mum and autistic son standing cuddling in nature
3 Nov

Q&A Forever Boy

This month we chat to Kate Swenson about her book “Forever Boy: A Mother’s Memoir of Autism and Finding Joy”. An honest and insuring memoir of autism, motherhood and love from the creator of Finding Cooper’s voice.

When Kate Swenson’s son Cooper was diagnosed with severe, nonverbal autism, her world stopped. She had always dreamed of having the perfect family life — watching her boy play at baseball games, walking him down the aisle. She hadn’t signed up for life as a mother raising a child with a disability.

At first, Kate experienced the grief of broken dreams. Then she felt the frustration and exhaustion that comes with having to fight for your child in a world that is stacked against them. But through hard work, resilience and personal growth, she would come to learn that Cooper wasn’t the one who needed to change. She was. And it was this transformation that led Kate to acceptance — and ultimately joy. Because of Cooper, and autism, she became the person and the mother she was truly meant to be.

Now Kate offers comfort and connection to other parents through her blog and Facebook community, Finding Cooper’s Voice. In Forever Boy, she shares her inspiring journey through autism with honesty and compassion, offering solace and hope to others on this path and illuminating the strength and unconditional love of mothers.

Kate, congratulations on your book, Forever Boy, tell us about what readers can expect reading this book?

Forever Boy is so many things. Yes, it’s a story about my son’s diagnosis with nonspeaking autism and how that changed our world but it’s also a story of me as a mother, finding my way down an unexpected path. It is the story of mistakes and triumphs – of altered dreams and agonising hope. A story of marital compromise, and sibling rivalry and a shifting perspective of advocacy. But in the end, it’s about discovering exactly who I was meant to be and how I owe it all to my son Cooper.

What are some of the key themes and messages you want readers to take away from the book?

I want parents of newly diagnosed children to know that it’s going to be alright and they will make it through their hardest days. I also want parents to know that this journey is about them too. Yes, of course, we pour ourselves into our children and helping them, but we have to take care of ourselves too. And I want people outside the world of autism to know that people with the diagnosis have so much potential and should have every access to this world. Shattering the stigmas my son will face his whole life is so important to me.

Tell us about Cooper - what’s been his journey and what is he up to now as an 11 year old almost teenager?

Cooper is a happy, silly, smart 6th grader who is living his best life. He is loved and treasured and supported by so many people. His favourite activities are swimming, boating, riding a horse at therapeutic horse back riding lessons, and being with his family. He adores trains, animals, dancing, watching snow fall, and more. He communicates with a combination of a speech device, sign language, and words. And he is going to be Santa Clause for Halloween this year, which is a REALLY big deal because this is the first year he picked a costume. We are pretty excited.

You created Finding Cooper’s voice, a blog and Facebook page - tell us about that platform.

Finding Cooper’s Voice started as a blog, a place where I could share my hopes, dreams, worries and frustrations online in hopes of finding one other parent like me. Today it is a social media community of over 1 million people. While numbers have never really matter to me, I feel the need to pinch myself when I think that my yellow-haired son has educated over a million people about autism. It’s unbelievable. Daily I share stories and videos of our life and invite people into what I call the secret world of autism. I also offer a paid supporter group on Facebook called Coop’s Troops where I share and talk with a smaller group of people about the harder to discuss topics. Sharing can be so hard. It makes us very vulnerable but remember, your story is the answer to someone’s problems.

What are your hopes and dreams for Cooper?

Above all, I want my son to be happy. I want him to have joy, comfort and peace in the life he is living. I want him to be as independent as HE possibly can be. And yes, for him that may look different than his peers. And that’s okay. But with independence comes happiness. Independence means living his life the way he wants, so for now, and for the rest of my time with my son, I will help him to achieve as much independence as he can.

A diagnosis of autism in a loved family member does bring changes to every family. What’s some of your advice for other families for making adjustments and getting support?

I think the absolute best thing a family can do is reach out and find other families going through the same journey. It can be very isolating at times and finding others who understand is life changing. I can say with certainty, joining a Miracle League Baseball Team (adaptive baseball) was one of the best decisions we made for our family. We met other parents, networked and shared. Our children connected with other siblings and so on. We have developed lifelong friendships.

Another piece of advice I will share is to encourage your children to share their feelings. My son Sawyer is 9 and he was born into this world of advocacy and autism. He has very real, very valid big feelings and questions at times, and I want him to have a safe space to express them and ask questions. Because I will never know what it feels like to have a sibling with a disability like he does.

And lastly, find something that works for your family. Find at least one activity you can do as a family outside of your home. For us, that took almost 10 years. And now, I am so happy to share that we can all go boating as a family. We don’t have to leave early or split up as a family because every member enjoys it. It’s been life changing for us.

When did you first realise you wanted to be a writer?

Writing has always been an escape for me and a way to express myself without interruption. So often in my life, I feel like I’ve been pressured to rush through the hard parts of life, and with time I learned that I don’t heal that way. I need to feel, sit in it, and acknowledge. Writing allows me to do that.  

To read Forever Boy you can purchase online, book outlets, or follow Cooper's journey at Finding Cooper's Voice.

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