This weekend I’m going to the first big family event I’ve been to in years, probably even close to a decade. For those of you who follow along and are doing the math, a decade ago my son, Jacob, who has an Autism Spectrum Disorder, was about a year old.
It was about the same time I became a single mom to both him and his older sister. It’s about the same time I dropped under the family radar. And it’s about the time I should have started talking about it and I didn’t.
This weekend my son isn’t coming with me. None of the kids are, actually, and I’m okay with that. Because this isn’t the same thing as not being able to have my son at my wedding when I remarried when he was just three and wasn’t yet diagnosed properly and wouldn’t let anyone else take care of him if I was around. No, that was different.
That was heartbreaking. That was like having to choose between breathing and eating, an impossible choice. That was a choice I relive every time I look at my wedding pictures and see that he’s not there.
He doesn’t remember not being there, but my husband and I will never forget it. We’ll never be entirely free of the guilt of that decision. It’s the same guilt I feel every time I think about having to let Jacob go to a residential program for almost 100 days when he was nine. Both of those decisions were the right ones to make, but they don’t feel right.
And one of the things I realized I have to do for them to start feeling a little more right is to start talking about it. I thought I had been talking about it, but I guess I haven’t. I discovered the other day that my cousin doesn’t know Jacob has autism.
I was mind-boggled. How could that be? It’s a defining piece of our lives. In a peripheral way, it’s narrowed the focus of what I do with my life. Our ongoing struggle to get special education services in place for Jacob and the reasons behind why he was away from home are what made me decide to be an advocate. It’s the catalyst that put me on the path to writing The Everything Parent’s Guide to Special Education.
I talk about it, right? I talk to friends about it, I talk to strangers about it. I even write about it. But I guess I never really talked to family about it. All these years I’ve been absent from family functions, I’ve let other people who think they know what my life is and has been to speak for me because I was too overwhelmed to find a way to do it myself. It’s not that I didn’t want to say anything, it’s that life kept getting in the way.
It’s hard to tell people who love you what life is like when you have a child with a disability. How do you say, “It’s sort of like drowning some days, but I’m okay because I’m doing what I need to do to make sure my child has the best life I can give him?”
How do you say, “It’s sort of like drowning some days and I don’t know if I’m going to be okay enough to do what I need to do to make sure my child has the life he deserves?”
How do you say, “In spite of all that, I really am okay most days and I’m doing wonderful things with my life and my child with autism told me he was proud of me and it was the most amazing moment?”
The answer is simple–you just say it.
All these years I’ve been absent, I’ve let other people speak for me. The problem with that is nobody (aside from my husband) knows my story and my struggle like I do. And being too overwhelmed to show up or to talk about it can so easily be mistaken for emotional distance and shame even when it’s not.
I’m not ashamed. I’m not distant. And I’m not overwhelmed anymore. I told my cousin the other day that my son has autism and it’s been a long haul. He told me “I didn’t know,” and in those words I heard the love and support I could have had if I hadn’t let life get in the way.
Don’t let life get in your way. It’s time to start talking about it.