dd will be a non-walking pre-schooler and start reception with significant mobility issues.

[Jenkeywoo]

dd was 2 last week and has spastic diplegia. I saw the community paediatrician today and told her how I feel very upset that no-one can predict the future - we have been told dd will walk but not when and if it will be unaided etc. Well, the paed then told me that it would be better for me to prepare myself for the fact of dd being a non-walking pre-schooler and to have significant issues in primary school. I feel a bit sad but also a bit relieved that someone has been honest with us. She also said that we don't need to worry about sorting out extra support for pre-school etc until she starts there when she's 3 - I think I need to ask for an assessment for her to see if she can get a statement and from what I've read here I need to do it straight away. What do you think? I'm assuming that if she can't walk she will need extra support and will need it to be in place before she starts pre-school.

Any advice on this much appreciated.

Oh and if any of you remember, I posted a couple of weeks ago about being very distressed and having post-traumatic stress disorder - well I talked to the GP and have just started anti-depressants this week which I hope will help, I've also managed to find a local charity offering counselling which I started today so hopefully I can get strong again so I can keep fighting for my dd.

My DS has triplegia (both legs and left arm affected). He is nearly 5. We had his support sorted out before he started his nursery placement. You need a referral to an Educational Psychologist. Waiting until she starts at nursery is far too late - it is simply not safe to have a non-walking diplegic child in a school with no support. My son was walking when he began nursery, but he is very wobbly and falls over if anything crosses his path. I am seriously thinking of taking his wheelchair into school when he starts in September, even though he will have support. I would definately push for a statement. Our Council pushes parents to go down the 'Early Action Plus' route, but my personal opinion is that for a child with complex needs like CP, then they need a proper statement.
Good luck with it all. Hope the anti-depressants kick in soon. If you ever need to talk, I am always here.

I don't have direct experience of physical problems such as CP, but I agree with Nat1 that it is better to try and sort out support well in advance. Can't see any reason for you NOT to apply for an assessment for a statement right now.

Hi Jenkeywoo

My DD has Down's syndrome and when she started at her mainstream school she was a non walker. She bum shuffled her way round. We got her using a walking frame and then with the dedicated help of the other children she took her first steps in January, 4 months after starting school. It was quite a while after that she was confident enough to get around without the frame but she did eventually get there.

Point of the post is really to say that it was wasn't an issue for my DD, certainly wasn't an issue for the other children who didn't bat an eyelid and the teachers just got on with it and took her mobility, or lack of it, in their stride (aha ha ha, pardon the pun!)

With regard tot he statement thing - yeah get going. They take ages to sort out even if things go smoothly. We were refused at first, I was told my DD was developing "age appropriate skills", to which I laughed in their faces, asked what was age appropriate about not walkign and talking at 3 and got her her statement at 3 yrs old after a bit of a fight. Did help to have it in place already when she went onto 'big school'.

Good luck.

Would Portage be able to get involved/help?

Thanks for the replies - I'll investigate getting the statementing process started.

Katymac - we have applied for portage before xmas but have just got a letter saying the waiting list is really long so not to expect even an assessment visit before July - it's a real shame as I know portage can really make a difference.

I'd chase that up occasionally if I were you

Hi Jenkeywoo, my DS aged3 last month also has spastic diplegia CP and is a non walker, we are about a year ahead of you in all this! Do apply for a statement now. We applied at 2 and it's still not in place as they are refusing to put SALT in part 3. However he started nursery 2 afternoon sessions a week in January but they will not take him for a 3rd or any morning sessions until the support (TA) is in place for health and safety reasons. His statement has provision for all the TA time we need but they won't release the money for it until the whole thing is settled and since were not happy with the SALT we are stuck, it's a real pain as Ds loves nursery and would really benefit from more sessions.
As for walking. He crawls around the hall that nursery is in, or cruises using the furniture, he also has his frame for playtime etc but we are discouraging it's use inside as it doesn't help him learn to walk. He uses sticks at home but he's not stable enough yet to use them where there are so many more children. the physio and OT have been in to assess the placement and are providing seating for him that is more appropriate.
As for primary school - I have looked at 7 now and am still going....
Feel free to CAT me if you want to ask more details or anything

please go to the ipsea website and use the forms available to request a statement for your child, it really does need to be in place for when your child starts nursery/pre-school for your child to receive the support to which they are entitled.DO NOT be fobbed off that statements are not available before school this is just not true.
Do not accept the first proposed statement without seeking advice(as we were walked all over with the first statement- and found it very hard to change as the lea will just keep maintaining it as it is easier!
Things you can do to help with your initial letter to request a statement

1. Ask all the health professionals to provide a detailed report of your childs needs and to send it to you by a set date(ie a week after your appointment with them)
2. Ask a friend with a child of a similar age to write a letter stating the differences between' their nt child of the same age' and your child.
3. Get a big file and keep everything- photocopy reports before they go so they can not go missing,

Good luck but you really must do this now!

if you need any help please ask here(without mn i certainly would not have got this far!)

my dc has cp(originally diagnosed as diplegia now changed to quad-started school not able to stand or walk unaided but now uses a kaye walker out doors only)