Day 187: Beautiful Boy, Part 2

A few days ago, I told the story of how, in the midst of pandemic, homeschooling and quarantine, we got the additional challenge of learning we are the parents of a child on the autism spectrum.

Ultimately, the idea will be to incorporate our daily experiences in this area in this blog as they happen, but I want to take a little time to catch up on what’s been occurring on that front since we got the diagnosis. At first, I thought that would be one follow-up post. Now I’m realizing it will instead be a few, spread out in the coming days and weeks. 

What’s been strange writing this blog since getting the diagnosis is that, for the past few months, getting Henry set up with therapy and working through things has been a HUGE part of our lives. I’ve kind of just written around it. 

I know what you’re thinking. “Hold on. How could you possibly suppress those emotions and compartmentalize all of that without breaking face?” It isn’t easy, but lest you forget, I am a German Catholic who grew up in a small town in Wisconsin. This sort of thing is second nature to me. If times are tough, you smile, grind your teeth and make a nice casserole. 

But back to Henry. We knew that early intervention was extremely important, so we began the process of researching the best therapies and interventions. Children’s Hospital, who provided the diagnosis, was helpful with a lot of suggestions, as were other doctors we work with. 

Out of the gates, we were told that ABA therapy would be good for Henry. ABA stands for Applied Behavioral Analysis, and it is a fairly intensive intervention that involves lots of hours of play therapy, table time activities and other work. It is very time intensive, so we had our hesitations, but ultimately felt it was the best course forward. 

So Erin started researching possible providers, and I started the insurance research. Both of us were on the phone for hours and hours and hours. Eventually I learned that our insurance does offer coverage for these kinds of services, related to an autism diagnosis. Of course, as anyone who has dealt with our awesome approach to health care in the past few years knows, “covered” basically means the insurance you pay through the nose for handles some portion of the mind-bending costs of treatment, and you have to pay a ton out of pocket. USA! USA!

But that’s another story. We did our best to work that stuff out and went about meeting with a few possible providers. This was back in May, where everything was very much still shut down, but because of the essential nature of ABA, most were offering in home therapy. We of course had concerns about that, but also wanted to get Henry help, so we already had to weigh weird trade offs that we wouldn’t have had to a year ago.

We met with a number of ABA providers. They all were good, but we found one we felt was a good fit for Henry. He great rapport with the therapists. That is a big key with anyone, and definitely for Henry. We’ve seen him work with therapists in the past, and if he doesn’t connect with them, it’s amazing the degree to which he can ice them out and not participate. Likewise, when he does connect, he is really engaged and responsive. He was unbelievably playful and happy with the folks we picked, and we really liked them too.

Once we made the selection, we waited well over a month for insurance stuff to get worked out before we could actually start. Somewhere in that timeline, Erin also came across some articles written by adults on the spectrum who had some negative things to say about ABA, so we got concerned and had some second thoughts. 

The concerns mainly came from people with ASD who had bad experiences in the earlier days of ABA, and described scenarios where kids on the spectrum felt like the therapy was primarily targeted at making them “act normal.” Some wrote about being forced to suppress “stimming,” which are repetitive movements like hand flapping or rocking that some on the spectrum (and some not on the spectrum) do to release sensory energy. 

Without going into deep detail, the gist of the argument was that in the past there had been a lot of effort toward making autistic kids act “normal,” and that is not what we want for Henry. What the hell is “normal,” anyway? So we reached out to our provider and had a few really good conversations with them. We were relieved to hear that, while this kind of practice may still be out there, it has largely gone out of practice and is not the philosophy of the therapists we are working with. Like us, they are seeking to support Henry as an individual, and help him manage his challenges, not fundamentally change who he is.

We were reassured after that conversation and decided to move forward with ABA, as well as occupational therapy and speech therapy. You may ask, “Whoa, what’s up with all these therapies, and what’s the difference between them?” We’ve heard those questions a lot…mostly from ourselves. This has been a major part of our learning curve, and I will do my best to describe my understanding, while being very up front with the fact that we are absolutely still learning.

Speech is pretty self explanatory. Henry has long been speech delayed. He had some speech therapy in the past. Some kids on the spectrum are nonverbal or have deep issues communicating. In Henry’s case, he talks and gets his point across really well. His pronunciation can be a little off sometimes and as recently as 6 or 8 months ago, he would sometimes babble and people outside our family would struggle to understand him. He has come a long way on that front, but we did line up once a week speech therapy for him.

Where things get a little blurrier are in the areas of ABA and occupational therapy. The clearest way to describe our experience so far is that ABA is specifically focused on issues related to behavior, while OT covers some behavior and sensory issues, as well. 

So what do we mean by that? Behavior has to do with the choices Henry makes and the things he does in day-to-day life. This covers simple tasks, like learning to wait and being able to sit, focus and learn things. One thing we’ve always noticed with Henry is that he is very bright, and when he wants to learn something, he does. He loves numbers, and his known his numbers really well from early on. We even caught him counting backwards quite a while ago, which is a skill they were hoping for Amelia to have late in first grade. 

Letters, on the other hand, he had no interest in and wouldn’t learn. So the question became whether he couldn’t learn letters due to cognitive issues, or if he just wouldn’t. We don’t know for certain yet, but it definitely feels more like a choice, so ABA has been helpful in getting him to focus his attention and learn other things.

Another example I like to use relates back to several posts I’ve written, where I shared pictures of the kids playing baseball. Henry insists on holding his bat this way.

Try as I might to teach him the more conventional grip, he just won’t do it another way. It’s not that he can’t learn, he just doesn’t want to. (And to be fair, he does hit pretty well that way.) He’s always been hard to direct, so that’s an area ABA helps with.

Sensory issues are something else entirely. Henry, for example, has always reflexively pinched my arms and hands. The sensory input he gets from that is soothing to him. Likewise, when he gets really excited, tired or over threshold, he will jump off things, or run into doors and walls. That impact, we learned, gives him sensory input.

Part of what OT helps with is finding ways for him to get that input he needs in more positive ways. Whether that’s using stress balls, jumping on a trampoline or doing other physical activities that help him. OT will also work with Henry on things like properly using a fork properly, use a scissors, and other fine motor skills he sometime struggles with.

Very generally, that was what we set forth with. Erin was doing a lot of the leg work filling out forms and lining things up in May and into June, and then we entered this “waiting for insurance” mode in June. We had a basic framework for a strategy for Henry, and once insurance stuff cleared, we’d learn more specifics, schedule, etc. There was still lots ahead for us, but we felt good to have things in motion. Sometime soon, I’ll share more about how things went when we actually got started, and what we learned along the way.

Thanks for hanging through this post, I know it was long. Now if you’ll excuse me, I have to get going. I have a casserole in the oven