posted
My 9 year old son has lyme disease and has hardly been at school for the last 8 months.
His main symptoms are headache, stomach ache and joint pains with monthly flare up of symptoms. However sound sensitivity means that he finds it overwhelmingly noisy in class and he hates not feeling well enough to run around in break times.
We are hoping to get him back to school in the New Year - even if only for half days as it's the social contact that he's missing aside from the academic side of things. He is smart so I assume he will catch up with the academic side of thing once his health returns.
Can anyone (parents or maybe teachers) give me some advice. How important is it to do some home tuition (he's always reluctant and I am not strict enough to enforce it as I know he is feeling unwell) or to push him back to school? How many other children have missed lots of school? What have other parents done?
Most of all I want him to get better as I am sure the school thing will then fall into place but maybe I need to plan for the fact he might be off school for a while.
All advice gratefully received. Chiz
Posts: 67 | From UK | Registered: Oct 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter started having migraines the beginning of high school. By the end of her junior year, she was bedbound with an unknown illness. I shutter to think of the days I forced her to go to school in so much pain.
There are many people, on the board,who have worked with the school systems. You have to be tenacious. I work for the school district and they were reluctant to supply homebound instruction. But, high school is more difficult.
The first thing you need to do is ask for a 504 plan. Talk with the doctor about getting a letter. At his age, there should be plenty of teachers who would like to earn a little extra money doing homebound education.
He needs to rest, poor dear, and not be stressed. Sometimes just going halfdays is hard. Homebound may be your best option until he feels better. It's less disruptive to the classroom, as well.
I think when your child is sick, the teachers and students don't understand the ups and downs of the disease. My daughter was ridiculed by her teachers for not coming in one day, but coming in the next. We didn't know why until a year ago.
So...recap....get a letter from the doctor, arrange a meeting with his teacher and principal, and ask for a 504 plan. Bring a list of lyme symptoms with the ones highlighted that your son experiences. It's not necessary, nor is it required, but it is helpful for them to know what your child is suffering.
posted
I don't now if the UK require schools to set up educational plans, like in the US, for kids with health needs. If they do, the advice for a 504 plan is great. Does your son's school have a speech pathologist or audiolgist? If so, they could look and you child's difficulties learning in noise and work with the teachers to set up the learning environment to work better for your child's needs. (e.g., seating away from doors, carpeted rooms, use of fm systems , etc.)
best of luck
jif
p.s. feel free to pm for more info
Posts: 208 | From Santa Fe | Registered: May 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Oh...didn't notice it was UK. They may not have a 504 plan. All that is is a contract for special educational needs. Some kids have to miss PE, come in later than the other kids due to medical reason, etc.
I'm not familiar with UK school systems. Darn...sorry.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Sorry - I should have mentioned that we are in England. Not sure what the regulations are here but I will enquire. I did phone the headmaster at the end of last term and asked him to call me back but he didn't and then of course it was school holidays. The headmaster seems more interested in having medical letters showing my son is sick than offering educational support at home but I will perservere.
We can pay for private tuition but I have hesitated to set it up as I keep hoping he will get back to school. Thanks Kelmo for supporting the idea of him staying at home when unwell. He is a sensible little fellow and he often says "Mummy, I want to go to school but I am just not up to it today". Of course he looks fine and if friends drop by (rarely these days) then he can rally and they can't see the problem, but that is beside the point.
Last term he had really bad burping that lasted about 4 weeks and he was told off in class for it. I hadn't told the teacher that it was a new symptom (thought it was better the day he went back to school) but once he had been reprimanded he didn't want to return when burping (it was very off putting even for us who understood it wasn't his fault - luckily it has calmed down now).
It's just so hard knowing how long it is going to go on for. I guess we have to plan for him not returning to school and set up home tuition etc. It is very disruptive for him to have a few days at school and then time at home so maybe it is better to keep him at home until he is well enough to stay in school all the time. At least he is only 9 - it must be so much harder when a child is older.
Incidently we have been to USA to see the wonderful Dr J so we keep faith with him. Thanks for sharing your thoughts Chiz in England!
Posts: 67 | From UK | Registered: Oct 2006
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Hi Chiz-
Sorry that your son is very ill. My son was in and out of school for three years. Our 8-9-10 grade, 14-16 years old. The school probably wants letters to document his illness so they can comply with regulations.
We ended up just tutoring my son ourselves when he was well enough. You probably have a good sense what he should be doing in school. Keep it fun, short and non-stressful. When my son could be out of bed but not well enough for school, we watched educational videos and called it a day.
I got to the point that we just did his homework, if he knew the concepts, and didn't worry about it. The info seemed to be going in. He didn't test well until he was well, and then he was testing where we expected him to be based on IQ.
In the long run of life, if he stayed back, who cares. I learned to embrace the days he was home with me, even when he could not get out of bed.
My son has been well for a year, is accepted at college and will go if he passes history! The worries don't end, they just change.
posted
I'm not sure in the UK what they offer for special education services. But here in the states we had to go through special education and get my son labeled Otherwise Health Imparied. My son has been out of school for two years and they provide a tutor for homebound services. He is in 11th grade and may have to take an extra year to graduate, but his health is number one.
Good Luck
Amy
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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posted
Thank you for all your suggestions. However the BIG news is that my son went back to school yesterday. It was difficult for him yesterday and today I brought him home at lunchtime. Guess what, he couldn't wait to get back to school for the afternoon! He literally skipped down the road.
He started Plaquinil 5 days ago and has been much much better since then. Maybe a coincidence and maybe this remission won't last but who cares, I am just enjoying every moment of it.
Bless you all.
Posts: 67 | From UK | Registered: Oct 2006
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