Adding Dyslexia to the List of Things that Makes My Son’s Life Interesting

12 07 2020

We got a dyslexia diagnosis for JJ this week.

So I’m having a moment and processing it through writing. But this is just one more reason a dog will be helpful for JJ to be able to go back to school. One less thing he’ll have to worry about and he can feel safe focusing on the actual learning.

I looked into the reading and writing method that was recommended at JJ’s eval the other day. It’s a structured literacy program that works very well to help kids with dyslexia learn to read and write in a way that’s working with their brains.
It’s just another $3500 or so 🙄 So on top of this new cost and the cost of homeschooling and the fundraising for his dog, we’ll need to come up with close to $25,000 so he can access his FREE education safely and NOT fall behind.
After our experience trying to get an IEP after our autism diagnosis I don’t think we would have gotten any additional help with the dyslexia either. He was denied an IEP in first grade after his autism diagnosis, because they “didn’t see it” (the autism) and he wasn’t doing badly enough. However, he was struggling socially BIG TIME, and that was the main bulk of what I was asking for help with, and the language arts class because *I* knew already how hard aspects of language were for him. But, we were told no.
For our dyslexia diagnosis, our evaluator said his skills were scattered and it wasn’t a clear cut and dry case, but the dyslexia was there.
Knowing that the school used a very narrow, literal definition of autism to exclude my son from additional supports, I wouldn’t expect them to “see it,” with this diagnosis either and allow any additional supports. Although, I’m sure we could expand his 504 to add in a few more things. Unfortunately, a 504 is about as successful as a restraining order when someone wants to hurt you. Both only work if everyone involved cooperates. That hasn’t been our experience. And there’s very little recourse if the 504 isn’t followed because the burden of proof is on the parents’ shoulders and we’re not there to witness things in person.
Also, many of these tests are out of pocket. Insurance does NOT cover them. Their justification: it’s an academic issue, the schools should be taking care of this, you paid for it with your taxes. So families are left to come up with the money to have their kids tested when the schools either a) fail to test them, or b) “don’t see it” but as a mom, you KNOW there’s more going on.
And guys, the testing isn’t cheap.
So, here’s my take away.
1. Access to a FREE public education is NOT free for my special needs son, unless I don’t care that he’s getting bullied (physically, verbally, racially), or being left behind academically when he’s capable of more – which I do.
2. I’m so glad we made the decision last year to start homeschooling. I think my son would have fallen through the cracks. Now I just have to figure out how to teach my son in a way that works best for him, which is no easy feat. If I can afford a tutor that knows how to teach him, great. If not, it’s on my shoulders and both options involve a stress on my bank account.
3. Our school district has a wide range of people, I think. From those living VERY modestly to those on the other end of the spectrum. I believe our area covers a lot of different people and situations. So I don’t believe we’re a “rich” district or even a “poor” district. I think we we have a lot of variation. But I do believe we actually have the resources our special needs kids need if the gate keepers of those resources would authorize their use.
If it’s this hard for me to get my special needs son resources that our district has available…what about the moms and kids in districts who don’t have these same resources available?
I may have to fight for my son to access resources at the school level, but at least we have them.
What happens to the children in schools with less resources? How are they supposed to access resources that aren’t actually available?
They can’t.
And these same moms, how are they supposed to be able to come up with the money for independent evaluations?
I believe there’s brilliance in the upcoming generations and we’re losing so much of it.
I believe that I’ll be able to find a way to help my son find his wings and soar within his limitations, even without the school’s help. But the loss of that future brilliance and societal contribution, those kids that could change the world for the better if they didn’t fall through the cracks…who’s going to help them?
Thanks for stopping by
If you’d like to read more about JJ’s story, you can go here Help JJ
We’re also selling ear savers to use with your mask if you find yourself needing to wear one. All the proceeds go to JJ’s fund raising. You can find the blog post here
Ear Savers for JJ there’s also a link on his fundraising page for these. It’s a gray box above his story.




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