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Parenting on the Spectrum

Parenting on the Spectrum

J was a difficult child from birth. He didn’t want to sleep unless he was in skin-to-skin contact with someone; he didn’t sleep through the night until he was four years old. He said “no” to every request and whenever he got frustrated or angry, he screamed. 

Oh, and he was a headbanger. You could see him size up the options—there’s a tabletop, a table edge, or a table corner—which should I bang my head on? Given those three options, he would choose the corner every time. But he didn’t seem to feel pain in his head. In preschool, he was running from the teacher who was calling him in for lunch and laughing over his shoulder at her when he ran head first into the swing set pole. He had a huge knot on his forehead, two black eyes, and no tears. I used to get kicked out of stores with dirty looks because people assumed I abused my child.

Preschool Expectations

In that same preschool, a teacher explained to me that preschoolers are developing along several paths at that age: intellectual, physical, social, and emotional, and different kids progress along those paths at different speeds. J was well advanced on the intellectual path and was adept at his gross motor skills physically, although he was short for his age. But he failed at making friends or knowing what was appropriate to say to people. When he was unhappy, everyone knew it. He cried, he screamed, and he swore. I used to have to pin him to the floor to keep him from hurting himself or others. A memory we can laugh about now is that once he was pinned, he spit up at me, only to prove that gravity works.

He started kindergarten when he was old enough, but in retrospect, we should have waited another year since he just wasn’t mature enough. His teacher advised us that we could pull him out  mid-year, or she would put a note in his file that he was a ‘problem child’. When he started kindergarten again, he had a very sweet teacher, but steam rolled right over her. His first grade teacher recognized that J wanted a challenge that he could be successful at. She gave him the same assignments as the rest of the class but with some extra challenges. He thrived in her class. The second grade teacher also gave him ‘special work’ to do when he had finished his classwork, and this seemed to cut down on the classroom disruptions J caused when he was bored. We asked for him to be tested for the gifted program for third grade, but the evaluators felt he wasn’t mature enough. Third grade—well, we’re still getting over that trauma. Word was getting around about J being trouble.

In fourth grade, we got a break. Not only a teacher who was used to working with gifted kids, but a new classmate named B. B was a girl with high-functioning autism and she and J, after a rough start, became each other’s support system. A few months into fourth grade, B informed J that he too was autistic. We went back to the doctor for more tests and started working with a therapist. But there is no diagnosis yet. Middle school was full of challenges, suspensions, and parent-teacher conferences. We found that when he was in the midst of a meltdown, if we could derail him with a joke, it could stop the tantrum. My favorite was “What do you call a fish with ten eyes? Fiiiiiiiiiish. 

Over the years, J has displayed a decided gift for engineering. Our school system had a specialty school program for high school, and one option was engineering. J applied and was one of about 80 kids in his freshman class in the engineering program. But other students refused to work with him on group projects because he was so opinionated and when he was ignored or belittled, he cried. J grew up being told by his peers and a few teachers that he wasn’t ‘normal’. At the end of his freshman year of high school, his Scout leader told us he would never make Eagle Scout because no one liked him. His teachers told him he really wasn’t cut out to be in engineering because he was so emotional and he should drop out. Which, of course, caused him to burst into tears and run to the car.

“Watch me”

On the way home from that meeting with his teachers, J pulled himself together and took a deep breath. I asked what he thought about their suggestion, and did he think he could continue in the program? “Watch me.” 

I remember saying it to my parents when I was young. Watch me do a cartwheel, watch me ride my bike, and watch me sing in the choir. But my youngest child took those words and made them a promise. That’s where everything turned around.

What happens when you help them turn words around? Normal is the term used for people in the middle of the bell curve. The other way to look at that group is ‘average’. Who wants to be average? Well, every kid who’s ever been marginalized by the ‘normal’ kids. Autistic kids tend to take a very black-and-white view of the world. They get labeled as stubborn. Couldn’t you also call them strong-willed? Doesn’t that sound better and more positive?

Diagosis, please?

We took another shot at autism testing. He was finally diagnosed at 14. He went back to the engineering program with a speech, which he gave to every single class he was in, explaining his diagnosis, how it affected him and how it would affect them. He explained that since he now had a diagnosis and that they had been told about it, any problems that were caused wouldn’t only be laid at his feet. He carried ‘bully slips’ in his pocket, and when someone started to tease him, he would ask them to pause, pull out a slip and ask them to spell their name so he could fill the slip out correctly. That stopped a lot of people. He also corrected the people who told him he wasn’t normal and advised them that he was extraordinary.

Finding a new talent

He joined the theater program and worked on the stage crew. Not always successfully, but he was incredible on the follow-spot or sound board—minimal interaction with others and total control of his job. He found people who accepted his quirks, or at least didn’t discount him completely, when he had a ‘moment’. He dropped out of the Scout troop and helped build a new troop that took boys and helped them regardless of their challenges. He became an Eagle Scout at 16. He approached his public speaking merit badge from a new angle because he felt everyone would talk on the same old themes for 10–15 minutes. He gave a great speech on lint. 

He began to excel in school. By his senior year, over half the kids in the engineering program had failed out or returned to their home school. J kept trudging on. It was hard, but now some of the coping mechanisms he had developed when he was younger are starting to help himself and others. He shared his study sheets with classmates, and that helped. He made the honor roll and graduated high school in June 2020—the COVID class. 

Applied to College

He applied to a big college close to home because he wasn’t sure he was ready to be away from home. He was accepted and went to live on campus. Everyone got a single bedroom because of COVID, and the majority of the classes were done online, so there was no teasing, hazing, or conflict. He got in touch with his classmates electronically and created online study groups for every class. By the second semester, he was creating QR codes for each class’s study group and continuing to share his ever-evolving study sheet. People were starting to recognize him on the street. He was making friends and figuring out the social expectations of college.

Graduation

He is graduating this spring with a B.S. in mechanical and nuclear engineering with a concentration in nuclear engineering. He is a member of Tau Beta Pi, the oldest engineering honor society in the country. He is presenting two papers at the American Nuclear Society Student Conference and is graduating Summa Cum Laude. After graduation, he was offered a Graduate Assistantship, which would not only cover his tuition for a doctorate but also pay him to continue his research in neutronics with his two favorite professors. 

Humble brag

Other than flat-out bragging about my kid, why am I telling you this? Because I want you to know that a diagnosis of autism doesn’t force your kid down a path they weren’t intending to take.  Extra challenges along the way? Absolutely. Longer to get all the developmental criteria caught up to the average kid? Sure. So what tools do you give your child to help them cope?

Getting a diagnosis, whatever it is, and telling your child what is going on are crucial. Tell them why they are different from the others. Tell them why they take medications and what they do for your child—and for others. Ask them what they want and how you can help them achieve it. Let them know that ‘different’ isn’t bad; it means they aren’t average; they are extraordinary. 

Give them the right to stand up for themselves, to self-advocate, and to tell others what they need.

Give them the language they need—average versus normal, strong-willed instead of stubborn.

Be honest with them, and listen. Ask questions. Remember that eye contact can be tricky with autism or with teens in general. I found that a long car trip was a great place for a conversation. Food works too; try a diner with a counter. No eye contact is a great excuse to pause and consider a response.

Talk to their teachers and groups they associate with about their diagnosis. Explain what the challenges are, and let them know how they can help. Ask for their help. A mentor would be great, and a friend who understands is also great. B, the girl from fourth grade? She’s been his best friend and girlfriend for over ten years.

 

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