An overlooked detail when I talk about my son’s non-verbal autism is that his sister is only a few years older than him. It made his delays much more noticeable when they first started. In fact, they were on full display in my mind and, in my view, the minds of others.
I had recent videos and photographs of his big sis in those same formidable years. I didn’t have to guess at what a one-year-old should be doing. I had it, burned on DVDs with custom-made covers lined on the bookshelves of my home office. The memories I had fought so hard to document had become visual daggers of the things that my boy wasn’t doing yet.
Not only was he not doing the things he was “supposed” to be doing, but doctors and professionals focused on the things that he probably wouldn’t be doing in the future. They asked me to temper my expectations and not compare him to anyone else. Family and friends told ridiculous stories about kids who talked at all sorts of exaggerated ages. They’d ask questions that flew in the face of what we saw to be true.
In the mind-blowing case of one particular relative:
What does he call his sister? Does he say “sista” or like “sissy”?
He doesn’t call her anything. I told you he doesn’t speak yet.
Oh, come on now. He talks. Don’t you? Don’t you speak? Yes, you do. Yes, you do. You talk.
This woman held my kid up to her face as she, in a baby voice, repeated to him that he spoke. It was almost implying that I was a cruel person for besmirching his good name and claiming otherwise. I wanted to smash her into pieces. I didn’t, though. A lot of those early years involved restraining myself from smashing people into pieces. There are many people who don’t know how lucky they are to have been left whole.
The truth is that he wasn’t talking and, if we’re being frank, that relative knew that. That truth, however, makes people uncomfortable. No one wants to mention the truth, no matter how obvious things are. You smile and put on a show for grandma. Wear a tie. Cover that tattoo. Pretend your kid talks.
That might work for family friends and random neighbors, but I am his dad. I couldn’t pretend. What type of mental weakness would that be? To live in a fantasy world that my son could speak, denying him the care he so richly deserves, so that I could be comfortable with an inconvenient truth? No way. That’s not what dads do. That’s not what I did.
In the quest to figure out the emerging unknown, Lucas went everywhere for answers. I brought him for hearing tests and therapy visits. He even saw a hair-brained geneticist who told us that he was fine. According to Dr. Dimwit, my boy was a “Johnny Come-Lately” and would suddenly begin to verbally speak words one day. Forgetting that he used the term “Johnny Come-Lately” wrong, he was also wrong about the speech. Today, my boy is ten and he doesn’t use verbal communication.
And there – right there – is the terminology that changed through the years. Speaking and talking are subjective terms. To get what you want doesn’t always involve vocalization. Sometimes it’s a gesture or a glance. It can be a nod or other physical movement. It can be the pointing of a picture or the tapping of a button. It can be anything.
My son does those things. He can tell me he wants pizza or a TV show. With the leading of my hand or the tap of an iPad communication menu, Lucas can have the world at his fingertips. He might not have the vastest depth of vocabulary yet, but he has vocabulary. He has receptive language and a means of letting himself be heard.
In the interest of frank and open honesty, I can tell you that I never expected this. I never thought he would ever be able to express himself in any way at all and all the doctors who tried to “maintain expectations” had me believing that he was never going to do much of anything, much less communicate.
So here we are, years removed from the diagnosis, and it begs a question that still leaves me confused. Is our life today the worst-case scenario that I worried about ten years ago? If I could go back in time and give the old me a snapshot of us today, would I be sad? Was this the life I feared?
I honestly don’t think so, but if it is, then I have some good news for myself. It’s not bad. In fact, it has been the most beautiful, unique, and strengthening journey of my life. My son has showed me how to love unconditionally, communicate without words, and view the world through the purest of lenses. I’ve watched him push forward to take steps that no one – myself included – was predicting years ago.
Families everywhere go through this up and down roller coaster when facing a diagnosis or even a routine evaluation. You wait for professionals to give you a crystal ball view of the life before you. When it’s dire, it feels like the end of the world.
Since every family and case is unique, I can only speak for my own. It never became as dire as they made it out to be and, if it is, then I haven’t noticed it. I love my kids unlike anything else I’ve ever loved in my life. What we are today isn’t typical and it isn’t dire. For us, it’s simply perfect.
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