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Education for a child wiith chronic illness

(18 Posts)
tufty Fri 14-Dec-01 19:21:08

Having had an interesting time with my eldest starting school this term I am now about to start the procedure for my middle son, who is due to begin in September. He has an unfortunate number of serious medical conditions for which he has spent much time in hospital both for planned (tests/ surgery) or emergency treatment.
Is there anyone out there who has a similar situation and any ideas about what to do for the best for an enthuiastic sociable child who just gets ill a lot! He is being assessed for a statement but doesn't appear to fulfil typical criteria as he is actually quite bright...
Support/advice would be most welcome!

SueDonim Sat 15-Dec-01 00:06:52

Tufty, we were in a very similar situation with one of our children, also chronically ill, although we were able to cope until he reached senior school age. At that point, his condition worsened and his education followed the same route! We got nowhere with the school until we requested a placement at another school that specialised in children with his condition. Suddenly, things began to move. Like you, we didn't fulfill the normal criteria of Special Needs, which flummoxed them completely. Eventually, with the help of our GP, school doctor, teaching staff, and an educational psychologist (DS didn't need a psychologist, but it was the only 'expert' the Education Authority could come up with) we were able to work through exactly what would help and come up with a workable solution. He was given taxi transport instead of the school bus, on days when he was well enough to learn but not well enough for the rigours of walking to bus stops and waiting around. He was given after-school tuition and the possibilty of a home tutor was also mooted. We never did receive the last, mainly because DS's illness was unpredicatable in severity and length of duration of each episode, and the red tape involved meant it just wasn't workable. Overall, it wasn't an ideal solution, he still missed huge chunks of schooling and looking back, I think the system failed him. But, that was eight years ago and I'm sure things have progressed since then. Good luck with your son, do keep me informed of how it goes - I'd be delighted to hear that they can offer you lots of support!

tufty Sat 15-Dec-01 07:49:19

Suedoinim, Thank you for your kind words. Iguess we are lucky that our son is already being considered as potentially needing support ( I doubt he'll survuve a full day at school just for the amount of energy required... the furthest he can walk without getting tired is about 4m at present!) I'll let you know how it goes.
Just out of interest and if its not too nosey what is your child doing now? Ours wants to be a firefighter... hm.. ( although I guess thats not unlike my desire to be a ballerina when I was little... it didn't take me too long to realise it wasn't to be!)

SueDonim Sat 15-Dec-01 14:27:15

He's 22 now and living the idle life of a student, Tufty! His problem was severe uncontrollable asthma (to which he added crippling migraines from the age of 11, although that wasn't part of his special needs). But the asthma abated considerably when he was almost 18 and he has been able to live a normal life since then, although I doubt he would ever get accepted into any job where health was of the utmost importance, such as the Forces (not that I'd want him to join up, anyway).

He spent six months working in rural India, post school, which was very worrying, but the air seemed to suit him and he flourished. After that, he held down a f/t office job with no problems and has put his childhood illness behind him.

But there have been lasting effects in that he lacked any confidence. If you can't rely on your own body its a real b*mmer! And as parents we are paying the price in some respects, because now that he has more self esteem he resents us being involved in his life on anything more than a superficial level. Having once been so dependent on us for everything, it's as though he wants to break the shackles that bound him to us. But hey, that's okay! At times we wondered whether whether we would ever see him grow up to manhood, and it's a tiny price to pay for his good health!

I wouldn't worry too much about the future, so much time and so many things will happen between now and then, it's not worth losing sleep and brain cells over.

robinw Sat 15-Dec-01 15:20:47

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tufty Sat 15-Dec-01 15:46:22

Thanks for all the support... our son has (deep beath) Severe congenital heart disease, a rare immune disorder, osteoporosis, lax ligaments and wears glassess for severe long sightedness. He's also had operations to remove a weird tumour from his abdomen, pin down his paralysed diaphragm plus an adenotonsillectomy becauase of obstructing... not to mention the cardiac surgery he's had (and more yet to come!). Oh and he has got (lovely ) ginger hair! So, a bit of a mixed up physiology... He's in and out of hospital with infections- this year with no tonsils he's getting lots of upper respiratory tract infections instead. We have learned not to think ahead tooo much, things can change so quickly in medicine and so far he has survived so much and is clearly so determined to get the most from life... but I do find it hard not to worry.

sometimes.

Watch this space!

SueDonim Sat 15-Dec-01 17:12:09

Bless your little poppet, Tufty, no wonder you worry about him. I hope 'they' come up with the goods for you and I also hope you don't have to struggle to get them. And let's pray medical science will bring a miracle for you all. ((hugs))
Sue

robinw Sat 15-Dec-01 19:14:18

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ChanelNo5 Sat 15-Dec-01 20:49:52

Tufty - just want to wish your little boy well - he sounds like a fighter so I'm sure he'll do well! Good luck and love to you!

tufty Sun 16-Dec-01 21:30:05

Thanks everyone. it does get overwhelming at times but hey, today we went out and had a lovely family day at a museum and he was so happy!
Robinw we have just been giuven a nasal spray which has made more difference in a few days than all the inhalers and nebulisers preceding it, so fingers crossed there.( everyone's please!)
I'll write more after the education stuff has taken place...

robinw Mon 17-Dec-01 07:18:42

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tufty Mon 17-Dec-01 09:32:35

bless you for the moral support. It still feels like unchartered water because historically kids like mine wouldn't have survived to school age. THere must be others now that medical advances give so many more children the chance of a reasonable quality of life...?

Cl Wed 06-Feb-02 10:30:38

Tufty

Just read this thread ( was actually searching for teething stuff - that's the problem with Talk I get engrossed). Just wondered how things were going for you and hoping that your son is well and managing to enjoy some schooling.

tufty Mon 04-Mar-02 18:59:09

Thank you for your concern.. we are in the middle of the statementing process now and it appears that it'll tackle 2 aspects, his health and his high ability.. so that's lucky. BUT it all had togo on hold as he had to have emergency cardiac surgery recently. Thankfully it all went well so we're trying to get to grips with things until the next op (?1yrs time)
Actually today he walked the furthest he's ever walked! Not a big deal ( and less than my 20mth old managed but fab for him!)

"big School" is due to start in September, so we've got the summer to prepare! I'll keep popping the odd message, if you're interested!
( I don't get many chances to get online)

berries Tue 05-Mar-02 11:40:16

Tufty, glad to hear he's come through the surgery, must have been tough for you all. Hope he continues to improve.

tufty Tue 05-Mar-02 19:31:15

Thank you!

Cl Wed 06-Mar-02 18:31:57

Thanks for getting back - do keep us posted - feel as if we know him now

MABS Sat 10-Aug-02 19:05:47

Tufty - how's he doing now - is ' big school' still happening soon. Thinking of you

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