Saturday, 30 August 2014

Let down by Occupational Therapy

I'm feeling let down by Occupational Therapy. We had the same OT for a few years and whilst it always took a while to get equipment I always felt that our needs were responded to. I actually felt bad listening to other mum's who talked about the lack of support they felt and the equipment they didn't receive whilst we always got everything we needed.

However, our OT was seconded to support a different team and we were assigned a technician. She's very nice and says 'ooh' and 'ah' when she comes to visit but we've had the same crappy chair that is not fit for purpose and nobody seems to be doing anything about it. This chair, which is a Breezi-max, is a wooden chair. It was chosen because it has no wheels and it doesn't change height. This means that there is less movement to encourage Seth to bounce or rock when he's in it. So I get that. However, when it arrived it had no padding and so Seth would slam his head back against the wooden headrest. We complained, several times. It was very distressing for me to watch him hurt himself and they finally came and removed the head rest entirely. So Seth simply continued to throw his head back, seeing how far he could fling it back. This was equally distressing. He would throw his head back if we tried to leave him, when his meal was over, when he didn't want to be in the chair anymore, even, increasingly, during meals.

In addition, the tray didn't fit properly. There was a massive gap which allowed his food to fall into his lap when he ate. It was so big that if I tried to put a toy onto the tray, if Seth did play with it it would fall into the gap.

After several phone calls I was advised to stop using the chair. Useful! We had a couple of review visits with the Breezi Max sales rep and then, finally, months later a new, padded headrest arrived and padding that we could fix around the tray which filled the gap and made it more comfortable against Seth's tummy when he rocked (because he still rocks, even though he doesn't get the same feedback as he did from his previous chairs). But after a couple of months of use it just keeps falling off. By now we've had the chair for over a year and I've learnt to really dislike it. The lack of wheels means that I have to carry it if I want Seth to be in the same room as me, and it's a heavy piece of wood - even without Seth in it. If I try to drag it, it scratches the wooden floor. Either that or I have to leave him in the living room whilst I go into the kitchen. It doesn't hurt him to be alone every so often but how am I supposed to read his body language and voice tones to communicate with him if we're at different ends of the house? Plus, whilst it all being wood makes it easier to keep clean, I wouldn't want to sit in a chair like that for long, so how can I expect Seth to tolerate sitting in it longer than he has to?

I've explained that I'm really not happy with the chair and we need a proper review. So now they've just stopped phoning. I suppose it's time for me to phone and complain again!

On a positive note, today we played with some gadgets that Speech & Language gave us. They installed some software onto my laptop and a piece of hardware that allows us to use a switch, instead of  a mouse or keyboard. Here is a video of Seth playing with it :)

Sunday, 24 August 2014

I'm getting lots of cuddles from a very weary boy!

We're having a very quiet bank holiday. Seth seems to be growing a new tooth, although I can't see where. As he hasn't lost one it must be at the back which explains how much he is suffering.

Yesterday he spent the afternoon asleep after having a melt down at lunchtime. He was so tired but every time he took a bite of the sandwich he just screamed. I can only assume that his gums are hurting. Today I managed to get Seth to eat his lunch and then we had a lovely cuddle on the sofa where he fell asleep in my arms. I carried him to bed and again he slept the afternoon away. When he woke we discovered he'd had a poorly tummy and the poo had soaked through his nappy and trousers. Lovely! He wasn't bothered though and he even tolerated being showered which bodes well for the wet room we are hopefully having installed sometime before the end of the year.

It's a problem though because we've got the breathing excercises we're supposed to be carrying out each day, we've got all these speech and language toys that we've been lent for the summer holiday and we've also just been given these wrist splints that we are supposed to be building up his tolerance too. & he's just so sleepy and grumpy at the moment that we are spending a lot of time just cuddling. It's lovely but I feel guilty that we're not doing all this stuff. I know that's silly because if that's all he's up to then that's all we should be doing. But it always sounds lame when you get to the end of the holidays and you have to explain why you didn't anything! We have managed to fit in using some of the toys and actually just doing it for a few minutes is suiting Seth better and he's really enjoyed using a switch to turn a lamp on and to make a whizzy light toy light up.

We did manage to do the breathing excercises every day for over a month. But then Seth didn't want to lie still for them and it got harder to do. I really wanted to do them for the full 3 months so we could evaluate if they were having an effect. Certainly, I haven't seen any change and apparently even in that short space of time we should have seen something. I have to say I've become a little sceptical. It does seem a broad brush approach for such a diverse range of special needs children, including children with autism. I'm sure some children really benefit from it, and certainly my friend's child really seems to be enjoying and responding to the excercises. I would like to try to begin fitting them in again, though, so we can at least say we properly gave it a go.