support/information sharing thread for parents of children with Cerebral Palsy

[inhibernation]

Hi, was wondering whether you might find this useful? I've got a 2 year old dd with CP and have received many messages of support on my own thread (previously ladylush) but would find it useful if there was a general thread that anyone could pop in and out of - so wondered if you might too. Sometimes I have to wade through pages of the SN board to find anything that relates to CP so it would make access easier.

Let me know your thoughts.

TIA

Sneezecakesmum - I linked to the blog further down the page but it's here
www.brookedup.tumblr.com

It's early days yet but going very well.

Hairy - I think your blog is a great service to families considering SDR. Really helpful. I'm wishing the very best for you and your son!

Those of you with children with mild spastic diplegia, have you had any luck getting a statement for your child at preschool/reception level? DD walks unaided but is very wobbly and finds it hard to keep up at preschool. She also wears DAFOs and has a wheelchair for walking more than a short way.

Galena - my dd doesn't have SD but due to all her low/fluctuating tone and hypermobility dd was pretty wobbly at playgroup - and still is some days at school. We haven't had a statement for her but school were shocked when dd started that no IEP had been done by preschool! No-one at school has mentioned a statement (as yet) but because dd is really able cognitively they feel they can just manage the physical elements with extra TA support and OT input.

What has your physio said? I seem to remember them advising me about statements etc when dd was preschool age and that they could make referrals for Ed Psych to get a statement process started for school if needed..

Physio came to observe her yesterday at playgroup and says that yes, we should start the ball rolling now to get as much support as possible in place. She is also able cognitively so doesn't need learning support as such. She is, however, finding it very difficult to be at playgroup without me (Read that as 'If I don't stay at playgroup she screams until she's sick') and it has been suggested that this is because she feels so vulnerable. :(

We choose not to get a statement because we were not convinced that the involvement of the state/LA in our ds's treatement/education would expand his horizons. There were too many negative pronouncements too early about what his future might be. The "parents are in denial" attitude from officials accompanied by a "we know best" and pitying looks made us very wary. We decided to do/organise everything ourselves separate from Social Services - from Blue badges to DLA to Ed psychs to tutoring and education. We didn't want an ill equipped person with little understanding of who our son was or what he was capable of meddling in his future. The NHS Doctors and physio team, on the other hand, were always aiming high, never prescriptive and quite positive about what my ds's prospects were.

Galena, my DS has sd too and is cognitively able. He has had a statement since nursery, it's been invaluable especially since he wouln't have got nearly as much physio in school unless it was enshrined in his statement.

He struggled massively at nursery but when he moved to a more experienced school he thrived. He has 1:1 time for the health and safety aspects of it but doesn't need it for the academic side but post interventions, eg castings, Botox, ops.

Opps, pressed post too soon.

The statement has been great in ensuring DS is not left behind on the class, ie someone to carry the stuff he chooses while he concentrates on walking.

Hope that makes sense.

Hairy, have read blog and it is amazing. DS legs look so relaxed and straight. Did they remove 1 or 2-3 vertebrae to get at the spine? For children in this country to have this op is brilliant at last and I hope he carries on going from strength to strength. The op no fun I'm sure but the relief when it was over!!!

yakbutter re intrathecal baclofen pump. glittery (who used to post on here) her DS had one I think and it worked very well for him. She is mostly on SKIUK but sadly having some family problems at the moment so we have not contacted her via fb. But she is the lovliest person ever and so helpful she may still be on SKIUK. I'm so sorry your DD is severely affected and on top of everything else decisions about operations as well as her other problems.

Basically, there wasn't much of a plan and there wasn't a forum like this to refer to so we made it up as we went along. And that's how it worked...We're in London. Recall there was a waiting list for SLT and OT. Started at Ingfield Manor School for parents. Decided not to allow ds to be on a waiting list for critical skills so paid for it. OT provision awful - there weren't any - the ones that were around were overworked and had little time to spend. They found every excuse possible to not attend his school and assess him. Gave up on them. Took a view that state schools in our area were not going to be a positive option. Went private in education and organised everything with the paediatric physio team at our hospital. The consultants took over all aspects of medical treatment. We paid for extra physio when our ds was younger. I suspect we were one of the first to try multiple botox. I went to discuss it's use at a hospital in Belfast in the early days of its use (for Bell's Palsy there) I believe. If a school turned him down we found another school and made a note of those who were discriminatory. Interestly, the better the school the more open they were to different and the more willing they were to adjust. Had to tailor to strengths and weaknesses of ds because we learned very quickly that every child with cp is different - an understanding we found lacking in some of the people we met.

Yak, do I know you? Absent and name change? If so, I wondered how she was getting on. Voca sounds like it has made huuuuuuuge difference. How lovely! Dd2 had her squint operated nearly two years ago now. Amazing difference.

You are dealing with a lot more challenges than we did Yakbutter and from the sound of it you and your dd have made incredible progress. The underlying issues, I suspect, remain the same. There is an unspoken (and perhaps unrecognised?) resistence to the allocation of significant funds to disabled people because of the perception that they will not contribute to society. A sort of passive eugenics. Regarding the assessment for the sleep system (which sounds pretty urgent) - One thing we did: we paid for a private consultation with our NHS Consultant (to be honest they never charged us because they were so embarrassed about the waiting time) at the consultation (an hour) we got more done and organised than we ever could have in the fifteen minutes we would normally get at the outpatients clinic. Basically, she did her NHS work in the private hour. You need a friendly consultant to get this to work!!

Mm, that's what they told us in the uk. When we moved, the first eye dude said 'why have they not operated on this by now?' and booked her in. Your dd is more complex in terms of anaesthesia etc, but given that we had seen four consultants in the uk who felt that because her squint was due to a neuro issue and she had fluctuating tone, she wasn't a candidate. The Canadian one just looked baffled and put it down to an NHS-ism.

Glad she is doing well, anyway.

That sounds bizarre in light of all you have going on, lol. But I meant with the voca and being able to express herself in school at last. Must make a real difference.

Yes they will. But on case by case basis. I was pretty sure we were going to be refused because of dd2's cerebral palsy, but we got in without even an appeal.

I'm not asking any questions, we handed over a huuuuuge file of reports. If they didn't't read them, too bad. Dd2 is milder than your dd though. Did you also look at the US?