Inside This Autism Mother’s Mind

Hi.

My name is Carrie.

I have five kids, and my second son is diagnosed with autism. 

His name is Jack, and he was born on Mother’s Day seventeen years ago. Technically speaking, he is a junior in high school.

Six months ago, we signed Jack up for a 3-week summer program at a nearby college.

The college is designed for unusual learners, with a lot of support for both academic life and social skills. 

It seemed like a good fit. I mean, yes, at first Jack screamed and said swear words whenever we mentioned it, but after a while he warmed up to the idea. I’d even go so far as to say he was looking forward to it. He talked about staying in a dorm room and eating in the cafeteria. He was planning to pack his favorite shirt, the green one with Sprite across the front.  

Last week, we got an email announcing that, due to COVID and new guidelines, there have been some changes in the schedule. 

The start date has been moved up by a week. It’s mandatory. Small groups will quarantine for a day, until they can organize testing. Instead of three weeks, it’s a month.

My stomach sank.

I closed my laptop, and then I did what I always do when I’m confused, worried, or unsure. 

I complained. 

Really? Are they serious with this?

It’s so stupid he was finally on board, how am I going to explain this to him now?

I mean, why can’t anything be easy for him?

After the complaining, I give myself space to think big, messy thoughts. But here is the key: I don’t judge the thoughts, no matter how weird or loud or ugly they are. I just let them float by, like so many colorful butterflies. 

This whole thing is ridiculous. How on earth can I expect him to be away from home for a month? 

There’s no way he could do that.

But what if he could?

It’s too long. I’ll miss him so much. 

But it might be a nice little break.

I shouldn’t think things like that.

I don’t need a break!

Maybe a little break.

What if someone is mean or he gets homesick?

I would never forgive myself. 

I would go crazy if anyone hurt him.

He’d be surrounded by people who understand him.

I don’t always understand him.

He might get mad if we push him to go. His temper, which has been somewhat dormant for a while now, might rise to the surface again. 

He’ll miss the family barbecue on the 4^th of July.

He lives for that day.

He started talking about it before we even put the Christmas decorations away. 

He loves his cousins. He’s so calm whenever they are around. He knows they understand him. 

Forget it. He can’t go away. He loves his family and family comes first. 

But he has no friends. 

I’d give anything to see him make a friend. 

What if it rains on the 4th of July?

Maybe we’ll just skip it this year. He can always go next summer.

Except the timing is perfect. He can get a sense of what college might feel like right before he starts his senior year.

He might actually go to college.

He might live a life outside of this house and be happy.

All I ever wanted was for him to be happy.

He will be so upset when I tell him. 

I am tired of breaking his heart.

I think he could do this.

I believe in him.

This is how it goes for me. This is my process.

First I hurt, then I hope, and only then can I begin the work.

The hard, raw, ordinary work of nudging him forward, while protecting his tender spirit.

It is the steady push-pull of progress versus status quo.

It is constantly re-evaluating my role as his mother. 

In the work, I ask myself questions.

What can he do?

Who can he be?

Most importantly, what does he want?

I’ve said it before, and I will say it again. I don’t know how to live alongside this boy and not hurt.

And everything I long to tell him—all the words I want to say—are often lost in autism’s translation. 

I am proud of him

I believe in him.

I see how hard he tries. 

Hurt.

Hope.

Work.

This is the formula of an Autism Mama’s heart.

At first, we are scared and our mind jumps all over like a child splashing in a puddle. 

Then, we find hope amidst the luminous butterflies. 

Once we are scared and feel our good hope, we can consider the solution.  

You can’t skip over any of the parts, that’s the problem. You can’t bypass the puddle to find your colorful wings. It doesn’t work that way. You have to experience it all.

Listen, I don’t know how to be a world-changer. I don’t have the right kind of fire beneath my ribcage for that. 

But I watch this boy wake up every morning. I watch as he empties the dishwasher and toasts his waffles.  

He packs his lunch. He looks at the clock until it’s time to walk out the door.

Again and again, I see him find his footing in a world not built for him.

And yet this does not stop him. He wakes up, he tries hard to be a good human, and the next day, he does it all over again.

And because of him, a small corner of the earth is different. You might even say it’s a little bit better.

Hurt, hope, work. 

In the end, we left it up to him.

This wild-child, dream-chaser, Sunday son of mine.

For I will try it. I will try. 

Buddy, are you sure?

I think maybe. I can do it.