Coming Face to Face with Normal

A few weeks ago I found myself at an event with lots of adults and kids. But not just any kids. Seven year old kids.

Specifically, seven year old boys. Boys that are the exact same age as my son.

My son’s peers.

I should have felt right at home. I am a mom. I know boys.

My son is seven. Except, I felt like these boys and their moms were speaking another language. I don’t know anything about seven year old boys. Not really.

My son may be seven. But in reality he is far younger.

He has been watching Barney and Thomas since he was 9 months old. He doesn’t do any of the things a seven year old boy does.

I subconsciously avoid events like these. PTA, little league games, choir concerts. It’s too hard. It’s too hard to see what it ‘could’ be like.

Of course I take my five year old….because that’s different.

He is five. He is the younger brother. And while it still stings to see him and his peers pass Cooper…it’s just different. Or at least I tell myself it is.

And yet, here I was with my five year old. Amidst a crowd of moms and children. It was loud. It was crowded. I did an immediate scan of my surroundings.

There were no outlying children. There were no moms chasing an eloping child. There was no head hitting or screaming or meltdowns.

I got my bearings. I reminded myself that today I was Sawyers’ mom. Just, Sawyer’s mom.

And with a smile and a loud ‘BYE MOM,’ Sawyer was off to play with his peers. My social butterfly.

I too smiled at my peers. Moms. Nice, calmly sitting, friendly, wonderful mothers.

I was immediately asked about my life, kids, job, home town. We all know the drill. I

told them I have a seven year old son who is at home and I was here with my five year old son Sawyer.

Typically, at this point, someone recognizes me. Someone brings up autism. Or, I launch into a ‘my other son has autism and that is why he is not here’ explanation. I then answer questions.

People are curious and I welcome their questions.

They always want to know about nonverbal. Sometimes the Good Doctor comes up. Almost always Julie the Muppet.

Sometimes I get sympathy. I’ve heard ‘I’m so sorry.’

Sometimes I get praise. I typically here ‘ I don’t know how you do it.’

I always hear about the children they know that have autism. That’s the most common one.

It can be a lot. Especially when you are out with your five year old and you just want to be a plain old boring, yoga pants wearing, coffee drinking, talk about the weather, mom.

Today, I really didn’t want to talk about autism.

I was tired. I was feeling the emotional side of having a child with a disability.

I wanted to be quiet and blend in. I didn’t want the drama of autism either. You know the drama.

Every day is something new. A new behavior. A benefit lost. A fight over an IEP or with a doctor. At times my life feels made up. I feel like I’m being dramatic.

I feel like others outside my world can’t relate.

I didn’t want any of that today.

So, I simply didn’t bring autism up. I didn’t lie. I would never lie about my amazing son. I just said my son was at home with his dad. And that was it.

I heard an ‘he must be so bummed to be missing this today. My boys have been talking for weeks about this event. And how is school going? What sports is your son in?’

I was flooded with questions.

I just smiled and diverted the conversation. I didn’t have any answers. I could say, ‘my son has no idea this event is happening. Nor would he care. He doesn’t talk to me about anything. He doesn’t go to school. And he doesn’t know or care about sports.’

But I didn’t. Not today.

Instead, I changed the subject to something else.

In case you are wondering, I always talk about autism.

Every day I educate and advocate. Sometimes subtly. Sometimes loudly.

I don’t hide my son. It’s important to note that because when Cooper was first diagnosed I was slower to share that info. I didn’t know enough. I thought maybe it would go away. I didn’t want sympathy. I didn’t want to talk about it.

So many reasons to not openly disclose it.

But at age seven, I can now say, ‘my son Cooper has severe nonverbal autism’ to any crowd, in any setting. That took a while.

It’s hard saying something like that out loud at first. It takes time.

As I sat there surrounded by parents I realized I was surround by parents that didn’t have kids in special education. Then I realized I was surrounded by the people I subconsciously avoid. Not to be mean. I know they are wonderful people.

My life is just different and I often don’t feel relevant. I feel out of touch.

I don’t know what seven year old boys like. I don’t even know what they do. Or, how they are act.

I avoid events like this because it’s incredibly hard on my heart. I recently learned that my friend’s son, who is seven, can read and write. I cried myself to sleep. I didn’t know.

The gap is even larger now between what my son should be doing and what he can’t do.

So, you can imagine my anxiety when I found myself surrounded by typical kids…with typical parents.

I didn’t recognize any of their faces. I know the faces of the parents of children with disabilities. I’ve cried with many of the moms. Vented with them. Consoled them. Those are my people.

We meet for coffee. We attend Special Ed meetings together.

Secretly, I’ve often wondered what I’m missing out on. What ‘could’ life be like if my son didn’t have autism.

I know I’m not suppose to say that. But it’s the truth.

My son doesn’t do any of the things a seven year old boy is supposed to do. His days are ABA Therapy, Barney, Thomas, doctors appointments, and home. He doesn’t want to leave. He doesn’t want to play.

As I sat I overheard parents talking about sports signups and how expensive and time consuming it all way. One parent had a son in five different sports. She said she couldn’t keep up. Why does her son have to be so active and social.

I just listened. I smiled and nodded.

I overheard a mom tell a story about how she has to remind her son to shower. Every day. It’s driving her crazy. I smiled. I bathe cooper. I do all of his self care actually. She went onto say…will I have to remind him to brush his teeth when he’s 16? I smiled again. If she only knew.

I overheard a dad say he’s tired of running kids to and from events. Sports, choir, band, friends. I just smiled again. I get it. I feel like I’m always running kids too. But my trips are to therapists and children’s hospital. What I would give to have my son be in a sport or a club.

I overheard a mom say, ‘My child talks nonstop about video games. I know nothing about video games. I want to put my headphones on half the time and drowned him out.’ I smiled.

My son has never said a word to me. Not one. He has never talked my ear off about anything. He has never asked me a question. What I wouldn’t give to hear him go on and on about trains. I can’t even imagine.

Another mom said, ‘We spend all of our time in these bleachers. It’s great. I love sports. But I need a life too!’ I nodded again.

I spend all of my time in waiting rooms. Or at home. Because we can’t leave.

I sat there with a lump in my throat.

I watched boys form groups and talk about drones and Star Wars. They were excitedly animated. They were running around and almost wrestling at the same time. I watched one boy playfully punch another in the arm. I noticed their shoes, shirts and pants. I noticed their haircuts.

They were little boys who were growing up. Such big ideas. So loud and so much energy. They had minds of their own.

One little boy was planning his birthday party with his friends. He wanted all 20 friends to come. And he wanted a pool party at a water park.

He ran to his mom to fill her in on his plans. She smiled at me after he left she said, ‘I will lose my mind with 20 little boys. I’m glad he’s popular but that is going to cost a fortune.’

I smiled and said, ‘I would too.’

We’ve never had a friend birthday party for Cooper. Nor has he ever been invited to a birthday party. My son doesn’t understand nor does care. We are just happy if he will let us sing him Happy Birthday.

One mom said, ‘My son has a birthday party every weekend for the next two months. I’m going to lose my mind.’

That one stung.

Another mom said, ‘My son is growing up so fast. I rarely see my little baby in him anymore. He’s like a teen. He has friends and clubs and groups. How do we stop time?’

That one I understood. But in a different sense.

My son isn’t growing up. I still carry him. I kiss his owies. We play peek a boo and sing songs. I hold his hand everywhere we go. He looks at me like I hung the moon and the sun.

I may get my baby forever.

About halfway through I excused myself and went to my car. I sat in the seat and cried. I called my friend that also has a child with special needs. I told her that I don’t have a normal life. I don’t know anything about it. I told her I felt irrelevant.

And as her autistic son screamed in the background, she said, ‘me either.’

This is the first time I have came face-to-face with what I am missing out on. With what normal could look like.

It took my breath away. I didn’t know 7 year old boys could have so much vibrancy. So much life and energy. I think I’ve blocked it out.

I walked back in with a smile and rejoined the conversation.

I don’t regret not saying that my son is different. I don’t regret it because I wanted to know what it felt like. Just once.

I was the mom who sat and listened. I didn’t run, chase, defend, advocate or answer questions.

It was nice just to blend in for once.

(I want to add that ALL of these parents were absolutely wonderful people. Not one of these observations is negative.)

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.