Blog #244~ Kicking off Autism Awareness Month with Forever Boy
April is Autism Awareness-Acceptance Month. I want to kick it off with the book release of Forever Boy by Kate Swenson, creator of Finding Cooper’s Voice.
Forever Boy is a memoir of Kate Swenson’s journey as the mother of Cooper, who was diagnosed with severe, non-verbal autism. There were many resonating stories in her book I related to and wrote candidly about in my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (https://amzn.to/2W3Un6X). My son Nick is 28 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). It’s very hard to open up about some aspects of life with autism, I applaud Kate for her honesty and beautiful writing style.
There have been many obstacles to overcome in order to support my son Nick. Autism is a spectrum disorder and when your child is profoundly disabled, the barriers can be many. Imagine not being able to speak verbally and how frustrating it would be. Communication and behavior go hand in hand. Every behavior is communicating an unmet need or struggle. As a parent, it is heartbreaking to see your child struggle. Forever Boy takes you through the pain and joy that Kate and her family experienced in a humble and a heartfelt way.
So, let talk about the hard. Supporting a child with severe, non-verbal autism includes advocating for services, support, providing appropriate education and finding a way to give your child a voice. As I mentioned earlier, every behavior, including the maladaptive behaviors are communicating an unmet need or struggle. Individuals with autism can also have difficulties self-regulating. When a situation becomes overwhelming, and reaches a boiling point, the end result can be a meltdown. This is the hard. In Forever Boy, I felt the sweat, fear and bruises that often follow a meltdown. But what is much worse, is the feeling that your child is struggling in a world that doesn’t often understand them.
“Speak your truth. Even if you voice shakes. Share your life.” ~Kate Swenson, Finding Cooper’s Voice
Another “pain point” that families on the severe side of autism experience is isolation. It might be fear for your child’s safety due to elopement or worry that certain social settings might be too overwhelming. Sometimes, it’s just easier to stay home or do shorter visits to prevent stimulus overload and having stress chemicals build up, which can result in a meltdown. (To understand this better, I highly recommend following The Autism Discussion Page, on Facebook. Bill Nason provides a wealth of information about autism that is very easy to understand for parents. He also has user friendly guides available for purchase.)
The book Forever Boy opens the curtains to what severe, non-verbal autism looks like from a mother’s perspective. You will feel the love and joy as well as the struggles and heartbreak. This book will educate, inspire and empower parents, teachers, professionals and anyone interested in learning more about how to support individuals and their families. Thankyou Kate for being vulnerable and sharing your journey. Thank you for showing the beauty of Cooper, his unique abilities and giving hope to others. Many families on this journey will benefit from knowing that they are not alone.
“Once you make it through, help another parent. Text them. Call them or go to them. Sit with them in the dark. Be the person you needed in the beginning.” ~Kate Swenson
My goal is to help others and make this path of DS-ASD easier and more understandable. I look forward to sharing more about supporting individuals and their families this month. That’s what is in my noggin this week.
~Teresa 🙂
Down Syndrome with a Slice of Autism 