Is there an online resource for teens with Lyme Disease? Specifically I am trying to find help with how to get my daughter through school.
She just began HS and is extremely strong academically. But she is too unwell to be able to attend school on a regular basis. She also has severe cognitive dysfunction and poor short term memory. This results in her doing her HW but not being able to find it and then actually doubting that she did it. Even though she is classified "other health impaired' we are getting very little help from the school.
Since the beginning of this school year she has been on an amended schedule which has her going in from 11:10 to 2:30 and then getting home tutoring on some afternoons. Just this week alone (3 days) she's not been able to get in for her classes. She is missing the all important Science Labs that cannot be made up and falling behind in Math.
My daughter was a star athlete and on all the after school teams. She was in all the school andd community plays and musicals. Since becoming sick she's slowly lost almost everything (even her old friends as now she's fallen in with a somewhhat unsavory crew since she is not on the teams or involved in acting anymore.) She desperately wants to be in school and be involved as she is very social but.... it's just not working. Should I get her on Homebound at this point?
At our last CSE meeting the Guidance Counselor brought up "residential"! Jeez! That means they are thinking she sould be sent away? Even with her diagnosis' (CFIDS, NMH and now Lyme) the school seems to think she is suffering from more of a behavioral problem than a physical illness. She even got detention last week. She had been in the nurses office feeling unwell. She laid there for one period then the nurse sent her back to class. She as still feeling unwell but didn't want to go back to the nurse so she went to the Main Office and asked if she could sit in there. The Office lady told her that was fine but then the Principal ended up saying she was "cutting" class and gave her an In School Suspension for the next day! So that meant she had to go in and sit in ISS for the whole day and miss classes again! That's insane! I went in with my daughters advocate and fought it but it just seems there are so many roadblocks and difficulties and I just can't take any more problems for my child.
HELP!!!!! Any thoughts, ideas, etc.... would be greatly appreciated. I am at the end of my rope and I hate to see my baby suffering like this!
Posted by theviewfromthecurb (Member # 10310) on :
I feel for you and your daughter, and it's so sad that when were sick, the "un-sick" put us through more stress, as if they have a right, and seemingly without any compassion.
My son missed a lot of school before being diagnosed, and then during the worse part of the treatments... to let you know, after one and a half years of antibiotics, he is much better and attending school regularly.
He was 6 when he first got it, so I know school is a lot different for your daughter as a freshmen in highschool...
however, in my support group, (i live in CA.) there are a few kids in high school that were home tutored during the time of sickness... is this an option? because the stress put upon your daughter is only making it worse...
trying to defend, or make others understand only
exhausts both of you, not to mention useless...
it's like they "get it" or they dont... and your school doesn't! most don't.
I think if possible, you remove the stress in her
life, which is the pressure of school and it's
expectations of what she was, and cannot be now, until she's better...
I know there are full time tutors that can come
and teach her from home, and on days that she
feels well, she can be social in other ways with
her friends... like a movie or whatever. Isolation
is not a good thing, so i think it's important to
make sure she still has friends in her life.
Also, i know on the internet that there are
resources where you can get all the information
required for highschool studies...I used to live
in the local mountains here and there were many
home schooled kids and that's how they got the
ciriculum for each week...
I am assuming she is on the right medication to get better and you have a good doctor? good luck to you,take care.
Posted by lymemomtooo (Member # 5396) on :
I am just sick that other children have to go thru this..
ANd on the news they just mentioned something unrelated about Johns Hopkins..What a joke..I know I have gone past the school issue but if the Drs there got off their butts and clensed their brains of the Steere crap, by now they would have helped to save our kids..NOt to keep them having to fight for their education.
I have been in these trenches and they are horrible..
I am pretty wiped from my daughter's llmd visit, etc...But I think you will find a lot of help if you do a top search and print in school issues, IEP's or 504 plans..There should be volumns of info from MO and others..But you must go further back than 30 days..Some from the last 2 years.
Posted by jblral (Member # 8836) on :
Kristina, my heart goes out to you and your daughter. I'm also dealing with a teen girl with lyme--and school issues. One recommendation: contact the California Lyme Disease Association (even if you're not in California) and purchase their "children's education issue" of the Lyme Times. (The website is www.lymedisease.org). The education issue walks you through many of the options and challenges lyme kids face with school, and offers interesting suggestions for how to deal with them. Depending on your daughter's circumstances, you might want to get a 504 or an IEP (contracts with the school district to accommodate your child's needs.) One agreement I have with my daughter's school is that she can call me immediately (on her cell phone!)if she's feeling bad, and I'll come get her. (No questions asked. Nobody sending her back to class and telling her to buck up.)Best of luck to you both. Dorothy
Posted by fatigued15 (Member # 6437) on :
Sent you a PM. I am in NYS too.
Posted by char (Member # 8315) on :
Hi,
Sorry that school district is giving you such a hard time.
We were only able to get 3 hrs a wk tutoring from school, which was not adequate for my 2 in similar situation to your daughter.
We had mtg with superintendent at our insistence. These was ultimately extremely helpful as it exposed the fact that she was not going to help us. So we faced choice of resorting to legal action. For us, it was not worth the energy and money-we felt that it was not in our kids best interest to attend these local schools if teachers and administrators had so little knowledge and empathy.
My kids are young-7th grade son and daughter is 15. She only earned one credit last yr so if she reenters public school, it will be as a 9th grader again. We spent a year going round and round with both jr and sr high.
We would have been more motivated to fight the system had she been jr or sr at time.
We are homeschooling for now. My highschooler is enrolled in Keystone on-line highschool. The local school district accepts all credits from them, which keeps the option of returning to school open.
The courses are well laid out, with comprehension questions after each 5 pg section, then short quizzes prepare for unit tests over like 50pgs.
Extremely straight forward set up is helping my girl to be very successful in learning the material.
Another advantage is that we can take one or more courses at a time. For example, she is taking 2 right now. She will finish them before the end of the school year and then start the next ones. For her focusing on a few helps with cognitive problems. It is a boost to see progress and success with a few as when you work in many you get or feel behind in all.
No energy wasted in trying to understand school assignments and projects where you really need to be present in class to grasp what is needed.
Also, no stress to get dressed or even get our of bed.
It was hard on my daughter to let go of her desire to attend school this yr. But she is content and happy now as she is accepting the fact that it just isn't best or possible to go to school right now and door is not shut for future attendance and diploma. I think she is enjoying the chance to learn and be successful rather than be scattered. She is able to get out to church teen activities, which she could not with going to school. Also was hard to hide the fact from her that we were struggling with school and that they didn't want to help her.
This got long. I hope my comments are not discouraging. I do not know how sick your daughter is. It is real hard to make decisions when recovery is so unpredictable. I feel for you and hope you take all this just as something to consider.
Best Wishes,
Char
Posted by JeffM (Member # 8919) on :
Hi, I used to be a director of special education. And I have a daughter who became ill with lyme @ 9, and lost all her abilities to walk, talk, think, speak and swallow. She was only diagnosed last year. Before then, she was diagnosed with an "unknown neurodegenerative disease".
If you child has an IEP under Other Health Impaired, she is entitled to service, including tutoring or in home services, if her illness is causing her to not keep up with standards and not progress in school.
The school also may not understand how an infectious disease can cause learning problems that come and go, and behavioral problems. So if they don't understand her disease,e how can they understand her, and her educational needs? Someone smart and open needs to focus on HER and advocate for her (a psychologist at the school????)
If you have ideas you should call an IEP team meeting. You may need to demand if you feel clearly and you understand her needs better than the school team does.
If she is having behavioral problems, and has an IEP, the school is obligated by law to develop Behavior Plans, in writing, to address her needs. In my experience, these plans for lymies are not always so good, because really trying to intervene in an infectious disease through behavioral/educational methods is fruitless.
At the same time, I need to confess that we spoiled our daughter when she was so sick, and thought she was going to die. She did not die, is 19, very sick, but regained many of her abilities. And so now she is also immature, spoiled and it is causing a lot of life problems for her. In hindsight, it would have been better if we gave her more natural consequences, and held the line more with her. In the end, it is a judgment call about what your daughter is doing wrong .. . is it caused by lyme, by being a teenager, by emotional reaction to being sick, and/or another disorder that has cropped up.
I wish you luck. I advocate communication, communication, communication with the school. Don't expect them to do their job all the time, espeically high school. But then, after a few months, if they don't respond, you may have to "fight". Ugh.
Good luck.
Posted by mlkeen (Member # 1260) on :
I don't have the magic solution to getting a sick child thru school.
We ended up doing most of the tutoring. I was too sick too fight the school for services. At my son's sickest, we did his work with him so he could get work in "on time" and not receive Fs. His test scores were mostly B-C so we knew the material was going in, he was just too sick to do homework.
Jeff, spoiled and selfish is the nature of 19 year old girls. My non-lyme daughter (22) is by far harder to deal with than her, now well, 17 yo brother. I've been told by teachers older and wiser than me that by age 25 she should become tolerable again. Please don't beat yourself up.
I have heard it thru the family gragevine that my daughter would actually like to come to Thanksgivng dinner at my house this year. I'm still in shock. I think when they are VERY bright they become little princesses and need to have life teach them otherwise.
Mel
Posted by strongerangel (Member # 10037) on :
This is a radical idea, but would you consider enrolling her in a private school? This is just coming from my point of view--I'm a 2nd yr senior now, and struggling to finally graduate. I'm lucky enough to be in a very small school. The community is very tight-knit, the staff is caring and very considerate of my position. Because my school is so small, it's easy to work with the teachers/the headmaster/the guidance counselor to work out a plan that fits my needs, whether it involves taking tests home, making sure I'm not too overwhelmed after absences, etc. Sure, at the beginning some teachers had problems with the "precedents" I set, but their boss whipped them into shape pretty quickly. Because your daughter has just started high school, I think now is the time to change, if you're going to, so she has a solid 3.5 yrs at least to find her social niche. Obviously, there's the financial burden to consider, but each school will probably have its own financial aid package. I don't know the extent of your daughter's illness, whether she may need to make up a year or so at school when she gets better, but that's just my suggestion, as a teenage girl with Lyme who used to be in a public system but is now at a private school. Either way, I hope you find a nice (enough) solution to your dilemma, and I feel for you guys. I really do. Posted by ma (Member # 10055) on :
I sent you a PM
Posted by Stardantzer (Member # 3681) on :
quote:Originally posted by theviewfromthecurb: I feel for you and your daughter, and it's so sad that when were sick, the "un-sick" put us through more stress, as if they have a right, and seemingly without any compassion.
My son missed a lot of school before being diagnosed, and then during the worse part of the treatments... to let you know, after one and a half years of antibiotics, he is much better and attending school regularly.v
That is WONDERFUL!
quote:He was 6 when he first got it, so I know school is a lot different for your daughter as a freshmen in highschool...
Yes that's what worries me... it's all so importnant in HS.
quote:[b]however, in my support group, (i live in CA.) there are a few kids in high school that were home tutored during the time of sickness... is this an option?
It is an option. I have just been trying to keep her in school as much as possible but I think its just getting too difficult.
quote:because the stress put upon your daughter is only making it worse...
True... I know I have to take that into account.
quote:trying to defend, or make others understand only
exhausts both of you, not to mention useless...
it's like they "get it" or they dont... and your school doesn't! most don't.
Yes, it's just that she is so social and loves to be in school. So it's tough to tell her she can't go anymore.
quote:I think if possible, you remove the stress in her
life, which is the pressure of school and it's
expectations of what she was, and cannot be now, until she's better...
I know there are full time tutors that can come
and teach her from home, and on days that she
feels well, she can be social in other ways with
her friends... like a movie or whatever. Isolation
is not a good thing, so i think it's important to
make sure she still has friends in her life.
Also, i know on the internet that there are
resources where you can get all the information
required for highschool studies...I used to live
in the local mountains here and there were many
home schooled kids and that's how they got the
ciriculum for each week...
I am assuming she is on the right medication to get better and you have a good doctor? good luck to you,take care.
We started her on Bactrim but after a few days she had a horrible stomach reaction that we are still waiting for it to pass. When her tummy is better she's to start on Zithromax. And yes, I believe we see one of the best pediatric LLMD's in CT.
Posted by MommaK (Member # 10376) on :
I empathize with your school situation. My daughter was a junior when she became ill and luckily we already had a great working relationship with many teachers and administrators who knew my dd was not a slacker. Most teachers were understanding (because they were educated about our situation), it was the students that could be cruel. At first the rumors were wild! I worked hard to spread the accurate positive information through the teachers and youth ministers to the kids. The school suggested homebound and dropping down to regular classes and reducing the class load. At first my dd thought the school was cheating her because she did not want to give in and settle for less than she was use to achieving. It took several months of missing school most of the time for her realize she was going to be lucky to just graduate on time and to forget about the AP and accellerated classes. The disease is the enemy not the school or the people! She became homebound just about the time school let out. However she wasn't able to concentrate on more than one class at at time. She got the OK to work on one subject at a time and did one on the internet at her own pace. Sometimes she would not be able to get anything done for a week and then when she would feel better, over do it because she didn't know how many more days it would be until another day she was able to do any work. Most of the tutors have been great and flexible to work with her when she is able. Although one (who had never tutored homebound kids before) kept pushing her too hard, but I was finally able to convince her of my dd's illness and that she was not taking advantage of the situation. Taking the pressure of deadlines off of her did the most good. She was putting too much pressure on herself also. I would have to tell her that she could drop out of school, wait 30 days to get a GED and go on to college on her ACT scores (never really wanting her to choose that route.) Just knowing she wasn't backed up against a wall took pressure off and allowed her to succeed. When school started this fall she was determined to go to school her senior year even though she is still finishing up some classes from last year. Now she goes to school one class each day. We choose the first period to help keep her sleep cycle more normal after working on that so hard. Although most days she comes home and takes a nap until the time school lets out then does homework or trys to meet with a tutor.
I think one of the best things we did was to talk to everyone at the school involved and asked them for their help and suggestions to help my dd succeed. We asked each one individually how best to communicate with them, and have kept the lines of communication open. We never set up a 504 or IEP, although I researched them and think we could have pursued it. My dd was already a junior and luckily the guidance councelor's goal was to solve all problems the quick and easy way to get her graduated on time! (although somedays it really felt like she was just trying to get my dd's file off her desk) I wish I could remember where I read some good advice about working as a team with the school instead of going in and demanding things. I'm so glad I didn't insist on a formal plan in our case. I may change my mind later is I need documentation for special services in college, but I'm sure the folks on our team at school would provide and letters of documentation if needed. Sorry so long! Good luck!
Posted by MommaK (Member # 10376) on :
We did consider home schooling, but found out that as long as my dd had a medical excuse she had that many more days plus one to make up her work. As far as the Dr is concerned she has an ongoing medical excuse! The school district doesn't count the days in the summer, a great time to catch up! When the school district saw she had missed so many days of school medically excused, they provided the homebound tutors. They were glad to spread the expense out when we asked to do one class at a time. Also when we wanted to try a combination of in school and homebound they agreed to that, less tutors to hire! Check out www.lymesucks.org, your daughter should check it out also!
Posted by giftoflife (Member # 6748) on :
So sorry to hear of the problems you are having.My son went 1 year of being misdiagnosed. Missed the last 3 months of 6th grade, and was tutored at home for 1 year in 7 th grade.My suggestions woulf be to first contact your local and states representatives for support. Also show the school copies of the Lyme diagnosis from your Doc. If necessary have him write a letter explaining complications that affects your daughters ability to stay in school. The lights alone can make her sick. My son was a jock to. He hasn't touched a baseball or basketball since this all began. It's not that he can't, he just doesn't feel comfortable anymore. LYME SUCKS. Has your daughter had neuro testing to see where the Lyme is hiding? If not, I can suggest a Doc close to you who specializes in this. If she has had testing show it to the school. There is no nedd for your daughter to be treated like this. If worse comes to worse I would threaten a law suit. May be that will get them moving and give you the support that you so desperately need. Good luck and if you need more info. I can e-mail you.(I'm from Mass.) My prayers are with you. Gift
Posted by lucy96734 (Member # 8372) on :
What Jeff said- if you already have her on an IEP for Other Health Impaired and you are not happy with the services you can call an IEP meeting and have her program changed. The team (which includes you) details how she will meet her individual goals, how she will be excluded from the general education curriculum if at all, what aides and services she needs to get access to the general education curriculum, and it sounds like she may also need a positive behavior support plan.
You have a ton of rights as a parent of a child with a documented disability (if you already have an IEP you are). Know them and demand them. School's often give in if you push the issue because it is also cheaper for them to not go to fair hearing or beyond to prove that they are providing the appropriate education for your child.
Request a meeting and lay out what you need for your child. Be cooperative but also know what is best for your child.
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