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Wheelchairs and rules

(16 Posts)
alfiemama Sat 08-Dec-12 20:20:19

Thanks everyone. It is good to hear others experiences.
I am seeing the paed on Tuesday so will ask her. I have spoken to the school and they are happy and think it is a good idea to have Alfie in a wheelchair. Going to try and borrow one from the hospital and then asked to be referred.

Thanks for all your help. You've all been stars (as usual) mwah mwah

ChristmasTreegles Sat 08-Dec-12 10:27:34

Hi. A little late to the discussion, but DS2's OT was perfectly happy to organise (through WC Services) a Mac Major when DS was younger and this year a wheelchair for DS2. He doesn't need it all the time - in fact on regular school days, he doesn't generally need it at all.

He has ASD, ADHD, hypermobility, sensory difficulties, dyspraxia, as well as asthma that kicks in if he gets too physical. On short walks in quiet places he is fine. On medium to long walks, especially in busy, loud, or crowded places, he cannot cope and gets tired. We generally use it in the supermarket or when we are going to the high street or a busy shopping centre (especially this time of year!!)

The school knows he has it, and it actually lives in the boot of our car, as he doesn't need it at home. So if something pops up at school where they might need it, I can leave it for the day to use.

It's a bit funny, actually. DS2 is also a runner... just can't run that FAR mind you... far enough to get into danger/trouble or hide where either it's dangerous or you can't find him. hmm OT thought it was an interesting combination - a runner with a wheelchair. I noted, though, that he STILL tries to get away when in the wheelchair - by self-propelling! Guess that means he's a runner and a roller. grin Goofy kid.

Anyway, back to the discussion at hand - WC services didn't have any issues with providing him with a wheelchair even though he doesn't need it fulltime. So if you need it, don't be afraid to request it through the OT, as a decent wheelchair can be expensive IMO (depending on your budget obviously).

cory Fri 07-Dec-12 22:29:05

We went out and bought a wheelchair for dd (also hypermobile) under similar circumstances. The consultant was totally against it "because it will make her think of herself as disabled". I never had the nerve to come back with "oh, so you think when she's crawling along the pavement on her hands and knees, she might just not notice". In my view (and this also I never found the nerve to tell the consultant), the child who is really disabled is not the one who goes on the outing in a wheelchair but the one who has to stay at home and pretend he doesn't care.

Teachers were fine pushing it, though I did have to offer to go on a trip to the zoo as they hadn't organised enough helpers. In school, dd's friends often pushed her around, so there didn't seem to be any insurance problems there.

We didn't find that she stopped walking because she had the chair; it was more like a kind of insurance, so we didn't have to say "oh no, she can't go on such and such a trip". And now it makes a very useful clothes horse.

madwomanintheattic Fri 07-Dec-12 20:22:45

Gradual exposure stuff, and lots of talking. Tons of stuff about connecting mind and body and listening to your body, and coping strategies for anxiety - how to use your mind to control physical response etc.

Ds isn't a milk fan. Given the option he will refuse (we get the gagging routine, too) but every few days he will drink it without thinking too much - the less pressure around what he does and doesn't drink/ eat is definitely better (but really hard for me!!)

The psych essentially requested that we remove all 'necessity' from eating or drinking completely. So if he chose to eat or drink, fine, but if not, no worries. I still flap and find myself trying to coerce him, but I do know it's counter-productive... He's had longstanding issues with continence, too, but I have to say it's improved hugely since he's been with the psych, (phobia related) so it's all a bit chicken and egg...

Oddly, he would sensory seek from food as a pre-schooler. Not in his mouth, but he would touch it to his face, and trace round his lips with it. How that got translated to not eating over time, I dunno.

Camhs newbie sounds v promising!

Have a relaxing weekend x

alfiemama Fri 07-Dec-12 19:50:41

Thanks Mad smile it helps talking to someone who has similar issues.

No, tried the ensures/complan (milky drinks) he has a phobia to milk and will literally make himself gag on them. It took us hours to get a thimble full down and distressed him too much.

On the plus side, school have said its a good idea about the wheelchair and are happy to push him it - Alfie on the other end is not best pleased.

What did they do Mad? The physc that is. Playbased therapy? Did they test for sensory? I know some areas don't do this we are lucky the Camhs have just employed somone new in this field (I was given a heads up by education board)

It's a fun world we live in eh? grin

madwomanintheattic Fri 07-Dec-12 19:00:30

Oh, bless you.

Ds's list of acceptable foods gets smaller, but he still has staples, so in tricky weeks I give in. His is definitely sensory-based, and the refusal can be triggered by anything. Once a food or meal is 'off' the list, it's impossible to reintroduce.

Have you tried a pediasure type thing? (Not sure what is available in the UK...) has he seen a dietician? (We sacked our NHS dietician after one visit, lol, so I'm by no means suggesting they are a cure all, but some families do find them useful).

Ds's psych was very good. He sees her once a month now, but was every week at one point. He is definitely 'less' phobic, although by no means miraculously cured!!

Remember the rollercoaster - this is just an almighty low before the long slow climb xxx

alfiemama Fri 07-Dec-12 15:29:27

Thanks Mad. If just seems extreme. I hadn't ever even thought about a wc until
this cropped up.
I tried buggy Boards in the past for trips but son is too old for them now. Funny thing is he probably would mind going in a buggy it's just meconfused
Obviously he would hate it at school and would never live it down.

Jeesh we get on top of one problem and another bites you on backside. Thanks school. hmm

I've found him some vit d he will take thank god. There £9 a bottle ( he doesn't have cheap tastegrin). His weight is so bad I asked the paed about hospitalisation but she said they won't do as they can't force him. He has stopped eating his safe food he has reflux and she thinks too much acid in his tummy so upped his ranitidine and gaviscon. Wants a blood test to check for bacteria. Doesn't want to do a camera down as he wouldn't cope with it I have told hubby if he carries on not eating I'm waltzing into A and E with him.
We are now under Camhs to try and help with the phobia and they want to test for sensory. They said though they can help but depends how deep rooted it is. I feel like I'm watching my son waste away.

Sorry I'm offloading now. Been a bad week of appointments.

madwomanintheattic Fri 07-Dec-12 14:46:57

Definitely ask paed for WCS referral on Tuesday, then. smile if you are already in conversations regarding mobility, then it's really the next sensible step - and just for occasional use with school trips, lengthy shopping days out, theme parks etc. it's quite normal, so that kids with these sorts of issues aren't in pain/ too exhausted to do anything by the time they get to the park etc.

If he's still little-ish, you may be offered a Mac major. I'm not keen to use a major for school trips, just because of the buggy connotations, so I like school age kids to have wheelchairs, but I did buy dd2 a Mac major for out of school use, because they are much easier to use in shopping centres etc and in and out of the car, and all that stuff, than <some> wheelchairs.

Definitely start the discussion anyway.

Poor wee lamb sounds like he has a lot going on, so if you can make it a bit easier for him, all good.

Ds1 has issues with food, too. Will he take some supplements or not? Mine do like vit d, so I have no issues there (we are supposed to all take vit d here, just because of the lack of sunlight to skin for 7 mos of the year, lol). I do notice a huge difference in ds1's demeanour if we manage to get him to take omegas, zinc and magnesium, and vit d regularly. Need to get cals in somehow though!!

<I'm not going mad btw - despite username! Dd2 is the one with the wc, ds1 is the ADHD/ asd/ anxieties/ phobias kid. We like to spread the joy wink>

alfiemama Fri 07-Dec-12 14:14:28

Sorry, just seen your other message.
Yes he has band E full time 1-1.
To be honest I'm beginning to consider if ms school is right for him.

alfiemama Fri 07-Dec-12 14:11:48

Thanks madwoman.
To be honest I hadn't even thought of that. Just me being a softy I don't want him to miss out on the fun. He doesn't need one full time it would just help with long trips. We are seeing the paed on Tuesday for a blood test, should be fun grin

He's very complicated and has a lot going on at the minute. Like I said he is food phobic and underweight and has joint problems which the surgeon has said they won't operate as the tendon isn't tight. The paed wanted it in a cast to straighten but surgeon said it won't achieve anything. Ds was getting a lot of cramps but now they think as his vit d level was low this could have been why. But paed said only slightly low and not concerned so still thinks its his joints. confused. He also has the added problems of gross and fine motor skills and now they think he has a sensory processing problem which I believe can affect balance.
It just seems extreme getting him a wheelchair and I don't want to discourage him from walking but in this instance I would have to say no. It's about a 40 mins walk there and back. Actually maybe even an hour with their little legs. He would be in agony. Well he actually couldn't do it. They'd have to carry him after 10'mins

madwomanintheattic Fri 07-Dec-12 14:01:35

<I should have said this was written into her statement, and her 1-1 knew that she would be responsible for the wheelchair for trips etc>

Des he have a 1-1? There is the possibility of a conflict from a supervision pov if not - particularly if it isn't a prescribed need. From my recollection, a child in a wheelchair does need 1-1 support for the duration of the trip, so if he does not routinely have 1-1 supervision (presumably he does for this type of trip anyway?) then you do need to discuss with the school how this will impact them, as often they will need to ask for additional parent volunteers for safety ratio etc.

madwomanintheattic Fri 07-Dec-12 13:57:55

Tbh, if this is going to be a permanent issue, you should just discuss with his physio and paed, and they will do a referral to wheelchair services, who will provide one.

That way, you have the backing of his professional medical team that this is a prescribed provision (and loads of kids get wheelchairs specifically for this reason) and then it's a no-brainer for school. They don't get to decide.

With pre-schoolers, I quite often recommend parents buying a second hand Mac major from e-bay or whatever, whilst the WCS referral wends throu, but I think for offer kids, where the potential for doubt surrounding need in school exists, then I would at least like to have a report stating that need on a school trip environment in my hand before I explained to school that this was going to be necessary. Then you can buy or wait for WCS.

When does he next see paed or physio?

alfiemama Fri 07-Dec-12 13:48:46

Thank you to both of you. He would only need pushing on the walk. He can walk perfectly well just not far. I will speak to the one to one and see if she is happy to do it. Just I've found a new lightweight one which would be ideal. I just get the feeling school will be having more of these long walks now they are older. It is a log way though or at least I think so.

Thanks for your helpsmile

bigbluebus Fri 07-Dec-12 13:31:15

I can't see why the school wouldn't allow someone to push a wheelchair, as long as they know in advance and they can Risk assess the activity to death.
My DD is in a wheelchair, but goes to a SN school (so slightly more ameanable to some of the things mainstream schools get uptight about), but her chair has to be pushed by bus driver or escort to get her into/out of school and then by TA's up and down the long corridors with very wheelchair unfriendly doors and on weekly trips out of school too.
I would say that refusing to push your son would be failing to make 'reasonable adjustments' and would be discriminating against him. Risk assessment just involves considering the risk of the wheelchair to your DS, any member of staff involved in pushing it, any hazards along the route and any risks posed to the other children in the walking party. They will have to have carried out a risk assessment for the walking party in any event. I'm sure that there's nothing that can't be overcome with a bit of willingness on the part of the school - as long of there isn't a flight of steps involved!

HairyMaclary Fri 07-Dec-12 13:05:06

DS doesn't use a wheelchair at school at all. However when they go on a school trip, or like today to a local church for a christingle service, he takes it. His TA pushes it. Like you we don't live locally and while I could have done it, half the fun is the walk with friends!

When he was post operation and couldn't walk, with my permission, and close supervision, his fri eds were allowed to push him during play times!

alfiemama Fri 07-Dec-12 12:25:01

I've not been on here for a while, sorry.

My son who is 8 has asd and hypermobility. Because of the hypermobility he struggles to walk far. School are planning a walk to a local high school for a carol singing trip. I a (I'm talking round a supermarket far) I'm tempted to buy a fold up wheelchair for him. I'm not doing this lightly and with a slightly heavy heart but it's not going to get any better for him, they can't operate or plaster his legs as it won't make any difference. He is also severely underweight due to food phobia so has little energy.

Are there any rules to say a teacher cannot push a wheelchair? Perhaps insurance reasons. I know I could drive him to the location but A) we don't love local (but I'll still do it) B) part of the fun is the walk C) he won't be happy and an asd unhappy child is hellish. grin

Thanks guys.

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