posted
Desperately need school - 504 plan ? Advice - PLEASE HELP !!!
Greetings !
Oh no, I'm sorry - this is a long one but please read on if you can. I do so hope parents of children with Lyme & Co. read this and offer up some advice as I am in a total panic...
First off, I have not been able to post much since joining here last year - I've simply been too ill and too busy fighting these hard won battles of the Lyme Wars for our family of 4 - all infected - all late stage and very symptomatic - actually WAY more so since starting treatment - why? - Ooops, I digress.
So, while I don't post much here - not enough for you to really know me or remember me with our Spirochete Riddled brains ...
I DO come very often and do searches - I am always learning, learning, learning from you folks - for that I will be forever grateful. For those of you who have helped me so much with private messages and emails and phone calls...
Like, Tutu - your phone call helped to calm me down so much - but sadly your assessment of the Doc. turned out to be spot on. And Metallic Blue, your talking to me while I made that nerve wracking drive to my LLMD appointment in NY is what got me through it !
And ALL of you wonderful Mommas of Lyme kids and all of your advice, recommendations, and encouragement - well, you KNOW how grateful we all are for that.
Please, I want you ALL to know that I have been wanting so badly to: thank you, reply, and discuss stuff for so long now but simply have not been able to.
And just a few weeks ago, as I was finally able to start typing a bit again - I was trying to catch up with all the wonderfully helpful, thoughtful, generous and caring folks who saved me when I first came here in a panic. And I even tried to reciprocate a little by searching for any ``newbies'' from here, in the Pittsburgh area, that might be posting here so that I could try to help them a bit during those oh so, intense, and frantic, first few days but then...
It all came to a screeching halt when my husband received a call from our children's new school yesterday morning.
(Due to our illnesses - the debilitations, the expenses and travel that it brings along with it - we had to leave our dream home and move into the tiny house next door to my mother which meant a totally new school district for us.)
And not wanting to tear our son out of the only school he has ever known right in the middle of first grade - when he was doing so well academically and because he is so sensitive and anxious - my husband drove him across town everyday last school year. It was tough on us all but we made it through and are now beginning a new school year in this new district.
Last week it was the school nurse wanting to know more about my son's chicken pox vaccinations. And yesterday, it was the School Counselor calling, wanting to set up a meeting with their new teachers and maybe something about a 504 plan ???
I don't know what to expect. I wasn't privy to their conversation yesterday and my husband well,... he's a most awesome father, husband, and human being but sometimes way too trusting and naive.
For instance, because I was too ill to do it - he filled out all of the kids school paperwork to get them registered. I regret that I did not get to copy them. He gave all sorts of medical information and permission to obtain more. When I was finally able to arise out of my hellish pit of sick - I was thinking: ``Oh no!'' But he did his best - he did what he had to do to get them registered for school.
And now, today, just moments ago, the same school counselor just called again but I answered this time... She just wanted to change the meeting from Tuesday to Wednesday but I have a funny feeling in the pit of my stomach.
Last year, when we first learned of our diagnosis's - me first, then the kids, then my husband - my son was in First Grade, in the only school district that we've ever dealt with.
My son, as well as us as parents, had the good history and good first impressions made BEFORE the Lyme & Co. entered the picture so the school *seemed* to be fairly understanding. However, we also knew that we'd soon be done with them so didn't put that much effort into trying to ``educate'' them - we were and still are in survival mode - just trying to get through this - one day at a time.
My son also had very little problems at school and made straight A's. He had excellent teachers and after beginning his treatment towards the middle-end of the year, if a problem caused by the disease arose - they seemed to handle it well.
But the school Nurse DID act very odd and had issues with giving probiotics during school we didn't fight it and just gave them at home. That nurse also ``moon-lights'' at a UPMC hospital and had treated ME very badly during an E.D. visit so I didn't think there was much hope for her to learn the truth. Her web page had such outdated information about Lyme that it discussed the vaccine !
Now, I am fairly certain that the new school nurse called that old school nurse.
And I KNOW that my son's First Grade teacher (who we all loved - but were never quite sure about her true feelings about T.B.I.'s... when we would try to talk to her about it, she would say: ``I can do my own research - thank you.'' So... hmmm?
My daughter on the other hand, who has been very symptomatic since birth, struggled quite a bit in this Pre-school program at the high school - it was only 2 days a week and for 2 hours so it was easier to get her through it. Still, there were issues - especially after treatment began - mostly behavioral and not being able to get enough sleep to get there on-time and to function, and not being able to participate (stand up) in certain activities.
Now she is in a whole new world - Full-Day Kindergarten and while she is excited and enthusiastic to go - I know that there will probably be more issues with her behavior and learning (her short term memory is severely affected and her sleep is downright awful -always has been - and she sometimes tires easily.)
I have experienced first hand how Lyme is handled here in Pittsburgh, where our `ol buddy, Eugene Shapiro spent a great deal of time with the medical monopoly of UPMC: It is an: ``It's all in your head - Chronic Lyme, Congenital Lyme doesn't exist. Babesia and Erhlichia only occur in tropical islands. End of story. Do not pass Go!'' - kind of town.
I am SO afraid for my children. I have read enough here to know that sometimes parents are accused of hurting their children or having M.B.P. and that scares me to death.
This is a totally new school district. I don't know them and they don't know us. I am scared.
Where do I go for more info? What is a 504 plan? What should we do? What should I expect?
Oh, please help me - I have made so many mistakes before and I can't afford to mess this up - I need the experience of others who have come before me.
THANK YOU, Sam
Posts: 68 | From Pittsburgh | Registered: Aug 2008
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bettyg
Unregistered
posted
hi sam
i'm not a parent of a lyme child, but have links galore found in SUPPORT forum that explains thigns really well ... so hang in there! hugs/kisses
posted
A 504 plan is tailored for children with special needs--like a chronic illness. Usually, the counselor, teacher/teachers, and parents, meet together to map out the plan.
My daughter had a plan in high school, so that is my only experience. It did not work for us, because there were so many teachers to deal with and none of them wanted to keep up with the plan.
It will probably work better in elementary school. I remember that part of her plan was that during absences she did not have to make up all of the work. The plan might also include provisions for tutoring.
I would not think a 504 plan would be anything to worry about. It is almost impossible to not inform the school about your child's medical issues.
My duaghter got really sick in middle school and she spent a lot of time in the nurse's office there and in high school. They were very supportive and could tell she was very sick. She did not get diagnosed until after high school.
Give the 504 meeting a shot and give the new nurse a chance to get to know your child. They have seen enough children to know which ones are sick and which ones are not. She may turn out to be a big advocate for your child.
Good luck with your treatment. I know this is all overwehlming.
Posts: 177 | From God's Grace | Registered: Apr 2007
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Sorry I can't help with the 504 plan as my kids are younger. All 3 of mine have chronic lyme as well. They have been in treatment with Dr. J in CT for a year now and are improving but still have behavior issues and some symptoms.
Just a thought about your daughter...not sure what her age is but I am holding my twin 5 year old boys back due to their lyme. They are doing a preK transitional year at a local preschool as many kids do these days. They will be 6 when they start kindergarten. While they are ready to go now acedemically, they still have the behavior and attention stuff to deal with.
Have you thought about holding your daughter back one more year? It might take the pressure off you a bit.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
Thank You, BettyG, for the links (and the hugs!) Most of them I did find via searches here and I have quickly read through them but the last 2 didn't come up (I just did searches for: "school" and "504" so, I.E.P. didn't come up,) so I will be checking them out in a moment.
I now see that my post was moved to the more appropriate, "General Support" forum - my apologies for posting it where I did, in "Medical Questions" - I'm just used to going there.
Sparrow, thank you for your advice and kind words of encouragement. It is looking like an I.E.P. may be the better route to take.
I would like to hope that the staff at the new school would be supportive but I am already getting that weird-ed out vibe from them - it is frightening me. I am so sick - too sick to fight their ignorance but I will do my best. I will try not to assume this new school as an enemy but something in my gut is sending out the alarm - do you know what I mean?
I think it's one thing if you already have a good solid history established with the school prior to diagnosis. I feel that we are at a disadvantage because they do not know us as the parents we are nor our brave and tough children and what they endure ever single day only wishing to be "normal" children.
I know that I don't need to write here how we are all judged on a daily basis by family, friends, doctors, neighbors, teachers, etc.
Thank you too, Tickbattler. My children are also patients of that doc and have been since February 2009 - (I think.)
Currently, their neuro-psychiatric symptoms seem like the worst they have ever been while there has been slight improvement in their physical symptoms but it is so hard to gauge - they have had this their entire lives - Congenitally infected from me. How were your children infected?
And as for holding my daughter back, well, we kinda have as she is practically starting Kindergarten at age: 6 - she will be turning 6 years old next month, in October, right before Halloween so...
I appreciate all the advice and I will get to work learning, learning, and learning again. What a way to spend your 14th wedding anniversary, huh? This disease -but mostly the massive ignorance swirling around it - has stolen SO much from my family - so much. Some days, it's hard to keep up the fight.
Thank You All, Sam
Posts: 68 | From Pittsburgh | Registered: Aug 2008
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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bettyg
Unregistered
posted
quote:Originally posted by sameetra:
[QB] Thank You, BettyG, for the links (and the hugs!)
Most of them I did find via searches here and I have quickly read through them but the last 2 didn't come up (I just did searches for: "school" and "504" so, I.E.P. didn't come up,) so I will be checking them out in a moment. Sam
hi sam
you are most welcome; i just clicked on all 4 links i gave you above; they are working. so as time permits for you, try again ok.
many parents here are in your situation and they can give you their excellent 1st hand experiences where i can't but can show links for you/others hang in there my new friend.
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posted
Ok I am going through the same thing right now! So I will try to help u if I can
1st I have 2 boys with congenital lyme just diagnosed in March.
End of last year 1 of them made it through school but missed many days. The other 1 had to be tutored at home.
So school started 2 weeks ago. I was going CRAZY trying to learn all I could to get a 504 plan going for them.
Both started new schools (same school district though). One started middle school and the other high school.
My sickest child is my younger 1. I can email u what I typed up for the school.
My best advice is to get yourself educated in your child's rights. Legally they have to accomodate him or her. If you read the law it states infectious disease as one for a 504 plan. So that is close enough for me.
Anyways PM me your home email if you would like to see what I did. They are in Word so I don't think I can send them on this site?
I pretty much put all their symptoms and then all the accomodations that I could think of and then some. I also left it open to make changes to.
I made a ton of copies and gave them to each teacher, principal, counselor, and nurse. I also spoke to most of them briefly in person at orientation.
Now as for all the teachers and staff following the plan that is another story. We have had several problems already in 2 weeks time. Luckily the principal for my youngest is being very helpful!
It is impossible to get everyone on the same page. I have a feeling I will be addressing a problem or 2 a week the entire year. I don't plan to back down though. Don't care how sick I am. I need to make sure my kids are treated fair. Otherwise I told the school they can provide a home tutor and I will get a letter from the LLMD.
So my advice is to know what your rights are, be straight forward with what you want, don't take no for an answer, and be prepared!!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
By the way I live in Ohio and noone has a clue about Lyme disease around here either!!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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Thank you for the PM - I have to re-read it tomorrow as I was quite foggy when I read it the first time around a few days ago and I can't remember ANY of it!
It stinks my poo-poo brain - argh !
BettyG, Oh no, the links all worked PERFECTLY ! I just hadn't read the last two prior to my posting because I didn't think to search for "I.E.P." posts.
(I do try to do all the searches that I can before posting.) Thanks again !
AmyC, Oh am I SO glad that you replied!
I am sending my email to you ASAP! It's late and I'm wiped out.
I have now realized that I have WAY too much to research and learn in order to be prepared for this meeting so my husband says he'll call the school tomorrow to ask if we can reschedule - we'll see ...
They really sprung it on us - told us only a few days in advance, provided us with no information, and want to do it in the AM right before school starts with both the children just hanging around???
I would think a meeting of this importance would be held after school - we could get a sitter for the kids. Plus, I'm really bad in the morning and at 8:00 AM my brain is still sleeping. But ???
I fear that they might be trying to rush us so we are NOT prepared.
There are so many issues/provisions that I didn't think of totally but should have and need to address like, Sparrow and NjLymemom mentioned - I really want and need to get this right.
Again,Thank You, ALL !
And please keep any more wisdom coming my way.
Thanks, Sam
Posts: 68 | From Pittsburgh | Registered: Aug 2008
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posted
I sent you a PM on here and an email to your home email!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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