My son Jayden looks like a normal teenage boy. I see him as silly, funny, sweet, affectionate, and intelligent. When new people meet Jayden, they always fall in love with him. He’s wiggled his way into the hearts of so many people. And yet Jayden is not your typical teenage boy. Jayden has autism.

In 2001, when Jayden came into this world, 1 in 150 kids were said to be on the autism spectrum. And as a commonly thrown around adage says, when you’ve met one kid with autism, you’ve met one kid with autism. Each autistic child is different. They have different joys, different struggles, and different personalities. Jayden, at 15, is mostly nonverbal but he communicates in different ways. He has the singing voice of an angel and enjoys singing insurance jingles. (“Like a good neighbor, State Farm is there!”) He’s fairly talented on a set of drums. And he can work YouTube like a boss. He often listens to the same music or cartoon video repetitively. (Thank God for headphones!)

Jim and Jayden

But Jayden experiences the world around him differently. His heart beats faster than mine, and he can hear it. Sometimes the clock ticking on the wall is the loudest sound in the room. And seemingly everyday noises, like a hairdryer or a vacuum running, or certain words we call “trigger words,” can send him into a meltdown. And sometimes just the overwhelming experience of being out in the world can cause a meltdown.

Unlike most 15 year olds, Jayden can’t be left alone. Ever. He needs to wear GPS monitoring because he has a tendency to run away. He doesn’t know how to look for cars before crossing a street. Finding a sitter is nearly impossible because people are afraid of him. They don’t understand how to interact with him. Luckily we have a wonderful respite worker to help us out.

But simple, everyday things that other parents take for granted, we have to adapt, carefully plan, or forgo all together. For example:

Grocery shopping. I have to put Jayden in a wheelchair. If I don’t, he thinks it’s hilarious for me to chase him around the store. He’s knocked over coffee filter and spice displays, and it’s just easier for everyone if he’s simply riding around vs. running.

Daily cares. Most 15 year olds are bugging their parents for brand names, but my son cannot even dress himself. We still have to brush his teeth, bathe him, and get him dressed everyday.

Rearranging furniture. Not so much that we can’t do it, but HE does it. He moves the refrigerator, the washer, the dryer. He’s incredibly strong.

Consistently non-broken faucets. Jayden loves running water. So much so, that he’s been known to overextend faucet handles which has caused floods and water damage.

Chatting with my son. As I mentioned, Jayden is nonverbal. I cannot sit and reminisce about the old days with him. I can’t impart wisdom about being a man. And I can’t have a regular angsty teenage argument with him. I can’t explain that he’s going through puberty and he can’t tell me how it makes him feel. While he is gaining some verbal skills, it’s not what most parents experience with their kids.

Closets being just for storage. When Jayden gets overwhelmed, he has a blue yoga mat on the floor of his closet that he chooses to stand on. It’s a self-calming ritual for him.

Opening windows. He pushes the screens out. It’s destructive and possibly dangerous for him.

Regular sleep. The first three years of his life he would be awake for four to five days at a time. He’d sleep for two hours and then go another stretch of four to five days. Now it’s controlled with medication, but it knocks him out so hard that he wets the bed at night and must wear diapers.

Going to the beach. He loves the feeling of sand on his hands, but unfortunately I can’t take him to the beach. He gets so excited that he throws sand at everyone else. 

I’m not asking for sympathy, because I have an amazing child in my life. But I want to paint a picture of what life is like for us. I want to advocate for support for kids like Jayden and for families like ours.

The most recent numbers I’ve heard is 1 in 68 children are on the autism spectrum at this point. One in 68! I worry that our schools are not ready for these kids with budget cuts and lack of staff. I worry that there’s no incentive for members of the next generation to become special needs educators and professionals. I worry that as the numbers grow, the services and support will dwindle. I worry that the people who are doing remarkable things for these kids every day, like the staff at Delong Middle School, won’t get the recognition they deserve and that my “thank yous” will never be enough. I worry that kids like Jayden will be judged for behaviors they cannot control, for seeing and feeling the world differently. I worry. I worry a lot.