Cerebral Palsy - Computer equipment for home/school

[charleypops]

Hi,

My son is 8 and has severe cerebral palsy which affects his entire body. He uses a power wheelchair. He has virtually no learning disabilities (just a cp-typical spike in processing matrices). He has limited use of one hand and is reliant on his TA to scribe for him. He is great on his adapted xbox, can type the alphabet on a normal keyboard in less than 3 minutes etc. He is very passive when it comes to typing and whilst he can, he won't. This is because it's laborious for him. I understand this, but I am desperate for him to type at least google search terms or short emails for himself. I need to see what schoolwork he is doing so I can support him, and he needs to be able to file and access his own work as a nondisabled child would be able to access his or her text books.

My question is, is it reasonable to expect school to provide him with his own laptop that they take care of - ie make sure it's got software that he can use and keep it up and running efficiently? Do your similarly disabled children have their own laptop? Currently he shares one of 3 laptops that are available to the entire year and they're very old. I very much think it's crucial that he has one loaded with appropriate software. One of the many reasons this is for instance, while his reading is excellent and 2 years+ in advance of his age, his spelling not that great. I think this is because he doesn't get much opportunity to type words out - just dictates.

I have of course spoken many many times to the school about this but just keep getting fobbed off. I'm so frustrated

Thanks

Sorry, should have added there that he's at his local mainstream school

what is a CP spike in processing matrices?
The school provided a communication device for my dd (she has no hand function) so she uses that as a laptop. I'm sures yours should do the same if it's his only method of communication/writing. Get it written into his statement. If he cant write then thats what he needs.

Hi think it is a perfectly reasonable adjustment as required under the EQA and is more than reasonable for you to expect the school to make appropriate provision so that your child can access the curriculum. I took a school to tribunal for exactly this and discrimination was found by the tribunal. If you would like further information please pm me, I would be happy to share my experiences.

Hi, DM - my son can speak, it's a bit slow and disjointed, esp when tired, but has full vocal so doesn't need AAC. 2TN2F - thanks, I will get in touch if I need to.

Crazily, I can't find my son's statement right now - but the wording is something like "appropriate provision of ICT stuff". Open to interpretation, of course, and the school argues that they are making appropriate provision. Scribing, according to them, is appropriate provision. I've asked her so many times about this, begged her;

As "a favour" (her words) the SenCo's offered to let me have one of the school's 30 Clicker 5 licenses for the laptop I bought him 5 years ago (huge and full of bugs) - and has said she'd see if the IT guy at the school would be kind enough to look at his laptop "if he's willing and not too busy". I'm supposed to be grateful for this - OR AM I??

This is the laptop he uses now and again for gaming - he's downloaded hundreds of games over the years, it's got a dodgy DVD drive - it's got no word processing software and like I say, is jammed full of bugs. Knowhow at PC World can't help with software so it's in there now hopefully getting DVD drive, fixed, but getting completely wiped (my son's going to go mad if I can't reload his games from the removable drive..). But I don't want him using this old laptop, he should have one specifically for schoolwork and researching schoolwork.

Matrices processing - something to do with difficulty in predicting sequences (like in domino pattern tests) that popped up when he did an ed psych assessment (which I had to insist on him having). Typical of CP he said...

Found statement, here's the relevant para;

"To ensure provision is made for {DS} to have access to alternative equipment, ICT and other augmentative systems and devices so that he can demonstrate his true understanding and ability with academic studies."

If that's in hiis statement yiu should be fine. Get a referral to the SNIT department of your local authority. DS, with CP, had an entire mornings assessment with a variety of hardware and software, he's ended up with a laptop and adapted keyboard, normal mouse and a couple of specific pieces of software.

The computer is maintained by the SNIT dept and can come home if he has work to do on it. He started using it at the beginning of this term and it's been v successful. He's Y4 now. His doesn't connect to the Internet but it will be replaced by one that can when he hits secondary school. It's fully insured against accidental breakage whether at school or at home (as long as it's not I'd for playing games watching tv etc at home).

I had to push school for the initial SNIT referral as it's a long form to fill in and needs evidence attached to it but once it had gone off the response was quick.

Ps - in your case I's also find out the contact details of the SNIT people from your LA and talk to them about how you get your DS on their books, the you can present school with a fait accompli. Or they may start the ball rolling from their end!

Oh that's weird. I wrote a reply hours ago and it's not here - I must have made a mistake! How annoying!

My son has had 2 assessments - named SCAMP assessments here - the first one over a year ago with his OT, physio, a Tobii Eye gaze rep and a general special needs teacher from a local generic SN school (part of an "outreach" project). Eye gaze didn't work as my son's head moved around too much. SN teacher had limited knowledge and only brought basic stuff - a couple of big mack switches for a scanning program which he totally failed to engage with as it was boring for him, and a child's keyboard. She doesn't normally work with children without cognitive disabilities which didn't help.

DS can use a keyboard but it is laborious for him. But it was still much faster for him than anything else on offer there as he's used to it. The second assessment I wasn't even invited to, didn't know it was taking place and when I heard about it had to request a copy of the report! The conclusion of that was that they thought he needed a predictive text programme. I would have probably have concurred with this, who knows. This happened months ago and whenever I broach the subject, I get fobbed off with mutterings of how expensive the programme is. If they do get this programme, who's going to put it onto what - he's going to have to use it a lot to get used to it. Surely it's got to go on a provided and maintained laptop or an iPad with a keypad even?

I'm really sad that the school hasn't been totally on this and tremendously disappointed with my experience of MS. I feel like I'm losing him - all he wants to do is sit in front of his xBox. It's so hard for him to do anything else. He's got no friends, of course, and can't even get into the cafe in his local park ffs. He's so demotivated. So am I. He started off with so much potential - his reading was/still is incredible for his age - he was a fluent reader by 3yo - way in advance at that age of where my NT 5 year old is now. It's like everyone's battering me into seeing him and me through their eyes - just another troublesome and expensive disabled child and a frustrated, beaten, pain in the backside single mother.

It's just good and helpful to know other families are getting decent equipment for their children. I feel like I might not be asking/expecting too much.

Charleypops long may you seek to secure what your child needs and if anyone perceives you as you feel they do.........shame on them! They clearly know jack.