As you are looking at this picture, I don’t want you to ask yourself should our son have been up there on collapsed bleachers. I don’t want you to think about whether or not he can get down safely on his own. Those are, of course, valid questions, but there’s really only one thing I want you to focus on in this picture.

The expression on his face.

Notice how glazed over his eyes are? That he appears disoriented?

I have encountered many times on this therapy journey we have been on as a family the idea that if a skill is learned and mastered in home, then it can be taken in public where it will transfer over to other environments and ensure safety and the same results for everybody involved. I can’t emphasize strongly enough that this is completely a neurotypical perspective, the perspective of someone who doesn’t know what it’s like to have more debilitating sensory differences. And unfortunately, it just won’t work that way in my opinion or experience for an individual who does have a certain degree of sensory differences.

Anyone with anything more than a minor sensory difference can tell you that behaviors and reactions in and to anything in public or the community at large can happen entirely in response to the different sensory stimuli present in that environment, and those are things that cannot be adequately replicated or prepared for in home. They require being present in each and every specific environment, because what one public place is like is not what every other one is like in terms of sensory stimuli. And it requires time to learn coping strategies and to adjust to each of the different environments and stimuli.

Tony has capabilities for tolerance of structured tasks and compliance with safety skills that hasn’t fully transferred over into the school environment yet, nor can his tolerance for those things in other environments guarantee an immediate transfer over, because there are a combination of elements he is being exposed to that are unique to the individual school setting. The Tony that all of his therapists recommended as being ready for school doesn’t always seem to be the same little boy walking into this school right now because there’s so much more going on here for him to adjust to. As he continues to get used to the sensory stimuli in the environment, only then will he be able to react as he would in home or a setting he’s already more familiar with and comfortable in.

On the day that picture was taken in PE, he was feeling overwhelmed by the sound level coming out of a speaker box playing music as light displays on its surface flashed, by the sounds being produced by the other kiddos in his class which can sometimes be overwhelming by itself because of the intensity and overlap of the sounds, and was just trying to find a way to get as far away from all that noise as possible and still follow my instructions to stay in the gym. And because he struggles more with the motor planning for climbing down, when he would climb up there initially it would take a minute or two sometimes for him to come down or to work up the confidence to overcome his fear of falling and try.

Now most days he doesn’t even try to climb those bleachers, because I have been providing reminders and tangible reinforcement for following the rules (and his response time for getting down is getting faster and faster as his muscles adjust to the movements and he gains confidence in doing that). But he still sometimes lays at their base, or against a wall, with his back to everything else, trying to minimize the amount of sensory input coming his way. And sometimes, he really struggles to do functional tasks right away when we leave PE if it’s been very loud in there.

His experience of the world around him isn’t the same as a person with a typically functioning nervous system, nor are his reactions. This is why his current team recommended building his tolerance for an entire day there at the speed he can tolerate, and in many ways his behaviors tell us exactly how well he is or isn’t tolerating the environment. When his sensory system is overloaded, his reactions come more from a flight or fight level than the conscious reasoning that would govern a more measured response that remembers and follows rules because his nervous system is feeling all that extra pressure. Each week I see him blossoming more and more in the school setting, but of course I must acknowledge he still has areas where growth is necessary.

And it will come. We know this because it has in other environments, but it won’t come because he can already do those things in other environments, otherwise his data points would look like they do in other places. Increasingly appropriate reactions will continue to come as his tolerance to the environment improves enough to move farther out of fight or flight reactions. And the time table for that is entirely determined by his neurology, which is beyond the power for anyone’s expectations or desires to dictate to.