Wherever My Child With Autism Ends Up, It’s Not A Failure

I came across something online yesterday that was meant to invoke feelings of pride, hope, and happiness. While I am sure it did for many, there were other unintended emotions that it probably caused to spring up for others.

The image was of a man, probably around 18, in a graduation cap and gown, holding open his bifold diploma and smiling ear to ear. This new high school graduate appeared to be elated, as was the person who posted it.

The caption, which I am paraphrasing, essentially read: “My son, who we were told would end up in a group home for his autism, just graduated. Never give up.”

From there, it was a barrage of comments congratulating the father for his success and asking what his “secret” was to get his son “on track”. They all applauded the close-call that he had. After all, the worst thing in the world could have happened. That kid could have ended up in a group home as an adult.

You know, kind of like the group home that my own son might have to be put in one day.

The same group home that many people reading this find their own loved ones in right now.

That group home.

And suddenly, there I was, unable to join in on the joy that this parent was feeling because my own child’s possible future was being framed as something that might be a failure for both him and me. It was a worst-case scenario and its avoidance could only be credited to hard work by a parent who cares.

“You and your wife are a saints for working so hard with him,” the comments read. The proud pop listed all they did and pushed the fact that parents who work hard and care can carry their kids anywhere. If he or she doesn’t end up doing a graduation victory lap, then the parents must have dropped the ball somewhere.

The truth is, my son did do a graduation line once. He was in preschool and it was one of the worst experiences of his formative years for us. The school, designed for children with special needs, actually lined them up in order of their ability to say “thank you” upon receiving their “diploma”. I kid you not.

The principal was practically fracturing his arm to pat himself on the back as he presented each child, one by one, with their paper scroll. They would then be expected to eek out a small statement of appreciation to a gasping and applauding crowd. As the children continued, the responses dropped in their impressive nature. Soon, the kids were using devices to say “thank you”. The applause was dying down too and the gasps were all but done.

My son was the very last child out of the 40 or so who graduated.

Much like today, he didn’t speak a word. It was also before he was skilled with his communication device and it was a struggle for him to press the right button. From the crowd, we watched as they battled to even guide his hand without a fight. Prior to that, we sat in horror, watching as he spent the entire thirty plus minutes of this pointless event trying to run from the stage while an aide clutched him tightly to her lap. The whole crowd saw it. His limitations were literally presented on stage for all to see.

Today, I would never allow anyone to do that with my son. Then, I was frozen and confused.

I didn’t post any proud images that day or tell people to never give up. It’s more appropriate to say that I wanted to throw up. My fear was palpable. The fright that I faced made me nauseous.

That was what graduation was for our family all those years ago. That, however, was many years ago. Today is today.

Since then, I can say that I, much like that father claimed to be earlier, have been “a saint” with my own boy. When he faced struggles two years ago at school, I volunteered to have them cut his day in half and send a one-on-one teacher into our house until he began reaching his goals, regardless of how much it cut into my day. When it comes to life skills, I put my own life on hold to guide him through some arduous and heart wrenching tasks. When he wakes up at 3AM, I coax him back to sleep for the time it takes rather than giving him the stimming toys that will let me return to bed.

I do everything I possibly can for my son and he has advanced by leaps and bounds. The difference between now and that awful graduation day is like contrasting a bustling city to a little village. He’s built towers of understanding and bridges of communication. I am proud of him and I’m proud of me.

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He doesn’t, however, verbally speak. Not a word. He also isn’t on track to graduate from high school with a mainstream class or even, at this point, live on his own one day. The conversations with professionals and educators are always hopeful, but include phrases like “wherever he ends up” and “anything could be possible.”

It is still difficult to anticipate the possibility that one day, my boy might end up in a group home. I can, and often have to, say it out loud. He will most likely require specialized care for the rest of his life. Many situations that make some parents shudder could end up being our realities.

However, without the hard work that both he and I have put in, he would have have been in a more dire place than he is at now. Dedicating yourself to a child with special needs and challenges doesn’t guarantee that they will “soar higher than the eagles” or “pull off a miracle.” It just guarantees that they will be better off than they would have been without it.

There are no worst case scenarios in our life anymore. There are simply scenarios. I came to the realization many years ago that my job is not to make sure my son talks or doesn’t end up in a group home. My job is to help him reach his full potential – whatever that potential may be.

No matter what that is, I will always be proud of him because I know how hard he has worked to get to wherever he is. There’s no peak he needs to reach in order to make me see him as a success. He simply has to keep climbing and, when he can’t climb, I can help motivate him to continue. His final destination will be where he is meant to be and, for that, I will always be proud.