AIBU re: school and mobility? Bit long, sorry.

[r3dh3d]

DD1 has I guess a low to medium degree of physical disability (mild hemiplegia plus not perceiving/understanding her surroundings) and a high degree of learning disability (functioning at around 8 months on average). So she's entirely mobile in familiar surroundings though she potters around slowly and falls over a lot so needs 1:1. But she can go a reasonable distance if you look after her.

If we're going out for a walk or to the shops or hospital or whatever she has a SN buggy. School know this as it happens to be the same model as a classmate who is much less mobile and DD1 tends to get confused and try to get in it!

Anyhoo, she's now heavy enough that school are not allowed to lift her and their manual handling expert has been pushing to get DD1 onto a bus rather than her taxi. Bad news for a number of reasons but the Head in a separate conversation advised me against getting the buggy we bought in the end because "it was not crash tested as a wheelchair". The vibe I am getting is that it would be most convenient for school if DD1 was to be a wheelchair rider at least part time. They could just wheel her off the bus and into school, whereas at the moment she needs a lot of support to get in and out of the taxi without lifting. It's perfectly doable, it just takes an extra five minutes.

Yesterday I got a message back in the home/school book that they wanted me to send DD1's buggy in so they could take her to the children's centre (next door). Now, so far, I had thought they walked to the children's centre. So presumably because DD1 is taking longer than the other kids, it would be easier for them to wheel her there.

Now, if DD1 needed to be in a wheelchair, I would be fine with that. But she doesn't. And once she was in a wheelchair there is no way she'd ever understand how to power herself, so her independence would be gone. Plus of course she gets little exercise and has low muscle tone and imo every single step she walks is good for her. So I'd strongly resist this move, particularly as once the buggy is in school I have no control over how often it is used and what for. As she gets older and weight bearing becomes more difficult, I know it will be a fight to keep her fit and on her feet but I want to resist for as long as I can by using splints etc. DD1 is quite passive if she's stuck in one place and I'm sure that once she is in a chair she will withdraw from engaging with her environment and I fear regress further. Plus of course once those muscles are unused we go down the route of downstairs bedrooms and bathrooms and ramps and all that stuff. So far she's getting herself up and down stairs several times a day - it's a lot of work and encouragement from us as she finds them intellectually challenging (!) but I'm happy to make that effort because I think it's worth while. I don't know if I can keep her active enough at home to make up for sitting down all day at school.

So - I feel that in DD1's case this is the thin end of a really big and unnecessary wedge. All the school can see is that it would be more convenient for them to put her in a wheelchair now and again.

AIBU? I'm really just running on a hunch her that this is a Bad Thing (partly informed by DH's Grandfather's experience as a lifelong wheelchair user) - anyone any experience/advice?

[TotalChaos]

Well I don't have enough knowledge or experience in this area to give you any sensible advice, but what you say sound perfectly reason in terms of your concerns that they want DD in a buggy for their convenience. Wonder if it might be an idea to talk this through with some sort of professional involved with DD (OT? physio?) and then get them onside (presuming they agree with your rather than school!) to stress to school the importance of her remaining mobile.

[cory]

It is impossible to know without knowing your dd, the school etc.

We had the opposite problem: the school/doctors were very opposed to dd using a wheelchair at all, because they thought she would become dependant on it, start losing muscle tone etc etc. I knew that this wouldn't happen, that she would want to move as much as she could, but having the chair there as back-up would mean she could feel more included and join the other children on walks, trips etc.

We now have a situation where the wheelchair travels in with her every day and sits ornamentally in the office. She knows the back-up is there should she ever need it, they know not to push it at her when she doesn't need it. But it's only because she is old enough and has enough understanding and is a naturally active person anyway that this situation can work. You know your daughter. Go with what is best for her.

[donkeyderby]

Definitely a conversation to have with her physio. If they can produce evidence that being put in a wheelchair is counterproductive, then they could pressure the school and include walks to places like the children's centre in her therapy programme. If she's got a 1:1 there shouldn't be a problem if she lags behind, should there?

I'm having similar issues with DS1's respite home. They don't want him to do stairs because of potential falls, (he goes up and down stairs at home on his own). I think it is a staffing issue more than anything because he's meant to be on a 1:1 but when staff are cooking etc., he isn't given 1:1. The physio has told them he must do stairs, so they have reluctantly agreed to let him go up but not down!

[r3dh3d]

Thanks all.

Don't really know the physio - I think actually she's a temp doing maternity cover. But next door but one has a good private physio - I'll try to talk to her next time she's round.

[LGoodLife]

There are crash-tested buggies with clamping points - we have Lightning from Stealth Pruducts in USA via NHS for our 6.5 dd, as well as electric wh/ch. Sounds like sch need to keep yr dd active during the day.

[anonandlikeit]

Hi R3
DS2 is mobile but has mild CP, i know those frustrations of trying to keep them moving... YANBU.
ds2 is lazy passive so would choose to be pushed everywhere. He also has ASD & sensory problems & I ahve had to explain to family members why it is important to ignore his tears & make him walk on short trips.
As long as her 1 to 1 is purely for your dd & not being counted in the escort ratio for the other children there should not be an issue?

[r3dh3d]

Not really, no.

We have a physio/OT shortage locally and so the official line is that unless a child has a specific problem, then they are discharged, regardless of their diagnosis/condition. So she's not seen by physio because she doesn't need manipulation or whatever. She is a bit hypermobile and not very strong and of course can't intentionally use one side very well - but nothing that physio will agree is something they could treat.

There is an NHS physio attached to the school and she writes a report to go in the annual review (which says sod all) and then gives input to the IEP. Plus she has (under duress) arranged a dynamic split for one arm. So DD1 is "known" to the school physio. But doesn't see her.

Of course all the NHS therapists are at the age/career stage to have babies and permanently on mat leave or covering each other. So current physio is a temp; we've seen 2 or 3 before that, 2 SALTs and numerous OT folk. It's always someone new and they never have the history.

So far the best - in fact the only meaningful - physio input we have had has been from the physio at the hospice who we don't often get an excuse to see but if we bump into her is very helpful and informative; all my ideas of how to keep DD1 active and mobile day to day come from her.