Cerebal Palsy - What can I do at home with ds2 to help him while we wait for the system to kick in?

[yomellamoHelly]

Title says it all really.

We got a diagnosis at the start of last week and the consultant said how important it was to get him into physio therapy etc etc as soon as possible given that he's 20 months.

We're still waiting for the childrens' centre to receive the referral letter (was sent out yesterday after I chased it) and then they only review new cases each Tuesday. Then we have to wait for them to book him in etc. etc.

All a bit annoying.

I've been trying to get him to sit for 2 1/2 months now so sit him up at every opportunity and also bought a bumbo to help this process at mealtimes, but am not sure what to do beyond that.

www.scope.org.uk

for parents/children/adults living with CP.

I know what you mean about his peers, Josh is 2yrs next week, but he still feels like a baby but looks like a 3yr old because he is so long! but it's only when you see other children the same age, that it hits you how far behind he is, and of course the older they get the more pronounced it becomes, but at least it's a gradual thing which makes it easier to come to terms with.

Have a look at the website above, they have a forum and as it's all CP related so you can usually find the answers to your questions - although all our children are diffrent even without the disabilities

Hi,

Whereabouts are you? We are in London, and we started off seeing a children's physio in south London. Let me know if you'd like her details. She also has at least one OT working for her.

We also went to BIBIC, they are in Somerset and really helped DS2 to become interested in his surroundings.

There is also a practice called London Children's Practice, they are in central London, and they have physios, OTs and SALTs, we have only seen their OTs and SALTs though.

All the best

mm22bys - We're in Kingston so a recommendation for South London could work. Would you mind posting their details?

Website for London Children's Practice also looks interesting. But my gut feeling would be to try this physio you recommend and take it from there.

Still waiting for NHS. Apparently they review all new cases on Tuesdays. Then we find out where we are on the waiting lists!

Hi,

Here's her site.

Good luck,

It's also worth checking out www.specialkidsintheuk.org

It's also worth checking out www.specialkidsintheuk.org

Just realised that I didn't get back to this thread, sorry. The book is Handling the Young Child with Cerebral Palsy at Home by Nancie R Finnie. We found it very useful in explaining what was going on with Ds1 and it gives lots of practical ways to help.
We are very near you if you are in Kingston we are in Surrey but the Kingston side, and I would be happy to meet if you would like to. CAT me or email me on [email protected]
One other place you may be interested in is Small steps School for Parents it is conductive education and we attend one session a week. They are on holiday at the moment but emails and phone messages are picked up periodically. They have a couple of staffing issues at the moment so I'm not sure if there is a waiting list, but they are brilliant, and a charity so you don't need to pay anything, although we do fundraise for them.
Hope some of this helps