Aside from the benefits our girls’ counseling appointments afford, one of the other benefits they enjoy from these weekly times is the drivetime it provides because, as I’ve written about in previous posts, our girls love the opportunity to go for a drive, windows down, favorite music playing in their earphones. These drives also tend to provide me with think time because the car is quiet as the music plays only in the girls’ ears, each listening to their own current favorite Spotify playlists. When one of our girls’ appointments was moved to a different office recently, our driving and my thinking time were extended a wee bit, and, even though my oldest didn’t have to accompany us to her sister’s appointment, she wanted to go for the drive.
Off we went.
Of course, this being our first time to the new office and only realizing after the fact that the other office has been closed and everyone is now being seen in the new space, we didn’t realize how busy and crowded and noisy this space would be. Unlike mental health counseling appointments, OTs tend to see a lot of younger kids and, for those who don’t know, OT tends to start when kids are young because they are helping a lot of neurodivergent kids learn coping skills and emotional regulation tools. Yes, there are some who are there for things like how to hold a pencil at school, but many OTs assist neurodivergent clients like my two girls grow into teenagers who can self-regulate and cope in challenging circumstances where sensory input can feel overwhelming to them (as the kids grow, like mine, that focus morphs and grows like the kids and focuses on things like executive functioning, which can be more challenging for a differently wired brain).
Within a short time, my 17 year old told me she wished she had not opted to come with us because the waiting room was too frenetic and there was more than one younger client who was loud and at least one who was in a ramped up state bordering on a potential meltdown. While my girl recognizes her younger self in some of the struggles like this young boy was having, she also recognizes her need to be away from the overwhelm of sensory input. To support her, I moved our car to a shady spot that had freed up and that I could see from the waiting room and settled her in our car to provide a reprieve from the ensuing chaos in the building.
The young boy who was teetering on the edge of a meltdown looked to be no more than 5 or 6, which is the time our oldest started her OT journey just after getting her autism diagnosis. I listened as he yelled at his father and at his OT repeatedly. I listened as he refused to accept any help to regulate and calm down. I listened as the OT talked to the dad about needing the dad to come into the session because there was also hitting and scratching. All of this took me back to the place where our family started this journey and as I considered my teenagers, one who was in her own appointment and working on creating goals with her OT, I couldn’t help but see and deeply appreciate just how far we have all come.
I include myself in that assessment—how far we have all come—because I realized how much I’ve had to grow and change as well. Perhaps this point was made clearer to me when I offered the boy’s father some unsolicited encouragement for where he was. When I came back inside from settling my girl in our car in the shade and away from the frenetic energy of the waiting room, I said to that father, I don’t know if this will help, but it does get better. From the look on his face I could tell he neither appreciated my intrusion nor believed my words. His response underscored this: Yeah, well, we’ve been at this for a while, so . . . and then he turned his attention back to his younger daughter and his phone.
Honestly, I’m not sure how I would have responded when my kids were at that place on the journey had someone said something similar to me. And that’s why I include myself in the fact that we have all come so far since those days. Clearly, I see such growth in our girls now that they are teenagers and I’ve written so much about how truly incredible they are. How they are better able to regulate their emotions, how resilient they are, and how self-aware they are, recognizing things in themselves that some grown ups I know don’t see or understand about themselves. That’s how I know this journey, even with all of its early struggles and challenges, has been worth it.
But, even more, it is my journey in all of this that has been perhaps the most important one where change is concerned. And here’s why: I used to be a dreaded autism mom. In fact, I used to use that term to describe myself in some social media posts. Why is that a dreaded connotation? Because that moniker makes my child’s autism about me and not about them. Most autism moms tend to talk about how challenging their kid’s autism is for them, the moms, not the autistic kids.
I remember when our 17 year old was first diagnosed at age 6 (as my teens like to say, autism level unlocked) and the evaluator handed me a handful of pamphlets and talked about how “best to help” our girl. One of the suggestions? A social skills class. As someone who has since chosen to listen to actually autistic adults I can tell you that is the last thing we needed to consider. But, I didn’t know that at the time. And it was awful. The funny thing is that several years later, when we saw the same evaluator and when our younger reached autism level unlocked, he handed me pretty much the exact same stack of pamphlets and I couldn’t help but marvel at the fact that the information he provides has not changed and reflects zero input from actually autistic voices.
These days, some of the actually autistic voices I am listening to are our two incredibly intelligent and self-aware autistic teenagers. Oh, and mine. Because as I walked this journey alongside our girls, it became pretty clear that my brain is equally differently wired (it apparently took me longer to unlock the autism level). Walking alongside these two gifted and talented young women has been a wonderful adventure. Perhaps that’s why I couldn’t help wanting to encourage that dad in the OT waiting room.
I remember those days when our girls yelled and melted down even over the support to help them with not melting down—tools to regulate their emotions and coping skills introduced to reset their brains caused them to melt down and experience greater dysregulation. But now, I see how far they’ve come. I recognize how far I’ve come. I acknowledge their hard work and I am deeply grateful for the shift in my own perspective as I recognized it was better to listen to those who have gone before us. And now, I celebrate these two amazing young women whose brains process the world in wildly different but awesome ways. Autism level unlocked—let’s go, there’s a world to change!