504 accomidations

My daughter, age 6, was diagnosed with stage 3 heart block in July and received a pacemaker. I'm trying to set up accomidations at school for her but I'm not sure what she will need because this is all so new for us. Any suggestions? The school is less than helpful and is even fighting us on installing an air conditioner in her classroom to prevent her from becoming overheated or dehydrated. Are there any laws protecting children with heart conditions as there are for children with diabetes? Thanks so much!

5 Comments

Why anything special?

by golden_snitch - 2013-08-19 01:08:25

Hi!

I don't think a 6 years old with a heart block and pacemaker "only" needs anything special in a classroom or at school in general. The pacemaker has fixed her condition, so she'll be just fine, just like any other kid. Only thing she'll probably not be allowed to do, depending on what her cardio says, is to play contact sports.

Best
Inga

Accommodations

by cohara - 2013-08-19 02:08:59

All accommodations require medical documentation of some sort. If there are issues besides the heart block, you will need to have doctors document them and suggest accommodations based on physical factors. You take this to the school and meet with guidance to draw up a 504 plan.

Note that a 504 is not as legally stringent as an IEP (special education accommodations). IEP accommodations are funded; 504 are not. IEPs require a higher standard be met for disability. Unless you can prove absolute necessity for an expenditure like air conditioning, you will find that the school will not want to fund the item. This is due to shrinking funding. Money is quite tight. Sequestration is kicking into public school budgets. The school might have to sacrifice in another area to meet your request.

If you feel your daughter must have certain accommodations for her protection, the only true way to guarantee receiving them is to have her classified for special education. Not all special education students have learning disabilities; some are classified due to physical conditions such as cancer. Start with your doctor and work from there.

Good luck,
Carol

ditto Inga

by Tracey_E - 2013-08-19 11:08:02

I was born with the same thing as your daughter. Other than occasionally being held back from PE class, I didn't need anything different from any of the other kids. I would let her start out in a regular classroom with the other kids and see how she does. If there are issues, go back to your dr and address things with the school. If she thrives, problem solved.

This is just my opinion, but I would not push the school on this for several reasons. First of all, I am saying this as a kid who's been in your daughter's shoes, I truly don't think it's necessary. Most schools didn't even have air conditioning when I was in elementary school. Aside from that, I wouldn't want my kids in a special needs class unless there was no way they could possibly be in the regular class. You want her in the best class for her intellectually, not lumped in with all special needs where they have to cater to a variety of academic levels. Last, having been the kid in the class with the heart condition, it never bothered me being different. My parents always told me God made me special, in my kid's mind it never crossed my mind it was a bad thing. I was never scared or worried or whatever, but I *was* embarrassed every time I was singled out, when attention was drawn to me because of my heart. All I wanted was to blend in with the other kids, to feel normal.

I know it's hard and the urge to protect her is probably overwhelming, but try to let her be like all the other kids as often as you can. Don't let her grow up thinking her heart condition defines her or will hold her back from being anything she wants to be. Because it won't! Really, I promise :) I'm 46 now, mom to two teenagers, healthy and active. Your daughter will be fine! I know it's scary, but if we have to have a heart condition, we have the one with the easiest fix. There is nothing I want to do that I can't do.

I agree with the others

by vbilbrey - 2013-09-02 01:09:02

Exactly as the others have said, why treat your child any different than the others just b/c she has a PM? I would think that would teach her to expect others to accomodate to her needs her entire life instead of learning how to adapt like everyone else.

I, too, grew up with a PM and it didn't hold me back at all. My dad wanted me to live as normal a life as possibe, even when I tried taking advantage of it.

I also agree with TracyE regarding pushing the school to make changes. Now regarding laws for people with heart conditions...I believe they are already included in the ADA, non-discriminatory, & state and federal laws. However, I would be careful in categorizing your child as being disabled or in a protected class. Imagine how you would feel if your parents automatically classified you as disabled for whatever reason that was out of your control when you were growing up. Sorry if I sound harsh, but I would really think about your child's feelings first before making her the center of unwanted attention (i.e. Susie's mom is forcing the school to install air conditioning because Susie has a PM...). I'd be so embarrassed if I were her. In fact I was embarrassed growing up when my dad happened to just bring up my condition out of the blue in random conversations with people. Now, I realize he was just being a proud father, but at the time I was really embarrassed because I reallly didn't want people to associate me with my PM. And I didn't feel comfortable telling people unless I really knew and trusted them.

Let her be

by Kady12.5 - 2013-10-05 06:10:13

Hi Momof3
I'm new to this too....my daughter only got her PM in 2011.I haven't asked the school to do anything different.They just have a care plan in place which outlines the basics such as ensuring she stays well hydrated and symptoms to look out for just incase.This document is only there as an easy tool for teachers to pass information between themselves.It's very tempting to feel you want to do the natural human instinct t hing of over protecting but my advice is....apart from quietly making necessary caregivers aware,incase of emergencies,I would just carry on as normal.My daughter was so upset when she had to sit out of just one activity on a residential with school.I agree with Inga and the others.My daughter has continued to swim competitively,dance,camp with Scouts,cycle,the list goes on! Take note of any sensible precautions,ie: Rugby etc. But I'd enjoy watching her enjoy life.I do understand,being a Mum is hard enough without all the extra worries.It's early days....let your daughter show you how she can still enjoy life as before,kids are extremely resilient.
Love and best wishes to you all.
Deb.

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