Tag Archives: Occupational Therapy

Targets and other Torments

I’ve written on the blog many times before about the sense of weight and guilt that comes with Boo’s enormous long list of therapy goals. We have targets for physio, SALT, and OT not to mention our own private goals for Boo.

The lists are huge. Not metaphorically. I mean very literally. They are huge! They live on our fridge. Don’t use these as a diet aid, by the way. Seeing them on the fridge door makes me want to eat my body weight in cheese and double cream whenever I look at them.

I’m a list kind of person. I am what the self-help industry would call goal-oriented in my personal life. I have a long-term plan. I break it down into steps. I do my best to stick to the plan. And will usually flog myself until I have achieved what I set out to do.

But I can only help and encourage Boo. I can’t make his body do things it struggles with. And I have no interest in making his life any more difficult than it already is.

One of the biggest mental adjustments I have had to make since having Boo is letting go of goal-oriented me. For ages I tormented myself with the ‘will he walk’ question. No one knew, of course, whether this would happen or not, but most thought it unlikely based on the extent and nature of his brain damage. But then someone gave me a glimmer of hope. ‘If a child sits unaided by two there is a very good chance they will walk (maybe with a walking frame) by the time they are five.’

I wish they had never told me. Hope can very quickly turn into a stick to beat yourself with in this here life of ours.

I crippled my back trying to get Boo to sit before his second birthday. I was fixated on this happening before he hit 24 months uncorrected. When that was clearly not going to happen, I counted every darn day of his eleven weeks of prematurity and went for 24 months corrected. That date passed too.

Boo is now over 3. He still can’t sit unaided for more than a few seconds and cannot be left alone in this position. But we have just tried a new walker which we are hoping to buy and he steps in it in a way that makes the Grand Old Duke of York look like a complete amateur. Like all the amazing kids I have met since Boo’s birth, he just does things in his own way, on his own schedule. This is goal orientation Boo style and it is beautiful to watch.

There was a time when I felt the fading prospect of independent sitting with great sadness. Now I’ve adjusted. My sense of time is much more elastic now. I worry less about where Boo is relative to others. Frankly, that way madness lies and we celebrate each and every inchstone Boo meets whenever is the right time for him.

But of course, sometimes, I have a wobble and forget all I’ve learned. Children’s parties are a particular trigger (if he gets invited to them at all). Lugging Boo round a soft play for an hour the other week so he could join in while all the other kids ran hysterically like puffed out beetroots who had had a week’s sugar intake in a minute while their parents drank coffee and talked about the inequities of catchment areas was a weak point for me, and meant I couldn’t walk with a straight back for 48 hours. Sissyboo’s sports day last week was another.

And then there’s the biggy on the horizon. The milestone we can’t dodge or avoid. It will just have to be met by hook or by crook and whether he or we are ready or not.

School.

Next September Boo will start school. That may be 15 months from now. That may seem like an age. In special needs elastic time, though, it really isn’t. It really, really isn’t when you consider all the things that we would like to have set Boo up to be able to do before he starts school. There’s joystick control so he can (please, please let this happen) learn one day to move himself around. There’s potty training, so important for his dignity and for others’ perceptions of him (which will in turn, of course, affect him). There’s his ability to use an AAC device because he will never be able to write. And then there’s the four pages of A4 targets on the fridge.

It feels totally overwhelming. Impossible. Even with 15 months.

But it also feels imperative. We have to set him up as best we can. We just have to try our best to achieve these things with him. But we also have to let him be a toddler who can’t toddle, a little boy whose life can’t just be about goals, but has to be about living. About play. About fun.

I don’t know how to square this circle. I know that school doesn’t mean the therapy train stops (more’s the pity). I know that Boo will continue to learn (that’s the point of school, right?). I know (I hope) we have time to help him. But I also feel totally suffocated by the prospect of the next 15 months.

Have we made the right choice of school? Will we get that choice without a battle? Will our LA get their act together enough even to transition him to an EHCP before he gets there? Will we have done all we can to ensure he has the smoothest transition to school possible? Will it be enough?

I just don’t know. And that’s hard to deal with. Really hard.

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Good News Friday #s 17, 18, and 19: Three for the Price of One!

I haven’t put up a Good News Friday post for three weeks. In part, it’s because I went on holiday and so other things (good newsy things like excursions and family time) got in the way. To be frank, the first Friday of the holiday also coincided with a big upset in Boo Land, occasioned by The Grumposaur saying he never wants us all to go away again as a family for 2 weeks) and I got very upset and not in the mood to write upbeat stuff. Things improved dramatically by the following Friday, but by that point apprehension about getting back to normal kicked in and I couldn’t bring myself to write a GNF post then either.

What a little ray of sunshine I’ve been. And it’s such a vicious circle. I felt down so I prevented myself from thinking about all the good things going on in our lives, which made me more down, which … oh you know how it goes. I also really missed hearing the good news people share in response to the posts in the comments on Facebook or Twitter. So enough already. There have been done rough old moments in the past three weeks, but here are just a handful of the highlights:

1) Fun with the Boos. Yep it got hairy at times (and more sleep would’ve been nice) but I had some brilliant times during our trip away. We did some fabulous things and went to some lovely places. (More on some of those in my catch-up Play Agenda post coming soon). We laughed a lot. We were silly. We broke some of our rules and ditched our routine. It was great!

2) No work. I have tried not to work on holiday before. I have never entirely succeeded. The flip side of a job with flexibility where you can be at work at any time means you are usually at least partly at work most of the time. It doesn’t help that The Grumposaur always works when we’re away (a hazard of being self-employed) so we always stay in places with wi-fi and always have a laptop. But aside from a couple of emails, I did no work at all. And while this means I am rather in the doo-doo for the next three weeks, it was lovely and, to my surprise, I didn’t miss it much at all.

3) Finding a swing Boo could swing in. I’ve blogged about this in the past week, but I just have to mention it again, because the mere act of typing these words puts a smile on my face.

4) The kindness and knowledge of the Twittersphere and Blogosphere. Before we came back from our holidays my anxieties about us still not being seen by the OTs (health and Social Services) to get Boo some postural seating before he develops scoliosis really took hold. I wanted to do some more research on possible seats and how we might fund them without going bankrupt so as to be armed if, as has happened I got back to find that despite being urgent and both OT teams wanting to see him, they can’t yet because of the length of the ‘urgent’ waiting list. So I put up a tweet and a request for advice on Facebook. I was overwhelmed with dozens of responses in minutes. Folks I don’t know from Adam retweeted and shared and within an hour I felt better informed than all my hours on the internet desperately searching for information had made me. Thank you!

5) Boo’s posture. I am genuinely worried about him developing scoliosis. When all four of your limbs have a tendency to spasticity and dystonia and your trunk tone is low, well, let’s just say things are hard on your back. When you’re big too (at 14.5 months corrected he weighs 10.5 kilos) it’s even harder. But those worries aside, Boo is seating (supported of course still, but with much less support) without the persistent C-shape in his spine that I never thought we’d see the back of. He reaches for his toes in sitting now and when he inevitably bends double and his head hits the floor, much of the time (not all, but much) he can push himself back up. I remember his sister doing this days before she sitted unassisted. Now days in Sissyboo’s life can lasts months for her brother, but you know (shh, don’t jinx it, fingers crossed) he may be getting there. He may be heading towards sitting one day. Don’t worry I’ll tell you when he does. I may light beacons, ring every church bell in the land and streak down my high street too.

There have been other good things, too, but since many are tied up with the things we did while away and I want to blog about them separately, they can wait. But I can’t wait to hear your good news. So please do leave a comment, or send me a tweet (@premmeditations) or hop over to Facebook to let me know. I’ve missed hearing from you!

Good News Friday #16 and The Play Agenda

Well, it’s been a much better week in Boo Land, I must say. There have been a few annoying gripes, so I’ll get those out of the way first. We’re still beating our heads against a brick wall for some of the many referrals we have for Mr Boo. I’m not that worried that we’ve been on the list for Speech and Language for 8 months, but the fact that his 2 OT referrals (health and social services) have not come through yet is really getting to me.

Boo still can’t sit. He has inadequate trunk control to sit in any high chair we’ve seen and the stiffness in his arms as he tries to manipulate objects while in a seated position means he is in danger of doing some serious damage to his spine. We have been using a Cushi Tush for months, and that has been marvellous and got us around these problems to date, but he is about to outgrow it. Our physio and Early Years Co-ordinator keep firing off emails, but we still don’t seem to be moving up the list. Grrr…

The other bit of not so good news is that I have been a bit unwell, with some bizarre symptoms I won’t go into. Basically, it seems that I have a vitamin deficiency, not due to poor diet, but stress and exhaustion, which has depleted my B vitamin stores. I have been told to rest and exercise more. I don’t think the GP was impressed when I laughed and said ‘Well, if you can tell me how I can make that happen I’d be delighted’. I will try, of course, and, best news of all, we are going on holiday next week for two weeks, so that will no doubt help. But yes. Fitting in two more things in my life without any real option to drop anything seems a bit impossible at the moment.

Anyway, enough of that. On to good news. The relief of Mr Boo getting his one-to-one back, and in fact more one-to-one at nursery, has me feeling a whole lot better this week. On top of that we had a brilliant physio session at the nursery on Monday where I felt they all got a much better handle on Boo’s needs. They’ve agreed to move him on to the next room (he’s currently with non-moving babies who are significantly younger than him) and although he’ll still be the oldest and lest physically able in the new room, the kids he’ll be with are closer to his cognitive level, which has to be a good thing. His new keyworker is lovely and seems to belong to the Mrboosmum school of Boo care. No, we’re not giving up. Come on: see this shiny thing. Distracted now? OK good, on we go.

He seems, also, to be making tentative physical progress, too. I am hesitating as I type here as I’ve been here before and been disappointed, but Boo seems to me to be a little closer to independent sitting. He has developed (only about 8 months late, but you know, we’ll take that) an obsession with his feet, and as he attempts to eat them while sitting his saving and propping reflexes seem to be improving. He seems to be better able to push back when flopped forward in sitting. His back seems to me at least to be a little less curved. I may be wrong, but please don’t let me be wrong. The day Boo can sit will just about be one of the happiest of my life. My back and I will have the biggest  party ever. I’m not putting out the bunting just yet, but I know where it is. Just in case.

The other great news this week is that my lovely sister has taken a few days off work to stay with us and to look after Sissyboo for a few days while I work before going on holiday myself. It has been fabulous to have another willing and capable pair of hands around. She adores the kids, almost as much as they idolise her, and seeing them so happy together has been fabulous. And it’s meant, she says, seamlessly seguing into this week’s Play Agenda update for Not Different But Interesting, that I’ve been able to pass the baton on so that Sissyboo can do some fun and educational things while I’m busy tapping on the keyboard.

This week, she went to the cinema and did some modelling. She also went to a local National Trust house and gardens (we’re members so it was a cheap day out) and had a picnic (made by her own fair hands) and started working through the 50 Things to Do before You’re 11 3/4. Perhaps most exciting of all, she went to the Natural History Museum for the first time and had an amazing time seeing the dinosaur and human body exhibits. She was especially taken with the butterfly and caterpillar exhibit (she has been in butterfly class in her reception year and they have become something of an obsession). Apart from getting annoyed with the ‘silly people’ who kept touching the butterflies, she had a terrific time and has been poring over a butterfly book we bought her some time ago ever since. We seem to be pacing things well. She was a bit tired after the Natural History Museum. But the long day, short day, long trip, very local, costly, virtually free rhythm seems to be working well.

Of course, there’s a part of me that is sad that I can’t do all of these things with her myself. But she is having a ball and the important thing is the experience. It does mean relinquishing a bit of control, of course. My sister bought her an Alvin and the Chipmunks DVD that I think I would have tried very hard to persuade her to pass over for something else and she allowed her to get a Katie Price pink pony book from the library earlier in the week. When my sister saw the look of horror I couldn’t quite hide on my face, she said: it’s OK, I’m sure she didn’t write it.

But there’s still been some time for Mummy and Sissyboo and I’ve especially enjoyed bedtimes. We’ve been reading the first Famous Five book (should finish it tonight) and it to see the look of unbridled excitement on her face as they get into scrapes, drink ginger beer and some ruffians threaten to shoot Timmy is just priceless.

So it’s all good really. But best of all, we have two weeks together now. It’s the first two week holiday I’ve had with Sissyboo since she’s been born. And I can’t wait!

I so hope you have good news to share with us. We love hearing from you.