The Progress You May Have Missed From The Distance You Are At

What do you see when you look at the picture below? What does it mean to you?

Maybe let the photographer physically be just a little closer. Any clearer?

No? What about now?

Maybe we need to get a little bit closer, to know what the people at this place and this moment saw and knew. How it compared to what they’ve seen in previous moments over the past nearly three years. Maybe we need it just a little closer still.

Ok, maybe it’s hard to zoom in on a picture only and get all of that information so clearly. But those of you who know my son and know me recognize at this point, I am sure, that the person he’s walking with isn’t me. But the person taking the pictures was (all of them for this post). I was walking at a distance with another teacher and student while my son was calmly walking with another aide and following her instructions from the bus bay to his classroom.

This is a common, everyday moment for many other special education kiddos, for many other parents. Not for me, and not for our son. Currently, it still takes him about 9 months to build enough rapport with someone to where he will follow instructions from them or cooperate on academic tasks.

Currently at school he can calmly tolerate working with other staff for about 2 hours and forty minutes. Above is shown part of the harness fading sequence where we are also getting him acclimated to me sitting farther away and then having another person sitting next to him as the safety monitor (her face is covered to protect her privacy). On Monday April 27th we’re going to be taking the final step for school bus rides of removing me from the bus and having me meet him at the school.

We only increase the amount of time he’s working with others when he’s not trying to elope or self harm, as those indicate dysregulation and non-acclimation to the expansion of time. For any increase or a new person, he needs still increased reinforcement and the presence of a person he trusts somewhere in the room for him to feel safe continuing to try anything with them. Increase anything here too quickly, and he doesn’t feel safe and starts environment, task, and people rejecting. We had a huge unexpected setback last year with my spinal chord injury… he was so scared about life in general because of that, so he didn’t want to work with anybody else except on my lunch breaks because of it. I work with other students during that time he’s working with other aides or therapists and we do the best we can to meet his needs and the needs of the school overall. Eloping is something that, with four diagnoses that impact impulse control, may be difficult to fully eliminate for him, but which is pretty easily manageable at this time with him following safety instructions for the individuals he is with.

We are still doing exposure therapy and desensitization to certain activities at his current school, such as lunch in the cafeteria, which can get very loud. This is shown above in the first picture, where he is looking anxious but choosing not to use his headphones. We are seeing successes in larger school groupings that are quieter, such as the group photo for his eight grade that was taken several weeks ago, shown in the second picture.

In the early days of this blog, I wrote a post called “The Mustard Seed” that I never published. This post detailed the root of his intense fear of others, namely medical procedures when he was very, very young where sedation couldn’t be used so providers resorted to restraint. Paired with his extreme sensory differences, it created a fear of others that could be so profound he would vomit if they got nearer than he was comfortable with. Constant eloping was common. Crying, screaming, hysterics, fight or flight attempts to leave places…all were seen in his earlier years. I have written about many of those things.

That specific tentative post detailing what had happened, I chose not to publish because the particulars occurred when my son was still in foster care, and I wasn’t sure that legally I was able to disclose that depth of information even though we became his adoptive parents. There are privacy laws that govern the medical information of children while they are in foster care in the state of Arizona that are separate from federal privacy laws. But whether we can speak publicly about all of the specifics or not, the challenges remain. If he was a neurotypical kiddo perhaps his reaction to those events would have been very different, but he is not. And, as I mentioned many years ago, he was pulled off the medication class they tried to initially treat his fear of people with because of the severity and riskiness of the side effects he was having. So the only effective approaches we have available to us really have been exposure therapy and desensitization.

Medical settings, especially dental, can still require extensive amounts of therapeutic preparation for successful exams. But it is paying off. Just this week, as a result of the desensitization and practice work with dental tools (including x-ray clips) in habilitation therapy sessions we have done (which has been facilitated by his dentist allowing us additional visits to their office) they were able to get dental x-rays that showed even his roots. This is the first time for a set that showed everything the dentist needed without anesthesia or sedation. They were also able to get the full cleaning done by giving him small breaks.

We have to use very meticulous progressions for all of this and for training in his impulse control and risk assessment skills. His nervous system may not adapt to these changes at the pace we would all like to see sometimes, but it does adapt when he’s allowed to progress at a pace that feels manageable to him personally. We are working on harness fading in the car as well, and currently he can stay in a room with unlocked or open doors reliably for three hours without trying to leave as long as he’s not afraid or dysregulated. At school as long as he’s with a trusted person and he’s not scared, it is usually only once or twice a week that he looses the impulse control battle on that one.

And that puzzle? He’s just started doing some 100 piece puzzles correctly all by himself. I know that these steps look really way too small from the distance some people are at with their skills. But they are huge for him. I see this as the 1% improvement principle that the author of “Atomic Habits” shares in his book…1% every day may seem small, but over time, it adds to something much bigger. Here are a couple more 1% kind of moments for Tony:

He’s now able to balance fully on a scooter and make safe turns. He’s also now able to write the “T” in his name by himself. His motor planning deficits are so severe I never see him writing as a primary means of communication. But I do want him to be able to write his name in case he ever succeeds in getting away from us sometime in one of those elopement attempts without his speech device so that he can tell people who he is. The above first name was written entirely by him and resulted from a lengthy chaining sequence where portions of this skill were taught step by step over many years…just for the first name. Now we start working on our last name, which you may not see for a while from whatever distance you are reading this from… and that’s OK.

However, maybe because you now know a little bit more about the progress you weren’t able to see and what it took to get there from where you are at, you may join with me in recognizing that more progress is still going to be coming for him. It’s just a matter of time. But those skills he’s building? Once he has them, he will have them for the rest of his life…regardless of the amount of time it took to get there.