hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
It's been 18 long months, but we've finally been declared not guilty of truancy.
The primary problem is the school doesn't understand this disease. This misunderstanding creates much mistrust between the school and affected families.
If you're having problems with your school district get an attorney sooner than later. You may need a family court attorney, education attorney, or a special education attorney.
An advocate is also invaluable when you have to go through the 504 or special education maze. It's about as difficult as dealing with Lyme disease and insurance companies.
One of the best things about this verdict is that the school will be responsible for paying my attorney fees. I hope this is correct.
[ 08. November 2008, 05:43 PM: Message edited by: hshbmom ]
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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bettyg
Unregistered
posted
CONGRATULATIONS MOM FOR ALL THIS BLOOD, SWEAT, TEARS, STRESS, etc. that you had to go thru to jump thru all their baskets to WIN this.
vindication is SCHOOL PAYING ATTORNEY BILL! yippee!
YOU have educated so many parents on here with your personal experiences and the advise you got from other parents who educated you also!!! a teamwork win!
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i know what you must have gone through over all of this time, kudos to you for being strong and steady and providing accurate information.
that is not easy to do when you are a parent and your child's care and welfare is being "governed" by oversight that only seems to work against supporting the child's needs.
you and your family should only be being supported by the school for your efforts.
great job, mom!!!!!!!!!!!!!!!!!!!!!!!
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Congrats, Mom -- wow, 20 months, that must have been rough. You should never have had to go through that. But sadly, all too many moms with Lyme kids have been suspected of abuse or neglect by schools that would rather blame the parent than put money toward services.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Dear Betty, Mo, and Shaz,
Thanks for the warm fuzzies. It feels good!
Thanks for all YOUR advice in how to deal with this situation.
[ 08. November 2008, 05:44 PM: Message edited by: hshbmom ]
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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We have our first 504 meeting at my daughter's new school next week. We've been trying to get it set up since August. We are quite nervous, please cross fingers for us - principal is known as an attendance freak.
Again, congrats! Suzi
Posts: 260 | From Virginia | Registered: Jul 2004
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Suzi-Q,
Does your child have Lyme disease or co-infections?
Be sure to take along a friend as a witness, and tape record the meeting. You have the right to have this friend, to record the meeting, or to have someone present by phone..using the speaker phone option.
Focus on your child's limitations and what can be done to help your child overcome those limitations. Do not focus on Lyme disease. Focus on your child's memory problems, or frequent stomach aches, or other symptoms.
You can tell them what you think your child's strengths and weaknesses are.
DO NOT sign a release giving the school persmission to have your medical records regardless of what they tell you. Your child's medical records are protected by HIPPA law.
You don't have to sign any paper at that meeting. Take everything home and give it to your attorney before signing anything. You may need to tweak their form before signing it. Tell them you need some time to think about this and to discuss it with your husband or attorney.
Be sure to ask for a copy of the notes from the person who conducts the meeting. Let this person know before the meeting that you'll want a copy of the notes and that you'll be bringing a friend with you.
Don't leave the meeting without these notes. They may send you the final copy later, but don't leave without their notes. These days, when most paperwork is done on the computer, this document can be printed out as soon as the meeting is over so you won't have to wait for the final paperwork.
Sit in the middle, next to the person conducting the meeting so you can hear any side conversation and see what's being written. There will be a bunch of people there, so don't be surprised or intimidated.
After the meeting, be sure to send a letter stating any items you disagree with.
Did you read Mo's post "IEP meeting come-backs" in General? Some people will be truly concerned for your child, but others may lie to you and brush off your concerns about your daughter. They may try to intimidate you into not pursuing further evaluation or services.
If you have a doctor's letter take it with you. Get one before the meeting if possible. This powerful document will make it more difficult for them to ignore your request.
Have the doctor state that your child has been under his care since ___, that she has a diagnosis of ___, her limitations are ______, and his statement that he recommends she be given a complete educational evaluation.
The physician can give some prognosis on your child's condition, and state that she will need services until the end of the school year, or until further notice.
It's good to have the services and not need or use them, than the opposite.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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We fought with the school about Jordan from 3rd to 7th grade. I homeschooled him part of one year and most of 6th grade.
The reason the school wanted to kick him out was the letter from his LLMD was not from an in-state doctor. We live in MN and there wasn't any LLMDs at that time.
When Jordan was in 7th grade, I contacted an education attorney I found on Wrights Law. She told told me the doctor only had to be licensed in the state he practices.
I called the Dept of Ed and the person I talked to was so angry about the way Jordan had been treated. She called the Director of Special Ed for our school district to make sure he was aware of this. The school has been cooperative since. Jordan is now in 12th grade. Jordan has an IEP.
I have previously called the Dept of Ed and a parent advocacy group. Neither one could give me an answer, they said it was a "grey" area. It was not, it's clearly written in the law.
For some reason, the school didn't think he was sick. Jordan's homebound teacher convinced the school he was.
It's been awhile for us but those old feelings come back when I read about your battles with the school.
Peggy
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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posted
Congratulations I'm shocked that the school put you through that for 18 months.
My teenage daughter was homebound most of highschool until graduation, thankfully our school district was more than accommodating, we were given a private tutor and all they were interested in was a monthly "progress report" from her doctor, basically saying she couldn't return to school yet.
I realize it costs the school lots of $$$ to make these accommodations and I think if they feel the child has even the slightest chance of being able to possibly attend school...they don't want to spend the money. Good for you for fighting for your child! Posts: 43 | From NY | Registered: Oct 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
So glad the battle is over and now you can focus on getting appropriate conditions so she is able to learn as much as possible, and within her abilities.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Thanks so much for the insights into the 504 process. The administration at her school in VA were so easy to work with, but we are worried about what we might have to deal with here in SC. We haven't exactly been getting any warm fuzzies.
We had a great letter sent to the school at the beginning of Oct. by our LLMD. She listed Dd's diagnosis: borrelia burgdoferi and bartonella, immune related thyroid disease, inflammatory bowel disorder, cyclic vomiting syndrome, neural mediated hypotension, polycystic ovarian syndrome and menorraghia. She listed many of the limitations she has and the accommodations she needs. We also have a short note from her cardiologist. We probably need to go ahead and place her back on homebound. Every year that seems to happen after a few weeks in school. A bad sinus infection the second week of school really set her back this year. Had it for a month, then the cyclic vomiting set back in, so she hasn't been making it to school at all lately.
Sometimes we feel so discouraged and she has gotten very depressed again. She gets very overwhelmed by the school work and the fact that she gets so behind. If we try to talk to her about school, it seems to make things worse, so we are backing off for the moment. Hopefully, things will be okay with the meeting tomorrow and her stress will lighten a little. She is very nervous because of the negative feedback she has been getting from the guidance counselor.
Anyway, thanks for your words. Suzi
Posts: 260 | From Virginia | Registered: Jul 2004
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Suzi, have a great meeting tomorrow. Keep us posted.
It sounds like your LLMD wrote a perfect letter.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Shosty
Unregistered
posted
I disagree with the advice about a first meeting. It works much better to show up with a smile, start the meeting off with a joke, generally act affable, but in control and "professional." Like you are collegues dealing with a problem you have in common. Tape recorder and witness are a bad idea, at this stage, (unless you bring someone who sort of belongs there and is a "support," not a witness).
You can write your own 504 plan and bring it in to the meeting. Our schools have loved it when we did this. It saved them work and rescued them from uncertainty. Without fail, they have signed it in the first meeting. But, this does require that you bring an MD note.
You can see a lawyer first, and let it drop during your school meeting, that you got this or that suggestion from your attorney. Emphasize somehow that you saw this lawyer for suggestions, not to be adversarial, and how helpful the suggestions were. They will get the point that you are capable of using a lawyer, but you will not trigger defensive hostility from them.
If things go wrong, of course you can then pursue things with an attorney or advocate.
I also think it helps to be reasonable, and show a willingness to work with them, even ease the burden on them. Acting angry and making rigid demands does not work. Being cooperative does, at least at first, when you give them a chance.
We never asked for tutors. We did it ourselves, with info on what was going on in class, from the teachers. This earned us a huge amount of good will and cooperation, because we did not actually cost the school anything, other than a little extra effort.
We did see a lawyer eventually, and started a system to maximize our daughter's attendance and ability to keep up. Every day, no matter what, the teachers filled out a sheet supplied by the school nurse (written by me) with info on work done in class, homework, missing grades, any worksheets or written materials attached. Tests and quizzes were sent home. Occasionally, a sped person made an extra copy of class notes for her, but generally she did without. She could get work done on her own time table.
Our daughter was very sick for 6 years,and still has some problems. Some years, she had cognitive issues, as well as physical. Along with Lyme, she has 3 other conditions. She is currently at an Ivy League college and happy, although some of her issues are indeed chronic.
Making the school aware of your desire to keep your child's life as normal as possible, and even maximize involvement in school, can avoid big problems for your family. Ask them for help, rather than telling them what to do, is a good strategy (unless trouble occurs, of course).
Schools exhibit "institutional behavior." The schools' main goal, like any organism, is self-protection and survival. Empathy and understanding are rarely motives for their behavior. Asking for things that cost money or effort or that are hard for them to figure out how to do, can cause adversarial situations. Make it easy on them. Come in with a clear plan, documented by an MD, and work with them. If this does not work, you can fight.
Truancy issues, DSS charges of neglect and so on, loom for all of us. The more anger and hostility you show, the worse these threats may be. This does not mean not getting services for your child. But it does mean being smart about it.
p.s. editing to clarify that our daughter was in an out of school as needed, within a school day as well as in general...so, she would go to the class she most needed to go to in a day, come home, then go back if she could for something else.
One important note was that we enlisted the school's undertanding that sometimes something like a band rehearsal was more important to her emotionally than a class, so that they would allow her to do after-school activities at times, even if she had not been in school. We used their own psychobabble to get this permission: about developmental needs, socialization etc., in the plan. This worked, as long as she/we showed good efforts to get her work done.
posted
Extra textboks for home, too. Both so they can be used easily if the child goes in and out of school, and to avoid the weight of carrying them. Someone just reminded me...
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Thanks for the well wishes hshbmom and for the advice Shosty. Meeting is at 2:30, will give an update later. Thanks! Suzi Posts: 260 | From Virginia | Registered: Jul 2004
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posted
The 504 meeting went well. The members of the team were very empathetic and agreed with all of the accommodations that we asked for and even added a couple of very good suggestions of their own. Also, will be adding homebound instruction. We were relieved by the outcome.
Posts: 260 | From Virginia | Registered: Jul 2004
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Shosty
Unregistered
posted
Great!
It really sounded like your child's LLMD (and cardiologist) did a great job with the letter, and that must have been helpful. Some LLMD's, and certainly the one we have, seem very reluctant to provide such detailed letters. Ours likes to stay under the institutional radar, frankly.
I don't know how old your child is, but if she is 8 or under, and having cyclic vomiting, has anyone checked her blood sugars?or ketones? Does the vomiting only occur in the mornings? Just a long shot here, but one time I mentioned this to a family and the kid actually had the blood sugar problem I had in mind, called ketotic hypoglycemia (two of my kids had it). Again, sorry if this is way off!
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I'm shocked that the school put you through that for 18 months.
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