cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
I think I had posted here at some point that two of my kids were dxed with lyme this past June. They are under the care of our lyme angel, Dr. J. My younger son is showing some great improvement. His grades are going through the roof and he told us that he is feeling 'smarter'. He is coinfected with lyme and bart and it looks like the bart is on its way out of his system....so we are real optimistic about his recovery in the months to come....
Our older son is getting slammed around by the cooties....he hasn't found the right combo that works for him yet but obviously things are getting stirred up. We thought he was herxing but it appears that it wasn't after all, so a med change once again. He has missed about 2 1/2 weeks of school. He's a high schooler, so this is really bothering him, not to mention being away from his friends....
I just wanted to let some of you parents know that there are some wonderful school districts out there that are really concerned about kids and their health. I was expecting the worst based on many of the struggles people here have had to ensure to get their children properly educated in the midst of all of this...I have a very open relationship with my son's teachers and the support staff and they wanted to see him home tutored! So we got the letter of necessity from the doc and will be starting within the week! Unbelievable...with everything put into perspective, my son just feels emotionally better knowing that teachers will work with him every day at his pace and he will get everything done. And he can concentrate on getting well....
So I just wanted to let people know that things sometimes do happen and work out well....oh, yes, in the midst of all of this, I had my disability hearing and was approved....a bittersweet victory... cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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Hi! Thank you for the little bit of hope you have granted me! My 10 yr old son and I are going to talk to my LLMD on Wed. about abx for him.
It was nice to hear about the school's attitude. My son's teacher has shown a different kind of attitude towards his previous diagnosis of depression. She has taken most of his privilages away until he gets everything done properly and on time.
He is a B- student but is getting 'lazy' and has a hard time remembering any assignments. He actually forgets where he has left them.. school/home/car? And with 3 kids and Lyme I can't help much..
I have no idea what to tell her (she's also only 26yrs old) about the Lyme/Bart issue... I think she believes that I am just making exuses for my son.
If you have any suggestions please let me know.
I am wishing you and your boys much health and happiness! Take care.
Posts: 26 | From Langley, BC, Canada | Registered: Dec 2004
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cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
SweetRhapsody, I came across an excellent article at the LDA website. I made a copy of it for my son's school, so that they can start a 'lyme file' if they are so inclined. The article was written by the LDA president Pat Smith. Go to the LDA site and bring up the article called "The Effects of Lyme Disease on Students, Schools and School Policy". There is also a very good article written by Dr. Charles Ray Jones about children and lyme disease and what schools and teachers can do to help. Maybe you can give your child's teacher a copy of either of these articles and ask her to do a little 'homework' LOL!
The behavior of your child's teacher,Sweet, is unfortunately more typical - they just don't get it and are quick to 'punish' instead of understand. I had kind of a similar situation with one of my son's teachers, altho in her case she is a veteran teacher. I tried the 'nice route' first, with no effect, so I went into 'Mother Bear Mode' with her and copied my rather forceful letter to her off to the building principal and the director of pupil services. Miraculously we came to an 'understanding' and she has been very cooperative ever since! I don't normally let my lyme rage get the best of me, but darned if I was going to let this teacher get away with how she was treating my son....
There are several parents here that have effectively advocated for their children's education. If you have any questions, ask away.
What I have learned is not to come across initially as combatative or hostile because the school will just shut right down to you. Take it slow and take it very nice with just the right amount of firmness and you will find out just how far you can get.... cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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NP40
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Member # 6711
posted
My son is tutored at home [freshman age 14]. At the initial onset of this disease when he was starting to miss classes, I e-mailed the teachers, and asked for his work. Kept them up to date on his various symptoms, until we had the definitve diagnosis. Also had the doctor write up the excuse for two weeks at a time initially, and then finally a month at a time. Once the school has this verification, they seem very willing to accomadate homebound students, at least in our district. The tutor is keeping him up on his subjects, even though there were a few days we turned the tutor away, because he was just too sick to see anyone. Still e-mail the principal and teachers about every 10 days and thank them for their cooperation, and provide a brief status report. So far, nothing but positives. Good luck. Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Congratualtions on winning the disability battle...long road I'm sure.
Thanks for the info on school districts and there support. My eight year old has lyme...born with it unfortunately and she's missed a lot too.
When you mention lyme in Colorado people look at you like your from Mars. I've had people tell me "theres no such thing as lyme here", what a crock.
Prior to her break, she missed every single week and her teacher was okay with it but felt she needed to be in the classroom more and mentioned that to me on a couple differnet occasions.
I politely told her how ill she was and went to every single doc I kind think of in this city but knew deep down she had lyme.
Cootie girl, her teacher has been teaching for 22 years so...I'm not sure what kind of reaction I'd get if I told her.
It's unfortunate that people are so uneducated about this disease.
Posts: 738 | From Colorado | Registered: Oct 2004
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posted
Cootiegirl Thank you for your suggestions,that makes alot of sense and now I won't go into the school with both guns a blazin' lol. And thank you for the pamplet info. I will get that done soon. I really,really appreciate the fact that other parents are here to talk with! It means the world to me!! Robyn
Posts: 26 | From Langley, BC, Canada | Registered: Dec 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Hi Moms..It is rough negotiating the school systems...We are doing ok, but have been told that they have basically violated my daughters rights on many occasions..Wish there was a how to book for moms dealing with lyme disease and education..The ABC Booklet isn't enough..
If she was well and it would make a difference, I would be Momma Panther..You have to decide if the battle will really be a win-win situation..
For us, my daughter is restricted in her daily attendance and isn't allowed to take any classes other than those needed for graduation...If I truly thought she would not be fatigued by the extra classes, I would be at war.. Even Dr. V.S. has writtten requesting them...It would probably be a law suit just waiting for a lawyer, but as her mom, I am also worried about her fatigue level.
It is important to have either an IEP or a 504 plan to make sure they continue to cooperate.
And you can request(in writing) to have a conference with all teachers..We have done so twice..I have put it all on the table and even used stick pins in a styrofoam ball once to show how many skin tests and insulin shots my daughter takes monthly..I had some crying by the end..There was only one teacher that never relented..I can not post on here what I think of her..Think it isn't allowed.
And try your best to get the health issues resolved by senior year..We do not have a clue what to do about next year..She hasn't even been well enought to take college boards and refuses to look at community schools or any colleges and is too sick to go away to college..
posted
My fourteen yr old daughter has lyme. She was taught at home for five months full time and then part time for another year until this year when she is back in school full time. We type up a brief background history for each of Allison's teachers. She looks so healthy now, that it is difficult to imagine how sick she was and that she may still need help. Also, we give each teacher/nurse/guidance counsler the pamphlet "The ABC's of Lyme". It has a lot of good info. for teachers. Dr J has a section in the pamphlet. We initially got it from Dr J's office. Now I just contact the Lyme Disease Association, Inc. to get more. The email address is: [email protected] They are great about sending me as many as I need. I also keep them in my office at school, I am an elementary school nurse. My daughter also has an IEP in place. Fight for an IEP if needed, not a 504. We had our daughter tested and with Dr J's help got her an IEP with very little difficulty. There have been one or two people along the way who have been difficult. But, for the most part, everyone has been very helpful. I think it is difficult for teachers to understand that one day they may be capable of doing something and the next day they can't. Good luck.
Posts: 70 | Registered: Nov 2001
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cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
Definitely check out that article by Pat Smith that I referred to, Moms. My husband took it to my son's school today, along with the letter of medical necessity. They were very appreciative of the article since our son is the lyme 'prototype/guinea pig'.
In the article they talk about how kids with lyme really defy what schools might see in other sick kids. In other words, there may be times when they feel good and schools should let them participate in social activities if they can, to minimize the isolation that comes from being home bound.
My son's school has a semi formal in a few weeks, and my husband asked about whether or not he could go to it - the school said, no problem. One of his classes is a music tech course which requires special computer/music programs. His teacher said she would come to the house and rig up our computers so he could continue the work, and he could come into school as he felt like it to do some of the work....
I guess I'm pretty much agog at how cooperative everyone is being. Several years ago we had such a horrible time getting him classified - they had a really bad special ed committee chairperson and it was a nightmare and really scared me. But they made huge changes (got ride of that person) for the better, so my confidence level in the district has increased bigtime! cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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