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What's the best way to get a child to school?

(16 Posts)
LadyMaryCreepyCrawley Fri 09-Nov-12 11:21:42

Ds is 13 and has problems walking. He's OK for a couple of metres (sometimes less) on a flat surface, then he struggles as the ligaments in his ankles are too loose so walking becomes painful or he falls over. I have to take him to school because he falls into the road and he needs someone with him to make sure he's safe.
I did apply for DLA a couple of years ago but they turned him down confused, they seemed to ignore the fact that he's in pain and it's unsafe. I'm applying again (farking form), but I've been trying to find out whether the local council can help (a bus pass or something). They are not picking up the phone though. The trip to school involves a bus, and then a tram as he'd never make it up the hill. Do you have any ideas?

Thank you wine

SallyBear Fri 09-Nov-12 13:59:51

Sounds like he should get school transport! Does he have a statement? He could be eligible, that's how it works in my LA but that might only apply to fully funded dc.

LadyMaryCreepyCrawley Fri 09-Nov-12 14:06:05

No, no statement. It's a private school, very small (he also has sensory and social skills problems). I can't get through to the LEA.

BeeMom Fri 09-Nov-12 18:49:20

"Can't get through" as in they are not responding at all, or as in they are not hearing your concerns?

I don't know if it is different in the UK, but here, provisions are only board specific (LA to you) so a child has to be re-identified and re-statemented if you move from one LA to another... the problem is, private/independent schools fall outside the realm of these rules - all they need to do is adhere to the provincial curriculum.

If his mobility is impaired, perhaps the input of a PT for his safety would be prudent. He sounds like he might benefit from some sort of supportive braces for his ankles or a cane to help hi support himself if his ankles give out... how does he manage to get around the school once he arrives?

I know the DLA form is daunting, but it sounds to me that he would logically qualify (although we all know logic is not the language of government). Supportive input from a PT who has assessed him and can vouch for his weakness and/or his GP would help the application process along, I would think.

Sorry you are having such a tough time.

LadyMaryCreepyCrawley Fri 09-Nov-12 19:33:15

Sorry. The number just rings and rings.

He struggles at school, and is always late to lessons because he has to stop. PE is a bit pointless, he's slow getting changed, does a few minutes then needs to sit out. He's waiting for an OT and a physio appointment.

Walter4 Fri 09-Nov-12 20:14:00

Does you're son have have hypermobility syndrome? Mine has, he's 4 and has been having physio every day with us at home ( under physio instructions) since he was one. Getting a diagnosis , if this is what he has, would help with improving his condition. My son is fine , runs , jumps etc a bit weeker and prone to falling , but improving. He is very hypermobile in his ankles too. His strength does need to be built up to support his joints .
You're son sounds like he needs help to strengthen his muscles too,it takes a long time , but is really worth it.

LadyMaryCreepyCrawley Fri 09-Nov-12 20:18:23

The paediatrician assessed him for that, his ankles and wrists are severe, but the rest of him is OK so she didn't say yes or no. confused I paid for him to have weekly pilates lessons a couple of years ago, that really helped to stop the falls but didn't help with the pain. He has flat feet as well, so wears insoles (which also don't help with the pain).

MammaTJ Fri 09-Nov-12 20:24:36

Makes sense to get DLA!! Really, I see people who can walk perfectly well most of the time, but sometimes unable to walk who get it!! I do not disagree with them getting it, but surely you should too!!

Walter4 Fri 09-Nov-12 20:30:32

I am not sure a paediatrician is the one to diagnose HMS. My son was diagnosed by Nathan Hasson in London after being told by 2 paediatricians he was ok. Mr Hasson is a rheumatologist specialising in HMS. He also has flat feet and orthotics which are really good, without then his alignment would be out causing pain and more likelihood of falling. With his advice he functions almost totally normally, still has pain in he mornings and if he does too much, but nothing like before. He is very hypermobile.

LadyMaryCreepyCrawley Fri 09-Nov-12 20:48:58

I have another form, Mamma. Their excuse was that he could actually walk and it wasn't life threatening to do so confused

She assessed him using the beighton scale, Walter. The physio should assess him again (when the appointment comes through).

It's costing me a fortune to get him to school, my ticket is twice the price of his, and the tram to get him up the hill (2 stops) is £26 a week! I get so pissed off, it's such a rip off but there's nothing that I can do.

Walter4 Fri 09-Nov-12 21:20:34

How could he have such difficulty walkingbduevto lax ligaments yet have no diagnosis. It must be awful for him. I hope the physio looks into it again for you.
It's appalling that you get no help when he clearly needs it. I had to go private as the nhs people were clueless and not about to do anything.

LadyMaryCreepyCrawley Fri 09-Nov-12 21:32:18

This has been going on for years! sad

The first GP referred him to an orthopedic surgeon who (despite my telling him that ds was hypermobile- I'm also hypermobile so I know the signs) planned on operating. This would have involved breaking both of ds's femurs, turning them slightly and pinning them. Ds had a gait assessment, which said this wasn't necessary. The orthopedic bloke then referred him to a NHS physio, who agreed with me. She saw him once, then fell off her horse so cancelled all further appointments. I called about 4 months later, to find that they had discharged ds. In the mean time I paid for him to have pilates lessons. My GP referred ds to a paediatrician, she didn't have a clue. The school GP referred ds to a community paediatrician, she then referred him back to the NHS physio and OT team. This appointment took months to come through, and by the time it had we'd moved house so they refused to see him.

I had to go to a new GP and get a new referral to a new paediatrician. She is referring him, again, to a paediatrician and an OT. We're now waiting, again, for an appointment. In the mean time, ds can barely walk down the road. I applied for DLA for him 2 years ago and they turned him down as he 'can actually walk'. They rejected his appeal. It's just a sick joke.

Walter4 Fri 09-Nov-12 21:41:22

Oh my god, that's what they suggested to me for my son, I took him and walked out! Could you ask for a referral to Nathon Hasson? Privately it would cost about 200 to see him. He is wonderful and also has hypermobile children, he could then refer you for physio/ orthotics back through the NHS.
Sounds like you've have a dreadful time, and perhaps you've tried all this. Please ignore me if you have smile

LadyMaryCreepyCrawley Fri 09-Nov-12 21:46:11

I did try to get a private appointment for him with one of the professors at Great Ormond Street but I didn't hear back from him confused I'll google Nathon Hasson. We are waiting for another physio/OT/Orthotics appointment though. I could really do with some help getting him to school though, and I don't really know where to get this.

Good for you! I'm shocked at how they treat children. It's not rocket science.

Walter4 Fri 09-Nov-12 22:12:47

I'm not sure about this either, I hope someone will come up with some answers for though. Could the school help?

LadyMaryCreepyCrawley Fri 09-Nov-12 23:44:02

There is a school bus but he won't use it as he's had a bad experience on a different school bus. It would make life soo much easier. sad

They've changed the DLA form, this one seems so easy to fill in. confused

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