Autism Speaks recently shared one of my blog posts, “What My Kid With Autism Wants You to Know About Him.” Well, actually, it was more like my son Ryan’s blog post since it was his voice and his words. There were a lot of lovely comments from parents who “got it.” They understood autism doesn’t define their children and so much more lies beneath that label. There was one comment, though, that pierced my heart: “My son was diagnosed today. I needed to read this.”
As I read this mother’s words on my blog post, I felt the same kick in the stomach, the same tears searing the back of my eyes and the same fear I felt all those years ago. Like. It. Was. Yesterday.
I wanted to reach out through Facebook and hug this mom — Can you work on that, Zuckerberg? — and tell her I know the heartache, the uncertainty and the fear she was feeling at that precise moment. I wanted to tell her as long as she loves him, as long as she advocates for him, as long as she accepts him, he will be OK. So I told her all those things. I tried to help her understand, but I knew my words would bounce off her shattered heart like a pogo stick.
When you’re told your child has autism, the kind, compassionate doctor may tell you, “Your son is the same little boy he was before you walked through that door.” But what they don’t tell you is you may not be the same person.
Something inside you shifts. You worry the dreams you had for your child may change. You wonder how you will afford all that’s necessary for him while you’re here and after you’re gone. But mostly, there’s the need for more: more information, more education, more answers, more patience, more awareness, more therapies, more advocacy and more love. More than you ever planned.
I get that now. But a mom who just recently had to process the words, “Your child has autism,” may not. And the difference between the two of us is I’m “here” and she’s “there.”