posted
My ds, 12, is in sixth grade, has an iep, with a letter from his LLMD explaining his need to not run/strenuous exercise, etc.
Son's coach is the head football coach at the high school (in a small town, enough said). He says that "He is going to get my son in shape." Ds is 5'3" tall, broad shouldered, but weighs 160. His arms and legs are proportionate, but belly and face are fatty. We have an appt with endo in Dec.
How do I get both DS/Coach to comply with doctor? Son wants to participate, wants to be active, but can hardly breathe when running, jumping. Coach is just an idiot, says the letter does not specifically state "no running". My son will literally collapse after running, he is so winded. He has diagnosis of Bart/Babs/Lyme. We already whipped RMSF!
Any help would be appreciated!
Posts: 55 | From Missouri | Registered: Sep 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For that endocrinologist appointment in December, please be absolutely CERTAIN that she/he is ILADS-educated and thoroughly lyme literate.
If not, I think it may do more harm than good. Has your son's LLMD made this referral? If not, ask the LLMD for someone who can be trusted to have the necessary knowledge to treat a lyme patient.
HOW TO GET THE COACH TO COOPERATE?
Don't. Fire him. Your son is not a candidate for that coach's program or tactics. Someone who thinks like that does not have the medical knowledge necessary to keep your son alive.
You are the boss here. The letter from the LLMD should be clear. There is to be NO AEROBIC / STRENUOUS EXERCISE. PERIOD. End of discussion.
You son also needs to understand the importance of this and come to terms with all the emotions around it. It's not easy. But wanting to do stuff that could prove dangerous while dealing with infection could cause damage, even death.
Seriously. It's a hard warning but so very important: aerobics are just not an option now - or for some time in the future.
The heart suffers terribly, in many ways, with lyme. The adrenals are taken down. The nervous system is taxed.
The liver, when pushed with exercise, puts out a lot of waste material. Along with toxins from lyme and from treatment, the added toxic load from exercise can cause liver failure.
The immune system just can't handle the added stress of aerobic or harsh training of any kind.
Weight training can be good - but ONLY with a LL trainer. Does your LLMD have any suggestions for someone who could work with your son?
And, my guess is that note to exempt him from P.E. would be in order. If there is any kind individualized session that is possible, with a LL PT advising the school PE teacher, this might work. Otherwise, he may have to get his physical education outside of school, in a different way.
Qi Gong or TAI CHI may be more in order. Most cities offer instruction but, again, not all techniques are the same. Some are more martial art so find one that is for healing.
About the coach and your son wanting to be part of the "team" culture - the camaraderie of friends may have to be nurtured in other areas besides sports.
And I would not be concerned about his weight. That will work out after the infections are managed. It's best to focus on healthful eating and non-aerobic movement that works for your son and can offer flexibility.
For some, no exercise is possible and even need a massage therapist to help with gentle resistance exercises where the LMT moves the limbs and the patient offers gentle pushing. If your son is at that level, a massage therapist might be the way to start.
Even if better than that at this time, a massage therapist might be of tremendous help.
A rebounder (or mini trampoline), where he would just gently bounce, feet not even leaving the mat, is also good IF no dizziness or vertigo is involved. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
We had our LLMD write a letter and say that DD was not to participate in phys ed. and since that only works for so long, as they have to pass gym to pass school, he then wrote a letter saying she was to work out at the local gym instead, which she did.
She went two or three times a week, lifted weights (gentle arm and leg work) and walked on the treadmill. Nothing strenuous.
It was actually more physical activity then she would have gotten in gym class as the class was bowling at the time.
If you can't move him, go around him. (Him being the blockhead teacher.)
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If a nearby college offers a TAI CHI or Qi Gong course for credit, that might substitute.
Somewhat along the lines of an individualized assessment plan in academics, there must be the mirror image of that kind of thing with PE.
I'd also talk with an attorney who knows disability law. Sounds like the coach (and maybe the school system) is not in allignment with the Americans with Disability Act (ADA).
Reasonable accommodation includes altering PE requirements for those unable to participate in the regular course.
Just four of many diagnoses that are often caused by lyme or other Tick Borne Infections -- and demand restriction of activity are:
Chronic myocarditis
Chronic encephalopathy &/or encephalomyelitis
Adrenal dysfunction &/or Adrenal Insufficiency
Vestibular Disorder
If your LLMD concurs, using these terms instead of lyme may get your son much more respect and he may have much more respect for the care required, too.
Each of those terms can be searched through Google. A cross search, adding "lyme" or "borrelia" will also bring up more results to show the connection.
But you may want to keep "lyme" out of it. In fact, as long as a doctor sends a letter, you may not NEED to state a diagnosis. This would be best to just state "for medical reasons" . . .
posted
In our high school all I needed was her doctor to send in a note stating timeframe and what exactly she couldnt do. So we put something like: no running, no swimming,etc but that she could do walking, stretching, lite weights.
Never had a problem. Also in our school if you have an extended gym note you can do other projects to meet the requirements for passing gym.
We didnt even need her LLMD to fax the note it was just our primary doctor.
Every school district/state is different however.
Good luck.
Posts: 499 | From Malta, NY | Registered: Dec 2008
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posted
keebler is right on the money. i would reread keebler's posts imo!
use different terminology with schools (avoid the word lyme totally, emphasize SYMPTOMS. it doesn't matter what the disease is. THEY are not doctors.)
but overall, a DOCTOR's NOTE stating any limitations is to be followed, BY LAW.
THEY are supposed to arrange this. it can certainly be written that gym credit is obtained after school hours at home.
legally, what doc says is word. but do all you can to avoid battles and even conversations when it comes to illness needs, go above him perhaps, and do not give any explanation. none is necessary. docs word is law. say simply that to a principal and watch things change.
i would also be sure your son understands the inmportance of listening to docs orders, so his future health will be restored, and he has to find a way to rise above guff from his friends and ignorant staff. (which is not easy).
he will need support in that area.
best, mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
you might consider simultaneously asking the social worker to support the situation as:
your son has illness related disabilities which effect his daily living and learning, and as such needs support so as not to feel excluded or in any way less than his peers because of his current limitations.
always better to pin the responsibility on other staff too. include the nurse.
keep this simple (at least with them - and the issue really is simple), i can't stress that enough! be polite, and try not to get upset. (this can be hard, staff can be difficult if they have the opportunuty to, do most things in writing).
if it gets complicated, talk to an educational advocate.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Check the language in the doctor's letter and the IEP to make sure it's explicit and clear in what your son is not allowed to do, and fix it if necessary. If the coach is not following that, then take it up immediately with your son's IEP coordinator. It's also a good idea to document everything -- exactly what the coach/school is doing that is in noncompliance with the IEP and how it is negatively impacting your son.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
As a teacher and someone with a bit of legal knowledge, I can tell you that you have federal law on your side if the IEP is based upon his disabilities from Lyme.
If the IEP is written for other reasons, it may not work in your favor here. It won't work against you, but it won't help.
If the IEP outlines accommodations that your son needs to access his education, then the school must provide that. Period. This may possibly include funding a PT to meet with him, if PE is a requirement. I'm way out on a limb on that one, but I have seen similar things.
You need to ask to speak with the person administering the IEP, and if you find no recourse there, go to the building administrator. If still nothing, go to the district/supervisory union/whatever title your town has head of special education. IEP lawsuits are expensive.
I agree with Six about checking in with your son, but I also have spent a lot of time looking at adolescent psychology. He needs to be very explicitly told EXACTLY what might happen if he exercises like this. It can't be gentle. The coach needs the same talk.
Good luck. Stick to your guns on this one. Most people I encounter in education aren't purposely trying to be a problem, they just don't realize the seriousness of the issue.
Posts: 447 | From Vermont | Registered: Jan 2011
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quote:Originally posted by rera2528: I agree with Six about checking in with your son, but I also have spent a lot of time looking at adolescent psychology. He needs to be very explicitly told EXACTLY what might happen if he exercises like this. It can't be gentle. The coach needs the same talk.
This is exactly where I was going to next .... perhaps your son is *wanting* to play, so is participating and it's not 100% the PE teachers fault. I would rule out that possiblity before getting to firm with the school.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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nefferdun
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Member # 20157
posted
I agree with what everyone has said.
My first response was "what an arrogant blockhead" but it could be this is just an ignorant person with good intentions. If the PE teachers goal is to help your son get into better shape and lose weight, then lifting weights every other day and walking could be a good alternative.
But in the pits of my babesia, I could hardly move so getting to school and walking from class to class might be as much as your son can handle. Even he if says he would like to participate, he might not be able to.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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