Getting around with 3yo+ with mild CP

[GeeandTee]

DS is 2.8 and has mild CP. He can walk (wobbly) but only for short distances so we use the pushchair and a Hippy Chick hip carrier a lot. What do you do when they are older? How long will he be able to use a pushchair for, is he likely to need a wheelchair at some point? Also, are there any back-carrying slings that an older child can use? He's just 27lbs so not very heavy (my 8mo is already 2lbs!). Would love to hear what other people do.

Hi geeandtee
My ds2 has mild CP. We used a pushchair until he was about 4 and then used a maclaren major Sn pushchair.
He is almost 10 now and he does use a wheelchair for distance but fortunately his walking has improved over the years.
I think he was about 6 when he first got a wheelchair.
I did find it a hard step to take.

Can I suggest you go for a wheelchair sooner, rather than later? DD is 3.3 and a wobbly walker - mild Spastic Diplegia. We were referred to wheelchair services in January for a SN buggy as the pushchair was beginning to look a bit snug (interesting, as she is tiny really). We looked at the Mac Major, but didn't like it at all, and the other buggy we were shown was the Swifty. It was ok, but I wasn't a great fan. Then I asked about a wheelchair and the WCS person nearly fell over in surprise - she said parents usually don't want to consider a wheelchair so young.

But, do you know what? DD loves it. She very quickly decided she didn't want to use her pushchair any more, and we now use the wheelchair whenever we go out. The reason we went for the wheelchair is because I think other parents and children are far more accepting and find a wheelchair far easier to understand than an older child in a pushchair. DD's language skills are very good, so she'd understand all the 'Why's that big girl in a baby's pushchair?' type questions. A wheelchair is far easier to understand and for parents to explain - she is in the wheelchair because her legs don't work properly. She is also starting to self-propel. so has a small measure of independence.

Also, out and about, where most people would ignore DD in the pushchair, when they see her in the wheelchair they smile, chat and are so helpful - opening doors, carrying things, etc. Also, when they see DD wobbly walking and me pushing the wheelchair, they smile and say 'Isn't she doing well!' rather than 'Oh, a new walker?' (Not being funny, but we also get the disabled rate for days out which often come with a free carer ticket - not that this was our motivation, but is a nice side effect!)

Oh, and her wheelchair is very funky too - will try to upload a photo...

There we go... The wheelchair came bright pink with plain spoke guards, and we bought some vinyl stickers to decorate it with.

If you do decide to go the wheelchair route, there are a few things to make sure you discuss - If he still sleeps in the day, you can get reclining back (DD's does, but we never use it as she dropped her nap after we ordered it). Make sure you get the push-handle extension as otherwise the handles are really low to push. With the reclining back it doesn't fold, so make sure you've got room in the car for it (We've just got a motability Ford Galaxy so that we can fit her wheelchair and SN trike in.)

Hope that was all helpful!

Thank you that is really helpful. Have to admit that I find the idea of a wheelchair very difficult psychologically at the moment but do need to start thinking about it. Is motability something included in the mobility DLA award when they are 3 or something separate? I have never had anyone explain what options are open to us and only started claiming DLA a few weeks ago as I had no idea we were entitled.

A few months before he is 3 you can apply for the higher rate of mobility for him - make sure you tell them about one of his bad days. If you get it, it's about £50 a week. However, you can opt not to be paid that money and instead give the money to Motability in exchange for a brand new car with all servicing, tyres, breakdown cover and insurance for 3 years. You may need to pay a downpayment of up to £2000 too, depending on the type of car you go for. At the end of 3 years, you either exchange the car for a new one (again, with downpayment if necessary), pay the going market rate for the car you are driving already in which case you then own it, or give it back and claim your £50 a week again.

Bear in mind that if he qualifies for higher rate mobility DLA you can also probably get a blue badge too. I've found it's great at saving parking fees at the hospital for appointments and physio!

I hope I've explained that clearly?! If you want to ask anything else, feel free!

geenadtee
I completly understand how you may feel about the wheelchair, the first time i pushed ds2 around our village in his whhelchair felt very strange. But after that first time it was fine. DH took a lot longer to get his head around it.

A wheelchair definatly brings out the best in people, people are kind & considerate, a teenage busker stopped playing at Liverpool Street station to help me down the steps recently.

I had a tough time with a wheelchair, but tbh, it has been the best thing for DD. She self propelled for some time, and actually drove me bonkers (she runs off, just like any other child might do) but she became quite weak, and now has a power chair. She is doing beautifully with it. We still have a Maclaren Major Elite for quick trips to the shops when we don't want to load one of her chairs, but I see the difference in the way she is treated when she is independent in her chair vs. when she is in her pushchair.

I am not too proud to admit, people look at me differently, too. I know why she has her mobility devices, but to the outside observer, she is a big kid in an oversized baby pushchair, or a cool kid in a funky wheelchair. I have a bit of fun decorating her spoke covers on her manual pushchair, too - I paint them, they have been undersea themed, we did them for Remembrance Day and Christmas, currently they are purple with dancing stick figures... and next, she wants Angry Birds

Like any child, with mobility you want to support where they are cognitively - if you think they are ready for a bit of independence, it might not hurt to start to look into it... and there are actually some fantastic manual chairs for the younger set available in the UK that I would love to have access to here.

That's really interesting, thank you for that. Sounds like it could be worth looking into soon. I don't think he has the strength or coordination to self-propel at the moment but it might not be long.

Oooh, and also look at www.wizzybug.org.uk They have some charity funded ones and we picked DD's up today. £200 returnable deposit for 12-18 months' use. It's fab!