No IEP For Jack

David and I met with a team of teachers and specialists at Jack’s school on Tuesday to go over my request for IEP assessments for him. Even with the 504 accommodations in place, he has had increasing difficulty completing schoolwork, gets very frustrated and can’t seem to stay on track with homework, and he fights fatigue and physical discomfort constantly. From day to day, and sometimes even moment to moment, Jack can’t remember what he is supposed to be doing or how he is supposed to be doing it. This is particularly a problem in math and it often takes him an hour to do 2-3 math problems for homework, if he hasn’t been reduced to tears and stormed away from the table.

In preparation for the meeting, I printed out loads of information on learning disabilities and the effects of cancer treatment on students, including information on dyscalculia. I also had a one page write-up about Jack’s strengths and the challenges we’ve noticed. I did end up sharing the strengths/challenges page, but never got around to the other stuff because, essentially, none of it matters – Jack is doing too well in school (between 90-100% in all areas) and would be very unlikely to qualify for any special education services.

To put it more plainly, Jack’s loss of abilities/skills won’t qualify him for additional educational services unless/until he starts failing in school. He can go from being an A student to a C student and still not qualify. In fact, he needs to be 1.5-2 grade levels behind his peers in order to qualify for services under IDEA.

Furthermore, at this point in time Jack is still missing so much school that the specialists who would do the assessments would be unable to say that the issues he does have are related to learning disabilities (brought on by a health impairment) and not just due to his lack of attendance.

That’s a bit backward, if you ask me. Part of the reason he has low attendance is that he struggles so much in school already and wears himself out. If he attended school even on days he’s clearly exhausted and not up for anything, he would likely fail in his schoolwork more noticeably and thus qualify for services…but at the cost of his health.

That’s just not worth it.

So, right now, Jack won’t get an IEP. He still gets the 504 accommodations, thankfully. Some new accommodations were added, such as visual prompts to keep him on task, a tutor 2 hours a week, and inclusion in adapted PE (which isn’t limited to IEP students) once a week. He is to work on homework for no longer than 40 minutes each day regardless of how much he finishes (unless he feels like doing more).

I am conflicted about the success of the meeting. It’s hard to feel positive when it feels like things won’t improve much (if at all) as far as school goes. The struggle will still be there; we’ve just been given the OK not to fight so much.

On one hand, I’m proud of Jack for finding ways to keep up in school. He is fighting hard to be a good student and keep on learning. He has come up with creative ways to do those things. I’m in awe of him for how he is handling all the challenges he faces.

I also understand that there is limited availability for special education services. There are many other kids who need those services more than Jack does. We are very lucky that Jack isn’t struggling more than he is.

On the other hand, I wish he didn’t have to fight so hard in school when he also going through so much healthwise. I wish that the emotional impact of the extra effort he puts forth in school was taken into account. It would be nice if his personal potential was a little more important than just teaching him the bare minimum necessary to get to the next grade.

We are set to meet with the 504 team again in April to see how the accommodations are working for Jack. If things get worse, we can always ask for the IEP assessments again and maybe at that time attendance won’t play into it. There will also be different curriculum being taught at that point in time, so Jack’s academic performance may be different (especially as his chemotherapy dosages are increased again – he is currently on about 40% of what he’s supposed to be taking).

I’m still hoping to get Jack help in other ways. I’ve got an application in with our county’s Children’s Services department because Jack may qualify for occupational therapy through them. I am also getting him set up with a pediatric therapist next week, which may be helpful in reducing his stress and anxiety over school.

And, well, who knows – this could all become a non-issue in 13.5 months when Jack finishes treatment. One can hope, right?

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Comments

  1. Maybe it’s because she started out receiving special ed. services in preschool, but Anna qualified for services right out of the gate in kindergarten, before she was measurably behind her peers. I haven’t needed to use it (thankfully), but I have heard that’s a lot of information at wrightslaw.com regarding fighting for special ed. services. Good luck!

    • Thank you for that website! I may have had it tucked away somewhere but I can’t keep track of any of it anymore!!

      I was able to find the following, “…achieving at or above grade/age level or achievement level does not disqualify a student from eligibility for special education services” on this part of the site: http://wrightslaw.com/info/elig.sld.osep.felton.htm.

      BUT…it’s one of those uncommon things that was decided in a court when all factors were weighed (like parents helping their children outside of school). And apparently the recommendation when dealing with this response from a school (other than taking them to court) is to seek out an evaluation via the private sector and then go back to the school to request the special education services.

      Oy. I need to find an advocate. And more time to deal with all of this crap!!!

  2. I am so sorry about all of this; it seems wrong that there’s not more they can do. Or will do. I would say, if you can, get a private evaluation and some type of statement from the pediatric oncologist, they might listen to that. Hugs.

  3. Ewokmama:

    Have you consider hiring an advocate for your child? Three years ago when I lived in NY I had a similar situation with my daughter, who has ADHD. She had the same struggles, minus the cancer and other health issues, and the school kept denying an IEP. At the time there was a great organization in CT that offer advocate services, for cases like ours. I hired an advocate and that helped me get her the services that she needed.
    Although they couldn’t qualified her for ADHD, they did it under “other health impairment”. She was not failing in school and she was not a year behind. What I learned at the time was if the health issues significantly interfered with her learning, she could qualify. And it was interfering! I print out all the email exchange with teachers, school psychologists, etc. I felt like I was a lawyer getting ready for those meetings.
    The advocate helped me get ready for the meetings, understand the tests, helped me to no doubt of what my daughter needed; and was another person on my side (especially when you have like 7 other people on the school side). Maybe they got tired of me always requesting a meeting or sending emails, but after two years of that I got her an IEP. I’m so glad she has it, it has made a huge difference for us.
    No kid should go through those struggles. That crushes their self-esteem and they feel so unhappy. I hope things get better for you and your son. I’m sharing my experience and hope that will be helpful somehow.

    • I do think I need to go the advocate route. The more I think about that meeting and the struggles Jack is going through, the more I think we need to get an IEP in place now rather than later. There is an advocacy organization in my county – I just need to call them (I did email but didn’t hear back). So many phone calls to make…

  4. It seems that the time to give him special services is now….so he can maintain those high grades and level of work. But, sadly, the thing that seems right hardly ever is.

    I wish I knew some secret magical thing that would help you to get the services he needs, but this is way outside of my knowledge arena. But I did want to tell you how unendingly proud I am of you, and how hard you fight for Jack each step of the way to make his life as normal as possible and to advocate for him. You are a rockstar of a mama.

  5. I’m sorry that you are having to fight the school in addition to fight Jack’s cancer. You don’t need another source of heartache. Hugs and prayers that it gets better soon.

    Jack is an amazing boy with an amazing momma!

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