Next step after wheelchair buggy?

[ThaliaFailure]

DS2.5 has a Snappi wheelchair buggy from wheelchair services and has just started using a Crocodile walker, though only inside for now.

I am really struggling. I used to just use the Snappi for school/nursery run on foot and it was fine, albeit heavy. Now, though, I have to drive the walking frame back and forth and can't fit it and the Snappi in my car. Both are massive and heavy! I have a compact standard buggy for when I can't take the Snappi but it has zero support and DS looks awful in it.

He will likely take another few years before he can walk (fingers crossed that he will get there) so this is an ongoing problem. I have asked wheelchair services and OT for a review as I feel the equipment just isn't working now.

Has anyone experienced moving on from a Snappi wheelchair buggy? If so, what was the next equipment and how old was your DC?

Or can anyone tell me about a supportive disability buggy/chair that folds up to be compact? I'm happy to fund one ourselves but I don't know where to start. DS only needs pelvic support when sitting (laterals and chest harness are no longer needed) and he has a strong core.

I'd be really grateful if anyone has any ideas or experience.

Are you bringing the walking frame for use at nursery? Is that why you have both in the car? If so can it stay there/can OT supply one for there? I never moved equipment from school/nursery to home, with the exception of the wheelchair itself, I insisted that stuff for use at nursery be kept there.

I don’t have specific recommendations re buggy but definitely continue to that with OT/WS until you find the right solution for you - no way should you have to self fund anything other than accessories or ‘nice-to-have’ extras.

Thank you for your reply. Yes, physio have only supplied one walking frame and were very cagey when asked about a second. I'm at a bit of a loss as physio have been much harder to deal with than OT: there was no question of OT not duplicating his specialist seating for nursery, they just did it!

Plus I'm aware that when he's walking with the Crocodile more, we will still need a buggy or wheelchair with us for days out (he tires very easily due to a heart condition).

Thank you for the encouragement. I've not had to question any of the equipment choices so far as they have been fine until now, so it's good to know I can have some input too.

Definitely you can say things like ‘yes that would fit DCs needs but it won’t work for us as a family’ or whatever. Absolutely to do that and insist that the whole situation be considered properly. You can also ask nursery to push such as if you stop taking the walking frame in, tell them why, tell them you still think he should be using it at nursery and ask them to contact OT (as well as you doing so). You got this, time you centre yourself and your own needs as well - you’ll damage your back doing all that lugging around in and out of the car boot.

Oh, that last part made me a bit weepy. Everything is all for him and it feels scary to speak up for myself in the mix. I need to get better at it.

Luckily, nursery are already drafting a letter to physio to say I need a second frame. They were pretty aghast it hadn't just been ordered at the same time as the first. And OT are very responsive so it may be they can come up with some advice.

It doesn't help that we suddenly have a lot of equipment for all aspects of daily life and it is very obvious DS is different to his peers now. I still find that hard and it has been brought home to me this week with all this. I hope it will ease with time.

Could you investigate motability for a more suitable vehicle? Is that an option. Many of the older kids I come across through work have Bug pushchairs. But not sure if they fold.

Thanks for your reply. I was actually wondering about motability today. I am currently reapplying for DLA to add the mobility component when he turns three, so I will ask for the info. I really don't fancy a massive vehicle but I will get on with it and just practise lots if I have to!

That Bug chair looks lovely and folds a little smaller than the Snappi, and with the seat still attached which would be a huge bonus - the Snappi seat is so heavy to lift and clip in place. The Bug I saw also just had extra support around the hips, which is all DS needs. I will definitely ask wheelchair services to look into something smaller. Thanks for the suggestion - it appears some daintier but still supportive chairs are indeed out there!

I knew a 17 year old still in a bug. So it would last a long time!