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» LymeNet Flash » Questions and Discussion » General Support » The wind is out of my sail - I need encouragement!

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Author Topic: The wind is out of my sail - I need encouragement!
MaryL
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My Jakey is back in the wheelchair just in time to start school. He had been making such wonderful progress until two weeks ago when what we thought was a Herx put him on crutches, then back in his wheelchair.

He starts school this week & has begged me to homeschool him because he can't stand the idea of going back to school in his wheelchair - he feels humiliated.

Many of the other kids in school are not very understanding of this invisible disability, despite our best efforts to educate his school through presentations, literature, even hosting a question & answer session in his grade's science classes last year.

My husband is worried that I would not be able to handle 7th grade homeschooling because of my own Lyme situation.

We are battling our insurance company to cover his abx treatment & this is the worst time for him to have a relapse with over $48K of medicals that are outstanding. Our insistence that he was improving on abx rings hollow right now.

I just need some words of encouragement as we face this awful week.

Posts: 81 | From Iowa | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
bettyg
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hi mary and jakey! [group hug] [kiss]


so sorry to read of all the problems coming at once again for your family.


mary, have you gotten the UNDER OUR SKIN DOCUMENTARY DVD YET?


if not, any chance the school or public library would buy it, and then you could do a COMMUNITY VIEWING of it and a panel discussion afterwards? *****************************


would be excellent tool to educate his classmates/teachers more as well as your community in general.


have you appealed also thru IOWA INSURANCE COMMISSIONERS OFFICE, MARKET REGULATION BUREAU??


here's who i ended up working with, their attorney, [email protected]


hopefully, more MOMS of kids with lyme will stop by and give you their excellent, PERSONAL ADVISE, of how they have overcome things.


prayers headed your way mary for jakey/family! [group hug] [kiss]

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wantabe
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So sorry to hear this is hitting your family!
I understand your son not wanting to go back to school after doing better, now this!

I'm on the other end of the classroom, not knowing if I can go back. I teach middle school. I am also finding it hard for my co-teachers and staff to understand my medical problems.


I have had a few chronic ill students throughout my years teaching- cancer to lyme:

One thing that helps our other students accept a chronic ill students is to keep everything simple and up front. Don't focus on the disease as much as the student and his needs.

-Let others know Lyme is not contagious- this is very important to kids.
-Let them know that it is preventable (to a point)

-Involve other students in his daily routine: locker help, recess activities, chair patrol, lunch buddies, students want to help, and it helps w/isolation problems.

-Having 1 or 2 students in charge of helping with absent work, maybe able to deliver messages and/or materials to and from the home and school will also help with the connection.

-Just a quick note (even email) letting others know he is "under the weather, but will be back as soon a possible" helps with the classroom stress when a student is absent a lot. A web page that friends can access has also been helpful for updates.

-fun bumper stickers on the back of the wheelchair makes everyone smile.

-Most classmates are much more understanding and accepting then the general public.

If school is not an option...
Check with your school about a home tutor to help with work- you shouldn't have to completely homeschool if you don't want to. The school should be able to offer many options. CAll!

Do you have a 504 or IEP plan? 504 is what you need! You may have to push for this, but it is important for our chronic students.

Please let me know if I can help- I will be praying for you and your family as the school year begins!

--------------------
Lyme+ dx Dec.07
Currently: Levaquin,Cefdinir,Plaquinil,Fluconazole
Nystatin,B12 meth, nortriptyline
Ambien,Clonazepam,many supplements
Dairy, sugar, gluten free diet
infrared sauna and exercise

Posts: 235 | From Iowa | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
Geneal
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Sending you and your family prayers and Angels during this most difficult time.

Could your son get a homebound teacher?

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
kam
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I, too, thought of the DVD Under Our Skin but not sure how 7th graders would view it.

I feel it would be a great DVD to show at all the schools, but don't know how it will go until it is shown.

Another thought I had was perhaps help with home schooling.

In the county I use to live in they had a great support group for homeschoolers and had some adults teach one subject and others another.

So, it would cut back on your daily involvement.

Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
MaryL
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Thanks for the words of encouragement. I like the idea of the wheelchair bumper sticker. Jake does have a 504 plan at school. The administration has been very cooperative.

Unfortunately, even a few kids who make comments to him really affects him - he is so sensitive. Kids tell him he's faking & get out of the wheelchair, things like that.

I haven't gotten Under Our Skin yet, but am looking forward to getting it. I hear we will have a viewing here in Iowa in October, Betty. When we have a hard date, I'll post. I really want to see it, I think my stepdad is featured in it possibly. Would be nice to have him memorialized in that way.

I really appreciate the words of encouragement, I have been really down. Thanks for lifting me up, guys.

Posts: 81 | From Iowa | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
kam
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Lately, I have been visualizing in my mind of me slapping someone silly when they are such jerks.

Then, I visualize them shaking their head as if coming out of a fog and being human.

perhaps he could come up with some sort of coping device to help me shake it off.

he is much stronger than any of those cowards.

he is a survivor of lyme

Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
bettyg
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mary,

i'm working on 2 showings locally; waiting to hear back from both places AFTER they get the dvd so we can schedule it.


it will be posted here when it happens.


trout was saying he/andy wilson have been working on this since last fall; would be nice for andy to make 1 visit to our state!!

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aklnwlf
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MaryL and Jakey,

Sending prayers you way today!!!

[group hug]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 5358 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
SickRI
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You can homeschool using the Abeka videos. They are a real school. They send you ALL the books and tests you need for a grade level. Then you turn on the video. Easy peasy! You can go over it with him at your own pace.

School districts usually accept it, no problem, because it's a "real school" itself.

abeka.com

Posts: 43 | From RI | Registered: Aug 2008  |  IP: Logged | Report this post to a Moderator
   

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