Remember Today

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Dear Mama,

Do me a favor, and remember every detail of this day—all of the words, sights, and sounds.

Remember the tone of the doctor’s voice, and the way the receptionist smiled.

Remember the way your heart hammered in your ribcage when you first heard the sentence.

We believe it is Autism Spectrum Disorder.

It was raining the day my son Jack was diagnosed. The doctor was very gentle, and kind. He watched Jack whirl and spin around the small room and collapse in tears when he bumped his shin on a filing cabinet.

He asked me if my son ever comes to me for comfort, and with that single question hanging in the air like a lead balloon, I knew. I knew the truth.

We all have a defining moment, don’t we? When we knew for sure life would never be the same.

For a while I operated under the guise that he would outgrow it. Autism was something we could cure with enough speech, occupational therapy, fierce love, and determination.

He is sixteen now, and he hasn’t outgrown it. I want to be up front about this. I don’t want to mislead you.

He hasn’t outgrown it, but he has changed and progressed in ways I never imagined.

Now here comes the sticky part, where I have to give you some advice. I know, I know. You didn’t ask for it, but I am obligated to dole it out anyway. You see, I have been here before.

First of all, let your partner grieve/bond/connect/play in their own way. You cannot be in charge of everyone’s feelings. You’ll have your hands full enough with your own big thoughts and emotions.

Secondly, do not—I repeat, do not—turn to the Internet for solutions. Sure, maybe hook up with a parenting group or two, chat online with like-minded mamas, follow bloggers who speak to your heart.

But the Internet does not have all the answers. It is not a substitute for your gut instinct, or your mother’s intuition.

You have it, you know. Intuition. You know your child better than any online list of symptoms or articles about meltdowns.

Picture the autism community like one big swimming pool. Some prefer to dip their toes into the shallow end, and take their time. Others want to dive right into the deep waters of gluten-free diets, 40-hour a week therapy, and horseback riding.

Stay in your lane. Figure out what is best for you, and your family. Do not be afraid to swim against the tide.

Oh, and speaking of time, throw out the proverbial clock ticking inside your head. You are on autism’s timeline now.

On the days you feel isolated, and alone, and worried, and unsure, reach out to someone.

Call, email, message, text. Do not hibernate. Do not sit with your anxiety and your scary thoughts and your loneliness. It will not serve you.

Take care of yourself. Autism is a marathon, not a sprint. Do yoga, walk the middle school track, read mystery novels, take a bubble bath. Do all the things that make you feel whole and good and right—that make you feel yourself again.

Lastly, never forget that we walk beside you. Legions of mothers who share your pain, your laughter, and your gentle hope. Remember us when the days feel long and futile—because sometimes, they will.

Let us join you in quiet celebration.

Let us lift you up in your darkest hour.

You are not alone.

For now, remember today, the day your life began anew.

He never came for me for comfort.

Sometimes now, he does.

I love him fiercely.

You are the strongest person I know. I love you always.

Love,
Carrie Cariello

Carrie Cariello is the author of What Color Is Monday, How Autism Changed One Family for the Better, and Someone I’m With Has Autism. She lives in Southern New Hampshire with her husband, Joe, and their five children. 

Carrie is a contributor to the Huffington Post, TODAY Parents, the TODAY Show, Parents.com. She has been interviewed by NBC Nightly News, and also has a TEDx talk.

She speaks regularly about autism, marriage, and motherhood, and writes a weekly blog at www.carriecariello.com. One of her essays, “I Know What Causes Autism,” was featured as one of the Huffington Post’s best of 2015, and her piece, “I Know Why He Has Autism,” was named one of the top blog posts of 2017 by the TODAY Show.

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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.

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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.

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