Topic: Need info on pediatric late stage LD for school meeting..HELP
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
My son's school was refusing to have him tested for learning disorders and dyslexia until he had been in the school for a year. Now they finally looked at his records again and since he has LD they think he might qualify for a 504 program.
The school councelor called me today and I have a meeting with her, his teacher, the principal and some other people on Friday the 18th. They want me to bring in proof that he has LD, which I can do, but I need some things...some hard evidence from doctors and whatnot...
I need to show them that without a doubt late stage Lyme can cause his learning problems and qualify him for this program.
He is in 3rd grade but only has the reading level of a 1st grader. I'm convinced that he is dyslexic and so is his teacher.
Sorry for rambling...can anyone help me?
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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My son is dyslexic. I was afraid he would never learn to read or write. By the end of first grade my son's self-esteem was being destroyed because even though he was very smart he couldn't do the things that all of the other kids around him were doing. Through a private program, he eventually not only learned to read but to actually enjoy reading. Today he takes advanced placement classes in high school.
After the "testing" through the schools failed to find a real issue, I realized that if I relied on the schools my son would give up and never learn. At the end of his second grade, I went outside of the school system (helped prepare me for Lyme disease) to get help.
I read the book Gift of Dyslexia and then found a provider through the Davis website listed below. It was the best investment I ever made. My son did finally qualify for a 504 in fourth grade which is typical for dyslexics in the school system. Too little, too late. At that time, he was starting to take off in his reading and writing but we did use the 504 for extra test taking time and in middle school so he could use a tablet to type up his notes.
(Btw, Some people do the program on their own without the help of a Davis provider or they get family members to help) The Gift of Dyslexia http://www.dyslexia.com/
Another great book is: Upside Down Brilliance the Visual Spatial Learner.
Posts: 984 | From San Diego | Registered: Nov 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Aww, cute graemlin, Lymetoo...thanks!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I don't think that refusing to test for a year is legal. Yeiks!
I have a child on an IEP due to Lyme disease. It was a fight to get him what he needed.
An advocate may be able to help you through the process, if you are finding you can't do it alone.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Tincup
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Learning disorders and dyslexia can be a result of inner / middle ear issues (among other things).
Even if you prove he has lyme disease, it may be symptoms that can help the most. He really need not have the exact cause of symptoms, exactly, but a doctor saying that he has this or that symptom and needs accommodation for that.
Vestibular relates to the inner ear and middle ear systems.
Just about every one of the general vestibular symptoms is also a symptom of lyme. Lyme can cause any of these, as can other illness or injuries - or structural problems. There may be no clear cut reason for some, for some people.
It may be easier to use this set of symptoms. I find it easier to explain to a lot of people that such symptoms can cause fatigue, too.
Your son's LLMD can confer for what may seem appropriate. Good luck.
Hyperacusis Network -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lyme in Putnam
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posted
Pm sent
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
If a learning disability is expected because of disease, then he may qualify for an IEP under OHI- or other health impaired. My son didn't show so much LD in his testing because they broke up the test and it didn't have long reading passages. It didn't represent his day at school and the issues he has. The teachers wrote up what they saw and the doctor wrote a letter explaining my son's symptoms. Together with his low processessing speed, 30 points below his IQ, he qualified.
Qualification is based on a multi-factored evaluation and not just one test.
As a parent under IDEA, you have the right to request testing if you suspect a learning disability. Put it in writing and send it to the director of special education. They have to respond to you within so many days. If they deny testing, they have to legally tell you why.
I found a lot of good resources when I googled chronic fatigue and school IEP's/504's. There were some active mothers who put together helpful information that applies to our Lyme kids with learning issues.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
You guys are great. Sorry it's taken me this long to get back...not feeling so hot myself.
I'll check my PMs in the morning and I just wanted to say how much I appreciate the responses.
From my understanding IEPs are different in Texas. I have a lot of reading up to do but I did request an IEP meeting at the beginning of the year and..nothing!
I don't like teachers and school officials being in my business. I am worried that something like this might tell them they can force me to medicate my child (he also has ADHD but is not treated for it and I've read about kids being taken from their parents for refusint to medicate them)
My son has not seen an LLMD in almost a year and is not on abx. Every abx he took caused such severe reactions I thought he was going to hurt himself or someone else.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
Icky--I can respect your fears about the school having the information.
To give you the "other side," as someone who has been in many IEP and 504 meetings, I can tell you that your school is only asking for information that is required by federal law in terms of qualifying a student.
Documentation of the other health impairment or another disability is mandatory. ADHD can sometimes qualify a student, depending on the presentation and impact on learning.
The educational team needs any hard info you can give them to determine whether the Lyme is substantially impacting a major life activity, which is learning in this case. If they have no idea about Lyme, it is probably going to take some advocacy on your part. They need to make sure it is the Lyme, not some other issue, and that can be a hard place to be for a teacher who does not know anything about the disease.
I'm certainly not defending any actions (or inactions) that have been taken so far, I've just been in that seat in terms of other situations about which I had no knowledge, and it can be very difficult.
In Vermont, we (in education) certainly don't push to have the department of children and families involved for refusing ADHD medicine. Lifesaving medicines, maybe, but not ADHD meds. I can't speak for Texas, but I hope you can enter this meeting feeling support, rather than fear.
KT is right--you have a right to request the testing. I'm not sure why the response about 1 year, since I have never heard of that happening. Parental rights are protected by federal law in this case, not Texas law.
In terms of dyslexia, believe it or not, it is not considered a specific learning disability under IEP regulations, which I don't get at all. The testing that is used for LD determinations does not evaluate for dyslexia. That is a different set of testing, and it usually leads to some other kind of support. We have been talking about this lately at school, and it is a crazy loophole in the IEP regulations.
I wish you the best for your child. Lyme is hard enough, and the impacts on education must be challenging for all of you.
Posts: 447 | From Vermont | Registered: Jan 2011
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momlyme
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Member # 27775
posted
IckyTicky... I am worried.
Dyslexia, reading problems and the strong negative reaction to antibiotics are screaming mold to me. I watched my son go down hill with lyme treatment and that was because we had toxic mold behind our walls. It was not visible. It did not smell.
Not to say your son does not have Lyme... but that mold may be part of the bigger picture.
My son was very sick and we tried abx for 6 months... and he only got worse.
Getting out of the house was our first step toward health. Dyslexia disappeared... so did MANY other symptoms. He is nearly 100% now.
My son could not attend one day of 6th grade (he had a 504 plan and a tutor at home) He just finished the first quarter and he has a 96+% average in all his classes. He ran track and was on the golf team, he is president of his class and enjoying life.
This is a kid that went from bed to recliner to wheel chair... what a difference getting away from the mold made for us!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Heather, that is WONDERFUL news!! No wonder I've missed you here - you're enjoying life again! So happy to hear it!
-------------------- "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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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Nice to know I've been missed, 17hens!
That also tells me I haven't been checking in enough to help others!
I was so blessed to find this site and everyone here helped me put the pieces of the puzzle together. I try to come back and pay it forward as often as I can.
I have lyme, bartonella and babesia too and have discovered this since we discovered the mold.
It's been 7 months... and we are still healing... attempting to fix the house we lived in, looking for a safe place to live... and still living in a motel room until that happens.
And yes, thanks to good health, we are able to enjoy life again!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
If you ask for a meeting ask for an IAT (interventioan assistance team) meeting or find out your school's name for it. You requested an IEP meeting and your son isn't on an IEP. Maybe this is why they didn't respond. They could have kindly corrected you.
Have you gone in to speak with the school counselor or principal? Maybe a phone call asking how to get started sharing your concerns and working towards getting help for your child would be best.
My son is ADHD and the school has never pressured me to do anything. He is on adderall XR.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Do you have a county program that could assist you? In my county it is the ability center. They have advocates that can take you through the process.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Do you have a county program that could assist you? In my county it is the ability center. They have advocates that can take you through the process.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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