. This lets him know that I know what our rights are and have been validated by that federal agency, without being adversarial.My younger son has been on antibiotics for almost 1 1/2 years now. There have been several times we have had to stop them for a couple of days due to increase herxing.
What you want to do, if it is a public school is ask for a 504. This is a federal program that insures children with medical issues receive the aid that they need to be sucessful in school.
This can include everything from additional time on taking tests, to an aid being in the classroom to assist the child as well as provisions to allow for the consumption of fluids or food to aid in the treatment process.
It is a wide ranging program. The good thing about the 504 is that it will follow them from public school to public school.
I had a real easy time getting one for my son. This might not be the case for all school districts. Dr. Jones may have to write a letter.
We are almost to the point of an educ. lawyer or versed advocate..Finally got the teachers educated and on board and the principal is being miserable..
One thing that did help was to go in with my husband, he said very little but unfortunately it makes an impression and lay everything on the table..I would go with copies of as much lyme education stuff as I could..Highlight the important stuff or recopy in enlarged print so they can't miss the important stuff..Educators tend to skim.
For the first problem we had to deal with I did a presentation on diabetes and used a styrofoam ball with push pins and repeatedly put them in to represent the number of tests and shots my daughter got in a week, etc..I also had a test kit and lancetes for any of them to try..I go no takers.But it made an impression on all but 1.
Good luck..these diseases are horrible enough without the other things that happen. lymemomtooo
We have actually had a good experience w/teh 504 route. Like Lymemometoo, we are dealing with diabetes and Lyme both, so we have been doing 504's for years.
I would emphasize that I write the 504 myself, then we have a meeting in which they can amend it, and then we all sign it.
YOu don't have to "get" a 504 via tests etc. Dr. Jones' diagnosis is al you should need, and a 504 just lays out the plan for the school to follow to address this diagnosed medical issue in school.
I get ideas from an Office of Civil Rights *Federal Dept. of Ed.) booklet, but you can check all kinds of samples online, and also you can call your local Fed. Dept. of Ed. OCR to speak direcctly with someone who can hlep you. They take complaints, and will investigatetoo, but I ahve always used them for suggestions. Then I let the principal know, with a smile, that I got lots of good suggestions from OCR . This lets him know that I know what our rights are and have been validated by that federal agency, without being adversarial.
It was easier if my daughter couldn't use her wrist due to Lyme, something concrete and visible (she wore a splint). The "softer" cognitive stuff is harder to deal with and might very well be handled better w/an IEP. But it COULD be handled with a 504, which can be quick and easy to do.
I think the off and on quality of Lyme cognitive symptoms causes suspicion and misunderstandings. We went through this with our other daughter.
Good luck!
My boy has an IEP, and it is quite a process in my school district. I'd compare it to a deposition.
The hubby going is a good thing. The ones who wrote back before me, wrote about a note from Dr. Jones, that is a good idea for the school records.
Every school district has a medical doctor the district uses. You have a right to have a medical doctor at the hearing.
My son's situation changed for the better after I requested the doctor be present at the meeting. We had him conferenced in, and he was very helpful.
The school district's doctor knew of my son's doctor's, and told the school that if such and such was caused by lyme per what my son's doctor said that then it was.
The doctor's presence made a real difference. I had two disatrous IEP's prior to the one with the doctor. Not many folks request a doctor, and they must provide one in my district if you request it.
Good luck.
adjust student seating (meaning quieter place)
use simple, concise instructions
provide a peer helper
teach compensatory strategies
administer meds
monitor stress and fatigue (If your son is tired, then you should write in the plan that he may need to sleep late and come in late w/out penalty. The school should be responsible for making the work up that he missed. He might also need to take breaks in the nurses' office to rest, and, again, the tecaher/school is repsonsible for making sure he hasn't missed anything)
Modify assignments
change instructional pace
provide supervision during transitions, disruptions, filed trips
use study guides, organizing rools
provide counseling
oops- lots more- will single space!!
initiate frequent parent coommunication
establish a school/home behavior mgmt. program
provide training for staff
establish a cue between student and teacher
assign chores around room/school
modify environment to avoid distractions
have child work alone or in a study carrel
highlight important directions
provide a checklist for student , parent or
teacher to record assigments/tasks
use a timer to help w/focus
have student restate or write directions
allow student to use tapes instead of
paper
let student stand while working
inservice staff/students w/permission
develop a behavior mod. plan
supply rewards to promote good behavior
prescribe phsycial activity
determine trigger points and prevent
provide a sociogram design, such as a
circle of friends
This is for a kid without illness as a source of the ADD. There are lists for many different illnesses in this booklet.I think it sounds like the biggest thing that could help your son might be a fairly simple plan that
1) exflains that he has Lyme, what it is, and what effect it has on him at school (you can enclose Jones' info or the ABC pamphlet)
2) That he is tired and distractible at times, but not always. Whatever other cognitive or behavioral problems.
3) He may need to sleep late, and should not be considered "tardy" or be penalized, and the school should help him keep up.
4) he may need to take rest breaks in the nurses' office (this is a frequent accomodation under various illnesses)
5) that the teacher should communicate with you (daily, weekly ?) in writing, and you will work together if a plan is needed to address any problems
That's just a start...
I think it helps to make a few concessions. For instance, I didn't push the idea that if my daughter forgot her homework and left it at home, that it was because she had Lyme. I tried to sound like I had tough expectations and wasn't making excuses, and tried to stay away from fuzzy accomodation requests that would be hard to implement. Being specific just helps the school function. Sometimes hostility comes when they just can't figure out how to handle something.
Finally, we did end up meeting with a lawyer for ideas. It cost $150, well worth it, and she never came to the school, although we let the school know we had met w/her, again with a smile, for suggestions only. As a result, we had a form for the teachers that they could fill out every day (or when my daughter was not in class due to health) with work missed, homework,place to attach class notes and materials , grades missing etc. The nurse or an aide can then pick these up from the teacher(s) at the end of the day if your son has missed class time due to the need for rest.
Hope this helps. We've met this type of skepticisim but with a specific 504, they are obligated to do certain things no matter how they feel.
Good luck. Glad your husband is going- wish mine had!
Patticake I can't offer much adivce myself. My daughter is missing schola lot and is a 2nd grader.
Last year they approached me about putting her in the gifted program and I said no...glad I didn't. I contacted the school nurse which was the best thing to do becuase my daughter has missed so much school from bad herxing.
Of course they were shocked when I said lyme because there's so few cases reported of lyme in this state and doc's don't even believe it exists. (Her old pediatrician said this to me).
She said to get a note and they could possibly work on having someone come out to our home and work with her on days a new concept is introduced or when she needs help.
This nurse seemed so nice and understanding maybe you want to try that first but work on the 504 or IEP. I'm not familiar with a 504 but from what hwaltin wrote it sounds like the best route to take since your son is
such a good student.
Best of luck and let us know the outcome!
With a medical condition the 504 will carry more weight and give you more control over the situation. The school has to respond to your request. So by asking for either is all that it should take. If the school refuses, it is time to see an attorney.
By the way my other son is in the gifted program and is number one in his class go figure how this disease effects everyone so different. Actually my younger son is gifted too. It is sad to see how frustrating this disease can really be.
The real frightning thing is that at my young son's school almost 50% of the kids are diagnosed with ADD/ADHD and on medication. Makes you really think.
[This message has been edited by hwlatin (edited 14 January 2005).]
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My mom worked in LAUSD and she was involved with alot of IEP's and 504's, there are pluses and minuses on both sides.
My youngest has a one page 504 for asthma that pretty much just says that if she needs her inhaler, teachers should let her go to her lcoker, that she cna keep an inhaler in her locker, and that every once in awhile, she might come in late if she needs a nebulizer treatment, and shouldn't be penalized as tardy.
On the other hand, the diabetees 504 for my other daughter as 20+ pages long (see American Diabetes ASssoc. site for sample).
Her lyme 504 was 2 pages and was written as suggestions rather than requirements. I wrote tht the teacher's discretion could be used in evaluating which accomodiations were needed when.
Rest and snack could be agreed upon in writing and presto! that's a 504. You can keep adding on. There's no set form for a 504. But is is binding and OCR can intervene if someone in the school doesn't abide by it.
I ahve bee told by OCR that the rights exist even w/out the plan, so you can complain even if there is no 504. The 504 also helps the school avoid this by setting out in writing what they should do to meet their obligation.
So it isn't an enforcement tool intitially, but sort of a guide to working together. But later it can be used for enforcement. The school is required by law to provide one for a child w/helath needs. The statee Dept.of Ed. can tell you more about that.
That's all! It's great that some people in the school sound willing to help. Have a good weekend!
The teacher sounds like a borderline dingbat but stay cool for now. Like ducks, teachers that don't understand a particular behavior will attempt to explain it away with a psych label like ADD or a discipline problem. I'm sure in time you will bring her around and she may become your biggest champion...
cootiegirl
He was classified under OHI in 6th grade (he is now a senior) and this has turned out to be the best thing for us. He has had varying needs from year to year (even semester to semester). At one point he was in a wheelchair, another time he could not read anything w/o triggering massive headaches; sometimes he was herxing and was in bed for a week or so on pain meds... For my son the Lyme and Babesia symptoms and severity have changed over time --- unpredictable as to what may be next. Some of the time he has needed no accomodations, some of the time he has needed multiple accomodations, and some of the time he has been homebound. Notes from Dr Jones office have always been enough to get us thru each change... Do they have a preference for 504 vs OHI? I am not trying to scare you, just want you to find what will work best for your son.
I have listed some quotes from articles below which delineate some of the differences between 504 and Special Ed OHI. My personal opinion is that OHI offers the most protection for your child and you. I am not sure, but I also think that you have more leverage with OHI.
Best wishes!!
http://www.chrisdendy.com/rights.htm
OHI "means having limited strength, vitality, or alertness due to chronic or acute health problems that adversely affect a student's educational performance."
http://www.nldline.com/iep_vs_504.htm
Issues of Discipline
If your child simply has a 504 Plan and this child misbehaves in school, the school may decide that the child's behavior is not related to the disability and the child can be expelled from school permanently. Under IDEA the child has the right to a fair and appropriate education, even if expelled from school. Section 504 and ADA do not provide these protections. This can be particularly problematic for children with TS and associated disorders.
Procedural Protections
Section 504 does not include a clearly established "Prior Written Notice" requirement. In contrast, IDEA includes an elaborate system of procedural safeguards designed to protect the child and parents. These safeguards include written notice before any change of placement and the right to an independent educational evaluation at public expense. Section 504 does not include these protections.
http://www.sandrarief.com/tips/tips_edrights.htm
What Both Laws Have in Common:
Require school districts to provide FAPE in the LRE
Provision of supports (adaptations / accommodations / modifications) to enable the student to participate and learn in the general education program
Provide opportunity for student to participate in extracurricular and non-academic activities
Nondiscriminatory evaluation by the school district
Procedural due process
Which One is Right for My Child - A 504 Plan or an IEP?
This is a decision that the team (parents and school personnel) must make considering eligibility criteria and the specific needs of the individual student. For students with ADHD who have more significant school difficulties, IDEA is usually preferable because:
IEPs provide more protections (procedural safeguards, monitoring, and regulations) with regard to evaluation, frequency of review, parent participation, disciplinary actions, and other factors
Specific goals and short term objectives are a key component of the plan, and regularly monitored for progress
There is a much wider range of program options, services and supports available
IDEA provides funding for programs/services (Section 504 is non-funded)
For students who have milder impairments, and don't need special education, a 504 Plan is a faster, easier procedure for obtaining accommodations and supports. They can be very effective for those students whose educational needs can be addressed through adjustments, modifications, and accommodations in the general curriculum/classroom.
It sounds like for my son a 504 might be the way to start for now as he is still getting acceptional grades and gets along well in the classroom. He just seems to zone out, not hear directions, and can be impulsive like talk when he isnt supposed to. THe teacher happens to have a VERY LOW tolerence for his up and down behavior. THat is why she thinks he is doing all of this "selective listening" on purpose. I tried to tell her that lyme is like that but she does not believe me. The other lady that we spoke to seems more open to helping with his medical needs. I guess I will wait unitl Thursday and see what they come up with and then can I start with a 504 and if that isnt working or effective than I can talk about the other options? or do I have to go for the others immediately?
Thanks a ton
Patti
Sorry to hear your son has Lyme and that the school isn't being helpful. As luck would have it, I had been homeschooling my son ( and later my daughter) for a year before he was diagnosed with lyme...
So when he became sick, I was able to continue homeschooling him and work around his illness...
I homeschooled my son for 3 years and my daughter for 1 year. This year my husband and I decided to send the kids to public school.
I was very worried about how they would handle my children's illness and was pleasantly surprised when the school nurse called Dr.Jones and talked with him about lyme.
She was willing to work out a 504 plan and even asked Dr.Jones for educational material so she could educate her staff.
Luckily both my children are getting better and so far we haven't had to implement the 504 plan, but it is so nice knowing that it is set in place if one of them should have a relapse or set back.
My advice would be to have Dr.Jones contact the school and get the school nurse involved in your child's education plan.
I'm not sure if the laws are the same in all states, but one of the things I was concerned about was that my son would get tired and need a break..the nurse worked into our plan that if my son needed a break, he was allowed to go to the nurses office to lay down...
So maybe you and your child's teacher can work out a similar plan with your child's pediatrician, Dr.Jones, the school nurse and school board.
And don't be afraid to step on this teachers toes in order to get the help you need. I would talk to the principal and the school board and bring up your concerns about the way she handled this situation.
Don't worry about hurting her feelings...for after all she will only be your child's teacher for about 9 months out of his life..you are his mom and need to do what you think is best.
Trust your instincts and follow them..if there is one thing I have learned from having two children with lyme, it's that you need to trust your instincts!
GOOD LUCK!!
Keeping you and your son in my thoughts and prayers..
~LymeBrat