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Re: need suggestions/modifications...LONG vent-Teachers point of view

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Ruth,

The first thing you need to do is get him an IEP. Even if you have

to get a Lawyer to do it. His medical condition is causing him to

be unable to access the classroom work. It obviously has an

educational impact. I don't know about the laws in your state, but

I believe IDEA covers all states. If he has an IEP then you can get

resources, breaks, snacks, what ever he needs written right into

it. Again, you may need a Lawyer or Advocate to get it done. They

don't come cheap, but your son needs this. Teachers should never

have attitudes about helping kids. Easy or challenging it is part

of being a teacher. If they don't enjoy their jobs they can always

do something else and probably be payed more. I get angry when I

hear teachers making excuses. Teachers have challenges in helping

kids learn in many different ways. They can say why it is

difficult, but mistreating the kids, punnishing them daily or making

them feel bad about what they cannot change is just mean, wrong and

inhuman.

I have a possible mito kid and he has Gatorade in the nurses office

for emergencies. He is allowed to go from PE for his Gatorade if he

feels weak. My son has hypoglicemia and dehydration issues. He

also has heat intolerance issues. So far we haven't had to write a

snack into the IEP, but as he gets older it is longer till lunch, so

it may become nessesary. He has an IEP because he has speech needs

and has an ADHD diagnosis also. His ADHD has a metabolic cause so

meds have a 50% chance of not working at all. Behavior modification

and making sure he has eaten and is well hydrated has helped the

most.

I hope things get better for you. I hope his teacher opens up her

heart to help him be successful. I truely believe is just takes

someone who cares enough to help and go that extra mile.

I would request, in writing, an IEP meeting. I would also request

that the school nurse be at that meeting. Have you gotten anything

in writing from the doctor who made the diagnosis? If there isn't a

diagnosis a doctor (maybe Geneticist) can still write an emergency

letter or something explaining what happens when your son

experiences fatigue and how serious it can be medically for him.

This must be very difficult for your son. My heart goes out to him.

My kids do not like being different and they each react differently

to it. My 7 yr old gets furious, my daughter cries. My 5 yr old is

a trooper. I believe all of the early intervention has helped him

cope better than the others.

Barbara

Mom to 10 AD/HD,Asperger's Syndrome & GERD, Max 7

Asperger's Syndrome & GERD and Corbin 5, AD/HD, poss Mito or

Metabolic disorder, Oral motor and motor planning dyspraxia, fine

motor delay, GERD, hypoglicemia and heat intolerance. (born with

Lactic Acidosis, high Pyruvic acid levels, hypoglicemia, Apnea,

severe reflux and carnitine dificiency. Stopped breathing at 3 days

old.)

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