Questions About Managing Middle School

[DebraNeumann]

Hello everyone -- my 13 y.o. 8th grade daughter was diagnosed with POTS in August, 2010 -- right before school began. She was able to continue attending school for a couple weeks, but her condition kept getting worse. She was home for a few weeks. She has now seemed to 'bottom out' and has a bit more energy. We are applying for home based instruction through our public school district for her. Meanwhile, she wants to return to school -- mostly she wants to be with her friends. She is determined to attend school, which her doc supports. However, we are well aware that her symptoms will come and go, making attendance variable. The school system says we must decide on a schedule for her in advance (e.g., she will attend the final 2 hours of school daily; she will attend afternoon hours daily) and she must be able to commit to that schedule. We think this is not reasonable, as we cannot predict how she will be feeling from one day to the next and so cannot commit to 2 hours daily. The school system says that without that type of consistency, she cannot return to school and must use the home based instruction, which she doesn't want. I don't think this approach will be helpful to her POTS, as her doc says that it will be helpful for her to get out to school. I would like to hear from other parents about your experiences working with school systems with POTS and what has worked for you. Thank you so much -- i have really appreciated reading the posts on this forum!

[runningshoe]

I don't have experience with this but I assume she will need an IEP, individual ed. plan? I think in oder for it to work you will have to have some consistency...maybe just picking the subjects she really wants to focus on? Start small you can always add in. I know there are laws about educating chronically ill kids. Check with your pediatrician and your special ed. director for your town. Good luck!

[Christy_D]

My son, who is now in the 10th grade, started with the homebound program in the 8th grade. His is still set up as intermittent(sp?). If he could attend, that was what he was going to do and the school encourged that. If he was too sick to attend, say after a couple of days, then homebound would kick in. The homebound teachers taught him what his class was working on. So the homebound teachers reported to his regular teachers and the regular teachers assigned the work. This way he was up with his regular class and could bounce back into school at any time. He was frequently behind, but able to get caught up. Plus with his 504 plan a lot of assignments (busy work) were excused.

He missed half of his 8th grade year and did not attend school a single day of his freshman year. He is currently attending school 4 hours a day and doing 2 classes on line. He missed a lot of the socialization last year and lost a lot of friends. So if she can attend school, even if for an hour or 2 that would be best.

Do you have a 504 plan? and are on line classes available in your area?

Christy

[pat57]

If I were you I would ask - what if the chosen schedule needs to be modified.

It may not be a big deal - so you wouldn't need to have a crystal ball or be

locked in to something that doesn't work.

[PotsMom]

Hi Debra,

What I have found both from my own experience with two kids and from hearing many stories from other parents is that it differs greatly from state to state, school district to school district, and even school to school as to how well the schools cooperate with these types of situations and also how they define and interpret guidelines for 504s and IEPs. I have never ceased to be amazed at how broad this range can be and especially when it comes to determining what qualifies a student for a 504 or IEP. It often depends, too, on the specific person you are dealing with. If you haven't already, I would definitely start the process of applying for a 504, and your daughter should definitely qualify. (An IEP generally comes with greater flexibility but is also harder to get - and will take a lot longer as well). It sounds like you have a doctor who will stand behind you on this and he/she needs to write a letter explaining the condition, the types of symptoms including the fluctuation of severity from day to day and even hour to hour, and should also emphasize the importance of her being able to attend school when she can and therefore needs flexibility regarding class attendance. In order to get these types of accommodations you really need a 504 in place - they don't have to give them to you otherwise, though even with the 504 it's still a matter of working out the details with the school and teachers as to accommodations needed, what they are willing to give, etc. In the process of determining eligibility you will have a meeting with school personnel and in that meeting (and in writing as well) I would also give a clear synopsis of the condition and the symptoms and also how they fluctuate and cite specific recent examples.

Good luck. It can sometimes be quite challenging getting through the process but well worth the time and effort if you are successful in getting accommodations that will help your daughter continue her education.

[janiedelite]

I'm having my husband post, as he's a middle school special education teacher:

If you want to pursue the IEP route she would possibly be found eligible under the category of Other Health Impaired. She will need to have a medical statement describing the illness and if it will last longer than 60 days. The hard part will be to prove that there is a severe academic impact because of her illness and that she needs to have specially designed instruction to help bridge the gap between her disability and academic achievement. I would suggest that if she is able to be barely minimally successful in her classes (D's or better) that she takes that you request a 504 plan. This essentially, is a written plan of accommodations and modifications that your daughter may need to be successful (such as extended time on assignments, no homework, modified work, modified schedule, etc.). This is much easier to get than an IEP, however, some districts require that you go through the eligibility process and be found not eligible under the category of Other Health Impaired before they will consider if she is eligible for an IEP. If you pursue either option my advice is to be patient (takes at least 1 or 2 months to get if not longer), have a good medical statement and a dr. willing to communicate to the school personnel the impact of her illness, and come up with ideas of what accommodations or modifications may help your daughter be successful in school.

As far as requiring that she sticks to a regular schedule this is something that they may want, but as long as she does not miss greater than 10 days in a row (at this point she will be dropped from the rolls and you will have to re-register her) they can not require this. They may want her to have a regular attendance, but they can't require it. The only recourse that the district has is that after missing 10 consecutive school days, she would have to be re-registered.

I would also suggest that there are many great alternatives such as virtual charter schools (many states have these and if not K12, connections academy, and kaplan virtual education have private virtual schools) that are great options for students who can not regularly attend a brick and mortar school. I am actually currently doing my dissertation on virtual schools and one of the big draws to these schools is that there are students who want to be successful in school, but for one reason or another can not attend a brick and mortar school on a regular basis. Another option would be to home school except for maybe one or two periods a day which she can possibly take a core class (math, LA, science, ect.) or elective to see how she does and maybe increase or decrease it as the year goes on.

[MightyMouse]

In order to get the school to do what your daughter needs, you WILL need either an IEP or 504 plan for her, probably with "other health impairment" listed as primary disability. The other option is what's called a 504 plan, which is similar to an IEP but not as broad in it's scope. If your school district is dragging their feet on getting these things done with you, you're also going to need to resort to doing EVERYTHING IN WRITING because that starts the timer ticking on their end to stay in compliance with federal disability laws. You can get free advocacy help if you need it by going to the OSEP website.

http://www2.ed.gov/about/offices/list/osers/osep/index.html?src=mr

LMK if you need more help. I work in public education as well as teach incoming teachers at the undergrad and grad levels.

Nina

[sj75]

i cant really add much as im in the uk and it seems that our system is very different, but i just wanted to offer my support to as i know what a fight it is to get your child the help they need with education. Push for what you believe she needs, one thing i have learnt over here is that sometimes you need to throw your toys out of your pram (hope you have that expressioon over there otherwise i will sound like a right idiot-lol)to get the desired results.x

[DebraNeumann]

Hello and many thanks to everyone who has replied to my questions!!! I have incorporated many of your suggestions in a draft letter which I will take to our school, after running it by our medical team. I do appreciate all the help and support and I learned A LOT! I am very grateful for your input, and my entire family, especially my daughter, thanks you.

[bkweavers]

Debra,

Everyone here said what I was going to say as far as IEP and 504's. My daughter began middle school in the special education program and we never once regretted it as it gave her much more freedom for her to miss days and not have it held against her. Again, like someone already said, every state is different but I would definitely take advantage of the special education coordinator, that is, if your school has one.

What I wanted to add is an encouragement to fight hard for your daughter and her needs. My daughter was so happy to be able to stay in school as much as possible. Every doctor we've gone to since she became sick always asked her about friends and school. Dr. Grubb told her that the most important thing she could do for herself was to stay connected socially. I always thought that was the best advice she received! So, my advice is to keep going no matter what. Believe me, it isn't easy but I think once the school knows you mean business, they will comply and if she meets the requirements, they don't have a choice, they have to! I believe my daughter is coming through this as well as she is because of being in school and being with her friends.

My prayers go out to you and your daughter. God bless,

Brenda