Twenty-One Realities from Twenty-One Years of Autism

My son is twenty-one. In another reality, I’d be letting him take his old man out for a beer, but that’s not the reality we live in.

I’m writing this on the eve of his birthday. It’s a little after 7:00 p.m. He’s in the living room, having a minor meltdown, crying about nothing, hooting, and “stemming.” It’s an activity he employs to comfort himself, but there is no comfort without the noisy distraction our family suffers through.

When Connor ain’t happy, ain’t nobody happy.

Twenty-one years ago, I didn’t know about stemming, IEPs, and a host of other experiences of the last two decades. I wasn’t even sure what autism was! But here, as my son prepares to enter full adulthood, I can’t help but reflect on the blessings, challenges, lessons, and realities of the last twenty-one years.

1. You Don’t Bring Autism Home From the Hospital

I think about parents whose children have Down’s Syndrome or a physical defect. From the moment the child is born, and likely before, you are aware of the challenges you’ll face. That was not our experience with autism.

When Connor was born, he looked and acted like most any other baby. He progressed, gaining some independence, learning words, taking his first steps, and then, quite suddenly, he began to regress. In a matter of days his words were gone, replaced with babbling and repeated sounds and movements.

Autism didn’t come home from the hospital with us. It snuck in later. When it showed up, it stole what we thought we would have.

2. The World Is Full of Amazing People Who Live to Help

After Connor was diagnosed, we were introduced to speech and communication therapists who worked with Connor for years to help him communicate with us. I can’t say enough wonderful things about the Speech, Language, and Hearing Clinic at Eastern Illinois University. They were awesome!

Connor with one of the awesome clinicians at EIU.

3. Celebrate Every Small Win Because They Are Big Wins

When we’re eating lunch and Connor chooses to use a fork instead of scooping his food up with his hand, it’s because he loves us and knows that’s what we want. You probably celebrate that with a two-year-old, but we still celebrate it!

4. You Can Mourn What You Never Had

Five years ago Connor turned sixteen. That was a rough birthday for ol’ Dad. I wouldn’t be driving him over to get his license. I moped around all day feeling like autism had stolen the day from me.

We still celebrated, though.

5. 3 A. M. Trips to McDonald’s are Awesome

In the early years, before we had meds figured out, some nights Connor simply would not sleep. We’d have to stay up with him, keep him occupied, and hope for the best. Sometimes we just gave up and went to McDonald’s though.

6. Don’t Want to Go to That Party? You’ve Got a Great Excuse Until . . .

“Aw, geez, I’d love to go, but . . . well, you know.” That works great! It got me out of a lot of things I didn’t want to go to anyway.

Until the invitations stop coming.

7. Tag-Team Parenting is Complicated, But it Works

There was a long period of time when Connor’s unpredictable moods made family activities nearly impossible. In those days, my wife and I took turns. We’d each get separate nights out with friends and even managed a few trips like that. The stress of wrangling Connor made it easier to not do things together.

And then all that changed!

At some point, Connor became a lot cooler with trips and new experiences. He loves to go out to restaurants and as long as the hotel has a swimming pool, he’s good with overnighters!

I don’t think we’re ready for Disney yet, but a guy can dream!

Remember that one time we all rode the roller coaster? Connor had fun!

8. There Is No Five Second Rule

A lot of food falls on the floor at our house. That in itself would be ok. The problem is, I’ve watched Connor pick up chicken nuggets with his toes and eat them.

The good news is he’s seldom sick and you’re probably going to be ok if you just brush off that cookie that fell on the floor and pretend nothing happened.

9. People Who Are Scared Will Seek You Out

I’ve lost track of the number of times someone has reached out because they’re afraid their kid has autism. Sometimes they know us, but more often than not, there’s a connection online, or a friend-of-a-friend situation, and they’re scared.

I always tell them to get to a doctor right away, get that diagnosis and get started on early intervention! It makes a huge difference!

10. Sometimes Just Smile at People and Bless Their Hearts

For a lot of people, their first exposure to autism was Rain Man. In the early days, a lot of people would ask what Connor’s “special gift” was.

“Special Gift?”

“You know . . . those kids are all geniuses. What’s his gift?”

“Well, I don’t know about genius, but toss that chicken nugget on the floor and watch this.”

11. Getting Older Scares You In New Ways

Connor’s a big boy. It was difficult when I realized he outweighed me. The day he had a meltdown at Best Buy and I didn’t have the strength to move him was a reality check.

He’s getting bigger, I’m getting older. How much longer can I do this?

I try to stay in shape, I watch what I eat, I need to stay healthy for him. But it’s never going to get easier.

Nap time! I appear to have been a little bigger than I am now, and he was quite a bit smaller.

By the way, we don’t do this anymore either.

12. I Still Get to Snuggle My Twenty-One-Year-Old Son

Just about everyday, Connor comes looking for me, takes out his iPad, and using the ProloQuo2Go communication app, will tell me, “Tickle Me.” Then he drags me off to the bed for an extended tickle and wrestle session that always includes lots of hugs and snuggles.

It’s like we get to live out that “Love You Forever” book.

Jealous?

13. People Are Capable of Great Kindness

Last weekend, we went to the mall and Connor really wanted to ride the escalator, but he was scared. Two young guys came over and encouraged him, giving him fist bumps and telling him they were scared the first time they rode it too. It took a little more coaxing and courage, but Connor finally rode the escalator!

And those two kids might as well have been angels!

14. Sometimes it’s a Struggle to Stay Positive

The average life expectancy for a person with Connor’s kind of autism is thirty-nine.

I don’t like to think about that.

Besides, I have toes to tickle!

15. He Understands Far More Than I Can Know

Connor can’t speak, and that often leaves us with the impression that he can’t understand what we’re saying, but that is so wrong!

This kid picks up on what we’re saying and even subtle clues and movements. He figures stuff out. He knows his letters and numbers and loves to show us how much he can read.

There’s an awful lot locked inside, but what gets out is amazing!

16. Sometimes You Just Have to Laugh

Whether it’s putting his clothes on backwards, bizarre food combinations, or the totally inappropriate music he plays on his iPad in public (how did he find THAT song anyway?!?!?), you can either be horrified or you can laugh.

We choose to laugh.

A lot.

I was studying for a class when Connor decided he needed some attention.

And no, we don’t do this anymore either.

17. Connor Has Made Me More Caring

My wife and I have this “Spidey-sense” when it comes to autism now. You might see a brat having a fit at Walmart, but we see a kid with autism having a meltdown and a parent who needs to know they’re doing ok. We’ve become more understanding and encouraging. We don’t look away when someone is struggling. We do what we can to help.

I didn’t get there without Connor’s help.

18. Did I Mention Amazing People Yet?

Whether they are teachers, administrators, clinicians, one-on-one aides, or bus drivers, Connor has had his share of people who come alongside him, help him through the day, and believe in his capabilities. All of them are my heroes!

19. We Can’t Have Pictures on Our Walls

You know how you go to people’s houses and they have family pictures and stuff hanging on their walls? We can’t do that.

And that stain on the wall? Yeah . . . don’t ask.

20. There’s Some Stuff You Just Chalk Up to Him Being a Boy

I’d love to blame autism for all of Connor’s problems, but I can’t. Those scratch and sniff moments, the noises and smells, and watching him reach up to touch something high on the wall, that’s just boy stuff.

Soon to be replaced with man stuff.

21. I Had No Idea Someone Could Love Me Like This

Connor’s the best prayer partner. I can tell him my fears and confess my sins to him. He keeps all my secrets and loves me anyway.

Oh, and if he ever does start talking, I’m in trouble!

His love is amazing and consistent. After a loud and frustrating meltdown, where he has exhausted himself crying, screaming, and hitting the walls, he’ll seek me out, give me a hug and a kiss on a cheek. We snuggle up I’ll tell him how much I love him.

He hugs me back, pulls me close so he can lick my cheek, then he laughs at me.