Does this buggy exist? (sorry long)

[elliejjtiny]

Bit of background: I have DS1 (5), DS2 (nearly 4) and DS3 (15m). All of them have Elhers Danlos syndrome type 3 to some degree. DS2 has it very severely and can't walk far at all. DS3 has it more severely than I'd like to admit and doesn't weight bear or sit very well so can't use a buggy board, even one with a seat. DS1 is ok, just a bit bendier than normal.

We've been trying to sort out a buggy/sn buggy/wheelchair for DS2 for when he starts school. We are using a normal double buggy at the moment which is on it's last legs but I hope it will last a few more months. DS2 doesn't like it because other children call him a baby when he is in it. He wants a trendy wheelchair with clicky things on the spokes like his friend who has CP has got.

The HV wants us to have a SN buggy and a normal buggy that join together when I need to push DS2 and DS3 around but can be separated when I get to school so I can leave the SN buggy at school with DS2 and take the normal buggy home with DS3. I don't think a buggy like that exists although I'd be happy to be proved wrong. I know you can get a buggy pod to attatched to a SN buggy but it only has a wheel on the outside so you can't push it with a child in on it's own.

We used to have a SN buggy before DS3 was born but it was always going wrong at it would take a week to get repaired each time. We walk a lot (1.5 miles each way to school and further to preschool, toddler groups, appointments, shops etc) and I don't think the buggy could cope with the amount of walking we do. I have my eye on a manual wheelchair that I have test driven round the shop with DS2 in it and it feels so light to push (no idea if it could cope with the school run though). You can get clips to clip a walking frame/stick crutches to it and I thought I could clip our tiny lightweight stroller to it. I would carry DS3 in the baby carrier and push DS2 in the wheelchair to school and then put DS3 in the buggy and push him home. It will be hard but the best option I think. DS2 isn't entitled to school transport, free or paid for. There is a bus but they have put more double deckers on our route and put up the prices and I just can't manage it anymore. We got the bus when DS1 was in reception but the school weren't happy about DS1 being late all the time and I was getting fed up of waiting for over an hour with tired whinging children for a bus when we could walk for free in 45 mins.

So does this buggy that the HV is suggesting actually exist? And is there any other way of doing this that I haven't thought of?

I have never seen such a thing, so I don't know if it does exist or not.
If it doesn't exist, then try contacting this group:
www.remap.org.uk/
They specialise in trying to find equipment solutions for disabled people when there is no standard item that will do the job. They use teams of volunteers (mainly engineers) who love the challenge of finding a solution. Don't know if there is a group based locally to you - their website should tell you.
I haven't used them personally, but did speak to our local group once about an issue we had with something we needed for DD's wheelchair - they were keen to help, but in the end we found a solution elsewhere, so didn't use them.

do you think she meant something like this although not sure how well they would work with 2 different sized and shaped chairs especially if the frame shape is different, plus very wide if you have to get through doors. There is a buggypod that you can use independently of another pushchair, not overly cheap but probably cheaper than a custom make.

as well as remap, there's also meru and cerebra that will custom make that may be worth looking at.

what have wheelchair services said, have they given you any options? Another option would be to see if you could pick up a second hand chair relatively cheaply that could be left at school.

This sort of thing? www.travelwheelchair.net/safety-tandem-connection-p-7-l-en.html

I don't know if you can get it in the UK

To be blunt - you do not want an sn buggy for school use. You want a wheelchair. Buggies are fine for out and about, long family days etc, but for a school age child, if they require that sort of support, you need to be provided with a wheelchair. It's a far more age appropriate solution, and will mean that the child is theoretically able to manoeuvre a little himself without being infantilised by his peers and having to wait for a TA or carer to move him. Particularly if there is already a child in the same environment with a wheelchair. To put him a buggy in that scenario would scream 'baby' to your average yr r kid.

If it's just for one off school trips, not so much bother, but if it is for pretty much every day use at school, you need a wc. No doubt at all.

Why is your HV attempting to sort out what you need? You need a wheelchair services appointment. Get the referral in and they can talk through options with you. Yes, do your research, but I'm not convinced the HV knows what's required, really.

Fwiw, for home use, we used a chariot carriers stroller/ bike trailer until dd2 was 7, (we had a double as well). But she also had wcs supplied funky purple wheelchair with smiley face wheels for when needed at school etc. We also have a MacLaren major for as and when trips out and about.

I know the two/ three kid thing is tricky, but I think you would be better off getting a double buggy for to and fro, and a wheelchair which can remain at school if necessary. In our situation, some of the 'doubling up' for school purposes was funded by the LA, not the PCT, so this might be an avenue you could explore if it was for school use only.

(we also experimented with using an sn trike for the school run, btw. It was actually ok, and maybe something else to consider? Dd2 is low toned and hyper mobile but not due to eds)

Thankyou so much for all your suggestions. madwomanintheattic I totally agree with you that a buggy isn't appropriate for DS2, especially when he starts school. We are already having problems with other children saying he is a baby and he seems to have a very long memory and also bears a grudge. There are 2 other children and a couple of parents who use wheelchairs at school and he would much prefer to be like them rather than be in a buggy like a baby.

DS2 is on the waiting list for an appointment with wheelchair services but we haven't heard anything yet. We are also waiting for an appointment with someone who will assess DS2's physical needs at school and the health visitor said she will help with sorting out a wheelchair. The health visitor is doing stuff mainly because she is interfering but she is good at chasing appointments etc and she can do those phone calls where they put you on hold for ages and connect you to 3 different departments much easier than I can. I usually let her get on with this stuff otherwise she wants to weigh the dc's every 5 mins, although I'm not sure why she thinks that is helpful.