Sometimes I Forget

untitled2 (1)

Sometimes I forget.

I know I shouldn’t. I mean, come on, it’s been 8 years.

This isn’t necessarily new.

And it’s been a long 8 years at that.

It’s been so much trial and error.

We’ve moved.

We’ve seen countless doctors, therapists, and educators.

They all say the same thing.

Autism.

And then severe autism. After that nonverbal autism.

Level three and then level four and back to level three.

Apraxia.

Severe intellectual disability.

Anxiety.

In a way it’s like our life became checkboxes. Words on an evaluation.

I always found it strange that such a little boy could have so many descriptors.

I am in the best place possible with all of this.

I want to make that clear.

In the beginning I was lost. Then I was energized. Then defeated. And now, at peace.

I advocate. I write. I speak. I share the good parts and the challenging parts.

I feel everything. I embrace the weight of it. I smile at the beauty and laugh at the innocence.

I’m not nearly as afraid as I used to be.

I can look into the future and not cry.

I’ve added more words to our list. Ones that I have to think about.

Life long care. Guardianship. Forever.

But, even after all of that, sometimes, I still forget.

See, we are in this amazing place right now.

We have stopped the never ending rollercoaster ride. We’ve gotten off.

We’ve planted a flag in the ground and are standing still.

ABA therapy started the good. Figuring out medications to help with his anxiety and ADHD  saved us.

And now, suddenly, it’s not so hard anymore.

We have good days. Where it used to be good minutes or maybe an hour…now it’s good days. Good weekends. Hopefully good weeks.

No meltdowns.

No off the wall behaviors.

It’s sleeping through the night.

No fighting over food or pants or swimming.

No hitting. No screaming. No self injuring.

Suddenly, I am smiling more. I am sitting and watching my children in my living room. All three of them.

I relax.

I’ll watch him do something so casual, so natural, like sitting next to his brother.

No outbursts. No flapping. No screeching.

I’ll ask him a question.

And he’ll look at me, smile, and respond with a sound that sounds like yes.

And, just like that, I’ll forget.

For a minute. Maybe even an hour.

I’ll forget that it’s autism. I’ll think maybe it’s better now. Maybe, just maybe…

I’ll forget that it’s lifelong.

I’ll forget that it’s so severe.

I’ll forget all the hard years we’ve had.

And it won’t be autism.

The label will be gone. The diagnosis lifted.

And I’ll see my boy laughing. Sitting. Smiling.

The hard parts of the autism will be silent for a bit.

I’ll let myself think about the maybes.

Maybe he’ll learn to talk. Maybe he’ll learn to play. Maybe he’ll be able to leave our house.

Maybe he’ll be able to go to school one day. And graduate.

Maybe he’ll make a friend. Maybe he will want to move out and live independently.

Maybe, just maybe.

Maybe this isn’t so serious.

I’ll feel a thousand pounds lighter.

But it’s autism. And it returns. It’s a marathon, not a sprint.

And new challenges are always just around the corner.

But in the forgetfulness, I’m thankful for the moments of peace.

They are new to our family.

And right now, they are everything.

Interested in writing for Finding Cooper’s Voice? LEARN MORE

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, subscribe for exclusive videos, and subscribe to our newsletter.

Avatar photo

Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

Share this post: