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.