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

I have to say that I had to turn the I won't drop the baby programme off, I found it far far too depressing and anything but normal. Maybe that's me, but I felt that the BBC were highlighting what was wrong not what was right, and that it was tokenism. I want my ds to be independent but like everyone else and as such I would much prefer this to be closer to the ethos of something special where the disabled are just like the non disabled. If they can get it with Cbeebies, why can't we have it with soap, drama etc. This made it all too different.

Anyway having a really shitty time here at the moment. DS has got "stuck" and decided that he doesn't want to stand (as its funny to fall) so back to weekly physio - both on the ns and private, nursery wanted to refer him to SLT (despite the fact that he is 22 months corrected and now has 25-30 words and some two word sentences - must count them actually) the physio got as cross with them as I did and said that if there was a speech issue they would have picked it up. They are also looking at statementing for nursery. has anyone come accross this. Allegedly they say that DS now needs a statement at 2 to get the medical hours (he's already on SA+ or whatever its called) and that without a statement at nursery it will be impossible to get the funding for school. The paed when we saw her earlier this month said don't worry about school that's their problem not ours and they will get it sorted). I think it is becuase of some free flow they want to introduce into the room for 3 and 4 year olds where I can see DS getting knocked over.

My best friend from College came over with her two year old who was depressingly precocious and bilingual, and could run, climb, talk in two languages and do all sorts of things DS can't, and she was also pregnant again. Dh and I don't thinkw e have learnt to cope with DS so another child well it sends DH into a frenzy and foul mood telling me I must be mad for even thinking about it.

DH keeps saying he wants to meet a family who are like us with a child who is the same age or older with Diplegia so he can talk to someone who knows how he feels. I know two families locally but one has a hemi son, another a quadriplegic daughter and although i find them helpful to talk to DH wants to meet someone exactly like us. Anyone happy to volunteer to talk to him in east anglia or London. Otherwise I fear he will bend my ear into an absolute fury.

Try contact a family? They have all sorts on their books.

Lol at dh though. Tell him to relish being unique. Even if you find an identikit family, they are bound to have a different lifestyle or outlook. Impossible to find family twins, really.

We have one other family with a daughter with cp in town. She's a couple of years older than dd2, and has hemi, not athetoid. She has a big brother, whereas dd2 has big bro and sis. She's also adopted and spends some time with her birth family. There are a lot of differences, but dd2 loves that there is someone else with cp that she knows. It helps that the girl is very forward and outgoing as well. A great role model.

I would let them refer to speech anyway... You know the wait will be a while, and they will just do an assessment in the first instance. If (when) all is well with the assessment, they'll not recommend therapy. Too many kids on the waiting list!

Dd2 wasn't statemented for nursery, but it was done in her preschool year ready for yr r. The lea still paid for her to have 1-1 support at nursery on school action plus. It is very postcode dependent thou... Maybe speak directly to the area inco at the LA to get some advice?

there - I've always worried about meeting other families - when dd3 started school here at age 3 (we live in US) she went only with sn kids, so I had to meet them, and there is always someone worse off - either you see the other kid can do loads more, or your own kid can do loads more of something, so I would always feel bad. I've had a lot more years to get used to it (she's 10), but I do see her as dd who happens to have cp, not a cp child who is my daughter. (not sure if I'm making any sense here). For example, she has a new aide at school (since last week) and I'm really not coping very well with this lady greeting me every day with "how much she loves looking after special needs kids, because some people won't do it you know". it makes me want to tell her to go and find a special needs kid to look after instead of dd. (sorry to rant...)

We had a fabulous time at Disney over Spring Break - dd loved it , and I loved the special card which meant we didn't have to stand in line. (Only waiting for the wheelchair accessible car on the ride for example).

Hello to everyone, and hope sneezecakesmum's dgs's gtube is going ok. I covered dd's temporary tube with a gauze dressing if anyone was likely to touch her in those first few weeks, and we still use the slimming belt over her clothes for the gait trainer so she can't catch the button on anything.

Thanks wentshopping have text that to DD as DGS is back in the germ factory nursery tomorrow so she will do that. Is a slimming belt a neoprene type band with velcro at the back? Sounds like a good idea for the gait trainer - the tube is quite obtrusive. They are going to cut out a section from his new standing frame which has been ordered. Also he gets excema from the non allergic tape but DD can get some brown sticky stuff they use in scbu to hold ng tubes in to see if that is better. complicated eh!!
Lucky you at Disneyland! DGS loves roller costers and screams at roller coaster rides on youtube!

Tend to agree with never finding a like for like family, but it is good to see other similar children, or parents who are maybe coping a bit better so that you see it can be done? Its difficult having a SN child, not because of the child but society in general and eejits like the school aide!!! Its horribly depressing to see NT toddlers and how easy things are for them, even when they are totally loved members of your own extended family

I agree it is useful to swap information with parents, but agree, it is hard to see similar and nt children doing things that seem so out of reach.
Yes, slimming band is a neoprene band that fastens with velcro - bought it at a sports shop, so it doesn't have the associated special needs price tag. He'll probably look like a mini olympic wrestler if he puts one on. Ours covers most of dd's torso, so there's no chance of clothes riding up and button getting snagged on something.

Oh it was just the gentle rides we went on, many times. I'm too chicken for rollercoasters. :)

Brilliant idea re slimming belt, been racking my brains on something similar! Went to nursery with a gauze dressing, came home without it Cried as usual, but probably enjoyed it. They said he feels more solid - maybe the peg feeding is working! His ribs have disappeared

Another one too scared of rollercoasters - make me throw up to boot!

DGS Just weighed and has put on 2 lbs in 3 weeks! Like a bag of sugar!

Bless him. And yay for making the most of all available feeding methods

Thanks...He even had the strength to get into a squatting position and push himself to standing. Holding our hands of course, even I struggle with squats!

Great weightgain

Thereonastair - dd is 2, 3 in July. Up for meeting in London some day. Funnily enough I was talking to my friend today about the exact same thing - that we'd like dd to meet another child with diplegia, similarly affected. There is a SN drop-in near where we live but hardly any physically disabled children attend.

Hope everyone has a good break over Easter regardless of religious denomination

Me too. DGS is off to the brainwave duck race on friday. Hopefully dressed warmly!! Last year was sunny and warm. Was going anyway but have to turn up now even in snow as a company are going to sponser DGS for a year and want to meet him... so he is now totally free! How lovely..will send a special card from lil monkey. Hope he doesnt demonstrate his new trick of grinning manically and nipping arms!

I love those duck races! Hope littlesneezecake had a lovely time

Cried at his sponsers family, snotty again from nursery, given it to me and his mum, and is a giddypants today trotting around in his walker!

Thanks hope you have a lovely easter and lots of easter eggs [busmile] xxx

Very quiet here.

Bumping so I don't lose you

Hi all - hope everyone enjoyed Easter! We're just back from the nightmare that is buying shoes to fit dd for school arghhh.

I am very excited because dd has been offered the chance of using some brand new technology to improve fine motor skills by strengthening neural pathways. I'll let you know what it involves if anyone is interested? Fine motor/accuracy is where dd really struggles so fingers crossed

Very interested, but doubt we are near enough to access therapy, as usual! Even just an idea of the methods when they are used will be of interest.

It's a device to fit onto a computer - apparently in the early stages of trials but very exciting results so far! We are hoping to borrow one so will let you know what it does and if I can find out more about when it might be available on the open market.

thanks

that sounds really interesting. If it improves neural pathways I wonder if it would help with gross motor skills too?

Mobility DLA form submitted this week. Felt a bit sad afterward. More so than last time. Should get response within the next 6 weeks or so.

How is everyone?

Always a bit of a downer is getting the DLA stuff done, almost worse when HRcare and HRmobility granted without a murmer!

DGS today had a symmetry test done today. Managed it despite ear splitting screams, bless him has had so much done at such a young age has zero tolerance. Anyway when everyone ears had stopped ringing they explained it was a set of measurements to assess body symmetry and our trust has been ground breaking in this, and since it started they have not had any more cases of dislocated hips in children (did DD have this inhibernation?). They use the tests to look at sleep solutions in particular and they are tailored to the child. Kind of to get the child to sleep in a way that minimises contractures and those sort of problems. Interesting (now to get DGS into his own bed!)

Also read about a 6 yo girl who had SDR at bristol in january and is starting to walk without aids and stand, still early days but an absolute relief for parents of diplegic children in this country who were having to fund raise for the usa.

Hi all - just bumping

Hi all. Just checking in. We went to our brainwave assessment. It was very very good. The PT and OT said that DD has a variety of issues, most of which can be improved, they also said that several of the issues could have been mitigated or even prevented has we seen therapists more regularly. They were shocked but not surprised at the fact we hadn't seen anyone since October last year. It transpires that dd's stiff shoulders and tight right arm are being exacerbated by poor core control. This didn't surprise me. DD was high tone all over, her tone has normalised but it seems she learnt to sit and stand etc using her tone not muscle mass. This means she doesnt transition between the floor and standing, she doesnt kneel, and hypermobility also creates issue. We have been following the programme and have seen some improvements already, which is brilliant.

I now have an issue of trying to source equipment to help DD, we are trying to find an affordable Kaye adjustable bench but can't borrow one and they are very expensive. we finally saw salt too recently and they have dx a language delay. I need to try and find a wrap around something to improve DD sitting, anyone used one?

But onwards and upwards. DD weight is stable, her hearing is ok, the numerous ear infections have left her with severe glue ear but we hope she will avoid surgery. surviving the fine motor application sounds amazing, that's anothe area of work for DD, we have an iPad to help her already.

sneezecakesmum I hope your DGS is home and doing ok?