When Meeting the Minimum Doesn’t Feel Good Enough

16 Dec

I just got home from a meeting to discuss Jackson’s educational plan today. It’s been several months of testing and getting all our ducks in a row, but it finally happened. It’s quite the process and I appreciate all the work that goes into it. I was a little nervous going in, but more so, I was upset coming out.

I know I’ve mentioned my feelings about assessments before. I went in hoping for an FM system and individual services with the hearing specialist. In order to get those, he had to be eligible for special education services. I came out with neither. I know I didn’t have to sign it, but I made my case, a very clear case, about the need for both. And the professionals disagreed. The audiologist recommended he didn’t need it. The teacher said he heard just fine with his hearing aids in class. Everyone agreed around the table. Except me.

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That is a really, really hard position to be in.

My main concern: why is my smart child testing below average on several fronts? Why do we study harder than I did for high school tests for weekly spelling tests? You can see he gets a 90 and 100 now on his tests…but no one sees just how much WORK is going into that.

I have a problem with all of this. It seems like special education is set up to provide support for the really special kids. My son, with his moderate to severe high-frequency hearing loss, is just not special enough. So he has to work harder than his peers. He will have to listen harder and concentrate longer just to be like the kid that sits beside him. And though he may seem to test “OK” enough…it is not OK enough for Jackson standards. I don’t compare him to other children, I compare him to himself. I KNOW when he is reaching his maximum potential. Right now he’s not.

Today I shared how we have been proactive his whole life and that’s why he looks and sounds as good as he does. We, as parents, addressed the potential of problems before they became real problems. He’s obviously not a SpEd kid. I really don’t WANT to have Jackson getting special education services or an FM system. But I know, more than anyone, what he needs to excel. He needs more right now. I know this because I’ve fed, clothed, played, disciplined, loved and advocated for him since the moment he was born.

Jackson received his first hearings aids right before his second birthday.

Jackson received his first hearings aids right before his second birthday. We started speech therapy around the same.

It is really frustrating to be smack dab in the middle so often. Ev and I are your standard hardworking middle class, so we don’t get financial assistance for anything. We’ve always had insurance and don’t meet certain standards for aid. It doesn’t mean it’s easy to spend thousands on your children’s medical bills each year. That replacing Jackson’s hearing aids will be $3,500 soon. Abby’s MRI with sedation in Boston was $850. Not to mention co-pays and prescriptions and new glasses and ankle braces…you get the picture. We had to wait 5 years to replace my car that died during Jackson’s cancer treatment. It means our kid’s college funds are a pipe dream right now. The down payment for our new house is spread out at several children’s hospital instead of accumulating in a savings account.

It is so easy to get overwhelmed and bitter on days like today. When I start feeling like this, the best thing I can do is go through what’s going right.

  • Jackson’s 504 plan will give him extra accommodations in class with his current teacher, aides and he can utilize school-wide programs.
  • He has a great teacher. He really loves her.
  • They were all kind to me and Jackson. The school system is now aware of his history. He’s now on their radar.
  • The hearing specialist walked me out and told me not to worry, she’d check in frequently and give his teacher extra pointers.
  • Jackson has many friends and a great attitude at school.
  • Maybe they’re right and I’m wrong. That would be a welcome change.
  • Maybe it’s just first grade is hard and his learning curve is a little steeper right now.
  • The special education aide came to me in the hall and told me she would be happy to tutor Jackson outside of school.
  • Jackson’s happy. He’s healthy. He is learning.
  • We could have so many more long-term side effects of his cancer treatment. Hearing loss and learning issues are things we can work on.
  • I spoke my peace.
  • I did not cry. (I’m such a big girl.)
  • We are going to be okay.
  • It’s not cancer.

This is our journey and I’ve got to stop thinking in terms of finish lines. Look at all we’ve accomplished already.

Jackson is going to do great things with his life.

Jackson is going to do great things with his life.

7 thoughts on “When Meeting the Minimum Doesn’t Feel Good Enough

  1. This makes me really mad. This has totally happened to me, except I cry. Good job not crying.

    I just don’t get it. There is a category for hearing impairment, right? But he just didn’t test “low ” enough on their test?
    What are his 504 accommodations?

    We just had our 3 yr. re- eval for spec Ed services under developmental delay, and out of a group of 10 people only 1 of them had laid eyes on charlie and then only for a short observation. They agreed that no further tests needed to be done to decide he doesn’t qualify anymore. I will be meeting the ” team” in the spring to talk 504.

    • I totally know how this is being a special education teacher. The hard thing is that we don’t really have a voice and the test results say everything, including the School Psychologist. I would definitely request testing again next year if you think it’s right. It is hard to diagnose when they are so young but I have seen it be done. Most students get diagnosed in 2nd to third grade, which I don’t necessarily agree with. If there isn’t large discrepancy in results, they won’t diagnose them. It’s annoying I know, Hope it all works out!

    • Ahh, the assessments. They will make the strongest person fall to their knees. I still cry, it just depends on how BAD the assessment went. There are, many things to be grateful for though. I will start writing my list of those things today.

      Megan, that is awesome that Charlie doesn’t qualify anymore! Eric will qualify for quite some time I’m sure. We are going through hell and high water to have his needs met but everyone doesn’t know how to contribute–so it begs the question, why are they even there??

      I will start making a small case this year to advocate for an individual aide. I figured if we start now, we may have one by the 4th grade! In any event, keep pushing and sharing.

      Sabrina

  2. I know it doesn’t make it any better, but I’ve been there too. I went around that carousel when Colby started kindergarten. I wanted a 504, they said no. They set him up with a medical care plan which has no teeth if the teachers don’t follow it. The cafeteria staff has been awesome, but recently when I approached his teacher about a food related activity, she said “oh” like it had just occurred to her that he might need a food substitution. Maybe time to revisit that 504? The good thing is if you notice things going downhill, you can revisit that IEP. It shouldn’t have to come to that, but it is what it is I guess. Good luck!

  3. Hi! I was directed to your blog through a colleague/student of mine. I am a school psychologist and my daughter has a high frequency hearing loss. I am not sure why they are telling you that you can’t have a FM system with a 504. That is patently false. Section 504 is designed to provide equal access to an education. Hearing aids provide about a six foot hearing bubble. If the teacher, or peer, is outside of that six foot bubble than the learning of a child with a hearing loss can be/will be impacted. This is also in ideal situation. Add in background noise and the bubble is reduced which is why the FM system will pipe in the sound of the teacher louder than the background noise. As I teach my students and colleagues, the psychological testing should not be used, and actually doesn’ t have to be used, in determining eligibility. The only area of weakness that would be predicted in an otherwise cognitively intact student is in the area of vocabulary. Also, our kids do not have the same access to incidental learning. Much of what children learn is through overhearing, not direct instruction. Sorry this is long but I am furious for you. Your son should absolutely be provided access to the FM and the teacher needs to be specifically trained on how to use it (e.g. she needs to learn to repeat the comments other children make in class discussion so your son can hear them). You can always appeal their decision. As someone who has worked in special education for 16 years I can tell you that what they say about the squeaky wheel is true. I do not know why they would want to deny a FM student to a child with a hearing loss (budget?), but it is unacceptable. Best of luck to you. Your children are gorgeous, by the way 🙂

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