"Mummy...when will my brain be ready to do jumping?"

[Lougle]

..said my 5 year old

Sometimes, I think children like her are the most 'disabled' children out there. In that awful place where they is 'disabled' enough for their lives to be different, but 'able' enough to know it

This thread is a bit daft now. I wasn't posting to hurt anyone. I was posting because I was hurting for DD1.

Fanjo, I don't see you as a scapegoat for any kicking. For you, this whole thing is especially cruel, IMO (and only MO) because your DD HAD skills, she HAD developed, and it was robbed from her.

At least for me, DD1 has never jumped, hopped, skipped, drawn, written, spoken clearly, etc. The DD1 I know is just DD1. Not 'DD1 who used to be like.....'

I guess I feel like every time the wound starts to heal, and I get used to what may be, one of the other girls has a huge development spurt, and I think 'Oh My Goodness...DD1 is disabled, I'm not just making it up...'. You'd think that her being at Special School might have given me that clue already

Even this week, as I was having a progress review with DD1's teacher, she said 'As long as DD1 doesn't have any worsening of her epilepsy and started having loads of fits, etc., then I think in time she will read basic words and write basic words'.

That floored me, because although I have it in my 'decision' part of my brain that it is possible that DD1 will not read or write fluently, my heart had obviously skipped it. Hearing that DD1's potential is to possibly read and write basic words....it's gutting. The thought that she won't be able to be a book worm like I was as a teenager.

Don't get me wrong, her school are fantastic, and they are going to start the phonics programme with her, /s/ /a/ /t/ floppy, biff, and chip. But, I know that right now, the only letter she recognises is the initial letter of her name. I also know that she thinks that every word that begins with that letter says her name.

Her fine motor skills are really weak, with slightly low muscle tone. But, like everything else about her, it seems that it's bad enough to cause her problems, but not so bad that there is anything they can do about it.

Peachy, school have in-house NHS OTs, in-house NHS Speech Therapists and in-house NHS Physios (did I mention how lucky DD1 is to have this school??). However, in general, Physios have always signed her off because there are no 'structural' issues they can work on. Her issues are (likely to be) perceptual, sensory, balance, etc. rather than tendons/ligaments/boney issues.

She does a 'Rainbow Road' OT programme with her Teachers as part of her school day, and that is overseen and reviewed by OT regularly.

She does S&L work throughout the day, as part of her lessons, and then the Speech Therapist does a Communication Group with her class to work on their needs. The teaching staff then use the techniques throughout the rest of the week.

So, I am lucky, you are right. I'm sorry people were offended. I wasn't saying that your more disabled children were in fact less disabled than DD1. I just get fed up of her being disabled enough that I fear for her future, and not so disabled that she is blissfully unaware of it. I worry that she will be one of those adults which the Daily Fail likes to hold up of an example of a soft benefits system. The sort of adult who seems like she should somehow be able to cope with life, but in reality can't.

i was being daft.

I wasn't offended though :)

Sorry you are having a rotten time.

That progress report with the teacher sounds a lot to take in, so no wonder you are feeling low. :(

Lougle I am glad she has all that provision, I know my Uni has a fab ex-OT and I could give you her name as she takes private but no idea how much she charges (she's my course leader now). So that's why I asked but sounds like that's covered.

I don't belive when it comes to support that the nature of the disability matters: what matters is the feeling experienced by the person reaching out. I know many would kill for their child to have 'just' ds1's dx but I also know how hard it hurts at times and how difficult his individual oresentation can be.

Everything else you said- the feeling of making it up, the distinction (or how I explain it to me) between knowing and accepting- rings true as anything to me. Just IME the only thing that changes that is time (spent ds3's first year at SN Bse expecting him to be kicked back into MS, same for ds1 now!). I think ds3's professionals thought me very negatively focussed when I kept saying I didn't think ds3 would ever work and always need care and did they agree, but school recognised that it was just a need to have someone confirm what I was actually seeing if that makes sense?

In fact with DS4 I have actively said I don;t want a dx yet, just to have him observed for a while, as I know I can then not convince myself I talked anyone into anything or misrepresented things, not as if we will suddenly get services materialising that don;t exist for otehr two so what's the rush? Only my Mh to consider really.

And,.,I must say, having the provision is "lucky" in a way..we have it too..but it's still a lot to accept, I still have to fight not to be teary when I am in DD's school as it's a reminder of how severe her issues are. So be kind to yourself.

why isn't the physio working on her balance then? (sorry, don't mean to sound bolshy! i'm a bit confused - it seems entirely logical that it's the perfectly sensible thing to do...) we have (and always have had) joint physio and ot to work on balance, perceptual, and sensory... often with neuro stuff that's the key thing in terms of brai plasticity - you go through the movements and exercises over and over again and hope that connections are made in the brain... are they not doing any of that with her?

we have similar issues with dd2 in terms of ability/ cognition. it was one of the reasons we are (still) pursuing her birth injury legally - not for compensation (we are unlikely to get any in any case) but because she will want to know exactly why she can't do stuff, and why it happened to her specifically, and not someone else... it is tough.

with dd2 the jumping thing was helped enormously by getting a vast trampoline within a year she had gone from being unable to stand on it, to be reasonably proficient. it did take a while to get the hang of edges (we practised in the pool with her 'jumping' from the side)

i know it isn't really about the jumping per se.

That is a good idea though, could she jump on a trampoline? At least so she could enjoy the feeling of jumping like other children.

My DD can't jump well on land at all but can bounce around on a trampoline and loves it.

Don't know why physios aren't interested in DD1 tbh. Been referred 4 times, and every time they discharge her.

We do have a small trampoline in the lounge - DD1 chooses to do roly polys over the handrail

We were referred several times too and discharged.

Sadly it was only when we got a DX that they actually took us seriously and gave her more input when SHE hadn't changed.

We take DD to a park which has huge trampolines set in the ground, that way she can hold our hands and jump up and down and feel secure, would be good if you could find somewhere like that for your DD1.

I think there must be some big drive for NHS physios to discharge people too, I have just been discharged after a few treatments for whiplash even though i am no better in any way.

oh yes, those little ones with handrails are fairly pointless ds1 used to do that constantly, it drove me nuts.

we spent hours on the trampoline with her fanjo, holding her hands.

nhs physio sounds v wearing at the mo. we've been out of the country for 2 years, which sounds like a good thing (dd2 is 8 now). i do wonder if you're being a bit fobbed off though, lougle, however good the school is. probably a finite resources thing and other children in greater need etc, but i wonder if some targeted physio would help. i don't know what the 'rainbow' ot programme is, is it possible she's getting that sort of help through ot? i know there was a lot of crossover when we were nhs...

DS3 was seen once and discharged for ever, he used to fall over all the time though and had rubbish balance: doesn;t fall quite as much now but still can't do a lot of balancey things.

The Rainbow Road is an OT package, which has tailored programmes for improving balance, co-ordination, gait, etc.

I do wonder if I need to get a private opinion sometime. There is truth in the fact that although DD1 does have clear difficulties, she is in a school where some children don't know how to sit, walk, or bend their knees....so a huge range.

it's one of the reasons we went for ms, tbh. dd2 would have been the 'most able' in ss in some areas, whereas in ms she was the 'least able' and so automatically attracted the most help. really sad when it comes down to comparisons just to get funding, rather than need.

Lougle, I think it's worth getting a private opinion if you can afford it. Ds2's OT told me to get him privately assessed as he needed Sensory Integration and it wasn't available in the public system. We are in Ireland though and services for children with SNs are rubbish.

Sorry your dd is sad. Ds2 used to be a bit like this but has improved hugely in secondary school.

I see your point. For us, DD1 has a shot at some independence in a SS environment. In MS she would be totally dependent on adult supervision/support/help.

so many things to think about... i'm sending some jumping vibes, anyway. x

Ds2 can't jump on a hard surface but he can jump brilliantly on a trampoline
( and do seat drops). I am hoping that jumping with feet together on land will come in time. It seems very common in children with developmental delays: Ds1 has dyspraxia and couldnt jump until he was 7.

trampolining, as others have said, could be a real help.

dd1 used to do the whole preparing to jump - really great, woudl line up well, feet nicely placed, bend knees, tense up ready to push off....... and then step off the chair/stool/box/wall/whatever.

she could bounce well on trampolines holding hands, though, which slowly (veeeerrry slowly) increased to jumping. and then to jumping off something holding hands (more of a step-jump, but with more jump than the previous stepping off). also lots of jumping holding hands when she was standing on the floor - gave ehr the practise for jumping off a step or similar, as she repeated the movement we had been doing for ages.

she is 7 now, and can jump well enough. she did have lots of trampolining at ehr last school though - both as freeplay at school, and also during her last couple of terms she had trampolining sessions at the local leisure centre.

her improvement has been recent, though - before this summer she could not jump off a stool - but dd2 has been obsessed too, and so dd1 has had a good model to follow too. lots has seemed to become clear almost overnight for her - she can now walk confidently, at a good pace, up and down stairs with cross tread without holding onto handrails - I was when i noticed htis (at rush hour on the tube) at the weekend.

urgh. will be thinking of you next week. hope something crystallises for you. i think i'm about to pull ds1 out of school, so it's all on the bus, off the bus here at the mo. will look out for you next week, good luck x

Haven't read this whole thread but struck a chord as dd is moving into this territory at age 4 (low tone, fine motor issues etc). I have always told her that her brain was poorly when she was born so she does have some idea of why she isn't as physically able as her friends. However, nothing really prepares you for that question

Like Madwoman and others have discussed - trampolining has been great for dd in building up strength and balance. She can jump on one now albeit oddly!!