bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Oh hi, yes well since you didn't respond to any of my emails or personal requests to meet with you one on one to talk about my daughter's needs, I'll just talk about them in front of her.
Its not really that big a deal if we label her so she leaves feeling like an idiot.
So you've noticed that she has some pronounced visual processing deficits. Oh you haven't. Oh you haven't looked at the test results in her file?
No big deal, they were just for my benefit anyway. I wouldn't want you to go to the trouble of making special accomodations.
Well okay, let me fill you in. When you hand her a check list, or write a list on the board, she either doesn't see it at all or can't understand how it has any impact her life.
Her auditory processing is intact. If you tell her something she'll do it. That is, if she remembers, because her recall is also seriously affected.
Besides that, she's really a warmhearted, enthusiastic, exceptional kid! Oh, that's attention deficit disorder? Thanks for telling me. I'll give her more coffee in the morning.
Oh, and by the way, her condition has another name too, its called congenital neuro-borreliosis.
She's being treated for it starting next week, so if she feels too sick or tired at school she should call me to come pick her up. But only in the afternoons, because in the mornings I'll be feeling sick at work.
Yes, I know she already has that habit of saying she has stomach aches, headaches, or back aches in order to get out of doing work, and she sometimes falls asleep in class.
Now what I'm telling you is that if she feels that way I want her to call me to come get her. Yes, I've read the book on how to set appropriate limits with children.
How does this relate to the lyme test that she missed school for last week? I'm glad you asked. She has lyme disease and was born with it, because I got bitten by a tick when I was younger than she is now.
Well the usual treatment is massive doses of antibiotics for several months or years. Most people around here think this diagnosis is really just attention-seeking behavior, so it would be tough to get her on the right antibiotics.
Specialist? Oh, the only pediatric specialist in the world lives on the other side of the continent, but he is currently at risk for losing his license for treating children from out of state. Maybe we'll go for a visist this summer if she isn't getting any better.
In the mean time, I'm going to give her herbs, homeopathics, and microcurrent therapy. That's micro...never mind.
What does her doctor say about that? Well actually her doctor doesn't know. I had a friend draw her blood after several doctors refused to acknowledge my positive test results as valid.
Actually, I diagnosed her myself, using information from a chat group I know of. I didn't want anybody to look at me like a kook again, and I don't want to put my child through what I have been through.
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Good luck. It is Hell.
When you have time do a top search on IEP's, 504 plans, and other possible educational topics. THere should be volumns.
Check on Mo, she probably has some good past posts. Some mom's are no longer on the boards because they were ridiculed and had things posted on sci/med. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Thanks, I'll take a look. My child doesn't qualify for an IEP because I keep her near or at grade level by tutoring her at home. Today they told me that she is not allowed to bring work home because she takes it all home instead of getting it done in school. What now?
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Bejoy,
It breaks my heart to read your post. I am so sorry both you and your daughter have to go through this.
I worked as a speech pathologist in Louisiana in the public school system for many, many years.
It is under the Special Ed umbrella. IEP's are only written for children who qualify for Sp.Ed.
However, there are many, many different exceptionalities from Gifted and Talented to Orthopedically Challenged.
I am not sure your daughter would qualify for Sp. Ed. services, unless she has a dx of ADD and it is something that is being serviced via Sp Ed in your neck of the woods.
That being said, there is something "magic" about having a pediatrician or physchiatrist write a prescription or note to the school
stating that this child is to have extended time for test taking, or allowed to bring work home, or allowed to take frequent potty breaks.
Sometimes this is enough to either get a temporary IEP (60 days so an eval can be completed.
Or brings this to the 504 committee who is "supposed" to address educational concerns that can be handled within the regular classroom.
Do you know of a physician who could/would do that for you?
They can even write that she is to take a daily nap in the nurses office.
If for some reason, the school can not comply, usually a simple letter from a lawyer stating they are representing you and your child in this situation does the trick.
Do you have any lawyer friends?
I have seen entire school systems role over because a MD said it was so, or because a lawyer wants to sue to make it so.
Catch my drift? This is a crafty, underhanded way in the back door......but it is effective.
I hope you have a wonderfully supportive school system that will be willing to work with you for your daughter's sake.
I would approach the 504 committee first. Say your daughter has a medical condition and needs some accomodations in order to continue to function in the regular classroom.
I will pray for you and your daughter. I just wanted to give you the additional info in case you run into a brick wall.
There are always options.
Please keep me posted on your battle for your child's education.
By the way, Public Law 94-142 is the law that guarantees a free and appropriate education for all children with disabilities.
In my opinion, Lyme is certainly a disability.
Google the law. Read the parents rights. All states have to follow this law.
God bless and good luck.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bettyg
Unregistered
posted
geneal, OUTSTANDING info here for bejoy/other parents going thru the same thing.
i've seen many posts these past 6+ months about kids/school, etc. perhaps if you do a search on this subject,
you can come up with more parents and form your own SCHOOL CHILDREN LYME SUPPORT GROUP and pass on knowledge/experiences to one another; just my opinion to help you all.
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
[ 25. February 2008, 03:42 AM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Thanks for the information and encouragement, Geneal!
I did get her testing and accomodations three years ago. She has been doing okay since then without having to go through the process formally, because the teachers have been so communicative and helpful.
Just imagine the bomb they dropped telling me at this point in the year that she isn't turning in about a third of her work, and what is done at school is done poorly.
I was under the impression that all was going fairly well for a change. Unfortunately, I must have been too sick this year to really pay attention.
Now I don't know what lengths to go to for two and a half months, and a new school next year. I think I'll just have to go in to school and bring her work home, even if they tell her not to.
I think I will plan to schedule testing for the first few weeks of school next year, so she can start out on the right foot. Then if we need to do a section 504 we can have fuel and get it going immediately.
This summer is going to be a homeschool intensive to get her caught up.
She's really a lovely, bright and friendly girl, but the way she processes information doesn't follow the norm. It's easy for her to nod and smile, and have no idea what she just agreed to.
She has learned wonderful coping skills, like how to read people's faces and give them exactly the answer they were loking for! She doesn't present in any way like a sick, disabled, or troubled kid.
I remember, I had lots of trouble understanding what was going on at her age. My mother called it lacking common sense. I now call it lyme and co-infections.
Putting the pieces of the puzzle together: I had "mumps" encephalitis towards the end of first grade and was in bed for a few weeks. I have very few memories of the next two years.
I can tell you about every little finger painting I made in Kindergarten, but nothing about 2nd and 3rd. Then in 4th I remember everthing again. I must have been out there in lymeland.
I have the same kind of memory loss of the first three years of my little one's life. Sadly, we lost almost all of our photos from that time as well due to not backing them up. I literally lost another 2 1/2 years.
My sweet big girl has put together a memory book of cute things her little sister did and said. I want to be the mom here and do this stuff for both of my kids. Soon I hope.
bejoy
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
You can get around this.
My school system was a pain and at the IEP for my boy I asked to have the school district doctor called in to it also. They hate that because they must PAY him a consultation fee.
However, my son had been seen by the famous Dr. F at Columbia and a letter from him stating my son had congenital lyme was all the district doctor had to see.
They copied the letter and put it in his file and the school has left me alone ever since. Our Dr. F is to much of an expert for the district doctor to go up against.
So I agree with Geneal it helps to have a heavy hitter.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Bejoy,
Forgive my Lyme brain, but it might be worth it to have her screened by a Speech Therapist.
I realize you said her auditory processing is intact, but boy I don't think I could pass the test we used to give in schools (especially now).
Any word recall problems?
Depending on her age, she may be able to get a Speech Therapist to administer specific tests that we use for stroke patients and other "brain" challenged individuals.
The Western Aphasia Battery is one. It test many different areas. Word recall, memory (short and long term), problem solving, visual memory, auditory memory and such.
Now, they won't administer these heavy duty tests unless she fails a screener.
It may be worth it to get her screened. Tell the speech therapist your specific concerns re:processing so they can be more specific
in their screening methods.
I am sorry I missed even thinking about this last night.
Hope you and your daughter are hanging in there.
Praying for you too.
Hugs,
Geneal
PS: Don't beat yourself up for not knowing things weren't going so well. Shame on the teachers for not conveying info to you
in a timely manner. All you can do is your best on any given day....and when you are ill....that is really hard.
I think you ARE doing your best!!!!!
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hi Geneal,
Thanks for the additional info. Your support makes me cry, but in a good way.
All of this seems so normal that making a big deal out of it is a novel idea.
I remember once reading about a kid with a clubbed foot who asked his friend how the friend could run so fast when his foot hurt so much. We get used to our experiences and just normalize.
I don't notice any speech or verbal recall problems in my daughter. Not like me, where I'm constantly having to say, Ah, ah, ah, "Sorry, word search is off."
I don't even remember what tests she was given three years ago, but they showed visual processing deficits, and short and long term recall difficulties.
If she learns a math concept one day, she can't remember how to do it the very next day.
The only thing that works is daily small dose repitition over a series of months. I have asked the math teacher for this, but got no response.
I must be seen as a threat. I got the "trouble maker mom" label from confronting some other serious issues at the beginning of the year.
The stress put my lyme into mega-overdrive, but finally got me diagnosed.
I understand from another member that I can get a section 504 for OHI, Other Health Issues, especially with a doctor's note.
If I run her through the tests this year, would they count for next year in a new school, or would we have to run them again? Do you know?
I would be great to have her all set up for her new school, but I'm just not up for another big fight to benefit the remainder of this year.
I don't think the current staff are really up for helping her, but I do want them to at least keep me informed, help her stay focused on the work, or get out of my way!
bejoy
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
The tests are good for three years, so I would suggest getting them started ASAP. Parents are now allowed to initiate screenings, so ask to speak to the teacher in charge of the local screening committee to get the ball rolling.
That way things will be in place for the beginning of next year, which is much better than waiting for the new year. They can have 60 school days from the time screening is initiated to complete it, so start now!
Good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I'm on it Monday morning.
I'm so mad now that I don't know what to do but cry. I called the principal to ask how I can have a discussion with teachers who have so far avoided me.
He directed me to the head teacher who reminded me in an email that my concerns had been adressed at the conference.
This year is a total loss. I've already spoken to the counselor at the new school, and she's responsive.
Not only that, but my daughter's lyme test came back negative today. Now I have to find a way to convince my own self that I'm not crazy.
bejoy
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Bejoy,
Have you had your daughter on any antibiotics yet?
May be worth a 10 day run of doxy then retest via WB.
Igenex uses this method to get a higher number of bands.
They recommended it for my husbands test (He is Elisa positive).
I know in La. the system works like this.
Anybody can request a screening. Parent, teacher, principal, etc.
Screening is done.....pass/fail
That is not to say that your daughter cannot get modifications via 504 committee.
However, if your daughter fails the screener, then the Pupil Appraisal Team will request permission for a full evaluation.
Yes, evals are good for 3 years. Sixty school days to complete, but here they can request an extension for summer, awaiting medical records and such.
Once the eval is completed, you get a copy to read/have.
Then they set up an Individualized Educational Plan to meet your daughters needs.
You go to the IEP and if you are in agreement, sign it and it is "good" for one year, although you can request changes at any time.
You know there was also a discussion on the board the other day re: lonestari b, I think also called Master's disease.
The Western Blot will not pick that up.
I would call the school board and complain about the teacher and apparent lack of interest in your concerns regarding your daughter.
Trust me, as a parent, you have 100 times more rights than a teacher.
Take a deep breath. Plan your strategy for Monday.
You can move mountains!!!!!!
Hugs,
Geneal
PS. I think I will beat you in the parent that is a pain category when my children get to school.
Besides knowing how the system works, I also hold a Type A teacher's certificate for La. Highest level of certification in our state.
I will be a lax teacher's nightmare!!!!
Posts: 6250 | From Louisiana | Registered: Oct 2006
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