posted
For the experience lyme parents out there -
What information do you give to the school?
How do you back it up?
There is such a small amount of information about chronic lyme and children out there that I'm having a hard time finding anything to give to the school.
Any advice would be SO appreciated!!
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
| IP: Logged |
posted
I sent my daughter's principal a copy of Cure Unknown - but have no idea if he read it. He is no longer questioning why she has been on homebound status, though. I also gave the homebound teacher a copy so she could better understand the cognitive issues and ups and downs. Cure Unknown recently came out in paperback.
[ 11-15-2011, 10:24 AM: Message edited by: Kathryn ]
Posts: 78 | From South | Registered: Aug 2008
| IP: Logged |
bettyg
Unregistered
posted
kelly, check your pms ... sending you some links i have on info on kids/school, etc.
also read tracy9's MEDICAL post on updating us on cody!! you need to be aware of that too. hugs/kisses
IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I believe the ILADS website has brochures you can print off and can give to the schools. One of the brochures is very specific to kids. I gave them to my school and announced that I wouldn't sign any permission slip allowing my children to go on an off campus trip that involved woods, hiking, or tall grass.
Yes, they all know which mother I am, but I don't care.
When one school at a previous location did not give my daughter extra help, I happened upon a web site discussing a lawsuit by a parent against a school that did not recognize lyme. I shared that with the principal of my daughter's middle school, and then got good results.
Can't find that web site now, four years later, but this is a good discussion of approaching your child's needs.
Please note that the PAPERBACK UPDATE of Cure Unknown has an expanded section on the neurocognitive issues that can impact students in school because I have added an interview with neuropsychologist Leo Shea. He is very specific and nuanced in his explanations, touching, for instance, on memory issues, on how Lyme fatigue may be mistaken for ADHD, and how the ways such people should be accommodated, among other things. I believe this can be an added help in such situations.
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
What age/grade is your child?
You may be better off to steer clear of mentioning Lyme disease.
NEVER give your written permission for the school to have your child's private HIPPA-protected medical records. Their doctors know nothing about Lyme disease, the tests, the treatment, etc...
Have your child's physician write a letter documenting your child's physical/mental limitations. Ask the physician to give any detailed recommendations he may suggest to help your child overcome the limitations.
eg insomnia...take more academically challenging classes late morning to afternoon; allow the child a nap in a place away from sick students; allow student to have an extra study hall
fatigue, weakness, decreased stamina...assign a note-taker, have reduced PE requirements, allow student to have an extra set of textbooks at home; reduce the student's requirements for homework (10 vs 20 problems per assignment)
headaches...allow student to sit in the darkest or quietest part of the classroom; allow student to wear sunglasses at school
difficulty concentrating...allow student to sit in the front of the class; give student a copy of the teacher's outline, or allow student to copy another student's notes each day, or when he's sick.
memory problems...allow student to take multiple choice tests, reduce the number of items on a test
digestive disturbances...allow your child to carry a water bottle
frequent abscences...have the teacher send a note home with assignments each time your child misses school.
Has your child had a neuropsychological exam? This test will give objective (concrete) evidence of the neuro problems common to many students with Lyme. A Lyme literate examiner is essential for any deficits to be correctly identified and diagnosed.
Does your child need any special acommodations or services? a 504 or an IEP?
Are you having a problem with attendance requirements? It's not unusual for schools to accuse a student of truancy due to a misunderstood disease. In addition, it's not unusual for schools to accuse the mother of Munchausen's by proxy, especially where Lyme is concerned. Be very careful. Document everything you say and do to create a paper trail to cover yourself if these accusations ever come up.
Look up my topics posted in medical starting in Sept. 2006.
If you ever feel questioned by the school, get an attorney, an education attorney, or a special education attorney. They'll save you a lot of grief.
Contact your local autism support group to find an advocate that knows the laws for your state.
Contact your state's special education parent education organization. You need to know your rights before you have the school social worker or truancy officer knocking on your door.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
bettyg
Unregistered
posted
hshbmom, i've sent her your earlier threads on this subject by pm. hugs
IP: Logged |
posted
Kelly, my son is 7 years old in 2nd grade. The school is in the process evaluating him for learning disabilities now. He is having great difficulties with reading, some problems with math & concentration/focus. He's not disruptive, just has problems staying on task & often just stares. Has already been tested for seizures etc.
School is aware that he has chronic/neuro lyme. I had to make them aware of it at the end of kindergarten when he began having serious visual issues. The school is aware that he is being treated by a LLMD in CT, but I have given them nothing official.
His teacher last year had a pretty good understanding of lyme, this year his teacher hsa no knowledge. A bit frustrating. The nurse is aware of the meds he's on & his other physical issues.
Am a bit nervous about an upcoming meeting in Dec., that will involve 6 teachers/specialist/etc from school. A bit overwhelmed by all the paperwork & questionaires that have come home, some mention legal advice.... I personally don't feel the need to be represented in that way yet.
I do feel that so far, everyone has my son's best interest at heart. Hoping that we can work together to help him succeed to the best of his ability.
He is already in their title I program for reading, math and he receives help with speech. I DO NOT want him labeled, but definitely believe he will benefit from any extra help they will offer.
(My little one has had to go to summer school for the past two years for extra help) He doesn't miss much school on a regular basis.....
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
kelly - I'm originally from Texas. My family contracted the disease here. Except for those in this State who know they have Lyme and the few docs who treat it, the school systems do NOT understand or believe in it and you will end up wading knee deep in you-know-what if you put it in your child's records.
In a way, I feel odd telling you to keep quiet, but this kind of info could not only subject you to questioning, but your child to being harrassed by nay-saying school nurses or school authorities interrogating your child as to whether you're forcing him to take unnecessary medicine(s). (Think someone mentioned Munch....sp.)
Please understand that I love Texas, but also know it has it's limits (bite my tongue!) and am ashamed of the way the Tx Medical Board has responded to (or not) the Lyme situation here.
Please keep your mouth shut! (I mean this in a nice tone...)
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
| IP: Logged |
posted
I just had a team meeting with my son's school and the first thing one of the teachers said was, "I don't want to put you on the defensive, but our social worker found out that chronic lyme isn't a documentable disability. Are we supposed to just trust the parents here?"
So, I gave that teacher a copy of Under Our Skin and explained to him a bit about IDSA. The point was moot, however, because this disability, regardless what we name it, is protected, federally under a 504. I would be happy to send you a copy of mine, specific to lyme, and there are other moms/dads out there who will do the same.
Posts: 564 | From Tick Hell | Registered: Oct 2008
| IP: Logged |
posted
Honestly, I don't care if the school believes in chronc/neuro lyme or not, if they do the testing and he qualifies for help, I want him to receive it no matter the reason for his current learning problems. They can call it what they want.
Personally, I'm not keeping my mouth shut. I'm a great Mom who's doing the best she can with her kids. I think silence just breeds more ignorance when it comes to lyme.
IMO, it's time to quit hiding. So many people are suffering....
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
All are entitled to an opinion here. The fact is that Lyme is viewed differently in the NE US than it is in TX and regardless of federal laws, there will likely be a hassle.
Just wanting kelly to be prepared.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
| IP: Logged |
posted
Yes Ping.... exactly. Was just stating my opinion. Although I live in an edemic area, it's amazing how many people have no clue about lyme.
People need to start talking.... The silence is making people sicker.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Songbird, that's the attitude I had. I had a mountain of medical evidence and set out to educate the school. It was turned on me and took almost a year and a half to extricate our family from their involvement.
The school & court ignored our evidence until I got a lawyer. That's the only thing that got them off our back. We had 3 lawyers: family law, education, and special education attorneys. Each attorney had their own area of expertise.
The upcoming meeting with the student committee can be very intimidating. There could be 8-12 people in future meetings. Be sure to take some support for yourself...your husband, a trusted friend, and a special ed or autism advocate who knows the law and how to handle the school.
The ignorance about chronic Lyme is just as bad in NJ and PA as it is in TX and AL.
Peacemamma, it really doesn't matter if Lyme isn't a documented disability. Your resaponsibility (the child's physician) is to provide documentation of your child's limitations...physical or whatever. The school's responsibility is to decide what services or accommodations can be used to overcome those limitations.
Parents, you have the right to have testing by a Lyme literate examiner (especially needed for a neuropsych exam) or any examiner of your choice, rather than the state paid examiner. The school is legally obligated to consider any reports you provide.
You can probably find your state's special ed law on the internet. Find your state education web site, then look for the special ed section. This will tell you the time frames and other important information you need to become familiar with.
You'll be amazed how many of these excuses you may hear in your student committee meetings.
Prepare for one of these meetings as an attorney would prepare for a trial. Know what you want to accomplish in the meeting. Have your meeting goals written down and have evidence to support your requests.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Kelly, the school can reduce your child's requirements in addition to providing a tutor to help your child catch up with essential subjects.
Your child is NOT required to attend Saturday school with delinquent students. He doesn't need punished; he's ill.
This is where you need an advocate with you at every meeting with the school. They'll stop these blatant lies and veiled threats when they know you have an educated advocate. The school will run over parents who do not know their laws and rights.
You should have quietly asked them your question about whether they require students with cancer to attend Saturday school. You know they wouldn't! They're trying to get you to back down through intimidation. Be prepared; that doesn't sound good.
The school's job is not to second guess your child's diagnosis or treatment. Their nurses & physicians are not experts in Lyme disease. This should be a closed topic. The school's job is to decide the best way to educate your child, that's all.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
posted
"The school's job is not to second guess your child's diagnosis or treatment. Their nurses & physicians are not experts in Lyme disease. This should be a closed topic. The school's job is to decide the best way to educate your child, that's all."
This is EXACTLY my feeling & it's how I plan on dealing with the meeting in Dec.
He has lyme, he's being treated. Is it the cause of his learning disability? Maybe, maybe not. Closed topic, now lets see how we can help him.
I don't care if they do or don't believe in chronic lyme, the fact is, he does have lyme disease that is well documented. It's not up for debate.
Whether or not they want to aknowledge it's the reasons for his current learning issues, not important to me. I won't push the issue either.
At this point does it really matter if his problems are related to lyme or maybe something biological?
The only thing I care about is my son gets help if he qualifies after they test him.
I'll update after my meeting. My husband will also be there.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |
posted
My son's dr did write a letter for me to give to the school.
Basically, it says that he is under her care for Lyme Disease and that it is a chronic condition. She specifically mentioned that symptoms can include fatigue, poor concentration and joint pain.
She also asked that his absences be excused, as there is no way to tell when his symptoms will occur.
As far as his performance in school, he seems to be doing okay, not great, but okay.
He's a whiz in math, but falls behind in reading.
He has some behavior issues, mostly from forgetting what was said or not being able to concentrate.
At this point, I'm wondering if it's best to give them the letter and see what happens.
He is receiving extra help in reading, in a small group classroom setting.
No one has mentioned testing for learning disabilities.
I hate feeling so lost!
Thanks for all of your help - I have a lot of research to do this weekend.
Pam - I did order the paperback; it should be here tomorrow.
hshbmom - I've looked up a lot of your old posts, and even bookmarked them to read this weekend. Thanks so much.
songbird - please let me know how your meeting goes!
ping - I totally get your point. I'm trying to be as careful as possible.
optimistick - thanks so much for your tips!
I can't believe how incredible you all are. Thanks from the bottom of my heart.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
| IP: Logged |
posted
Just FYI I did everything I could and lost my children to my abusive ex. Too many against me and now she is chronically having psychological and physical issues and in a special school I am 4 yrs supervised visits only 1 hr a week. I cant get any help at all and its too late for my kids and me.
Posts: 61 | From wilton | Registered: Mar 2010
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
UGGGGGGGGGGGG!!!!!!!! This stinks to high heaven!!! I believe I remember your case. We have too many and it is sickening, unfair ... and I better stop there or I'll say something not ready for primetime.
Is there anything we can do dear nursejed? My heart breaks for you and the children!
If others are reading this.. here is a site with children/school issue links. Not helpful now, but in the event this happens to another family, it is offered.
-------------------- Ann-OH Posts: 1690 | From Ohio | Registered: Aug 2014
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
my kids are older now- highschool and up, and mostly able to do well in school, so I don't say too much, but I will if needed.
now, when they were in grade school or middle school they were not dx yet with lyme, but they were dx with learning disabilities.
I was a huge advocate for them on that, and I would be just the same with lyme if that was the case back then.
I would give all kinds of printed info. have meetings, talk with teachers, whatever it took. this being said , it would all depend on what the child needs help with- that would determine, for me, how much I need to disclose.
I find myself wanting to tell everyone I meet about lyme from my personal story. I am ready to write a book, to explode the facts, etc to anyone willing to listen. but sadly, like LDs (learning disabilities) , there will always be people that dont' want to change. no matter who it affects. teachers included, and most teachers and people that run the schools are too caught up in being "company players" to do anything that isn't for the general public- meaning, the REST of the students.
so..... maybe you should look into getting an IEP for a physical handicap? I would.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3585 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
hugs/kisses
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic