Invisible Disabilities - dealing with school and others (long, sorry)

[Weegiemum]

My dd2 has Perthe's disease, a hip condition that means she has to be off her feet as much as possible fot the next year. It will get better on its own, if she doesn't weight bear.

She just started school and all of a sudden it all seems such an effort. I really don't know how those of you with children with a permanent special need cope! First of all, when I went to pick her up on the first day, her teacher knew nothing about it and I had to explain it all again, even though I had done so in letters and emails and a meeting with the head before the holidays. I've already posted about this.

So -- I explain the whole situation. Then this week I find out that even though she is supposed to use the lift, (classroom 1 floor up) she has ben walking up. Asked the teacher, who said 'but she can climb the stairs fine'!!!! Thats not the bloody point. She can climb, run, jump, hop, skip etc. But she MUST NOT do any of these things if she is going to avoid a prolonged hospitalisation and arthristis in her young adulthood, and possibly an operation next year.

I also have to pick her up at lunchtime at the moment (she goes on the school bus and in 2 weeks will be coming home on it as well, but not yet) and I know I am getting queer loks from the other Mums I don't know as there I am with the buggy (its a McLaren Major but I do think they just see 'buggy') and then on Friday I heard one say to another as we went past 'you would think that child couldn't walk!'

I was so surpised I didn't say anything, but I know I should have. To see that mum walk away in the other direction with her litle girl running and skipping along was just heartbreaking - dd2 was so active and happy, dancing and spinning around, and now she can't. She will again one day, but every day we have tears and tantrums because she can't right now.

I have to pick her up in the buggy as I don't drive and even if I did dh has the car for work. I'm dreading her starting full days as there will then be the lunch break in the playground and I know I have another fight on my hands to get her adequate supervision to be siting down at lunchtime.

I was wondering about asking for a meeting with the head to discus their plans for this (I know they won' have any yet).

Also - she obv can't do PE, so needs to do something else. The school have suggested that I provide something for her to do during PE lesons. Shouldn't that be their responsibility? When I did provide something (her sewing! She has got very good at sitting-down activities at home and is doing a '101 Dalmatians' tapestry thing to make a pincushion at the moment) they said it was 'dangerous' because of the needle. thank goodness I didn't send her with her knitting!

Up until now, I would have said we had an excellent school, and I was delighted in every way. Now, I'm not so sure.

Aaaargh!

[jimjamshaslefttheyurt]

They said the needle was dangerous . But presumably not dangerous for her to damage her hip by not using the lift

I agree with riven about the buggy. People are too thick to realise that a major buggy is a wheelchair if the child sitting in it looks 'normal'. Remember Fio's immortal words. "kid looks normal, can;t work it out, will be a twat".

If you have PMT one day I would stop the woman who you overheard and say (smiling very sweetly) 'I couldn't help overhearing what you said the other day, my daughter is able to walk but she has a condition called Perthe's diseases that means that if she isn't very careful over the next year or so will leave her with permanent damage'. But I've developed an attitude problem over the years

[Weegiemum]

Thanks.

Hve emailed the school this morning (relaised that I never get a reply to notes, and they can never 'find' the person I want to talk to if I phone, but they do reply to email)

Head already replied, saying she will 'investigate my concerns'. Blah de blah de blah. Says she's short of playground supervisors.

Good tip about the wheelchair. I didn't want to have one as I didn't want to portray her as SN, partly as I didn't want her stigmatised in a school with no other children in wheelchairs, partly as I still feel a bit fraudulent using services like OT as she is not 'seriously' affected - what if someone else needed one more?

But am going to have to develop an attitude I reckon.

I just hope I was never one of those Mums that said things like that. I don't think I was (I have a brother with SN) but I hat eto think I would have said something off the cuff that could have been upsetting.

[BriocheDoree]

Don't worry weegiemum, I think most of us mums of SN kids develop a thick skin or an "attitude problem"!!

[AttilaTheMeerkat]

Hi Weegiemum,

I would also suggest that you request the consultant in overall charge of your DDs medical care (especially if she is under the care of a cons currently) to write a letter to the school. Ignorance is a dangerous thing and these people perhaps need a more official approach. Also speak to her OT about this too.

Have you also contacted www.perthes.org.uk; they should be able to give some more advice too re talking to the school.

School should also find an alternative activity (if they don't like her sewing - sigh) for your DD during PE lessons.

(BTW I can clearly remember doing tapestry work during junior school and needles were used. No-one got hurt. How times have changed).

[Romy7]

print off all the perthes info and get a copy for each of the teachers and TAs.
spend the rest of the term discussing loudly with any other mother who looks in your direction that it is so heartbreaking that your dd is NOT ALLOWED to do ballet, PE, run and hop and jump with all the other kids etc etc etc.
the grape vine will surge into action. it'll be fine.
we've known a couple of girls with perthes disease and i have to admit , i was a bit baffled by the first one (she was one of dd1's friends) and i had to ask her mum which bits of the birthday party she would be able to manage - it all got a lot easier after that - dd1 didn't know anyhting except 'she's not allowed to x,y,z...'
the perthes foundation will also loan you wheelchairs and stuff i think...?
is there a reason why they are not including her in pe in the same way that they would a child in a wheelchair? i'm a bit that she is being excluded - what about seated ball games and passing beanbags/ into hoops etc? surely there is a way of supervising some activity?
it does get easier, i promise - you just have to get the word out

[cory]

Precisely our situation. Dd has Joint Hypermobility Syndrome- which means she can walk fine some days, other days she can't walk, and then there are the days she can't get out of bed... Again she has to avoid some activities that she could do, for fear of damaging her joints.

We had a lot of trouble with her junior school- except for the last year when the old headteacher retired and everything that had been impossible suddenly turned possible.

Some gems included:

making her crawl on her hands and knees into the lavatory (as they wouldn't let her use the disabled loo- apparently that was to be kept nice and clean for visitors )

refusing to reschedule the maths lessons so her set got taught on the ground floor: she crawled up the stairs for two terms

leaving her without maths tuition when she refused to crawl

ringing up the night before the trip to the zoo and telling us she couldn't go as they had "forgotten" to order a bus that could take the wheelchair (it folds...)

We found that endless doctor's letters helped; as did having the paeditrician visit the school. But first of all you must see the head- and ask for the SENCO to be present as well. Also, I have learnt never to assume that because I have told the office/headteacher something, that this will then be known by the teachers. So I have learnt to make appointments with key figures myself, and keep dd liberally supplied with notes from home, explaining what she can and cannot do.

We also found having the wheelchair made a big difference as it had people thinking "aha, disabled", which may not be what you want, but is a whole lot better than "weird". Since dd's disability is permanent we bought a wheelchair in the end, but before that we had one on loan from the Red Cross for a long time- that's another possibility.

I have changed my mind about the whole labelling thing. These days I want people to know the truth; if that means we have to use the D word, then so be it. Dd is not at all ashamed or embarrrassed about hearing it.

Last year in Junior's things got a lot better. What they worked out for PE lessons was that she could first do her own physio and then go and read in the library. Bit dull perhaps, but not a problem. She even went to the activity camp- though obviously she ended up doing the same limited activities again and again while her peers were rock-climbing and abseiling.

[cory]

I would add that we have never found that there is any stigma among school children about using a wheelchair. Dd's friends have always taken her condition in their stride- as they do the child with Downs syndrome, and the child who is behaving oddly because her mother is terminally ill (her family made the brave decision to ask for all the children to be informed so that they would understand the reasons behind her behaviour).

[anonandlikeit]

We use a major buggy & have had the blimey, surely he's big enough to walk.

Can you ask your dd's OT to do a school assessment. They will issue the school a report of all the do's & dont's.
DS2'S OT is very good at telling his school exactly what they should be doing, and she checks up on them.

Sadly many m/s schools don't value the parents opinion but they do tend to listen to the professionals.

[deepbreath]

My dd's 5, but her condition means she's the height of a 7-8 year old and growing fast. We've had a few comments about her being in a baby's buggy because she has Marfan Syndrome which is fairly invisible. Some doctors fail to spot it. How I deal with people depends on what kind of mood I'm in. I'll explain it nicely if I'm OK, but if I'm not they'd better be able to run fast!

We chose the Major over a wheelchair because dd can (and does) walk a little within her limits, and I thought it might look a bit strange if she was to be in and out of a standard wheelchair! Dh also had issues with dd's mobility problems because her condition is hereditary, and dh has it too (but is affected in different ways).

I am disgusted at your dd's school, but not entirely surprised at how they've been with your dd. If a child can do something, the school assumes that there's no problem. My dd's physio taught her a particular way to sit if she had to sit on the floor at school, because sitting with her legs crossed is a big no-no, it strains her hips and knees too much. I didn't think to tell the teacher this, so she took me to one side fot a word because she thought dd was being awkward! She was fine when I explained it, but dd was still asked a few times to sit cross-legged because "it is only for a few minutes".

Sometimes, telling people about a condition like our dd's is like talking to a brick wall isn't it?

[cory]

We never had a problem with people judging dd because she is in and out of the wheelchair. Obviously, I don't know what total strangers may think as we walk down the road- but then I don't really have to know that, do I?

I've found the essential thing with schools is to spell everything out in detail. If you haven't told the teacher, then you can't blame her for not knowing. So these days people get told in tedious detail...

We've told the school that dd must sit on a chair and not on the floor, for same reasons as Deepbreath's dd. Or, to be exact, the OT told the school. IME anything that has been done through the OT has worked really well.

[madmax1961]

I don wonder about schools and hidden disabilites cos i had the same through my daughters schooling. She is now 11 and just stated secondary school. When she started infant school she was tiny has a heart/hearing/learning and mussle disability. I do not drive so had to walk her to and from school and she needed a buggy as she was unable to walk the distance. We got some really strange looks but she had no idea that there was anything wrong with her. The schools she went to all had pages of info from paed. etc but i don't think half of then even bothered to read it. One school(daughter can only eat small amount of soft food)got very annoyed because she was not eating enough of her dinner or fast enough so FORCE FED HER. She prompty was sick and sent home. NO ONE said why she was sick. She started crying evertime it was time for school. One day a dinner lady came up to me and said that she had just given up her job and wanted me to know about the force feeding. I was horrified. I took her out of that school and put her in another who have been brillient with her. She has just started secondary and to start with they were being abit dismissive of her disabilities but now she has started they seem to be better. fingers crossed

[Littlefish]

Weegiemum, no idea whether your LEA do this, but would it be possible to apply for a statement on a temporary basis for 1 year? This may help to get your dd the support that she needs.

[cory]

It may not be possible to get a statement for a purely physical disability: our LEA only does them for learning difficulties, and not being able to walk doesn't count as a learning difficulty. This can leave physically disabled children quite unsupported; we had to fight hard to get help for dd, though she had difficulties accessing the classrooms and missed a lot of time due to chronic pain.

[Weegiemum]

Thanks for all your help ladies.

Had a great meeting today with the head, deputy, class teacher, SENCO and classroom assistants. Began with an apology for the time it had taken to get the meeting etc ... so I wasn't too stroppy.

They have

1. accessed a wheelchair for through the school day
   
2. set aside a 'quiet' area in the playground for dd2 to sit in, and for other children who want to be quiet.
   
3. got a system in place for her to use the lift
   
4. got a system in place for her to stay in on cold days
   
5. invited me in to address the class about her problems
   
   So I am actually quite pleased. Especially with the apology.
   
   Thanks for your support once again!

[cory]

Glad to hear it