This is topic Issues with my daughter's school in forum Medical Questions at LymeNet Flash.


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Posted by orrn (Member # 6672) on :
 
I have posted about school issues before, but can't find what I'm looking for in the search area.

My daughter is 15 and we have had issues with the school systems since she started.

She has LD and coinfections. She has had extreme anxiety and doesn't really leave the house much.

This has been within the last few years and confessed she is having hallucinations last night.

She has a lot of issues with school work and is currently in an online schooling program.

Even with this program she is not able to put in as many hours as they want her to and is unable to do a lot of the work.

They know about her illness and the issues, but keep saying "It's the law". What do you do with children that are chronically sick?

She is home, not out running around. We have had doctor involvement since she was 3 years old.

I don't understand why they don't get this. What are my rights and where do I stand legally?

Is there someone here that is knowledgeable on this?

Thanks in advance for any information.
 
Posted by surprise (Member # 34987) on :
 
I am not an expert, just a suggestion.

Look into 504 plan, which is legal help/ schooling guidelines for ill or disabled children and public schools.

Child's attending Dr. writes a letter stating illness, limited capacities, etc. you want to google examples, guidelines,

then set up meeting with school asking for 504 accommodations for your ill child with treating Dr.s letter in hand.
 
Posted by poppy (Member # 5355) on :
 
Somewhere I have seen more about the individual plan for kids who have disabilities, which would surely include a disease like lyme. But can't find it and in the meantime, maybe something in this will help. Even though it is mostly talking about kids who are actually going to school not doing online instead.

http://lymedisease.org/resources/children_pdf/berenbaum%20Kids%20and%20Lyme.pdf.

Here's another one. I am surprised that your daughter does not already have the individual plan with the school, thru section 504. Would have thought it was necessary to be able to do the online program.

http://learningdisabilities.about.com/od/ac/g/accommodation.htm
 
Posted by steve1906 (Member # 16206) on :
 
Here's another good site... http://rissenberg.com/educational-accommodations-for-children-with-lyme-disease/

I too can't believe your daughter is not on a (504 plan), you really need to setup a meeting with the school.

Steve
 
Posted by steve1906 (Member # 16206) on :
 
Perhaps this is the post you're looking for?

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/115524?
 
Posted by marypart (Member # 27012) on :
 
This resource may help.

http://www.ibsgroup.org/chronickids/index.htm
 
Posted by beaches (Member # 38251) on :
 
The first thing you need to do is request an evaluation of your daughter. Address it to the head of Special Ed or the equivalent. Briefly state what you posted above regarding your daughter's illness. Send all correspondence certified mail, return receipt.

The school system should then work with you to schedule evaluations--educational, psychological, and others which can be conducted in the home.

Once those evaluations are completed, there is a meeting amongst the parents, special ed personnel, teachers and evaluators, etc. to determine if your child qualifies for an IEP or a 504 plan.

From there, accommodations and modifications are worked into whichever plan. For instance, one accommodation for your daughter could be that she has instruction in your home from teachers in your school system. Another could be modified work assignments because she is physically unable to do the work of a healthy student.

If the school system refuses to evaluate your daughter, you will need to go further--enlist the help of an advocate or write to the BOE and super.

Here are two links to help you get started:

http://www2.ed.gov/about/offices/list/ocr/504faq.html

http://idea.ed.gov/explore/view/p/,root,dynamic,TopicalBrief,10,

Another thing to keep in mind is to get in touch with teachers directly and explain your daughter's situation. Often teachers will excuse some assignments/homework when the kids fall far behind.

The other option you might want to try is homeschooling. Some states have practically no regulations regarding that and some have stringent regulations. If you live in a state with little regulation regarding homeschooling, that is probably your best option.

You should google homeschooling in your state to find out more.
 
Posted by orrn (Member # 6672) on :
 
Thanks for all the information. I am being told that the 504 plan, which she has had before does

NOT cover absences. This doesn't sound right to me, but that is what they are telling me. That was

from the regular school and now from the online school. I thought the online school would be

better, but they are saying that she has to be logged in on the computer for 4-5 hours a day.

The computer hurts her eyes when she's not feeling well. I cannot do any homeschooling(meaning they

won't approve it) while she is having problems with "truancy". I am just at a loss, really.

Thanks for all the information. I am going to read through it all.

orrn [bonk]
Colorado
 
Posted by beaches (Member # 38251) on :
 
It is your legal right to homeschool your child. You do not need permission from your school system or your state. No one has to "approve it"

And FYI, in order to meet hours required for homeschooling, remember that our children are learning throughout their waking hours eventhough they are ill.

Your instincts are correct regarding the absences and the 504. Think about it. Your daughter is sick. She cannot attend school. Her doctor(s) support this.

Given that, how in the world can she be expected to attend school and continue to be marked as truant?

If your school system took into account how ill your daughter is/was when the 504 was written, she would have an accommodation for receiving instruction in your home, which would be approx 2 hours per day at the secondary level.

You should write a letter to the head of sp ed or equivalent requesting that the 504 committee reconvene asap. This is your legal right.

Make sure you have medical documentation indicating how ill she is and that the severity of her anxiety prohibits her from attending school at this time.
 
Posted by beaches (Member # 38251) on :
 
And enlist the help of her doc(s). They can certainly write a note indicating that your daughter is unable to attend school and is in need of instruction delivered at home due to the severity of her illness.
 
Posted by orrn (Member # 6672) on :
 
beaches, I admire your passion, but things don't always go like they should.

It is the truant officer that told me about the absences not being covered under the 504 and also the school.

I know this makes NO sense, but when I go to court what is the judge going to say?

I looked up the policy on homeschooling and according to Colorado if there is a problem(or

perceived problem) with truancy it states they can deny homeschooling.

Our doctor has provided documentation of her condition for the school and nothing was done any differently.

I have had the same problems, even when she had a 504. I do not have money for an attorney and one

of the people that I just met with, from the school, was an attorney(she held a title at the

school though). She was there when they were telling me all this.

She said that if I got a 504 for her that she would need to attend "lab" time for them to observe her.

Lab time is time that they go into a room and work on computer work with a staff person available to answer questions.

I am at a loss really, because none of this makes any sense. I cannot believe that this is how they handle a sick child.

I feel it is because she doesn't "look" sick enough to them.

I just went through stuff at work with FMLA that smacked me right in the face.

My employer downright lied about what they told me and it was my word against theirs.

I had all my documentation and everything and took it to Wage and Hour and still got knocked down.

I am so tired of these programs being there to help you and then them failing.

I could get a lawyer and pursue it, but I would get fired.

Not for FMLA reasons, but they would find something.

So I have to just accept it and move on. The world is a nasty place.

I just want my daughter and I to be left alone to deal with our illness the best we can.

I don't want her to NOT be educated either. I am her mother and love her very much, but when you

see your child struggling you know that some things can wait.

Sorry this turned into a book and I feel like I am ranting. I just cannot take any more. Thanks for listening.

orrn
 
Posted by poppy (Member # 5355) on :
 
Be careful about hanging this whole thing on lyme. Better to emphasize what she can and can't do, without giving any opportunity for them to question diagnosis. This has gotten parents in trouble.
 
Posted by Catgirl (Member # 31149) on :
 
Great advice Poppy!
 
Posted by beaches (Member # 38251) on :
 
orrn, believe me I surely know things don't always go as they should. It is bad enough to have a sick child. To have to go through hell with a school system just adds so much more unnecessary stress. And I am sorry to hear about your job situation.

I think you are being railroaded. You DO have rights under the law. I surely wouldn't be taking the word of a truant officer or the school system's attorney! They are not interested in what is best for your daughter.

Poppy, the physician has to write a dx on his notes and IMO if the child has LD, that dx should be on the notes. He can also include other dx such as dyslexia, anxiety, etc. and he can/should state that due to her severe symptoms she cannot presently attend school.

orrn, I really think you need an advocate to help you navigate this. Advocates are much less expensive than attorneys. There is a nationwide organization called COPAA (Council of Parent Attorneys and Advocates). Here is a link to their site:

http://www.copaa.org/

I used the search function for CO and here are a couple of advocates you can check out (along with others):

http://www.copaa.org/members/?id=20879867

http://www.copaa.org/members/?id=16557089

Best of luck to you. I hope your daughter gets better soon.
 
Posted by kellyjk4 (Member # 19731) on :
 
orrn,
A great place for parents to find information about the legal aspect of homeschooling is www.hslda.org.

It's the Home School Legal Defense Association. There's a lot of information on the site - maybe it can help.
 
Posted by carriekaye (Member # 43533) on :
 
My daughter too has had to pull out of regular school and enroll in virtual because of her condition.

I will admit that I fudge the numbers when I put in the number of hours she does each day. Our program requires the parent to keep attendance, and I ensure that the records reflect that she's putting in her hours.

Additionally, my daughter chooses to do her work in spurts, with long rests in between. So she does the work when she feels like she's emotionally up to the challenge of dealing with the pain (even typing is painful for her), even if that means it's done at 1am on Saturday night. Then she rests.... for days.... without doing any school work. This was actually a recommendation from her therapist (for dealing with the chronic pain).

This means that she gets really behind, and then goes into a spurt where she gets (mostly) caught up. And I just ignore it when she's really behind.

We have been really lucky that the staff of our online school is very accustomed to dealing with chronic illness. A large portion of the kids in the program are there because of chronic conditions. If your current online program is not working for you, perhaps you can find a private online school that will be more willing to make accommodations.
 
Posted by beaches (Member # 38251) on :
 
And just so everyone knows, there is no stipulation regarding attendance/absences in the Section 504 law, nor in the IDEA law (IEPs).

In fact, many times excessive absence due to illness is why a 504 plan or an IEP is created for a student in the first place.

Do not assume that school employees know the IDEA and Section 504 laws. And, do not assume they wouldn't lie to you even if they did. Their allegiance is to the organization signing their paychecks, not to you.

And remember too that these are federal statutes. A school system does not have the right to put its own "spin" on the law. Of course, they will try, which is why parents need to have a fundamental understanding of education law (in addition to medicine lol) and get an advocate who can on represent them and help them work through problems with school systems.

Stepping off soapbox...
 
Posted by beaches (Member # 38251) on :
 
carriekaye, our children are learning ALL the time, even when they are too ill to attend school.

For instance, if they cook/bake/shop with us, they are learning math.

When we tell them about the dangers of drugs, they are learning health.

When we watch a documentary with them, they're learning history.

When we correct their grammar when they speak, they're learning English.

I am so sorry to hear about your daughter's health struggles. I hope she gets better soon.
 
Posted by carriekaye (Member # 43533) on :
 
I agree that kids learn all the time, so do I! At least I hope I do. [Smile]


However, my 16 y/o daughter is NOT learning calculus, physics, literary analysis,

etc when she's cooking, shopping, watching documentaries. The level of

education she's at requires more formal training.


At this point, I'm just happy she's passing classes and will be able to graduate.

Before virtual school, she was failing classes due to missing class for MD

appts and the pain of writing and walking around campus. Now she's back to

straight As, like before her pain got so bad.


Thank you though, she has her first appt with the LLMD in almost 2 weeks. I'm

also hoping that he can do what no other doctor has been able to.
 
Posted by beaches (Member # 38251) on :
 
carriekaye, my point was that in order to fulfill the mandated number of hours of instruction set by a state for homeschooling, a child does not need to be sitting at a desk receiving "formal" training.

A debilitated child, unable to go to school, can still fulfill the # homeschooling hours required by a state.

Online schools have their own deadlines of course, and that model of homeschooling is different than the model I was referring to--ie, a parent doing most or all of the homeschooling. I am glad to hear that your daughter's online school has an understanding of chronic illness and the ensuing difficulties.

I understand what you mean about the level of education. Unfortunately, many children afflicted with tbd are unable to achieve the level of academic functioning they'd be able to if they were healthy due to neurological issues, pain, etc.

My expectation was that my children would be in honors and/or AP classes (and be full participants in school athletics and activities) and be accepted into great colleges.

I have had to curtail those expectations significantly. These days I'd settle for a kid with a C average who is 75% healthy, has a good social life and a few good friends.

I have also learned that when faced with severe illness, some kids turn to creative outlets such as writing, drawing, etc. and those outlets should be encouraged and celebrated just as much as a grade of A in an AP class.

Good luck with the LLMD appt. I hope your daughter feels better soon. It certainly is a tough road.
 
Posted by beaches (Member # 38251) on :
 
orrn, how are you doing?
 
Posted by kelmo (Member # 8797) on :
 
I do attendance at the school where I work. If the child has a 504 and the parent calls the attendance line and mentions the illness as the reason for the absence, it will not count against them.

Even working in the school system, I had to fight tooth and nail to get accommodations for my daughter.

It was a struggle, involved summer school, home school and a special school for kids with other problems due to pregnancy or crime. But, she graduated on time, on the couch, while her friends walked in graduation.

It's heartbreaking when our children are too ill to have a life. My daughter is now 26, attends college. She has never been able to work and attend college, but she is holding on to that dream. She still lives at home, still in treatment, unsure about her future. We take one day at a time.
 
Posted by beaches (Member # 38251) on :
 
Kelmo, [group hug]
 


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