Non-Neurotypical Teenager – Slipping Through The Cracks

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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.

Atypically Non-neurotypical

We’ve always been a little bit different. I’ve always felt like an outcast from the outcasts. My husband looks like Jack Armstrong All American Boy, but even he is sometimes just a little too different for other people’s tastes. Our kids seem to the worst and the best parts of us combined but not evenly mixed. Not a blend of quirks and idiosyncrasies that evens out to a mild flavor but a potent taste of the extremes. They are each non-neurotypical in their own way and don’t easily fit into any part of the spectrum.

When I try to explain my kid’s issues, it always becomes a dissertation on the subtleties of their mental state. It always sounds like I’m making it up or trying to gain extra help or sympathy for something that doesn’t exist.

But it does… by golly it does.

When my daughter was young, I wound up taking her to a therapist to find out why she often seemed to teeter on the edge between autism and Asperger’s. The therapist seemed to be bent on debunking every thing I had checked off on the Asperger’s symptoms list. To me, she stood too close when talking to people, and often didn’t make eye contact when talking to you. She tended to read of everything on a grocery store shelf or in the case at the bakery like she was cataloging out loud. The therapist couldn’t see this in our first two meeting so it must not exist.

Another therapist just said she had some anger issues and needed to learn how to control her emotions better. Really? Hiding under a desk or running out of a classroom was just some anger issues?

Everyone kept telling me nothing was wrong, but I knew she was different. It wasn’t obvious to the casual observer, but it was enough to affect her socially and made school very stressful. It took neurological testing recommended by her primary doctor to find she didn’t have Asperger’s but Social (Pragmatic) Communication Disorder.

My son was thrown out of pre-school. Yup, he was asked to leave because he couldn’t sit during circle time so he would wander around the classroom. He had trouble staying on task when they worked on cutting and pasting. Mid year, they said they couldn’t have him be a disruption anymore. In tears, I took him home for the last time feeling like a failed parent.

I home schooled preschool until he was old enough for kindergarten. The school system we were in put kids who didn’t make the August age cut off into a developmental kindergarten class. This class structure worked well for him, so the year went by with little incident. Problems started again in kindergarten. He screamed so long one day that they had to send him up to the principal’s office. I had to have another talk about how disruptive he was. At least the elementary school was willing to help. His teacher suggested it was ADHD. It was the first time anyone understood what was going on with him.

It took until Kindergarten to get help for my son and 3rd grade before my daughter had a diagnosis that got her the help she needed. We were able to start an IEP for my daughter as soon as she was diagnosed. It would take until 2nd grade before my son would get an IEP. Both kids now have a great team, but this comes after moving to another state and finding an even better school district.

While having a diagnosis helps me to figure out how to help them, it doesn’t help others to know what they are going through. Everyone wants to hear either autism or Asperger’s. They can understand that. ADHD is a more common, but people still don’t quite understand it. Some think it even doesn’t exist. There’s also more going on with my son than just ADHD; there are some executive function issues as well.

Social Communication Disorder, on the other hand, is way off the beaten path for most people. Explaining it requires a lengthy program note. I tend to refer to it as Asperger’s Lite or Sheldon Lite if they’re familiar with Big Bang Theory. Yes, she can experience empathy and doesn’t have the debilitating repetitive obsession, but that doesn’t mean she can easily interact with other people. Sometimes it’s challenging for her to remember that conversation is a volley back and forth, not just her talking endlessly about a single subject.

On top of all this, neither one of them has a learning disability. In fact, they’re quite brilliant. There is a shadow over that brilliance, and it’s the daily struggle with their unique brand of mental illness.

Oh, and it took me a long time to just own that term. Yes, it is mental illness. They both suffer from anxiety and depression. My son is often overwhelmed by his anxiety and can’t easily regulate his emotions. My daughter has social anxiety and is can sometimes be crushed by depression. There are layers of issues, and each one seems to trigger another. Anxiety can keep them from getting a project done without panicking, which makes it hard to problem solve when they feel overwhelmed. Depression and anxiety erode their self-esteem.

There are other roadblocks. My son has a hard time pulling information from his head and putting it down on paper. His handwriting is often nearly illegible. His executive dysfunction can make it difficult to take or complete a test. Sometimes homework is a nightmare. My daughter will have a hard time taking a test if there is too much noise in the room. She used to find it difficult to work in groups.

They both have sensory issues. Neither will wear jeans, and they find the seams very uncomfortable. They both hate loud high pitched noises. They both can be very forgetful. They also take things quite literally. It’s lessened as they’ve gotten older, but when they were younger, we had to be careful with things like sarcasm. They are more flexible than kids with autism or Asperger’s but have more trouble transitioning or getting used to new routines than neurotypical kids.

I was thrilled when my son’s therapist described them as “non-neurotypical” for the first time. It captures who they are quite well. Still, I’ve often found it easier to say they are on the spectrum. If a spectrum contains all the colors of the rainbow, then it should include all aspects of non-neurotypical brains. My kids exist in a gray area, neither here nor there on the spectrum. My husband and I also dwell in this realm. Atypical yet high functioning. None of it easy to define, or diagnose. We’re all doomed to wander through the shadows of the spectrum. Navigating the dreamlands the best we can.