Adjusting How We Parent as Our Kids with Disabilities Grow and Gain Skills

As a mom to a son with autism, I'm no stranger to doing things differently. We learned a "new normal" even before he was diagnosed, even though it took years to come to terms with it. (That's a whole other story.) But along the way, our "new normal" kept changing. And now, our "normal" is waaaaay different than how we started.

It's not completely unlike what parents of non-special needs kids experience as their kids grow up. It seems to be almost natural, the way we change to keep up with the new thing our kid is (or isn't) doing—whether it's sports, school, friends, or behavior, our kids change as they grow. It's just how life goes. Their change forces mom and dad to change too, but looking back, we didn't realize it was happening at the time. It wasn't until later that we're sitting around after the kids are in bed and it suddenly hits us—hey, we're soccer parents now. Or marching band parents. And suddenly, it's as if our kids changed overnight and are more grown up than we thought.

I have three boys, currently ages 14, 12, and 10. My youngest is in double digits. But in my head, he's still the chunky baby from my pictures and videos. When I see another mom out in public with littles in tow, I smile and share what I think is a knowing smile. Except I don't have littles in tow, and my "knowing smile" becomes a little bit creepy. But I still see myself as that young mom with littles. Suddenly, when I look at the man-child that IS my eldest son, everything is different. We just did what we needed to do along the way, but we didn't really notice it until later and we look back and see just how different things are.

It's even harder with my autistic son (he refers to himself as autistic, so that is how I might also refer to him in writing). The thing is, when Sam was 2 years old and starting therapy, I was in charge. I was the one in charge of not only making the plans for therapy appointments, but I was the one (and my husband) of doing therapy with him during the week. We taught him sign language, then had to do hand-over-hand to help him use it. We had to use hand-over-hand techniques for lots of things. As he grew and progressed with therapy, he learned to talk and use basic life skills—like putting on/taking off his own clothes, using buttons and hooks, velcro for shoes, etc.


Parents of typical children never think they might have to help their child tie their shoes their entire lives. They never think they'll have to help with toileting for their 32 year old child. They never think their child will never be able to make their own meals. But us special needs parents? We do. Even though Sam does not need help in some of these areas, we didn't know what he would or wouldn't need help with when he was 3 and having a meltdown in therapy. We wondered though. We couldn't help but consider the possibilities we might be facing down the road if he wasn't able to progress well.

Sam has overcome a lot. He can talk. He can make his own meals. He can clothe, bathe, and care for his personal needs all by himself (unless I forgot to put a fresh towel in the bathroom for him and he forgets to check ahead of time). He can ride his bike within boundaries in our neighborhood. But there are other things he is working through in therapy. And those other things?

They are things that I am not in charge of anymore.

He is learning things we all have to learn—controlling our mental, emotional, and physical responses to everyday situations. Like your brother getting on your nerves. The restaurant doesn't have hot dogs and doesn't serve any kind of fruit juice. The TV version of the movie cuts out whole scenes. School work. One day during a difficult conversation, it hit me. I can't speak for him, and he may not choose the words I would choose to use. I can't use hand-over-hand techniques with a 12 year old who is fully capable of doing it himself. (He's pretty strong, so it would be difficult anyway. Even if I could, it wouldn't be worth the meltdown that would ensue.) I can't do his therapy techniques for him when he needs to use it. I can remind him to use his "tool box," or whatever else I know he has learned and needs to apply in that situation. But I can't force him to actually do it. I can't force him to take 5 deep breaths. I can't force him to swing—I certainly wouldn't be able to physically put him in his swing myself if he fights back. I can't make him do it. HE has to be the one to choose to do it.

I used to make choices for him, and that's what we did. Now, he's learning not only what to do, but making the choice to do it himself.

And so I find myself in yet another "new normal." Here we are, doing things differently ... again. And while I have worked out a plan to work with the therapist so I also have tools in my toolbox to help him in those times he has to make his own choice, I feel so helpless. When he did ABA, I was doing something. I was helping. I was working. I was accomplishing something great with him. Now, I feel like I'm just standing by, watching, hoping against hope, and praying with all my might that he'll do it himself. He's a cross-country runner, and there's nothing like standing on the sidelines, unable to run for your child (he would lose every time if I did that!), but cheering your lungs out for him as he pushes himself to cross the finish line in record time. All I could do was watch. And hope.

I am no longer the mom of littles doing things for my babies. I think a part of me wondered for so long that maybe I would have to do so much more for him than what we're really having to do, and now that I don't have to do as much for him, I don't know what else to do. The not knowing—again—is a different new normal. Before, I didn't know what he could do, so in the meantime, I did it for him and with him. Now, I don't know what I can do, and in the meantime, I'm watching him figure out what I used to do for him for himself. I am beyond proud at what he has accomplished. But finding my place with him in his development as a pre-teen is harder than I thought.

When he was 3, I had no idea what momming would look like when he turned 12. And right now, I have no idea what momming will look like when he's 22. But for now, he's 12. So I'm just going to "mom" the best I can. I've discovered so many "new normals," this is just the next one. There will be more, but for now, I'm just trying to figure out how I can be the best mom he needs me to be, then falling flat on my face, getting up, and trying again. And I'm sure that by the time I figure it out, another new normal will be coming around the corner and I'll do it all over again.

Because that's what we do. We do what we need to do every step of the way. Even if it looks different than what we imagined. Even if it's the same thing we've been doing for 12 years. We mom hard.