posted
Well, we finally understand why my daughter, once the top student in her class has been slowly declining academically,
to the point where she can't memorize anything, and has very little reading comprehension. Not to mention having horrific emotional outbursts, worse than the typical teen's.
Got back her positive WB yesterday.
She just started HS this year, and enjoys it (at least the social aspects), but as she is not feeling well, her attendance record is miserable.
I also have lyme, in a severe neuro form, so I know what she is feeling. I do not doubt how unwell she feels, but barring any alternative right now, she really needs to make the best of what she's got.
But she won't hear it.
Sore throat today, no fever, in her mind equals no school. No amount of reasoning, pleading, or threatening will help. She does't care. Maybe she is depressed. But she would not take something or see someone for depression.
Help! I feel she is throwing away her life. In our country there are matricualtion exams starting from the 9th grade!!
I would love to hear from parents in a similar situation.
thank you!
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
am, so sorry about this.. It is a war and you need to postion the troops..Look into a good psych, lyme literate would help, to be able to work with the school system to fight with you for help, and to help your daughter.
Make sure you consider Bartonella as a player also.
There are many of us that are in your shoes or have been. So sure others will offer more help.
I also recommend you research an IEP or 504 plan and there should be tons in the archives..Go up to the top search feature and check out previous posts.
Asap get an appt with the school psychologist, principal and go over the situation and ask for testing for learning disabilities, such as non-verbal learning disability. Research on the internet for documentation help.
A recent brain spect scan showed major damage in our daughter. It might help to document if the Dr suspects a similiar situation.
Try to get something set up for tutoring or home bound instruction if she can't attend on a regular basis.
ANd make sure the care giver takes care of themselves.. YOu have to be healty to help get the child the help they need. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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Cobweb
Unregistered
posted
I have a tenth grader, Carolyn, who is 15-turning 16 December 25th !
Last year she made suma cum laude throughout the school year and received the Leadership award at the end of the year.
She was diagnosed with Lyme over the summer and is currently taking Doxy and Rifampin. Her most common complaint is the fatigue,nausea and falling asleep in class.
This year I got a midterm report from her Latin teacher questioning her poor performance in Latin, compared to how well she did last year.
I also have lyme and we are in the middle of a move, so I have not been on top of things at school. She does leave class twice a day to take meds, and they know she has Lyme, but we have not had any formal meeting about how it is impacting her schoolwork.
Mostly I sense a tired dragged out kid, who comes home from school ,sits on the couch to do homework, naps on the couch for an hour or two, sits on the couch somemore to watch TV and then sleeps on the couch for the rest of the night.
It's like the couch is her home base, her nest.
She has signed up for indoor soccer, LLMD just said , well if she thinks she can do it-then go for it. It starts the end of Nov. So we'll see. I hope it doesn't backfire and become a discouraging experience.She's played soccer for ten years-and she knows she is woefully out of shape but can't bring herself to run to stay in shape.
I hope when she finds out she can't play as well as she has in the past she accepts that maybe it's the lyme and not her.
Sadly she was on track to getting her black belt in Karate, made it to brown belt, but then the Karate Master was arrested on charges of sexual misconduct -he pleaded quilty and is now doing ten years.
Any degree of discussion about it she says she was not involved or effected by his behavior, but she also has no desire to finish the Karate with anyone.
None of this gives you guidance I know, it's just a glimpse into another Mom and Child's world with lyme.
mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Morning Again-
We have been there AND survived. My son was diagnosed at the end of 8th grade. He had been going down hill for two years. We thought treatment would mean life would get better. We were wrong. Treatment with long term oral antibiotics brought strong herxing, taking him out of school for a week eack month during 9th grade. Then he had several days going down hill and days recovering, leaving about 4-5 days a month when he was functioning better.
Our kids simply don't have the coping mechanisiums that we have to get through. It was phyically painful for him to sit at a desk all day. He couldn't get enough sleep and do homework too. He was penalized severely for not handing his work in on time. We did it all on the week-ends.
We did notice that for all the problems his test scores were ok. He had the concepts in Algebra but couldn't do the math. We knew the info was going in. The English teacher, had known him before he got sick and had seen the change in his health, modified the work for him, letting him write only when he was well enough and with lots of coaching from me. I hate to say this, but the "busy" type homework we ended up doing for him so that he wouldn't have so many Fs. We tried to protect his educational self-esteem as much as possible.
For 10th grade we home schooled him thru a local cyber charter. Yes, it was pretty scarey, having lyme brain mom couching lyme student. Some days school was PBS. The important part was that he got to sleep as much as he needed to get well.
He was well enough to go back to public school for 11th, with much stronger accomidations in place should he relapse. A medication change in early October improved his health rapidly. He made the honor roll. By Christmas we were scrambling to get him back in track to graduate in 12 years and take PSATs.
A year later he is still functioning well and accepted at college.
I know it looks very bleak at this point and I was very focused on keeping my son on track for graduation too. Then I realized that getting him well was more important and that more time in school was much better than pushing him thru and having a sick child at home post HS graduation. We focused on getting well.
That said... Try to have work for your daughter to do when she stays home and feels well enough to work. We found our son could get more done in 2 hours after lunch then in a whole day at school. We got a second set of books so we always had the material and the assignments could be e-mailed.
posted
WEll, my little lymette got in the car today and the first words out her mouth were-"Can I stay home from school tomorrow?"
I'm impressed she goes as often as she does. But I told her sure-she's a good student,not a slacker, so I know she must be feeling it to ask for a day of rest.
I may be mistaken but I got the impression the LLMD is only going to treat her for another few months, like maybe three or four-so I'm hoping we'll make it through this year.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I'm guessing for your comment "in our country" that you are not in the U.S.? I would highly recommend you talk to somebody to understand what laws and services are available for children with disabilities in your country.
Find out if she can postpone the matriculation exams if she is ill. Make sure you know early what you have to do to meet regulations.
It's very important that you find the balance where you trust your daughter when she says she is not feeling well and not babying her symptoms.
I contracted Lyme when I was 12, but I was not diagnosed until I was 29. I did not have a severe case most of my life, but I did have extreme knee pain throughout my adolescence.
I simply could not concentrate when my knee hurt. I needed people, my parents and teachers, to understand that I was in real pain. They mostly did, although nobody ever got me real pain treatment.
I remember I told all my teachers about my knee so they understand if I put my leg up on a chair or had to stand up in the middle of class.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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quote:Originally posted by am36: Well, we finally understand why my daughter, once the top student in her class has been slowly declining academically,
to the point where she can't memorize anything, and has very little reading comprehension. Not to mention having horrific emotional outbursts, worse than the typical teen's.
Got back her positive WB yesterday.
She just started HS this year, and enjoys it (at least the social aspects), but as she is not feeling well, her attendance record is miserable.
I also have lyme, in a severe neuro form, so I know what she is feeling. I do not doubt how unwell she feels, but barring any alternative right now, she really needs to make the best of what she's got.
But she won't hear it.
Sore throat today, no fever, in her mind equals no school. No amount of reasoning, pleading, or threatening will help. She does't care. Maybe she is depressed. But she would not take something or see someone for depression.
Help! I feel she is throwing away her life. In our country there are matricualtion exams starting from the 9th grade!!
I would love to hear from parents in a similar situation.
thank you!
I know what your daughter is going through. My grades are falling badly and I got a D on my report card last year, even. Nobody understands how hard it is for us.
Hmmm, have you ever thought about home-schooling your daughter? I think academically and physically she may be more comfortable. Just a thought.
I hope you and her feel better soon
-------------------- "Life doesn't have to be perfect to be wonderful."
posted
thanks everyone for your kind words and good advice.
Mostly, I would love to see her self-esteem back.
As was pointed out, trying to find the line between really too unwell to function, and using it as an excuse to not go to school.
Thinking about having schoolwork for her to do at home so that she won't be using this as an excuse.
We are still pre-treatment.
We definitely could get her permission to do the exams later on, but she doesn't want to go this course. Problem is that she doesn't want to go any cousre!
Question: Would it be helpful to have her evaluated for learning disabilities?(albeit being caused temporarily by lyme) Would remedial help work?
All very costly here. Evaluations are not covered. We tried doing one a few years ago, and she was very insulted by the notion and acted out during the testing, including purposely writing the wrong answers just to get back at everyone.
thanks again to all
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Lyme kids don't fake fatigue. Many develope social anxiety and want to stay home secondary to lyme.
You can take classes on line through Keystone High School. Credits transfer to most schools so she won't get behind.
I dropped my kids off with them in tears before they entered school many times before we made decision to work at home.
Lyme treatment usually takes much longer than 4 months.
It is hard. My kids are getting back into the swim after a hard yr.
posted
My son was in the tenth grade when he got sick from lyme. He missed 10th grade and now is still at home.
He was an honor student and star athlete but had to give it up due to lyme. Soccer was his thing and he tried to get back into it but the fatigue is so overwhelming.
He was so dissappointed that he could not do it. I remeber in the beginning the frustration of him not trying hard enough to go to school.
But he is just to ill and we have a tutor now and he is Otherwise health imparied and in special ed. This is something you need to look into, we had a 504 and it was a waste of time.
Contact your special education department and talk about OHI. You can message me anytime! I have been thorough this and his in the the 11th and the battle continues.
Take Care
Amy
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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3greatkids
Frequent Contributor (1K+ posts)
Member # 3838
posted
Gosh,I don't see how these kids do it?
Did you reeive your teen handbook when they were born.I didn't thank goodness,I probably would have said adios!Or else payback time is here for sure!
If you have neuro Lyme,you should know what she is feeling,could you endure a heavy backpack,test upon test,push,push,push and still get better?
They need time to heal,sleep.I would not want to be a kid in school now. ************ to the point where she can't memorize anything, and has very little reading comprehension. Not to mention having horrific emotional outbursts, worse than the typical teen's.am36 ************* Help! I feel she is throwing away her life. In our country there are matricualtion exams starting from the 9th grade!!am36 ************
Poor thing!She is sick and needs to study at her own pace.Depression comes w/ Lyme as does fog,rage,etc,etc...add that w/ raging teen hormones.....ya ya ya!
How can she have a life if she is sick and does not get time to heal????If she is like this now,imagine how worse it will be when she reaches senior year!?
I'm not advocating letting her turn into a zombie,but w/ neuro...man...she is slipping and needs help.Help her!
So what if it takes her one more year to reach senior year.
ON- LINE schools are GREAT!!!!!!!Maybe she could fill in w/ those and then have credits sent to her high school when she is able to meet the challenge?Do basics,let her go w/ a few classes for awhile.
Do you have any Charter schools?
Imagine walking in a noisy school,lights glaring on you all day,having to be on time and not remembering where you are suppose to go.Writing everything down and then some...and still that does not work.Having Lyme can bring on the brain fog.Yes,kids space out,but to have Lyme and be called a low achiever.
Chilling at home/healing,no pressure will heal them faster.Tutors,yes,just cutting back to the basics.
She will learn just as much,if not more.
Dealing w/ the public school sysytem is a pain and often times do not provide what they say they will.We have testing in the 3rd grade,kids a peeing in their pants already,freaking out.
I'd homeschool,check in w/ the state,make it proper,get her the care w/ an LLMD she needs.Keeping her in touch w/ friends and activties,weekend events.
Just let her know you believe in her,take the pressure off,let her heal and study at her own pace.She can do it.I know it is scary,thinking of not being in the school setting,but she can thrive.
When she is better,enroll her back in...I bet her grades will be better than most.
If you can not do that,then she should be able to do half days w/ built in study hall.Demand the most from your school for your child.If need be.
You have to stand up for her.If it is public school,well make them do it.Don't back down and never let anyone tell her she doesn't care.She just wants to feel better.Lyme stinks and no child should have to ever suffer from this nasty disease.The ones that do....well,they are wise,they develope a special wisdom,special compassion.
The worst day in my life was when my son proclaimed he was not going to go back to public school!Looking back,it was the best decision ever. He remained in the social scene,but the independence,knowledge he gained is priceless. ********************************** What Every Parent Needs to Know About Educating Their Child With Chronic Lyme Disease
By Alfred C. Tagliabue, M. Ed.
Director of Student Personnel and Community Services, (Retired) Jackson Township, New Jersey
More often than not children who contract Lyme Disease are treated with antibiotics for a few months and do not require any additional educational supports or services to make up for lost time in school. This is the rule for the majority of children who contract Lyme Disease, however there are many children who have a difficult time responding to standard treatments, for any number of reasons, and other children who become re-infected one or more times.
These children are considered to have ``Chronic Lyme Disease''. They have a multitude of symptoms and problems that make it impossible to keep up with their schoolwork without special accommodations and services from their teachers and school. It is important to note that some physicians in the medical establishment do not recognize the term ``Chronic'' Lyme Disease. Some school physicians are among those who do not recognize the term ``chronic'' when dealing with students who have Lyme Disease.
If your child suffers from Lyme Disease and needs special education services or accommodations you may get a hard time from your school district if your local director of special education either had the disease or knows someone close to them who had the disease and was cured with a couple of months of antibiotics. These people are among the lucky majority that never become re-infected and respond positively to standard antibiotic therapy. This article however, will deal with those students who do not respond well to standard treatment and have a variety of needs for special education services and or accommodations in the classroom.
While all states have their own special education laws there are two federal laws that protect students with Lyme Disease and supercede state code and regulations.
The first law that parents need to become familiar with is the Individuals with Disabilities Education Act or IDEA. This law deals with all students who have some form of disability. Students with Chronic Lyme Disease may fit several different categories depending on how severe the Lyme Disease has impacted on the child's ability to profit from regular education. Some classifications or categories could be ``chronically ill''; ``other health impaired'' or ``learning disabled''.
You will need to obtain a copy of your state's special education code and read it carefully in order to become an active participant in the decision making process for your child. Many states have slightly different categories and definitions than those given in IDEA. Remember that, the IDEA law supercedes all state special education laws except when the state law is more protective of your child's rights or offers more services. It is also possible to have your child qualify under other more intense terms such as ``multiple disabilities'' or other categories depending on how the disease manifests itself at a particular time during the course of the disease.
There can be, in extreme cases, both neurological and psychiatric problems that may require additional medical and educational treatment. A ``red flag'' for parents when dealing with their school or school district, would be a suggestion to classify a child with Chronic Lyme Disease as ``orthopedically disabled''.
This would show some archaic thinking on the school's part if they believed that Lyme Disease was like arthritis. The most significant educational impact of Lyme Disease lies with lack of vitality to produce schoolwork, the ability to focus and sustain attention, memory and the overall ability to process and syntheses what is being taught. If a child with Lyme Disease had some severe orthopedic symptoms they would most likely also have some of the learning problems as well and this would qualify under the term ``multiple disabilities''.
Children with Chronic Lyme Disease can have a multitude of symptoms. These symptoms can change week to week, day to day and sometimes hour to hour. Every child is different, so parents and school special education committees (child study teams, etc.) need to listen carefully to both the students and the family physician that is treating the student for the disease. Some children have their REM sleep interrupted by the disease and would have significantly more functional learning disabilities in the morning.
I have found that allowing them to stay home in the morning and bringing them in at lunchtime provides them with a greater vitality needed for learning. I would then provide home instruction between 4 and 7 PM for the subjects that were missed in the morning. This may continue for a few weeks or many months depending on the success of the medical treatment. A very common problem for these students is the inability to focus and attend. In fact some children with Lyme Disease have been misdiagnosed with ADD or ADHD and have been treated with Ritalin.
It is important to remember that Lyme Disease is diagnosed by excluding other diseases and disorders since there is still no 100% accurate test for Lyme Disease. Another very common problem is memory loss and the ability to organize one's schoolwork. Any insult to the central nervous system can cause memory problems and once again the student's abilities can change day to day or hour to hour.
Motivation is also a key factor to learning. When children don't feel well they will have a tendency to become depressed and develop feelings of hopelessness. This will have a negative impact on their ability to perform academically. Children with Lyme Disease have been accused of ``faking it'', trying to get out of homework and generally trying to beat the educational system.
Educators need to fully understand all of the neurological and psychiatric implications of Lyme Disease and they need to understand that the children would much rather be well than to be sick. Whenever you deal with a person with a disability you should provide them with an educational program that not only meets their needs but also provides them all the experiences and opportunities that a child without disabilities would encounter. Children with Lyme Disease should lead as full and as normal life as they are capable given their individual symptoms and the severity of those symptoms at any given time.
The second federal law that is applicable to students with Lyme Disease is Section 504 of the 1973 Rehabilitation Act. This is not educational law. It is primarily civil rights legislation that prevents students from discrimination, if they have some type of disability that substantially limits the child's ability to learn. School districts and parents together can decide which of these codes and format could best serve the child.
While there are whole day workshops on the differences and similarities between Section 504 and IDEA I will attempt to highlight some issues to keep in mind. As a former public school special education administrator I based the decision of whether to provide service to a student under Section 504 or IDEA on the projected outcome and level of service that could be reasonable assumed for a given student.
For example if a child only need some classroom accommodations and some home work modifications that could be performed by the regular classroom teacher I would prefer to see that child served under Section 504. While Section 504 requires a written plan signed by the parent, as does IDEA, there are far less procedural issues and students can be served faster than through IDEA in general. The written 504 plan itself is less complicated, faster and easier to write than an IDEA plan. Parents need to remember that all IDEA students are 504 students but not all 504 students are qualified under IDEA.
There can be some cases that that 504 students would not qualify under IDEA but these cases are rare. However, students with Lyme Disease often fit into these rare situations, primarily due to their ever-shifting medical and educational condition.
In general any service or program that can be delivered through IDEA and also be delivered through Section 504. In most cases districts would prefer using IDEA rather than Section 504 since there is no state or federal financial aid available to school districts through Section 504.
As I mentioned above, as a special education administrator, I would prefer that a child who would need special transportation, tutoring or other services that would increase their cost of education, be handled through IDEA. If a student's needs can be met with accommodations and modifications that do not involve extra expenses to the school district, I have always felt that Section 504 was a quicker way to go without compromising the quality of service provided or the student's/parent's due process rights.
Parents basically have the same ``Due Process Rights'' if they become in conflict with their school district with IDEA and Section 504. Most state departments of education use the same conflict resolution procedures for both IDEA and Section 504. You need to check these state procedures with your state department of education.
Ultimately the United States Department of Education, Office of Civil Rights will hear both IDEA and Section 504 complaints against school districts. You can call your state department of education to get the address and phone number of your nearest U.S. Department of Education, Office of Civil Rights. If you are reading this and saying to yourself `` This seems fine if my child is in public education but my child attends a private or religious school''.
You are correct in thinking that all of this is may not apply. Times are changing. Since the ``1990 Americans with Disability Act'' the rights of all students, public, private, religious and even home schooled children have been expanded through various court cases. I recently read a federal court decision in which the judge reinstated a preschool child with disabilities back into a private preschool program that had recently dismissed the child. Most states have child advocacy organizations that can provide some guidance in conflict resolution or direct you to where you can obtain legal advice. I have found two Internet sites that can be very helpful.
One is [http://www.ideapractices.org/]. This site contains the entire 1997 edition of the Individuals with Disabilities Education Act and Regulations, which can be downloaded and printed.
The second site is [http://www.504idea.org/]. This site contains the entire text of Section 504 of the 1973 Rehabilitation Act (which again, can be downloaded and printed) and gives a detailed comparison between IDEA and Section 504. This data will make you an informed participant when making educational decisions for your child.
"It is one of the most beautiful compensations of this life that no man can sincerely try to help another without helping himself".
Ralph Waldo Emerson
Good Luck, don't beat her down,help her to hold her head up high,get well and then go get em!!!!
Posts: 1076 | Registered: Apr 2003
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I myself had to drop out of school (distance learning!)a few years ago. Dreaming about being able to go back.
I don't think, according to the law here, that she has to be in school at all for high school.
She had a long hard adjustment to our overseas move 5 years ago, and is finally blossoming in terms of adjustment.
She is a dance major at her school-a specialized creative arts school- and loves this aspect. This is after a few years of very very bad school experience.
She wants to feel "normal" (don't we all??), and leaving school now will not contribute to that.
She still hangs out with her friends on days she felt to unwell in the mornings, which raises some eyebrows.
What we're going to have to do is to sit down and have a meeting including all the powers to be, and cook up a plan. thanks to all
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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3greatkids
Frequent Contributor (1K+ posts)
Member # 3838
posted
I'm sure you will come up with the best possible plan ever!
It is hard,figuring out how much is teen AM,uh,I can't get moving and how much could be Lyme.
Lyme is rough on those AM risers.Teens + mornings=help anyway!
Keep her dancing...that is her passion!As long as she has that,everything else will fall into place.
She sounds like an super girl.Glad she has lots of friends.She's got half the battle tackled!On top of that,she wasn't born w/ two left feet.
Tell her the Rockets came to our school for a class.That was fun.The girls here then go to NYC to have the grande tour.
Things will work out!Life seems like it is out of control sometimes.A deep breathe and a step back helps.Adding Lyme to the mix,gosh,how much is a mother suppose to take?
Go get em dancing girl!Keep us posted.
Posts: 1076 | Registered: Apr 2003
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
My son was a freshman when his lyme/babs hit. Pulled him right out of school and they sent a teacher/mentor to the home a couple days a week, a couple hours each time. He took his core subjects only. This lasted about7 months and then he returned to school half days to complete the year.
The rest he's making up gradually now, extra course load, summer school and now he's right on target to graduate with his class. A lot of assignments can be sent via e-mail as well or edline.
The most important thing is to get children well first, school is secondary. I can't stress this enough. They can always make up the work. I agree with lymetoo, sure sounds like bartonella is in play here as well.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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