08/03/2023

Becoming a father to a special needs kid changed me forever.

This was part of a recent conversation I had with one of my best friends. A true friend is someone who you may not see or talk with often, but time does not matter. Meaningful friendships sustain through all these long periods of not spending time together or even speaking. I have several of these friendships, and I am grateful for each of these friends. Last weekend I had the opportunity to catch up with some of these buddies who I have known for 30 years.

We talked about our lives and the absurdity of some aspects, especially our own work schedules, married life and the juggle of having kids. One friend pointed out the last time he saw my kids, Beckett, 15, and Carson, 13, was four summers ago. He could not believe how much they had changed, but he really honed in on Carson, who has non-verbal Autism. It’s interesting to me how people who matter to me are always interested in Carson, his disabilities and what life is like for our family.

All my friends know our family’s story, and they have supported us in meaningful ways through the journey. We have agonized, and later laughed, over some of the incidents that have occurred during our annual summer visits together. For instance, there was the one time at a restaurant that Carson yanked the bar stool out from underneath a total stranger. As I was following close behind him because he was making a run out of the restaurant in a tantrum, I was able to keep the woman from falling to the ground. There was another incident when Carson – in a feat of superhuman strength – pushed a huge potted plant into our pool during a party. At the time, these incidents are traumatic. Reflecting on those challenges now, I am grateful for how far we have come.

The reflective conversation turned into specific questions from my buddy about what life is like today with our Carson and his observation of “how much better he is now.” He wanted to know about the relationship between Beckett and Carson. He wondered whether Carson comes on vacation with us. He asked a ton of questions, which to me came from a caring heart.

It did me good to reflect on how much has transpired and how life today is incredibly different than years past. To be honest, I have a knack – Pam calls it a gift – for blocking out unfortunate situations from my mind. Many of the disturbing Carson incidents my friend and I discussed during his previous visits I had not thought about in years. There’s too much good in my life than to harp on past negatives.

Over the last few months, I have been fixating on what Carson’s adult life is going to look like with his disabilities. I worry, especially if a time comes when we are unable to meet his needs. I constantly remind myself do not worry today about tomorrow’s hypothetical problems. My faith passion steers me in overwhelming times to the Bible where Matthew 6:34 reads, “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” It’s a settling verse.

Since I have been obsessing a bit lately about adult Carson, Pam sent me a post from the Finding Cooper’s Voice Facebook page that hit home. The post was written by Kate Swenson, who wrote a book titled, “Forever Boy: A Mother’s Memoir of Autism and Finding Joy.” I thought the post was worth sharing.

To the mother with her adult son at Thomas the Train:

You had the oldest child here. I’m guessing he was 25. Your son was tall. He was a man. He even towered over you.

I saw him immediately when you arrived. He was practically levitating he was so excited.

It was like he had an aura around him. His joy. It radiated.

He ran in. Loud. Arms a moving. He ran right up to Thomas and started chatting to himself. Fingers stimming. Head down. Twisting back and forth like my son does.

‘I love trains. Trains are my favorite. I love Thomas. Hi Thomas.’

And that’s all it took. I was drawn to him. To you. I wanted you in my life. I wanted to know everything about you. Your journey.

You are me. I am you. And my son is yours. Except 10 years from now.

I want to admit I wasn’t ready to meet you five years ago. I wouldn’t have seen the beauty in this. I would have been sad. I would have said to my husband on the drive home … ‘that’s not Cooper. That won’t be him. It can’t be. Right Jamie.’ I would try and convince myself.

Not anymore. You are now my inspiration. My goal. I had so many questions. What is he like? Has he always talked? Are you scared? He’s so happy?

I thought about me, years ago. At this exact event. I was scared of autism. Scared of forever. Scared of bringing an adult man here. Scared of being judged. Scared of the unknown. Scared of being different.

I watched you for a while. Holding his hand. Helping him on the train. Laughing. Smiling. Mothering. You weren’t sad. You weren’t embarrassed. Your perpetual big man with the young soul was just fine. Just like Cooper will be.

Thank you for coming here. Thank you for being out in public. For not hiding severe autism. For showing me my future and how wonderful it can be.

Sincerely, a thankful mother.”