So began a long process of learning about the mysterious condition experts now call autism spectrum disorder (ASD). At first, I went online to do research and then I ordered every book on autism and Asperger’s I could find. I located a parent support group. I hired a team of therapists to help teach Zach to speak and share and play. Every day I worked with him, too, hoping that someday he’d say, “I love you.” When he was four, he said those words while looking me in the eye, and I knew that every bit of time and effort we put into helping him was making a difference.
I wish every parent with a child on the spectrum could be as fortunate. ASD is complex and frightening. Each child with the condition is a unique individual with his or her own set of symptoms. Outcomes are unpredictable. And life at home may not be a pretty picture due to outbursts, confusion, difficult behaviors, and poor communication. Not just on the child’s part (parents, too!). Raising a child with special needs requires a special kind of patience, strength, and acceptance. Acceptance of differences—and an acceptance of the need for help. You don’t have to do this alone. You’ve probably heard the phrase, “It takes a village.” Well, it does.
This is one of the reasons why I wrote The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents). It can be a tool in the giant toolbox you need while raising a child on the spectrum. I am forever grateful to the incredible moms, dads, teachers, doctors, therapists, and experts who supported me when I was new to autism. Writing the book was my way of sharing what I’ve learned and helping kids with ASD grow up to be as happy and healthy as they can be.
Now that my son is ten, he’s in need of his own tools and sources of support. He knows I wrote the survival guide for him and kids like him. In fact, showing him the book was a way for me to start the conversation about his diagnosis. He already knew about “brain differences.” He’d long understood that he required more help with social skills than other kids his age. But at ten, he was ready to hear about his diagnosis of autism and what it meant.
I tried to follow my own advice and that of the doctor with whom I cowrote the survival guide. I looked for signs of emotional readiness and waited for a time when our home was quiet and calm. We sat in bed and looked at the book together, while our pets lounged beside us. I made sure the conversation was age appropriate and focused on the facts. I stayed positive and told my son how much I loved him for who he was. Then I encouraged him to ask questions. He had some good ones: Will I always have autism or will it go away? Is it like a disease? Am I going to die from it? Why do I have it? Am I going to be okay? Book in hand, I was armed and ready. I could answer the questions with confidence and a sense of optimism.
What surprised me was my son’s matter-of-fact acceptance of the situation. He said, “Okay, I get it. Can I go play now?” I sent him off to play, wondering if he really did get it. He did. Since then, he’s offered comments like, “Mom, I have autism so my emotions are very strong right now.” Or, “I’m passing through my autism like a Boardwalk, with a few splinters.”
The Boardwalk comment made me smile. He makes me smile. Zach has taught me so much about motherhood and growing up. He’s made me stronger. I realize our life isn’t all fun and games—we have a lot of work ahead of us yet. Each day presents new challenges in terms of socialization and communication, but we’re doing our best to meet them. That’s true for all parents of children with special needs—which is why getting support and supporting one another is so important.
If you’d like to connect with me, please comment below or write to me at firstname.lastname@example.org. I’d love to hear from you!
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The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents) by Elizabeth Verdick and Elizabeth Reeve, M.D.
How to Talk to an Autistic Kid by Daniel Stefanski