Reality strikes

[badkitty]

Just had really depressing meeting with OT who had come round with equipment rep to look at getting some sort of high chair for DS (8 months, cp). They were intending to give him the Breezi chair which is relatively "mild needs" and he looked so happy in it trying it out and playing with things on the table (has been stuck in tumbleform till now so not being able to play with things on a table or be upright at all). But the OT thought that he needed more trunk support as when he relaxed in it he slumped a bit (not loads at all) to the side. Said he would probably be fine in the Breezi in 18 months or so! So this means we are going to have to have something much more specialist, which I didn't want for him really, but its not that which is upsetting really, just feel this is a kick in the teeth for hopes of him ever being able to sit independently let alone ever walk. Think that 'they' have already decided that he won't - maybe I was stupid to hope. But he is doing so so well at the moment - just started pushing up on to all fours (although currently displaying a real shiner from toppling over into the corner of his cot - oops), trying to creep/crawl in his own unique fashion - was feeling quite positive.

Also annoyed as the OT who has only seen him once gave us a programme of exercises which are mostly just inappropriate - loads of stuff about getting him to hold his head up while on his tummy etc - he has been doing that for ages for god's sake - I think she got a bit of a shock when she saw him on all fours! Think she just gave us a standard set of exercises without taking into account what him can do already.

So feeling very depressed at the moment. My poor little lad - when this all started I guess it never even occurred to me that he wouldn't even be able to sit up on his own - walking etc I guess I always knew would be a problem but sitting seems such a basic thing doesn't it.

Professionals usually take two forms: the complete pessimists and those who like to fill every gap with 'well you never know....' (such as the paed who tells me autistic ds3 may well recover- yeah OK

Go with your gut instincts

You are the one with your boy, not the OT / SALT / etc etc etc

thought about BIBIC? just thinking they actually seem to design stuff to fit the child that actually exists

(www.bibic.org)

BTW if he's trying to creep, responsding positively to the lpay opportunities of the breezi- he's doing OK

Thanks guys - feel a bit better already. I had never even heard of BIBIC so thank you for that - will investigate.

Our ds is 2.7 with cp. He's had a Jenx Bee - so a "specialist" chair - since Easter. My understanding is that it gives him feedback on where his body ought to be in order to sit properly. Our physio told us he should spend up to 3 hours a day in it - so he eats sat in it.
My ruck with it is that it's very passive therapy for him.
So he also gets lots of stuff from me all day long to improve his core strength. I would have thought your physio and OT should be showing you how to work on this. Today with our OT we were also talking about sitting him in an ordinary chair with a wedge under him and an easel to play/draw/etc on to encourage him to straighten his back out (obviously for short periods of time).
FWIW we've also had useless reports on ds. They drive me mad since they're written by people who haven't spent enough time with him to know what he is or isn't capable of. I take them with a pinch of salt.

From what you've written it sounds like he's doing really well (certainly he can do more than our ds and I think he's doing fab!).
Did you see the thread on here recently about books for cp? (Saw it at the end of last week and splurged.) Hope they'll have a few top tips too.

As the others had said it is impsooible to say at 8mths how your ds will develop. He certainly sounds liek he is doing very well.

DS2 learnt to roll over at 12 mths, still had poor head control & was unable to sit unaided. But at 6 he can run around unaided.

I realise this isn't always the case & we ahve been very lucky but don't let one OT piss you off, it is disheartening BUT you know him best.

I know we are v lucky with how he is doing at the moment and am so proud of him - I was having a bit of a moment earlier though, you know what I mean. Am I being totally superficial though to hope they will find him something which doesn't look too hideous?! The jenx bee looks quite cute, something like that would be alright I guess. Its going to take at least 3 months to get whatever they decide on as well - even the OT agreed that it was doing him no good to be in the tumbleform all that time.

I could have wrote yr post a few years back badkitty. I just bought a v supportive, padded highchair

Although now she is in a proper chair at school, I can really see the value / importance of having some time out, a bit of a rest and a chance to focus on other things (like play / hand use - as riven says)

Agree yr lad is doing brilliantly. My dd pushed up on all fours when she was 3, didn't do it for months and we are working on this now (is 4) She can stand up holding on to something. I'm hoping eventually she may gain some mobility with the aid of a walker (we use one now but we need to help her transfer her weight and take steps)

Have you heard of the Movement Centre? Their targeted training therapy has been great for our dd and many other children I know with low tone around the torso. Its aim is to build core stability around the abs

I sympathise.
I had a moment like this a couple of months ago when we first started to discuss DSs seating assessment. OT wanted a Leckey Squiggle whilst I thought it was a bit too complex. Not in a 'he's fine - I'm in denial' type way (not entirely anyway ) - more that it was a little bit OTT.

Last week he had the assessment and I saw him in it and I LOVE it. Wouldn't have anything less and can't wait for it to come.
He was so comfy and supported he fell asleep sat bolt upright for the entire fitting and measuring . It will do him the world of good over the next few years and right now it is exactly what he needs.
But I did need to see him in it to realise that.

P.S Sounds like your DS is doing a fab job all on his own. Think of this as helping him along the way.
My DS, at the mo, has pretty good posture (tho is nowhere near sitting unaided) but he has to work so hard to do it, how can he possibly play and learn and interact as well? I figure if the sitting up bit is done for him, he can put all his energies in to learning and experiencing new things.
It may not seem like it (I know) but anything that helps your DS is a positive thing.
Unless it is a Monkey stander which is...well, just look at it. DS loves his, but then he does have a severe VI

Thanks everyone and thanks FB- the squiggle is actually the one the OT suggested today. I said to the OT that in the meantime I thought I would buy a normal padded highchair and get some foam to stuff in the sides and she said that officially she couldn't recommend it but unofficially she actually thought it would be better for him than being in the tumbleform so I am glad to know I am not the only one who has done this - I know posture is super super important but it is also important that he can as much as possible get to play and interact and try to feed himself/splat food all round himself to the extent he can.

Oh dear. Surely there must be a way to design these things to look halfway decent and not take up half the sodding room!

And not for an affordable price I guess either!

movement centre

they loan out standing equipment. That is what they primarily base their therapy on. DDs frame is much less bulky that what our physio was offering

We haven't paid anything out either - they applied to our PCT on our behalf who funded 3 courses of treatment

they are based in Oswestry and Newcastle

oswestry not that far from you tho riven - takes us about hour and half to get there from where we are

You don't have to be that local to them cos they lend you the equipment and you do the therapy at home. You generally go back for review every couple of months. A course is generally 9 months

They are keen to open more satellite centres to be able to access more people. Cos course not everyone has the means to get to them. You need a car cos you'd never cope with the equipment on public transport

maybe if that's the case might still be worth enquiring to see if there is any assistance available?

I think the basis of it is much more straightforward physio and to do with targeting muscle groups at a time using standing equipment. Basically, a child typical gains motor control from the head down - so a baby can balance their head, then has control of upper body, then sitting, kneeling etc.

For a child with a brain injury / motor disability they have had found that these control skills can be more readily aquired by targeting just the particular muscles at that level. Something to do with child not having to send out lots of brain signals for all their body - just focussing on the bit needed. They do this by customising equipment for each child doing the programme. Then its time and repetition (by using equipment regularly) that sees this work. Really is just training these muscles a bit at a time

So for a child working on controlling their own head, the support could be at the the lower neck say. My friend's dc has a frame for this purpose. But then he has quite good control in his upper body so the frame will then be lowered to the next pair of muscles needing work (obv its not always a straightforward sequence down the body with children with cp etc)

Works v well with children with low muscle tone around the middle.

My dd's frame started just under her chest. Now it is at lower hip level.

They're very good there at assessing children and taking on those they think it will work for. Their success rate is fantastic (obv their success is worked out according to what each child's goal is that is realistic and achievable for them - whether it be head control, sitting, kneeling, standing, walking)

Tis a shame it can't be pushed more 'out there' to physios. basically, its had to establish itself like this cos its very expensive and NHS not pumping this money into physiotherapy

That sounds really good pixiemason - another thing to look into.

Well the physio has just been round and she wants him in the Breezi, maybe with some extra support, rather than something more complex as she thinks he is progressing well and this will grow with him a lot better. She is going to speak to the OT apparently. I guess they are looking for different things from the chair really - will be interesting to see who prevails this time! Am pleased though as she knows him a lot better