This past May, I started creating my own programming for Tony’s community safety and public therapy goals as his habilitative therapist. This was necessary as his ABA team had recommended working on a completely home-based program and public outings with their therapists were limited at their request. Yet, our ongoing need as a family for progress in that area was still considerable. At that point in time, we had very limited directional flexibility with him on the streets of our community, where he would only tolerate walking for 20 seconds in a direction that was asked for by someone else before insisting he get to walk back and go exactly where he wanted. Denials were met with behaviors that could include tantrums, extensive pushing, and attempts to harm himself.

I was still using ABA with what I did, but I switched to differential reinforcement (where he was only given a reward or reinforcer for appropriate behavior), his father went along until pushing in this setting was extinguished to provide a parental imposed consequence of loosing kindle privileges for 2 minutes once we got home when he pushed, and I advanced his goals as soon as he had reached 80% mastery for two days in a row on each targeted area. Advancing his goals that quickly prevented him from becoming rigid about any particular expectation, and I discussed any upcoming changes with Tony in advance so he would have time to adjust to them. Understanding that he still requires tangible in the moment reinforcement is important to gaining his cooperation…he understands what the expectations are, but right now unless someone can offer him something he wants more than saying “no” to what they want from him, he’s not going to produce the desired behaviors.

Now, he’ll walk calmly anywhere I ask him to in this neighborhood with me and he’ll do the same for others. We’re down to reinforcing only one directional change per walk, sometimes the entire route is changed. He’s tolerating denials for high value items. Truly these have been wonderful changes to experience for our family. Because the safety portion is so improved, I’ve begun targeting functional living skills, scanning, and conversational communication goals outside of him requesting what he wants within the community and in preferred public locations.

Truly, there can be no greater compliment than having a therapy provider recommend to an insurance company that since the parent has produced such significant progress as the hab therapist, further therapy supports in a particular area may no longer be needed. I have been in a somewhat unique position where my assistance has been required by his therapists for years because of safety concerns around working with our son…so it’s been a great hands on educational experience for more than 8 years now, learning enough to be given a degree without actually earning one. That coupled with the reading I have done allows me to be effective in this capacity. Yet, the therapy system was not designed for parents to be their own therapy providers, and I have only been filling this role because we are unable to find a habilitative therapist in our area to work with our little man.

What we currently see on the community safety routes will not translate to other environments because that is not how things work for our little man, who does not generalize a skill learned in one setting with only one individual to another of either. And for an individual with profound sensory differences in general I would say that is also to be expected, that responses in the home could be radically different to reactions within the community. Environments where greater levels of structure are required, environments with crowds, that sort of thing are still areas where we are going to have to help him build flexibility and cooperation with safety skills while maintaining appropriate behavior.

As both a parent and a person currently acting as one of his therapists, I talked with his father about what sort of goals we can work on next to help Tony succeed in other environments. Certainly I know all of his therapy history, how he responds to things, and what his needs are, but it is always wise to get another perspective and honor the limits of the person who has to do the physical managing of behaviors if necessary in environments he still struggles with when I am clocked in.

We discussed and agreed that our next steps include seeking an in-clinic ABA provider as an important bridge to help our son complete school readiness. Andy recommended increasing his tolerance of sitting first through preferred activities like eating in fast-food restaurants (I suggested that we start fading use of kindle in that environment also since the activity is so preferred and has lower functional demands). I felt that we definitely need to start rebuilding his tolerance of crowds (much of that was lost during the pandemic), and that we need to start transitioning him to doing seated functional tasks in environments like libraries, that more closely resemble schools.

This is going to be an emotional time of transition for our son, but work on some of the above items has already begun and I’ll be discussing more of the process and progress for those goals in upcoming weeks. We remain grateful for the positive things so many people have contributed to the journey he and we are on. At the end of each and every day, his well-being, the well-being of those who continue to work with us, and the well-being of our family remain my top priorities.