hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
We're tired of fighting the ignornance of this disease.
Now we can concentrate on our child's healing.
It's sad. Kids not only lose their health, and friends; they lose their education.
Parents, get an attorney early in the game if you feel you may need one. We would have avoided much harassment and lost time if we had done so earlier.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
posted
I am so very sorry that it has come to this...The ignorance is unbelievable!
You are in my thoughts and prayers!!!
Keep fighting, Laura
Posts: 232 | From MN | Registered: Jul 2007
| IP: Logged |
btmb03
Unregistered
posted
Hshbmom: So sorry to hear about this but do NOT see this as a defeat--in fact focusing on helping your child IS the best thing you can do right now.
Negativity in our lives is TOXIC whether it be the medical, school, any other system including families, relationships.
Focusing on healing will get you farther in the long run. You and your family are also in my prayers....
IP: Logged |
you know we went through this too. but we had excellent advocacy and attorney's from the very beginning, reports, evals, many times over in credentialed, research-based documentation than most any disability case.
even had a great IEP written - and a TBI (Traumatic brain Injury) IEP classification related to Lyme. (a national advocacy 1st, i believe)
in the end, it didn't matter, because the day to day (so many staff involved, especially with teens) plus the adversarial money minded mind-set of administrations; (they know that even tho the "law" is on your side, it's impossible to truly enact it without going to lengthy and grueling hearing proceedings)
because of all that and more, lawyers didn't matter, morality surely didn't matter, laws didn't matter, and at times.. basic human rights didn't matter.
so -- in the end, i would advise almost any case where a child has innate strengths, yet is too ill with this disease to make it through with minimal accommodations at school - that it truly is best to put together as many private supports as you can and educate "alternatively".
this advise is starkly against this country's so-called "educational law", but what many who advocate for children by profession don't understand is that in real life on the ground, and considering the negative impact on your child's life while you battle for "appropriate education" these laws are meaningless.
this happens with all learning disabilities, not just lyme, mind you.
until major bureaucratic revolution occurs, this is the way it is in american education. if you don't fit within a very small box in this generation, you are pushed down, or out.
i say this because we tried everything with terrific backing, and my son was still heinously dis serviced. it wasn't worth the fight. i made the mistake of believing in the laws. schools don't follow the law.
IMO, you are best to find alternative means sooner than later, and focus on healing and anything and everything that supports your child in a real way.
this is not easy either, but at least you are not fighting an agency that will not bend, you are putting your energy directly into your child's future, minus the fighting.
the fighting is what drains you both more than you can afford.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
So sorry it came to this, but now you can focus your energy and hers on treating Lyme and finding less toxic ways to educate her.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
bettyg
Unregistered
posted
mom, on the decision you had to make today in order to get your daughter the health care she DESERVES!
crappy school system treating all the lyme/co-infection kids who need kindness, understanding, etc.
IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Thanks for the encouragement from all of you.
It makes me sick to do this. I need to toss my rose-colored glasses.
I know it's best in the bigger scheme of things.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
posted
My daughter was too ill to attend school, she had a home tutor, who was very understanding and let her get by with the most minimal work load possible. I'm so sorry it came to this for you, but your child will be better off for it in the future.
God bless.
Posts: 371 | From CT | Registered: Jun 2008
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
hsh, I'm sorry to hear about this.
I will have you and your family in my thoughts and prayers. Things happen for a reason, and I bet this just means really good things in the future like her getting healthier sooner, etc.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
So sorry hshbmom.
I hope this takes away some of the stress and so you all can heal better.
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
So sorry you are going through this.
I had to homeschool my son throughout his illness. He is much better today, but I am afraid that the stress of school would cause him to have a relapse.
This disease really stinks, it really takes away a lot from all of us.
Hang in there..
-------------------- God Bless You! Everything..is just my opinion. Posts: 6638 | From Michigan | Registered: Jun 2001
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Congratulations for making a very strong decision. When I pulled my son from school in Jr High, I was incredibly nervous. Thought I would ruin my son for ever. But that was not the case.
We were able to focus on his health. He was able to focus on his favorite subjects to have some success after such a struggle at school. And he is not a victim of peer pressure at all. That was a wonderful bonus.
Plug into a local homeschool group. Typically they have support people to help new homeshoolers.
Instead of taking multiple subjects at once as in school. We worked on one subject at a time. It helped his concentration to only deal with one subject.
Good luck. Ask questions. You can do it. This is not a failure, it is a great success. Kudos!
Best, Karen
Posts: 1686 | From Maine | Registered: Jun 2004
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter did online classes. It was a struggle to even do that!
Finally, the last year of high school, we had to have her stay home.
We were fortunate at that time the district opened an alternative school and they were very flexible with her needs.
Let your child know that sometimes the world has to stop, and it is not a defeat.
My daughter is starting her fourth semester with classes at the community college. She can't drive, and college is much more flexible than K-12.
I believe that she is able to do this BECAUSE she took the time to just let her body deal with the trauma of treatment.
Don't feel guilt, mom. You are doing the right thing.
Just for funzies, why don't you right the Superintendent of Public Instruction in your state, or whoever is in charge of education. Children with cancer are accommodated, why not Lyme?
Even if you child can have ONE tutor for ONE class, it could help.
posted
The school should be a place of support and learning how to overcome problems! But instead it has become primarily a center for 'behavior modification'... and pressure to "conform". Everybody learns exactly the same thing; the same skills, the same way they're supposed to think. If I grew up in the present system I would have no doubt been labeled 'a.d.d.' and 'hyperactive' and all sorts of other things, and would have been sent to ...'special classes' where learning is especially hard. I know-- I oughtta go back into education and try to do something about it... But, it's out of control; too far gone; it's going to take a long period of revaluation, and increased responsibility on the part of teachers, students, and parents. We must start now to head in the right direction. We must keep in mind that sometimnes "less is more". Indeed, it's very difficult; there are many aspects to think of... but the need for a new direction is clear!
It's no surprise that students with lyme have a very tough time with this compromised system. For the moment, all each family can do is optimize the chances that their children will somehow manage to get something out of their experience-- a combination of humor, support, and attempted communication seems in order... ... And perhaps some letters to the editor, too. Good luck, from the heart.... DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
| IP: Logged |
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I think you'll find you did your child a BIG FAVOR by getting them out of public school!!
Homeschooling groups are soooo supportive! Lots of outings, etc., if you want to engage that way.
Also, there are good programs online. Some of my friends run one that is excellent, and lets--no, encourages--the students to learn from something that they are truly interested in--even a novel! They call it "integrative learning," and can teach civics, vocabulary, spelling, math, science, etc., all around one or two books that truly interest the child! WOW!
PM me for details, if you want them.
Wish you and your family the very best!
Yours,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
| IP: Logged |
bettyg
Unregistered
posted
mom,
i have an idea for you/other parents on this thread who have had/are going thru same thing.
go to ACTIVISM, TOP POST BY ERIC, on OBAMA; we have opportunity to sound off with what we want to see CHANGED in govt.
we have been addressing LYME issues, and this could go there in HEALTH, BUT ALSO EDUCATION ??
would one of you start something there and then come here to mom's post and show direct link so others can go VOTE ON SUBJECT and then add their own feedback ? big thanks!!
TOP 10 SUBJECTS will be what obama's team will tackle after inauguration!! KEEP YOUR FINGERS CROSSED!
IP: Logged |
posted
Sounds like a wise decision. We are struggling with homebound and getting lots of pressure to meet deadlines that our teenager is just not able to meet.
I wish you and your daughter all the best! Our LLMD has always said, "health first, school second." I agree, your child's recovery is the most important aspect and has to be given priority.
Good luck, Suzy
Posts: 260 | From Virginia | Registered: Jul 2004
| IP: Logged |
clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
We switched schools when my daughter was 12 because her illness began causing social problems/ostracizing. Her symptoms turned psychological almost overnite. I wasn't sure about her future at the new school, but with some treatment that summer her neuro issues stablized.
But I have always been prepared to take her out of school. In fact, I would prefer that she stay at home for at least one semester so that we can give her full strength LD treatment as opposed to a mild protocol. But I am overruled by the other members of my family (including my teen).
Even in a private school, however, the social issues exist. Kids are not typically very compassionate. Homeschooling seems like a perfect solution for some of our children with LD. A friend homeschooled her children and they are doing well academically and socially.
This move feels very positive.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Been there..Didn't do home school, did homebound and then partial school. It was Hell..
Prayers to all of you dealing with this..
Right now, I am fighting thru our daughters partial relaspse..
Ticks should be exterminated...lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
posted
We homeschooled for over 20 years. We found that even if they don't do all the school things, they still learn from whatever they and the family are able to do. They do follow their interests! I was not well enough to take part in most of the homeschool activities available, but they are doing very well as adults and in college. There is hope!
-------------------- "His faithful love endures forever." Psalm 136 Posts: 189 | From MN | Registered: Dec 2007
| IP: Logged |
posted
As some of you know, my teen has babesiosis and bartonella. Tick bites were in Spring of 2006.
2007 had "weird" symptoms. Child became very ill with neurological symptoms and POTS last year about this time. Going to school wasn't really an option. Kid couldn't stand, much less walk. School attendance ended in Feb 2008.
We were very fortunate to have a school district that provided tutoring at whatever level the child could tolerate. As health improved through treatment of symptoms, amount of tutoring increased. You are all correct that our systems for coping with sick people, kids or adults, needs to improve.
Just about every physician has told me that the extra added stress of school/work can set a patient back in therapy. So don't feel badly about stepping off the treadmill, if it is possible. Eliminating these stresses can give the body's system a chance to concentrate on the illness.
We feel especially bad for our kids. This is the time when they should be enjoying learning and being with friends. Unfortunately, this has to go on hold until the health improves.
Finally got to a good LLMD and got a proper diagnosis in September. Three months of therapy after two years of illness, symptoms have decreased, and my teen is easing back into 8th grade life. Attending classes a few hours a week.
So take heart! Having your child home will give you the chance to focus on healing and may give you some therapy options that are difficult to carry out in the school setting.
Best Wishes for improving health!
Posts: 170 | From New Jersey | Registered: Jun 2008
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Three months of therapy?!!! Everyone should be so lucky. Count your blessings.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I'm going to schedule the long overdue physical therapy! My child has a prescription for two months of pool therapy.
I didn't do it before because she was so exhausted from this illness and the demands of school.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
Even though it seems like a not so good thing...taking her out of school...I bet in some ways your daughter is relieved....
when we told our daughter (who has lyme/erlich) that it was ok to take the year off of school (college)... we all had mixed emotions.... she was sad....she felt like a failure. We were sad...but all of us felt a sense of relief too...
concentrating on her health is #1.... if our daughter isn't well then she can't succeed in anything....
... feeling like a failure comes with this disease...your constantly trying....fighting...
Physical Therapy would be great for her.........I've been in PT for 9 weeks and it has made a difference....it's a positive for her...something besides taking pills...
Time to move forward in getting her better.....you're a wonderful mom.....you did the right thing....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
on the decision you had to make today in order to get your daughter the health care she DESERVES!![[puke]](graemlins/puke.gif)
![[tsk]](graemlins/tsk.gif)
![[toilet]](graemlins/toilet.gif)
![[cussing]](graemlins/cussing.gif)
![[Frown]](frown.gif)
![[hi]](graemlins/hi.gif)
mtree
Printer-friendly view of this topic