Do you find you have to fight for services for your kids?

[OrangeMoon]

Sorry this will probably be a bit of a rant here but at the moment my dd who is 4 has cp, she is currently in a mainstream nursery, i applied for her to go to the school attatched to it as she has a hard time ajusting to new people and surroundings (took her a year to settle in nursery) and i thought at least if she goes to school with her friends from nursery she may settle in better.
Anyway got a letter saying she has not been accepted as the school is over-subscribed but has been offered a place at another school 20 mins drive away (30 as it will be rush hour) i could appeal but have been told i will loose as the school is over-subscribed and would need to employ another teacher.

Also her legs have been getting increasingly tight over the past 6 months her paed says she doesn't need botox but when she see's him her legs are a bit looser than normal so he only ever see's her on a good day, i have had to get an emergency appointment with the physio tomorow as she is screaming in pain as her legs are so tight and she can barely walk.

I just feel like i've been fighting for treatment etc for her since she was born (she was 12 weeks prem) and i'm getting fed up with it all

Hi Orange, sypathise totally with the having to fight for everything, it's true. With the CP she should be entitled to a statement for school and if this is the case she should then be top of the list for a school place, not sure where you are up to with any of this yet with her being at nursery but it may be worth checking out.

Hi snuggle, we haven't got a statement, it keeps getting mentioned but i think i'd be better off trying to get one for dd by myself, not sure how to though.
Her paed did mention it months ago and if we had it then she would have got a place in my school of choice, but no chance now

Yeah they do take a while to get, I applied for my son's myself (he is autistic) and used the info I had from his assesments with the hosp psych, OT, physio, speech therapist etc. It is a while ago now but it was a very sucessful application (he has full time support in school) and if I remeber correctly I just contacted my local LEA and spoke to someone in the special needs dept. Good luck!

It took an age to get started but now that it has Im pretty happy with it (at the moment!) THe past 10 months (since my sons dx) seemed like one long fight! Fed up with calling people and emailing. Im afraid I think we have to though, its not right but we have to do it

Call up the LEA and ask for them to do an assessment.

You fight for everything. It's made as difficult as possible.

I tried for a blue badge was told no. Ended up going down there with DD1 in my arms, sitting her on the floor in their office and crying! They hand delivered it to me the same night with a note to say sorry!

Applied for a statement - was told no that DD1 was 'developing age approproate skills'.. I wrote back to say what was age appropriate about not walking or talking? Got my statement.

Was put on low rate disability at first, even though my Dd couldn't even stand up while my friend's son who also had DS but was walking was on the high rate!

They're all bastards. They don't let you know what you're entitled to and then when you find out on your own they make it so hard to get whatever it is.

I take the battle on with a smile, knowing i'm gonna get there in the end and that it'll feel so sweet when i get it!

Orangemoon, I know its no quick fix, but could you ask your physio to refer your daughter to an orthopaedic surgeon? They are usually the ones who decide whether botox would help, not paeds.

The tightness might be feeling worse for her if she has had a growth spurt recently - thats a common reason for increases in tightness/decreased range of movement. But your paed or GP ought to be checking her out to make sure there is no other reasion for her to be in pain - pain or discomfort can also cause increased muscle tone in CP children.

Don't apoligise for ranting, you are right, it sometiems feels like one big battle.
My ds is 4 also has CP & also 12 weeks prem. Hopefully her physio can help tomorrow. Good luck!

OrangeMoon,
Please go on to the IPSEA website where they have draft letters that you can use to request a Statement of special educational needs...do it today-get the ball rolling now!!
If you feel brave enough , phone up the LEA and speak to an Area Education Officer in Special needs and explain that you don't have a statement(yet)but how your dd really needs to be in this school-continuity of care,knowing peers-can you add any health and safety issues into why this school would be better than the one allocated..
Do you not have an Early Years Special Educational Needs Advice Teacher employed by the LEA that has assisted your nursery in their care of your dd?
any other questions please just ask...
love chatee(mum to dd now aged 6 with spastic diplegia cp who couldn't even stand never mind walk when she was in mainstream nursery and now in year 2 at a mainstream school and on a good day can take 20-30 steps before falling