One of the things I’ve heard many autism parents talk about is the struggle to get services for their child. My husband and I are still in the process of getting my son special ed services, which has been a lengthy and frustrating process, to say the least. I’ve definitely had my share of headaches since we started this part of our journey in May of last year.
I originally tried to get my son an IEP, however they turned him down because he was “too smart”. Yep, that’s what they told me. Because my son’s grades weren’t going down, he didn’t qualify. It didn’t matter his pediatric neurologist specifically stated he needed one. They didn’t even consider his multiple diagnoses, which include high-functioning autism, ADHD, Tourette Syndrome, Hypotonia, Executive Functioning Disorder and OCD. (He’s since been diagnosed with anxiety and Sensory Processing Disorder, as well.)
I’ve talked to many people since May, including those who work in the special education field, as well as special needs advocates, and all have said he should have been approved for an IEP. I’ve also been told that the reason my son was probably turned down was because of the wording his neurologist used in his report. Apparently special education departments hate being told what a child needs.
When you also factor in that my son goes to a charter school, and the IEP would have to be through the school district we live in, it’s even clearer to see why they turned him down. They hate paying for special ed services for a child outside of the schools in their district. It doesn’t matter that we live here and pay a shit ton of taxes. They would have had to provide the OT and speech therapy that he needs, and they didn’t want to do that since the district is struggling with funding issues right now, and they’re last concern is a child going to a charter school.
After the IEP denial, I was told to go for a 504. That has been a process in and of itself because again, his grades are good, which means he’s not struggling as much as they would like. This is why I pushed for services through Swing for the Stars. I wanted further proof of my son’s struggles. And I got them.
My son struggles in more ways than people realize. I never realized how much he was dealing with on the inside. Both his occupational and speech evaluations showed that though my son is very intelligent, he’s below average in many ways, all of which can impact his life from here on out.
They would even impact his life as an adult if not dealt with now. Why do so many special ed departments only look at grades and not the bigger picture? It baffles and angers me. These areas may not seem like a big deal but they are.
My son has a hard time with conversations.
Can he talk? Yep.
Does he have a huge vocabulary? Yep.
Can he remember minor details? Yep.
But when it comes to holding a conversation that keeps others engaged, or that involves him understanding another’s perspective or showing concern, it’s hard for him.
It’s also hard for him to read between the lines or to understand some jokes and sarcasm. He’s had many a meltdown because he doesn’t always understand.
My son also has no filter, and if it’s on his mind, it’s out his mouth, which sometimes means he says things that are extremely inappropriate and embarrassing.
My son also freaks the hell out if there’s a change to his normal routine. If I’m being honest, he gets it from me. I thrive on routine. I hate unexpected changes. This is why I make up our schedules months in advance. Yep, I even plan date nights with my husband in advance because it helps me mentally, emotionally and physically prepare for it. My son is no different. I have to tell him multiple times what is coming up and then have him repeat stuff back to me. If those plans change, even the slightest, he starts heading towards the “red zone”. (If you’re not familiar with the Zones of Regulation, I strongly suggest researching it. It has helped him understand what his body is doing.)
I could go on and on about his struggles, but you get the picture.
Luckily for us, his insurance approved his occupational and speech therapies. (We got the word about his speech approval yesterday.) They give us helpful tips every time we go, which is nice. I feel like we are finally gaining some ground. I know he hates all the appointments, and it’s hard for him to adjust going from appointment, to school, to another appointment, etc. I’m hoping as time goes in, his rigidity lessens and he becomes a bit more flexible. Hell, maybe I will too.
If you’re struggling with getting your child services, don’t give up, no matter what you’re told. If needed, get outside evaluations. I’m glad we did because now we have further documentation of my son’s struggles. If for some reason the 504 doesn’t cover enough, and we need more help for him, I have more information to take into another IEP meeting.
And I’ve gotten tougher. I will not stop fighting for my child and his rights. I won’t give up on him. He needs me.