Making Space for Sad

And setting down the guilt associated with those feelings

Apr 11, 2023

I never thought I would have four kids.

I’m not sure if I’ve ever shared that before. I thought two, maybe three. But four? It still surprises me sometimes.

Four is loud. Four is chaotic. Four is wonderful. Four is fulfilling.

Today I woke up first. Which most definitely surprised me because as my two middles went to sleep last night, I heard them plotting to wake up early to catch the Easter bunny.

As I got the coffee going my third son came downstairs. Together we woke up Sawyer and the baby.

We hunted for baskets, hand-in-hand.

It felt almost magical. One basket hidden in the dryer. Another one in the hall closet. Bright wrappers were ripped off chocolate rabbits. Bubbles were opened.

Wonder. Messes. Joy.

While that was happening, the loudness and the chaos, my oldest sat in his favorite chair watching his iPad, barely glancing up at us.

I thought maybe he’d get up and join in. Hunt for his basket too. But no, he wasn’t interested.

Autism. On the paper in my drawer, it says severe and level three, and nonverbal.

I don’t think about those terms all that much anymore.

His name is Cooper. He wants to go to a rock quarry. He asks me 100 times a day. He wants to ride a bullet train. He loves noise. His feet are bigger than mine. He holds my hand when we walk outside. And knocks on every door before he enters.

He doesn’t care at all about Easter baskets. Or dying eggs. Or candy. Instead of eating our special Easter dinner he had chicken nuggets and strawberries. He chose not to wear a button up shirt with a tie today.

He took a three-hour nap.

To some, the day did not appear special at all to him. Nothing out of the ordinary.

But it was. If you look beneath the surface. If you listen with more than your ears.

Because his family came to visit.

He waited in the driveway for over an hour. He gasped and pointed. He touched his ears as a siren blared. He pointed to birds. He put his cheek to the cool ground. He studied rocks. He lifted sand and watched it fall to the ground through his fingers.

He said ‘mmm-aw-mmm’, slowly pronouncing each syllable for a beat and when I looked up, he smiled, his eyes looking to his forearm.

A bug. It sat on his arm. Big and black. A fly.

And he squealed in delight. Clapping. Then bringing his hand to his chin, signing ‘thank you’ to the fly.

As I settle into belonging to a boy with autism, I’m working really hard on acknowledging the feelings that accompany me on this journey.

Good. Hard. Sad. Worried. Scared.

I’m making space for them. And setting down the guilt that can happen too with big, real feelings.

I’m sad sometimes. About Easter baskets and church and bow ties and missed experiences.

But good golly I am thankful for the yellow haired boy who has taught me to see with more than my eyes.

It’s a gift, really.

The gift of sight.

NOW WATCH THIS

We had our most successful outing ever last week. Nearly 3 million people have watched a clip of this video on Facebook and so far, only one negative comment. Someone accused Cooper of killing all of the trees. Sigh. You can’t win ‘em all.

UPCOMING EVENTS

April 14 @ 5:00 pm - 7:00 pm

Book Signing and Reading: Fitger’s Book Store, Duluth, MN

The Bookstore at Fitger’s 600 E. Superior Street, Duluth, MN

Join me on Friday, April 14th from 5:00 - 7:00 for meet and greet and book signing at The Book Store at Fitger’s in Duluth, MN.

April 18 @ 5:30 pm - 7:00 pm

Finding Cooper’s Voice Sharing A Parent’s Journey

New Prague High School Auditorium 221 12th Street Northeast, New Prague, MN, United States.

April 21 - April 23

Mother’s Day Retreat and Conference 2023 in Pittsburgh

Pittsburgh, Pennsylvania

I am excited to share that I will be the keynote speaker for Autism Caring Center's Mother's Day Retreat in April 2023 in Pittsburgh! More information to come! Learn more: Mother's Day Retreat (autismcaringcenter.com).

**I will be hosting a meet and greet on April 21st in Pittsburgh. To join the event, upgrade to being a paid supporter either here or on Facebook.

May 17 @ 6:00 pm - 7:30 pm

Forever Parents, An Autism Support Group

Woodbury, MN, United States

Please join us at Forever Parents, an Autism Support Group with Kate Swenson from Finding Coopers Voice. This is an in-person event in Woodbury, Minnesota for parents and caregivers of children (any age) with disabilities. This will be a safe place for caregivers to discuss their experiences and share resources. This group will also provide caregivers with information, training and tools, and assist caregivers in building a supportive network.

Thank you for being here. For listening and learning. For loving and supporting our family. And believing in Cooper.

We appreciate you so much.

Kate

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Dear Reader,

When you have a child diagnosed with something, anything, your world changes in an instant. It gets smaller for one. Suddenly, you feel like you are the only person on this planet going through this unique thing. And you feel alone. I know I sure did. I can say for certain that the beginning of my journey into autism would have been entirely different if I had found someone who I could relate to. This book will do that for you. As you read, I hope you find yourself nodding along, finally feeling understood in something that can feel so isolating. But also seeing hope and joy in a little boy and a misunderstood diagnosis.

Whether you have autism in your life or not, I hope you enjoy reading Forever Boy. And that the yellow-haired boy who adores trains and covers his ears at the grocery store impacts you in a positive way. So next time you see autism, you choose grace and kindness.

—Kate Swenson

Buy Forever Boy