posted
We have a 14 yr old son who has had Lyme for 4 years. In additional to cranial nerve and CNS involvement he has significant mood and concentration impairment. He has fallen significantly behind in schoolwork. He is in his first year of high school. He is subject to severe moods swings and becomes violent when overwhelmed.
Medically, he is now being treated by a LLMD. An Igenex Western Blot done in July was strongly positive: 7 IgG bands and 4 IgM bands. He has been on a high dose of oral antibiotics (1 g Ceftin twice daily) for six weeks. We chose to go with oral antibiotics as he is in marching band and this is the only class that seems to matter to him. He would not have been able to perform on snare drum with a PICC line. We will most likely go to the PICC after marching season ends in late October. Marching band is considered a competitive activity and he must meet academic standards in order to participate. Four weeks into the school year he has already fallen behind to the point where his marching season is in jeopardy. If he is unable to participate in this one activity that matters to him I fear he will be overwhelmed by depression. He was prescribed prozac by a different doc who blew off our Lyme concerns. We did not start the prozac because of concern with his violent behavior and the possibility of the prozac side effects increasing his violence.
We requested an IEP (Individualized Education Plan) for him last year and were denied. Has anyone on this forum successfully implemented an IEP for their child with Lyme? We need suggestions for dealing with the school district and would appreciate any suggestions you can make.
Posts: 3 | From Wisconsin | Registered: Sep 2006
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posted
My son was classified as Other Health Impaired with Lyme disease. Dr Jones had written a letter of medical necessity --- Tim has had diseminated Lyme with brain involvement, and Babesia.
Because the schools both in NJ and now TX were clueless, I was the expert on what we needed. My son was homebound for quite a while in NJ and sporatically in TX.
At one point he even received permission to wear sunglasses in his classrooms because at that time he was very sensitive to light... made his headaches worse.
Not being able to be around his peers much during Jr High has had a definite impact on my son's social skills. The school was willing to even have him come half days here in TX ... would arrange a special Ed bus ---- just to get him into the school to be around students.
What is wrong with your school district??? Posts: 758 | From now TX | Registered: Mar 2001
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bettyg
Unregistered
posted
Welcome Maureen, I'll send you by PM, private message, 18 pages of newbie links/advise.
Also for your son, at the top of GENERAL SUPPORT I believe is now a TEEN GROUP moderated by a Mom for her daugher/friends.
There are other teens w/the type of thing you are dealing with. Hopefully, they will come along or this weekend so if you get NO REPLIES BY MID AFTERNOON TOMORROW, hit reply and show UP for more replies.
There are between 8-15 NEWBIES daily so older posts go to NEXT FULL SCREEN! Look there, etc. Bettyg
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I would'nt put off the IV... I have had one several times and I doubt much if it would interfere with playing drums...
I would bowl and I hung wallpaper when I had mine in... One just have to be careful not to pull it out!
If it is taped in well and covered by sock or something the mechanism can be protected.
I think this would benefit your son a lot more than the orals......IMO.......zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Maureen, I am so sorry that one more parent is going thru some of this..Welcome to my world, minus the 15 suicide attempts..
Rush to get him well before the magic 18 hits..Then it gets very complicated with a violent child..
There should be tons of info in the archives on IEP and 504 plans..Go up to post a reply and click on search and then fill in the blanks with such things..
Good luck and keep yourself strong and healthy..I have a couple of good friends but it is very tough here..Hugs..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
This is wrong. Wrong, wrong, wrong. The school has legal obligations here.
He needs acommodations, modifications and services, and is entitled to them under the law.
Not only that, he should be supported to stay in marching band, and not be punished for his illness because his academic needs are not being serviced appropriately. What's happeneing is a violation to his basic civil right to an education - and to have his disability needs supported.
- he is entitled to be educated, and supported in his recovery, disabilities supported - to graduate on time with his peers, healthier and ready for college.
That said - don't get mad, get informed.
I will try and lay out some guidance to getting this done.
Check the guidelines in your state for Traumatic Brain Injury.
It is a catagory under IDEA, tho some states mandate it is only for extrernal injury.
Many states include medical conditions that impact learning via their effect on the brain (ie:encephilitis, vascilitus, ect.)
Look at the state definition - you will see a list of cognitive symptoms under TBI.
You will find that Lyme kids have many if not all of the deficits. You can surely get an OHI classification, and still advocate for (and should recieve) accomodations and modifications for all of the cognitive symptoms - I am just suggesting the TBI classification since he is not classified yet, and it sends a stronger message for them to service the cognitive symptoms. Remember - he needs an **I** E P. Emphasis on "INDIVIDUALIZED" - which means his personal needs must be identified and supported.
To do this, however, you will need a Lyme Literate neuro-psychological evaluation.
If you can manage the travel to one of the experts - it would be well worth it - if you want to keep him in public school.
HOWEVER, even with a medical report delineating his symptoms (both cognitive and other) which impact learning, they cannot (legally) deny your son an IEP. He is protected under IDEA disability laws as needing one, because his health, vitality and ability to learn is impacted in the day to day. He is already protected under 504 automatically, so long as you have a doctor and your own parental concerns regarding his disabilitis.
Still, you will need at least a psych-ed eval from the private sector - and someone who is Lyme Literate to do it. I caution you, a school psychologist or non-Lyme Literate evaluator will likely produce an innaccurate, or even damaging report - as they will misrepreset, or be completely clueless - about the diffuse brain function symptoms of Lyme, and that they are reactive to disease. There, you can challange their credentials. How many cases of neuroborelliosis have they evaluated and/or treated to efficacy?
School advocacy can be a difficult maze, however, it really gets much easier once you learn the laws --
under the law, our kids are well-protected.
Also remember - this should never become a debate about Lyme disease with the school. What your doctor(s) states is word on the medical condition. The school is charged with educationg your son, and providing FAPE (free appropriate public education) - based on his symptoms/disabilities. - they are not doctors - their school physician is not an expert in your son's condition, nor does he treat him. The District (including the physician) has a role - and one role only in this:
To educate these children based upon their needs.
beyond the medical report with diagnosis and symptoms - with reccommendations for support - rarely discuss Lyme disease. You do not have to, and it is better that you don't. ONLY raise issues based on symptoms. That is the business of the school, not the Lyme thing.
If they have questions about the needs (beyond what you provide them with, pertaining to their role as educators) - ask them to put it in writing so you may sign a HIPPA release and have your Doc address the questions. Make sure Doc understands their role - E D U C A T O R S.. (they do not need to know about testing, blood, meds, medical terminology, spinal taps, they do not need to give medical treatment or monitoring in school, ect, ect, ect - they just need to know how the child is imacted by the illness/resultant damage)
Use the term diffuse brain function allot, rather than Lyme - or fatigue, or pain, or whatever the symptoms are. Get used to dropping the word Lyme while advocating for school supports. It really does not matter (to school) how he got his symptoms - the fact is he has them, and they have to support them. When they get into the medical debate, not only is it innappropriate for them to judge that which they are not qualified to judge - it only delays providing what they are obligated to provide the child under the law.
If you provide a good report from the doctor, you may not need to go into dealing with their "questions" at all - but beware that many school try and play doctor with Lyme disease.
"What are your qualifications to be making that determination" will become a good phrase to use. They cannot make judgements on a cardiac condition, lukemia, or other chronic illnesses, and they cannot with Lyme, either.
As parents, we can go in strong on the medical (unlike many situations outside the school) so long as you remember to keep the school within their role - then you can drop the usual defensive position on Lyme entirely (the one we have in other walks of life because of ignorance). Their role is to educate based on the needs identified by qualified professionals and parental concerns - their role is not to diagnos.
They cannot tell you what doctor to see. It is your basic civil right to obtain medical care for your child with profesionals of your choosing. Period.
Have your LL Doc provide reports which do not tell them more than they need to know (if you can find an educational advocate - he/she could advise you on what points the Doc should speak to in his report - what the school needs to know)
I believe it is usually - diagnosis, treatment (this can be generalized - like "intensive anti-microbial treatment" if need be.)
ie: he needs two sets of books (one for home and school) - he needs extra time alowed for tests (1.5 time or double the time) - he needs an abbreviated day - he needs a break in the day - he needs free access to the nurses office - he needs alternate setting for testing (like, a quiet room with the florescent lights off, alternate lighting) - he needs copies of class notes (often times note-taking is hard while listening, for these kids)
Look into whether he needs assistive technology (a laptop or various software programs to be used or taught) Look into whether he needs OT or PT - if he does - get your supportive documentation for the need and advocate for it.
Remember - the doctor's letter, and your requests - should always be in clear language - NEVER say "might need" of "may need" of "at times will need" - ALWAYS say -- needs, is necessary, requires, must, for any needs that he has.
Also, in the doctor's report, be sure he/she states that his condition fluctuates. Always state that, every time the Doc writes. This is an important thing to have understood for the child. ALSO - if stress impacts your child's illness, Doc should state that impelementation of the IEP is necessary to support medical recovery.
Basically, when you get your reports(s) - you are ready to classify him at CSE.
You say the District denied him an IEP - was that at a CSE meeting? Was it in writing? Did you request one in writing? What did you say or give them?
I found an excellent parent advocate by me, who works with cases with all kinds of disabilities. A good parent advocate will have the heart to learn about Lyme.
Once she did learn about it - I learned all of the above and much more. She learned about Lyme and now has several Lyme cases. Your son has a tremendous amount of rights under the law, and the District has mandated obligations to him.
Depending on what you provided them when you requested an IEP - they could even be held accountable for not evaluating him - if they have been aware of medical and other problems - they are obligated to evaluate for spec-ed needs. He has been done a huge disservice already.
You would need to consult an attorney about this - but one strategy, if you believe they have known enough to have been obligated to classify him before now (like, if they were given doctor reports - or your son is absent allot or having problems in school they can see) - a possible option to get this done firmly and fast
- would be to call an Impartial Hearing - stating that you believe the District has failed to evaluate your son and identify him as TBI (or OHI, depending on your documentation) -
In that letter, you state the remedies you believe they must provide -- ie: You are granted a CSE meeting for purposes of drafting an IEP - and - you can have your independant (private sector) evaluations be used to draft the IEP, and skip the school's eval.
..and demand anything else that you think he needs immediately.
Again, this is just to illustrate the rights your son has, and your right to advocate strongly - and the school's obligations under the law. You would need to consult a professional to know whether you are in a position to call hearing - it would have to be that they clearly have already dropped the ball. Calling a hearing, in that case, would be to do so knowing they would not go, because they would have been caught "with their pants down" before the hearing officer - so, in that case, would "settle" by giving you the CSE meeting and the evaluations (at District expence above insurance reimbursement)
OR - you can just put in writing to the Comittee that you believe, based upon his disabilities, that your son needs the CSE to draft an IEP for him.
At CSE, you can advocate for his IEP needs. Have your doctor reports well written, and the educational (or, preferably, neuro-psych) eval ready in time for CSE - At CSE, there are several members of the team from the District - and then there are the parents.
Parents are MEMBERS of the team - the most important members, because you have the most personal knowledge of your son's needs.
Advocate as an EQUAL player, really - the most important one.
Have your reports ready, and then make a list of "parental concerns" - and - suggested solutions -
ie: Concern: Johnny suffers from fatigue, doctor reccommends an abbreviated day
Suggested solution: IEP will state that Johnny begins his day at 9:30
Concern: We believe Johnny needs to be supported in his recovery, yet not punished for being ill.
Suggested solution: Johnny' IEP include "reduced workload, further reduced during times of illness"
- for instance - say, in Math - if the teacher requires the class to do 20 problems to demonsrate mastery of a skill, he will only be required to do ten. (or five, whatever the need be)
In English - since TBI deficits: slowed processing speed ect - make it so he cannot write on demand creatively - he will have a reduced number of classroom writing assignments, and be allowed to take them home to complete. (due to the neuro-efects of the light and sound in the classroom, and his ability to write unencombered in a quiet space at home. Forcing them to complete creative writing in class is innappropriate, and compounds their disabilities) So, if they are doing four classroom essays that week, he can do two, and take them home to complete before handing them in.
....things like this - btw - "qualitative rather than quantitative assignments and assesments" os another he may need. -- or "selectively reduced workload based on needs and strengths" is another.
remember the word "appropriate" - and use it often in writing and in meeting. By law, the school os NOT required to provide "best" or "optimal" education - but they are well mandated to provide "appropriate".
State when you believe something is innapropriate, and state what you believe to be appropriate (and why).
Also, always state things as "beliefs". "It is our belief" or "I believe" he needs x, y, or z.
If you state it as a belief, and your belief is backed up with info or reccomendations - that is strong, and yet you are not making statements as fact. (important to word it this way)
I have a heck of a problem with one individual in this school - and after we started using that statement - he simply did too.
He would say "I believe...[insert rediculous statement]" A professional should not make this statement arbitrarily -- if they state a belief of what the child needs, or doesnlt need, they must state what it is based on. ...or, why they think your belief is innappropriate. See?
Chances are, if you go in having done your homework and using this language, you will accomplish allot for your son.
The language and your preparedness will clue them in that you know the law - and the language causes them to look ahead as to whether what they do (or do not do) will hold up in Impartial Hearing. Oftentimes, that is enough to get what the child is entitled to.
If it isn't - you would have to actually call a hearing...and could well get it in settlement quickly, because their attorney's will know that they are being "innappropiate".
The idea is to play the game so you do not have to go there. Believe me, an informed parent is not something the schools are used to. They are used to parents not knowing the rights of their kids, or their own rights/obligation to advocate as an important member of the team. Your right to hold the "professionals" accountable to being appropriate - to ask "why" they will or will not do something. When you demonstrate that you do know these things, you should get a decent IEP out of the meeting.
Cite the sources with your suggested solutions if you can (Doc's letter, IDEA law, guidelines, objective data, research-based info, ect)
if you do the educational/neuropsych testing - you may find he has great strength areas - it is likely that parts of his brain are functioning at a high level - despite the deficits.
The CSE is mandated to consider the STRENGTHS of the student. Push that one, there is a reason the law demands it. They must have their strengths supported.
CSE is charged with considering parental concerns. They can decide not to do anything about them, but then - you can and must recieve a written response as to why a particular concern will not be addresed by the school.
They may address a concern in a manner you do not believe is appropriate. You can then have a discussion, and remember - your approval is mandatory for anything to go into the IEP. (and for anything to come out later)
You can always, on any particular - say you need time to think about it, and then you would table that issue until you could learn more, think, or get more info.
That's why coming in with a clear list (in writing and read it at CSE, with supportive documentation) helps you sort things out. If any curve balls are thrown, you do not need to decide on the spot.
They are charged with considering everything you bring them on your child, and you can bring anyone to the meeting with you that has knowledge of the child. You can bring an advocate (which I strongly suggest - I'd go, but you are too far away)
You can (and ALWAYS should) tape every CSE meeting. Just plunk a mini-recorder right in the middle of the table. That alone raises the bar as to the level of professionalism at the meeting. PLUS, you may really need those tapes for various reasons later.
Now, when you get these ducks in a row, and the list - and you have a meeting date -
send the reports and your concerns and solutions ahead of time to the CSE chairperson.
Make copies for all the team members to hand out at the meeting (the school may not even give them copies, but all team members must read the info in order to be efective for your son)
Remember also - once you have all this set - you can go in as sweet as pie about this - always stay focused on your child, stay student oriented, not focused on what the school is doing or saying.
If you have done your homework and you know the law - that alone is your offence. You can appeal to them in a very kind manner to give him what he needs - you do not have to feel inferior, or adversarial toward the school if you are prepared for your meeting.
Make sure you delineate a need for services. Not just modifications. (IEP must have services, otherwise, they will try and push a 504 plan, which has no teeth unles you are in a school with angels all around, 504 is not strong - especially High School)
Service could be Resource Room (for help with organization and extra time for tests) - Consultant teacher indirect (special ed teacher to help classroom teacher modify assignments) or if he heeds tutoring, OT, or PT services. He also could need a homebound instruction service in the IEP for times he is out sick - he deserves to get instructed at home when he needs it. Have it in place with an appropriate tutor. Have it in the IEP.
Do everything in writing regarding this from now on, or else it is heresay, and always follow all meetings meeting or other verbal agreement/communications with a letter of understanding, documenting what problem was raised, and what was agreed to.
A good book: "From emotions to advocacy" - go to Wrightslaw website.
Mo
[ 29. September 2006, 02:39 PM: Message edited by: Mo ]
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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Scroll down to Traumatic Brain Injury under the definitions. ("..open and closed injury") ...and get a LL neuro-psych eval. With brain injury - a psych ed eval is not sufficient. Have Doc list the cognitive sympyoms and the need for a neuro-psych eval, and have him reccommend the person to do it.
Another plus with this classification, is all the literature and guidelines for educators re: TBI match perfectly with Lyme disease needs. (Lyme Moms, no matter what the classification - if your child has neuro-Lyme, TBI guidelines are research-based tools for their needs - and are very useful.) Just for example: they state that the condition fluctuates, the kids are in recovery, the stress impact - and the fact that recovery is a PROCESS, not an event...which separates it from other Learning Disabilities.
Many of the deficits cannot be remediated by anything other than medical/physiological recovery. (so, remedial work in Resource Room is combersome and not helpful - the disabilities need to be accommodated, and medical recovery supported by reducing workload and letting them work in their strength areas - that goes for music, art, as well as academic strengths - like listening comprehension, or writing with extra time and less assignments, giving oral answers - doing power point presentations instead of a research paper, ect..)
You have a tremendous research-base with the term TBI - (can be used under OHI if applies to the child as per the doctor info and objective data) - however - it would be worth getting it called that, since you have no classification as of yet.
IDEA now mandates that the schools have a research-base for the decisions and teaching supports they use for these kids. Case law says you, as parents, cannot choose the specofic methodology unilaterally, however, they must have one - and it must be research-based.
If you bring the research-base (for example, guidelines for TBI teaching supports and methodology - which your state has already formed using multiple sources) , and they have no research-base from which to support their decisions - well...... there ya go.
If they say: we believe a slower pace class, or a 12 on one classroom, or taking five years to graduate is in order - make sure they explain why they believe that is educationally appropriate for your child - and ask "what is your research base".
If you believe your child needs x, y, and z - make sure you have a reasearch-base - and give it to them. This in addition to reccommendations from professionals who know and work with your child.
If you have any in-school professionals who have worked with him, and can document A. his strengths areas - what WORKS for him, and B. witness to how his illness fluctuates and impacts learning (ie: performance varies with fatigue levels, or, they see he is effected by too much light and sound, or work overload) - always ask them to write a letter regarding what they have experienced with him.
It is very difficult for the schools to argue with their own staff observations.
if you have school staff who you identify as adversarial or making wrong judgements - try and stay away from them as much as you can.
Make an ally out of guidance or school psychologist - and do your homework on the teachers - and try and have him placed with ones who are open to a different learning process, and who will collaborate with parents. That will save you allot of headaches, as even with an IEP, many teachers will simply ignore the document. (even tho, that is illegal, some will do it) Then you have to go to the administrators - and then, it will only help if they are on the child's side and understand the IEP, and are able to support it and dorect the staff to do so as well.
-- having an administrator as an ally is also critical, if you can manage to facilitate that through respect and information provided. You should be able to, theoretically, as this is all quite valid - but be prepared - not all educators "do the right thing" - so you have to have his needs backed up - and navigate this as much as you can through allies.
Check this page too, for TBI educational references in Wisconsin:
posted
Thank you everyone. Mo, I can't begin to tell you how helpful and empowering your detailed information is. There are only two locations near me that will even do a neuro-psych eval and neither is LL so I will have to research where to go for that. Otherwise, I was already in process of getting a report from our son's new doc to submit with a new IEP request. This will be very helpful for wording that report.
I will stay in touch.
Posts: 3 | From Wisconsin | Registered: Sep 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I work for the school district here in AZ and I still had a very difficult time getting services for my daughter. Since Lyme disease is almost unknown out here, and Bartonella is thought of as pasta, she had to go under the umbrella of fibromyalgia/CFS. AND, I needed the help of a mom who was on the school board.
This is what I finally did after she was diagnosed (which took three years into high school to get) I copied her MRI results, letter from the doctor, and a copy of Lyme/Bartonella symptoms, highlighting all the ones she had. It was almost entirely yellow...(I don't think I marked testicular pain).
Ride the District like an atomic wedgie. Go to the school board, or the superintendent if you are refused. The "No Child Left Behind" law belongs to our kids...not just the non-English speaking kids who got dragged over the border. (Can you tell I'm from AZ?)
I feel your pain. Now, we are dealing with it on a College level where you stand to lose lots of money if you can't complete a class.
It's the pits...but you can't give up! You are the only one who will advocate for your child.
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
You have your hands full! Sorry your son has been so sick. A real blessing that he has an interest; I think it is great he is participating this fall.
My daughter is 15yrs and struggled thru her freshman yr. Ended up with homebound tutoring, but she earned 1 credit for whole year. She could have been much more successful had the school held up their end.
Mo and others have given you awesome advice.
I just want to add- If you are serious about your son getting a highschool diploma rather than homeschooling or on-line school-
You need to get on it big time now. The school will fiddle around and waste your son's precious time and energy if you don't wield a big stick.
I am not cynical, unfortunately that is just how it is right now.
posted
I'm so sorry to hear of the troubles you're having with the school. My Son at that age needed accommdations due to his Lyme Disease along with Asthma and Allergies. I wound up having to hire an Advocate to assist. He was allowed to have a second set of books at home; to have a snack when ever needed (became hypoglycemic from lyme treatment); to carry and use a water bottle when ever needed; to have open permission to leave class to go to the Office if unwell or the bathroom when ever needed; to receive copies of notes when he missed classes due to being ill or med appts, etc; to not be required to take PE. This was based on letters from LLMD as well as from Allergist and Family Dr too.
That was in Michigan btw.
-------------------- Toodles, Sal Posts: 195 | From Tampa, FL | Registered: Sep 2001
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posted
I hope by now you have gotten an IEP for your son. I work on a Child Study Team and Legally he is entitled to an IEP under OHI (other health impaired), if in fact there are sevices that only special education can provide. If you contact the director of special services in your district and tell them your going to go "due process", you may get results, b/c the district will LOSE if you go legal with them and it will cost time and money and embarrassment to them. Districts think parents are stupid and that they run the show...your son has a medical condition just like a child with diabetes, seizures, etc. If regular education can serve him then you can request a 504 plan which is pretty much the same as an IEP but under regular education...the nurse in our school coordinates these for kids with all sorts of ailments... check it out... RRRRRRRRRR...it makes me SO mad that they wont help your son...I get so sick of people downplaying and dismissing LYMES and it's horrid effects. Best wishes!!!
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