In the ten years of his life, my non-verbal son with autism has had many victories. We have celebrated and cheered as he’s crossed the line from not knowing a skill to becoming quite adept at it. There has been a lot of excitement, relief, and joy when he reached accomplishments I had previously feared unreachable.
For many of them, we’ve been able to look back and reminisce on how things “used to be.” Maybe it was using a fork. One day he couldn’t even pick it up. Now, much later, he can stab his food and maneuver it into his mouth. There’s still a ways to go, but he’s crossed the critical line. Ring the bell. Victory.
For some others, we don’t have to reminisce about the times when he didn’t know how to do certain skills. That’s because, weeks, months, or even years later, he returns back to where we were at the start. He’s back to not knowing and not doing. It’s like a time travel movie without the mad doctor or 80s car.
This stark regression reminder could come in many forms. It’s a pile of clothes sitting on the floor while he’s naked in his bed watching television. It’s four in the morning wake-up calls after telling everyone how wonderfully he sleeps through the night. It’s a little bag with wet pants tied to his backpack and an explanation from his aide at school. It’s all the ghosts of life skills past coming back to haunt us.
When these things happen, there’s a lot to unpack. First, I struggle with the response to it. I try to ask him why he’s suddenly doing the opposite of all we worked to fix. I turn into a mime on crack with wide sweeping motions and confused faces, hoping he’ll understand my issues.
Why? Look. Look at me. Why? We don’t eat like this. No. Why are you doing that? Remember? Fork? What happened? No more fork?
My arms in the air. I’m pantomiming giant forks like Hulk Hogan arguing with a referee. He’s looking at me like, “You aight, bro?”
If he was neurotypical, I could tell him to cut it out. There might be punishments or rewards, depending on the type of parenting you subscribe to. Explanations, scare-tactic stories, you name it. There would be plenty to work with and a number of options to drill the point home.
With Lucas, all I get the you-aight-bro stare and no guarantee that he won’t do exactly what I told him not to the second I step away. Sometimes he does it while I’m still standing there.
For a special needs parent, there’s a lot of self-doubt that creeps in when this happens. You feel at fault for all your child’s faults and blame your self for what he seemingly can’t do. Just as many parents feel that an autism diagnosis is something “blamable” on them when they get it, the same can be said for regressions. If his successes and achievements are things I should be proud for helping him reach, then his missteps and falls should bring me shame and self-beatings, right?
Honestly, I don’t know. In a few cases, maybe. I guess there’s a chance that these things could happen if you don’t keep up with encouraging the latest milestones reached. Out of sight, out of mind, and complacency can make even the most earnest kid lose his footing.
In pretty much every case, though, I can say it’s not. Regression can happen for so many reasons. It could be a change of life or a growth pattern. There are triggers and causes for some and no reason at all for others. Sometimes he just stops. Sometimes it just is.
When that happens, you can only do one thing. You pick your kid up, dust yourself off, and start all over again. No milestone is ever fully reached. Every single thing my son does today is something he could stop doing tomorrow. As the parent to a special needs child, I need to accept that. If I don’t, I’m in for a long road of frustration and confusion.
Wrapped up in all of this is the overlying worry of time marching on without some of the most basic life skills being reached. That’s probably the worst part for a parent. One day, I’m either going to be gone or unable to help him in the ways he needs. Before then, Lucas needs to learn as many self-care skills as he can. When you watch the checks on your checklist disappear like magician’s ink, you can’t help but worry about where things will be when that heartbreaking day comes.
I can’t tell you how many times I have said to him, “Kid, this isn’t going to be cute when you have a mustache.” It used to be a funny thing to say. Now, he’s only a few years away from that facial hair that seemed so comically off in the distance years ago. It makes those slips back even scarier.
Will my son continue to make progress? Sure. Will all of the things he achieves stick forever? Probably not. Either way, he’s trying. I’m trying too. My mission is to teach him everything he needs to learn to become the best possible adult he can be. That’s every parent’s mission.
It doesn’t matter how many times we have to go over it, we will. When it comes to reaching his goals, there’s only one true constant. We never stop trying.