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.
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.
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.