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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Calling Mums with 7-11 years old children with cerebral palsy-I need your help please..

21 replies

chatee · 11/03/2006 11:53

Hiya,
I can see a very large battle looming with local lea over my dd's statement review which is supposedly being held in april and would like to know what provision other children receive...

my dd has cp diplegia but it has been recently noticed that her hand function is also very poor,atm she is 5.6 years and in a mainstream year 1 class(being the youngest in the school year)The school does mixed classes with the infants dept and they are put in small ability groups for the majority of their work so quite often dd is with the older reception children.

So the following information would be extremely helpful....
1.At what age did you feel(if you did)that your child was struggling with written work in comparison to their peers?
2.At what age did your child have an IT/Computer assessment?
3.Does your child have a computer or other IT equipment to aid them?
4.What sort of support worker and for how long during the school day does your child receive?

Many thanks for your help with this as i know how hard and busy all of us are with our children

OP posts:

Original poster

chatee · 11/03/2006 11:59

At the moment my dd is

Coping with numeracy but beginning to struggle to write down all she wants toin her imagination as it is too physically tiring and she knows that she won't complete it in the allocated time.

2.Still waiting for assessment that was requested 12months ago.....(at last years annual review!!) 3.NO 4.A support worker between 9.30-11.45am and between 1.15-2.30pm although school would prefer it to be more of a teaching assistant role in the future

OP posts:

buzylizy · 11/03/2006 12:51

my dd is 10 and has cp But sorry I can't help as her needs seem to be different

desperateSCOUSEwife · 11/03/2006 13:36

chatee noticed your thread, cant help out with any info at all but hope you get it all sorted
xxx
doormat

jenk1 · 11/03/2006 14:10

my daughter has hemiplegia and is only coming up for 2 so dont know im afraid but ill be watching this with interest as its something that we will face in the future no doubt.
Hope you dont mind me asking, what is depliegia?

Original poster

chatee · 11/03/2006 15:16

thanks for looking everyone so far,
jenk1- diplegia is when the lower limbs are affected but as i said in the opening post professionals are now also ?ing the ability in her hands...
we have just spent the last couple of hours playing with salt dough and ds(only just 2)actually made a model with eyes and nose....it took dd all the time just to roll it into a ball and then roll it flat with a rolling pin!!

OP posts:

red37 · 11/03/2006 15:19

Sorry cant be of any help
bump this thread for you
Good luck

Original poster

chatee · 11/03/2006 20:26

polite bump

OP posts:

Cappucino · 13/03/2006 11:00

hi - my daughter is in reception and has cp with spastic quadraplegia - she has one-to-one support but that is also because she also has mobility difficulties and can't stand or walk unaided (she walks with aids).

She also has difficulty with handwriting and though her ot reckons she will be able to master a basic handwriting, at present she is still working on writing her name when the other kids are writing lots of words. Her ot said that she'd probably need a scribe or a laptop as she got up the school to keep up with the volume of work. We met with her teacher the other day and she is going to start working more on a spare laptop computer so that her recording of information keeps up with her spelling and sentence learning. She'll still do handwriting though.

I would push as hard as you can for some help and for some computer use. Her teacher tells us that when children are assessed for a computer, part of the assessment is based around whether they can use them - ie if you can't use one, you can't have one. Also as the volume of work that they have to record gets larger as they get up the school, your daughter needs help with her writing and recording now rather than spending time on this when she should be learning more complex stuff.

If you have only just noticed that your daughter is having motor difficulties I don't know if she will have an ot - can you ask your paed or any other professional if you can meet with one if she doesn't? It shouldn't be a problem because you're already 'in the system'.

You'll have learnt by now as I have that the only way to do things is to be pushy! hth and that I haven't just told you a lot of things that you already know.

xxx pen

buzylizy · 13/03/2006 12:47

although like I said my dd's is different. This is because she can't write. as Cappucino said you need an ot to assess her.
My dd uses a computor and access with switches.
What county are you in.

sparklymieow · 13/03/2006 17:34

My Ds is 7 and has Spastic diplegia CP, his hands are affected too. He had an ICT assessment done in june 2005 and was given an Alphasmart 3000 to do written work on. Someone from Children, schools and families came from SS to do the asessment, they have just done another assessment and he has now got an Alphasmart Neo.

sparklymieow · 13/03/2006 17:34

sorry he is 8 now...

Original poster

chatee · 14/03/2006 09:48

hiya everyone and thanks for your messages,

cappucino- we have all been aware since she started school that possibly her hand function was not up to speed and that intervention would be needed at some point, i feel that point has come in order for her to be able to "practise" with whatever equipment next year so that she doesn't lose a valuable year of junior work that isn't done to her best ability because she can't write quick enough.Next year she will be in year 2.
OT are already involved(but the OT she has had for 2.5 years will pass her case on to a school age OT in the next few months and she wants everything to be in place NOW!!)it's the LEA that are messing around.

Buzylizy - we are in cumbria...

Sparklymieow - thanks for the info,dd had an ICT assessment done in Nov 04 by the person employed by the LEA but the report from the assessment was never produced ?? hence why it was re requested last april(05) at the annual review and here we are a year down the line and it's still not been done.LEA asked an OT to assess but she refused to do it as it was the first time she had seen dd and also it was not her job/specialism to do it.From your posts that i have seen about your ds he seems to me(correct me if i'm wrong please)to be a boy with 'high functioning abilities'and needs the correct eqiupment to allow him to achieve his full potential??-this was a term also used to describe my dd but i feel that she is not getting the correct equipment/and as she is the youngest in the school year that keeps getting thrown back in- but you can't keep using that throughout her school life can you......

please anyone add any further comments/ idaes/ your experiences,
I only have 4 days left until parental report has to be handed in for the annual review....
THANKS EVERYONE FOR YOUR HELP SO FAR.....it's invaluable

OP posts:

sparklymieow · 14/03/2006 23:02

yes Chattee, my son is very smart but needs equiment to help him achieve his full potential, because his handwriting is so poor, but its all up in his head.

twokids · 14/03/2006 23:12

Have you tried asking on the scope forum. They have people(scope) who answer questions like this so will know what you should do.
If you want I can copy your message on there an see what they say.
I was buzylizy but changed my name

Original poster

chatee · 15/03/2006 07:08

twokids- if you could ask the question on scope that would be wonderful, the more responses the easier it will be for me to 'know' what to do for dd.....thanks a lot xx

sparkly- thanks for your message, after everything youhad to do yesterday too....i hope your ds is feeling fine today xx

OP posts:

sparklymieow · 15/03/2006 07:32

Thanks Chattee, he is fine now, and wants to go to school today. :)

twokids · 15/03/2006 09:16

I have put it on scope forum. It has to go to a moderator first. As soon as I get a reply I will let you know(lots of copying and pasting)
I have changed my name now from busylizy

Kelly1978 · 15/03/2006 09:36

I don't know how helpful this will be as I don't have personal experience but I did some we in a school in middlesborough which was special needs and mainstream mixed. It was a great school, about half the kids were sn, and about half mainstream. I think the school must have specialised in cp, as lots of the sn children had cp, and some travelled a long way to go to this particular school. They were provided with various therapies at the school, I know they had physio, and there was a sensory room, a pool for physio.
There were also specialist computers available, but these tended to be used by those with spastic quadroplegia. The children with diplegia seemed to be encouraged to use crayons. Even at young ages ( I was working with mainly 4-8 year olds) many of them did find it harder than those who were nt, but I think the view was that they could overcome this and the computer help was only provided for those who were unnable to at all. Even those with spastic quadroplegia were encouraged to use crayons at time, though I can remeber them finding it very frustrating! I think computer help must be quite hard to get, considering how well equipped this school was but only a few children using computers, but it is worth fighting for as it helps so much.

twokids · 15/03/2006 13:08

FIRST REPLY
My son is only 3.5 but goes to mainstream nursery school with full support. He is in a wheelchair and affected on all 4 limbs, so handwriting is going to be a struggle and he would need ICT. The speech and language therapists and the SENCO have referred him to Becta and Cenmac, who are supposedly coming in to assess him, but they have a huge waiting list. He is also due to been seen by the Wolfson Centre. If writing is going to be a problem for your friends son, I suggests she starts talking to the relevant people now. I don't see why it should be a fight with the LEA. I don't think that they set out to not meet children's needs, if they can. Sometimes they just need to be alerted. They are often bad organisers, so it's up to the parent to make sure that things are being done. Shouldn't be this way, but it seem like the only way of actually getting the help your child is entitled to

twokids · 15/03/2006 13:09

IF YOU GO ONTO THE SCOPE FORUM(CAN READ WITH OUT JOINING ) I HAVE POSTED IT EARLY YEARS, SORRY PUT SON INSTEAD OF DAUGHTER!

Original poster

chatee · 19/03/2006 08:09

thanks for that twokids- will check it again later...
just looking through the s/n threads for info about statements as i have to produce my parental form to school tomorrow so am looking for any "key words" that are going to help dd....

if anyone can link to any threads that they know might help please ??

OP posts:

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