I had the honor of meeting with a doctor a while back. A very important doctor.
I told him all about my boy, Cooper. And he listened.
What we’ve been through. I started at the beginning.
He didn’t sleep. Not ever. Everyone told me it would get better. They said I was exaggerating. Only I knew I wasn’t.
I told him it took Cooper six years to sleep through the night. And even today, it’s still a struggle.
I told him about the burst ear drums. One after another. How no doctor would get close enough to him to know. And how I didn’t know. Until they burst. His own mother. Doctor after doctor. No answers as to why.
I told him about the stomach struggles. How I later learned he was drinking so much milk it was destroying his gut. Doctor after doctor. No answers. No one cared about why. Their answer...‘because, autism.’
I told him I couldn’t get him to sit still. Not for even a minute. How he spent his whole day, from 4 am to 9 pm, pacing our house. Every day the same. Like he was on a track. Kitchen, living room, stairs, landing, bedroom and so on.
I told him about the anxiety. The apraxia. The aggression. The self-injuring. The behaviors. He chuckled over the bathtub phase.
The worry. The fear. The love. It all came out while I fidgeted with my pen and notes.
I told him at age six I had had enough. I said no more. Never again would I allow another person to give me the answer, ‘because, autism.’ I told him how I went a bit crazy. I yelled. I researched. I drug my child out of appointments. I vowed to get answers. I made it my mission to help him.
I told him I had failed more times than I could count. I couldn’t get people to see my boy. Doctors. Teachers. Therapists. Strangers. Friends. Family. I couldn’t get them to see him. To help him.
I told him about the guilt I have. For the hard years. For his struggles. For his pain that I didn’t know about. I waited to long to try meds. Because of my insecurities. I should have never sent him to kindergarten. But I did.
He cut me off right there.
He said, ‘You need to wipe that word from your vocabulary Kate. Failed? Failure? You did everything you possibly could as a parent with information you had. Failure? Far from it. You did everything you knew how to do to help Cooper. And you never gave up.’
I was stunned really. No one, not in 11 years, had ever said that to me. In one 45-minute meeting he validated me like no one has ever done before. And honestly, I never expected anyone to do so.
And since I have never heard that, I’m guessing other parents haven’t either. And I’m guessing they feel guilt like me. For not knowing. For not being able to fix it all.
So, mom, dad, grandparent, you have not failed. Whether your child is 4, 9, or 39, you have not failed. You are doing everything you possibly can to help your child with the information and resources available to you.
You are refusing to give up. And you are doing a great job.
We all need to wipe the word ‘failed’ from our vocabulary. Switch it to tried. I tried. Or learned. I learned.
And I’m going to try again. And keep trying. For the rest of my life. Because my son needs me too.
He is worth it.
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Your value does not diminish because your child has a disability. Society can make us feel that way sometimes. You, your child, me, Cooper, we are not less than.
UPCOMING EVENTS
Autism Out Loud Book Launch - March 31, 2025 - Stillwater, MN
The event will include appetizers and a champagne toast. Ticket price includes a $5 shopping coupon to be used at the event.
Spend an evening with Adrian, Carrie, and I, celebrating our new book.
Save the date for book signing events in Austin, Texas, Naperville, Illinois, Buffalo, New York, and more!
Caregivers, Escape to a Weekend of Rest, Renewal, and Connection.
This three-day event will include two full days of speakers and breakout sessions at the Holiday Inn on the San Antonio Riverwalk. The event will feature Adrian Wood of Tales of an Educated Debutante, Carrie Cariello of What Color is Monday, and Kate Swenson of Finding Cooper's Voice and a celebration of their new book, Autism Out Loud. This event will be focused on you, the caregiver and helping you learn, make a friend, feel seen, rest, have a blast, and more. You won't want to miss this life changing event.
If you are in Texas, sponsorship opportunities are available. Please email me at findingcoopersvoice@gmail.com to learn more.
Have you ordered your autographed copy of my new book yet? Carrie and Adrian, my fellow authors are flying to Minnesota to sign them!
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I hear you and feel you on every single word you wrote in this post. Much love to you and all of us mom's trying to do the best for our kids.
I needed this today