

I just feel terrible for the therapist who’s trying so hard to engage him and he’s just not having it. I’m not sure if it’s just because he’s tired or he’s just not interested. I find it really difficult when we see someone new and he acts out as they just see this little snapshot of him - he’s normally a really happy little guy but he can be really stroppy when he’s tired and frustrated. I guess you sort of see them through someone else’s eyes and realise their issues can look really severe if you only spend half an hour with them. Maybe that’s why I was so upset.

Wish I could do something to ensure he naps next time, but if I could make sure he sleeps when I need him to, I wouldn’t be a zombie!

I’m not sure if they’re planning more, will see what happens - right now I think he would be delighted to be rid of us!

[Sirzy]

The therapist will be used it it. It is part and parcel of working with people with additional needs.

I assume they can’t rechecule for a time which fits him batter?

[Sirzy]

Reschedule and better they should say

[SinkGirl]

No, they have a huge backlog so this was it. I’ll stick it out and try not to feel guilty!