When people meet Tony in an environment he’s less threatened by, I am often asked: “Is he always this active?” I can only go with the truth here, and that would be…Yes. Now go ahead and close your eyes, imagining that word as a flashing neon sign. While Tony certainly struggles to do certain movements, the ones he’s got mastered are usually going on nonstop, from the moment he wakes up until he finally falls asleep at the end of his day.
This poses challenges in many environments…pretty much any setting that requires sitting or standing still for more than five seconds. This is something we have been working on for a number of years, but even with his most preferred ABA reinforcer (TV) in the beginning we could only get brief amounts of time with appropriate sitting.
I would sit with him and start one of his favorite shows, only playing it while he was sitting on his bottom. If he knelt, it got paused. If he got up, it got paused. If he tried to sit backwards on the seat with his head pointed towards the floor, it got paused. You get the idea I am sure. In the beginning, I was pausing his show every couple of seconds. Eventually we got to the point where I could consistently get him through about 12 minutes without having to pause, sometimes up to twenty (and he was still fidgeting and kicking his legs pretty much the whole time), but we were maxing out at that as recently as four months ago.
When it comes to finding solutions that will help move Tony forward, I think the proverbial box can hinder. My number one job here is to help him progress and to feel loved while we’re doing it. So I observe him closely and how he reacts to things for clues about what may help us get to someplace better, even if they are not part of the typical approaches tool box.
When Tony was being assessed for his new speech therapist a few months back, he was having a really hard time. The therapist doing the session was new to him, and he was scared. At one point in the session we ended up in the physical therapy room, and there was a rocking chair in it. Tony has never been exposed to one of those before (although he did have a rocking elephant he enjoyed a few years ago before he got too big for it). He sat on the chair there and immediately started rocking.
I watched the light change in his eyes, and he stayed in that chair for a few minutes rocking back and forth without any sort of reinforcer…and I knew. I was going home and looking on-line for a rocking chair. I ended up with three of them from Walmart… I needed to make sure Hannah had a rocking chair too if she wanted one. We also bought a glider bench for our porch from Home Depot so that we could encourage longer periods of sitting without TV involvement.
What I did for indoor work was a progression requiring him to sit for just TV at first. Once he was able to sit in the rocking chair for an hour or so, I started moving my therapy and early education tasks over to that environment and using the TV as a reinforcer to keep him sitting the whole time. The ultimate goal is to increase the mount of time he’s doing those tasks and decrease the TV, so that hopefully by the time he’s in school he’ll be able to tolerate longer periods of sitting for focused tasks. Right now he’s really only willing to do two to five minutes on such tasks (he generally doesn’t like most toys or activities well enough to focus for longer), but we will gradually work to require more of him and move that time up. I think I will almost certainly be asking for a rocking chair (which we would provide) to be part of his educational accommodations when that day comes.
For now working with Tony at home for early education tasks has certain advantages. With where his joint attention and interests are, he won’t sit and focus on methods of instruction more traditional for his age group at this time. So I watch for what he’s more willing to do and try and find backdoor ways to get other skills in at the same time.
He and I are doing things like lower case letter bead stringing, which works on both his fine motor and his letter recognition. We use plastic alphabet letter pops toys I purchased to encourage pretend, matching lower to upper case, and hand strength. The attempted pretend licking usually still gets me the stink eye. Even for these things that he is more willing to do, he still only has limited patience and I have to break them up into smaller chunks throughout the day.
Within the past month we have also started using this approach with the rocking chair for Tony’s task time with Whitney and his sessions with Rosette, who does occupational therapy. In both settings it has dramatically increased his ability to be seated in one place during sessions, although he still struggles more with this during OT. Since Whitney is working increased hours right now with us, we have to break things up and do a couple of hours on his seated hab tasks (which are currently also being reinforced by the TV), then two or three hours of our community safety work in stores, followed by a couple more hours of seated work. He tends to get emotional and overwhelmed right now if we try to do more than a couple hours at a time of being seated, even in a rocking chair.
Another question people sometimes have when they see how much Tony struggles with being still is “What about medication for hyperactivity?” Tony’s situation is complex. Many medications can have long term effects on developing neurology that can create new symptoms, and we have always deferred to the advice of his medical providers in this area. The advice we had been given was to focus on seeing how far he can progress with the therapies alone first, and last time he was evaluated the decision was to give him a bit more time with that. When he meets with is new developmental pediatrician in February (Dr. Kessler retired), if she feels like the time has come to try medications for that and his anxiety of people, we will give what she recommends a try.
Does This Hyperactivity Mean Tony Needs Another Diagnosis?
Good golly, we already have enough of those, right? I would say that’s up to his medical providers. Although ADHD is a common secondary condition in individuals like Tony who have Sotos, last time he was assessed, the answer was again to wait and see. Oftentimes when people hear about Tony’s Autism diagnosis, they feel like this makes the sensory processing disorder a moot point. However, it is not. You can have either Autism or sensory issues alone without having enough abnormalities in your sensory processing to get handed a separate diagnosis.
The severity of Tony’s symptoms is what lead to his Sensory Modulation Disorder diagnosis. For our little man, problems in the way his sensory system functions when it comes to feeling his body in space make him more prone to craving certain movements, like rocking, and he is more regulated and focused when he is able to do move his body in those ways. This is part of why the approach for Tony has been to wait and see what kinds of improvements can come from therapy alone.
