When you’re not typically non-neurotypical, it’s really easy to slip through the cracks. This seems to happen time and time again with my kids, especially my daughter.
In the beginning, getting a diagnosis for her was challenging. It seemed like no one ever wanted to believe us when we told them something very spectrum-like was going on with her. When you don’t check enough boxes off on the spectrum disorder list, people tend to write you off. It always felt like I was trying to prove the existence of aliens or ghosts or fairy folk. You can see faint evidence that they might be there but since it’s not in your face proof you get waved off as a crazy person who’s seeing things. Only you see your child struggle to fit in or reach their full potential or get emotionally destroyed by things that most people just shrug off. You know if they got some help or understanding that things could get better. But if there isn’t something tangible like a learning disability or repetitive ticks, it’s invisible so it gets passed over or ignored. Nothing to see here folks, move along.
In fourth grade she was diagnosed with Social (Pragmatic) Communication Disorder, the next problem was getting her help since it is “technically” not a spectrum disorder. It doesn’t matter that half her symptoms are spectrum-like, it matters more that she doesn’t exhibit the other half. She’s Sheldon Light, just one spectrum issue, not spectrumy enough. We were able to change her IEP from anger management issues (yup, that where we started) to autism to get her the help she needed. This worked through elementary school and junior high, in two different school districts in two different states. She got all the support she needed and a team that worked with me every step of the way. She flourished, got good grades, and got better at social interaction.
Then came high school. I’m flagging this play coz the ball has been dropped. Majorly dropped.
It seemed fine in our first meeting, a team was there to help her get through high school. But the reality does not meet up with our expectations. The biggest problem is the tendency for her to be lumped with everyone on the spectrum and not getting services that meet her needs. We’ve gone from ignoring her symptoms to treating her like she has full on Aspergers. What this school doesn’t seem to realize is you can’t treat people who are in the shallow end of the non-neurotypical pool like they’re in the deep end. We need to pick and choose from a menu that is tailored to her needs. Instead, she’s stuck with all of column A or column B, whether she likes it or not.
In that first meeting before high school registration, we decided to take their suggestion of a study hall and gym class geared towards special needs students. My daughter has a hard time in large noisy classrooms, chaos is maddening and can trigger anxiety attacks. She also has trouble running, so she didn’t want to get pushed to run the mile again, something that has scarred her for life in junior high.
Instead, the study hall is a life skills class where she had to sit through sessions for things she’s mastered over the past 6 years. She was coached on how to read other people’s facial expressions and emotions since 4th grade. She can order food in a restaurant and go to the movies by herself. Sitting through these sessions is like going through 4th grade all over again. She knows how to do this, it’s a waste of time, and Sheldon Light doesn’t like to have her time wasted. Oh, and unlike a study hall, this class was graded.
She hated adaptive PE more than she hated LLS. Adaptive PE adapted out most of the physical in physical education. Nothing they do is interesting to her. What’s worse is that she was excited to go to a school with a pool and adaptive PE doesn’t use it. This kid loves to swim laps and is not allowed in the pool. they changed her class schedule midday on the first day of school this year. She had a total meltdown. When I asked her how school was when she came home, she started sobbing and yelling. The school switched it midday because her LLS class exceeded their class limit so they switched her science class for a different LLS class. She was also upset because we had changed her IEP from adapted PE to regular PE but found herself back in adaptive again. This change made her surprisingly upset so I decided to ask for a schedule change. I was shot down and told this schedule will work great for her. Are you sure we’re talking about the same kid?
After a harroring freshmen year, we were hoping things would be better this time around. Instead, they changed her class schedule midday on the first day of school. She had a total meltdown. When I asked her how school was when she came home, she started sobbing and yelling. The school switched it midday because her LLS class exceeded their class limit so they switched her science class for a different LLS class. She was also upset because we had changed her IEP from adaptive PE to regular PE but found herself back in adaptive again. This change made her surprisingly upset so I decided to ask for a schedule change.
We tried to get her out of LLS but her counselors didn’t think it was a good idea and now they’re saying she will lose her caseworker if we do. So she’s stuck with the current schedule. They think she needs the life skills class in the morning to prepare for the day, but she really needs it at the end of the day to decompress. And she definitely doesn’t need all those life skills lessons every day. She just wants to do her homework and have some to talk to when she’s having problem solving or social interaction challenges. Haven’t heard back about adaptive PE yet, unfortunately.
I’m trying to accept that fact that high school can’t give me the accommodations she’s had in the past without a great deal of sacrifice. It often feels like looking a gift horse in the mouth when I complain about how my daughter’s issues are treated in high school. There are non-neurotypical kids that get no help at all. I’m not looking to have her every need met but would like more help than I’m getting. I make sure that she advocates for herself and when she’s had an issue in the past year, I encourage her to talk to teachers and counselors herself. I only intervene when it looks like she’s not getting anywhere on her own or it’s creating a great deal of stress. When no solution can be found, we work on ways to live with it. It’s just frustrating when I feel like I’m at a crossroads of all or nothing help for my teen. I wonder how she will get through college when help will most likely be non-existent. You don’t get in IEP in life.
How does she keep herself from falling through the cracks while she is a living and working adult? How can I stop worrying about it? We’ll cross that crack when we get to it.