At the meeting place of Tony’s growth rate, his sensory differences, the profundity of his Autism, his intense impulsivity, and his heavily delayed risk assessment beats the heart of some of my deepest fears for our son’s future. We remain racing against time, have been engaged in every strategy we can think of for years now to win community safety skills before our little man grows large enough for any attempt of force on his part to be successful. Often people like to read a story that ends with skills dramatically above what can be predicted by an individual’s diagnoses- being generally perceived as the happiest, most triumphant of outcomes.
I have never claimed to be writing that kind of story. Our ending remains unknown, though certainly I believe and hope for every good thing imaginable for both of my children. I tell a truthful story that may never evoke joy in others because within our communities, people often look away from families such as ours. And I think everyone deserves to be seen.
As we have been doing all that I can humanly squeeze into my schedule as we attempt to arrive at a place better than some would predict, I can’t even begin to crack a whip on the length of this post and humble it into submission without sticking to the present. There will be upcoming posts for others who may be on a similar journey that discuss a little bit more about some of our past concerns and strategies in this area.
When it comes to risk assessment and impulse challenges Tony has when we’re out in the community, he frequently needs to be physically stopped from doing dangerous things, and he requires constant reminders about what is safe behavior. This applies to pretty much every way he could be injured or every single thing/person that he could damage- though he actually rarely intends to cause harm. He just doesn’t pay attention to where others are for either panic based eloping (running off) or attempts to push his way to what he wants.
Last month, I shared a bit about some of the side-effects our son was having while taking a newly prescribed medication (Sertraline). One of the difficulties I have found for Tony is that because routines give him all the happy “feels,” only a very short period of time performing a new behavior and he is ready to habituate it. The aggression, increased anger, and reduced impulse control that came with that medication are nothing we wanted to hang around, and yet some of those effects did linger and dramatically increased the difficulty of keeping him (and everyone else) safe in the community once we pulled him off.
Tony’s a big guy for a seven year old, so for the time being while we work through some of these issues within the community two people are a necessity. We also are still using a metronome on our outings. This is Neurologic Music Therapy technique to assist him with emotional regulation and a steady gait, and we are setting it to the beats per minute recommended by his therapist. We are also using ABA and functional communication techniques.
We decided some of what we were seeing was best managed by letting our son know that in order to be safe on walks, he needs to not push to try and get to areas he wants. Any sustained pushing of more than five seconds and he looses the privilege of going on a walk the next day. Our son loves his walks, so this has certainly been effective (although it definitely made him incredibly angry the first few days). Because he does have significant challenges with impulse control, we are giving him frequent reminders about the behaviors we find appropriate and the consequences for doing something different. Eventually we will tighten down our expectations so that any attempt at pushing at all will cost him a day’s walking privileges.
Nothing we can offer our son on these walks matters as much to him as getting to where he wants to go, so I felt it was important for him to understand now that as he grows bigger, rather than obtaining his desired destination through force, people will just stop taking him on walks altogether for safety reasons. We also feel it is important let our little man pick the directions some of the time.
We have paired this with a fabulous recommendation made by Chris, who is providing our son’s speech therapy services. Chris recommended an app for creating social stories called Pictello (which I purchased for $18.99) that could be used to provide pictorial walk-throughs for the routes our little man finds most problematic. We’re going to expand this for other uses also. As a brief note to other parents of kiddos with severe communication delays, Autism, or other language disorders: the automated narration can run the words together too quickly, increasing difficulty in understanding. I recommend either recording the words for narration into the story more slowly yourself or reading it through in such a manner each time if this is a concern for your kiddo.
Emily and I tested this out first for a route that our son has recently become quite combative about (because it passes by a park he would prefer to play at). We read through the story and pictures three times before starting out. On the walk that followed, I had Emily walk ahead of us briefly to model direction changes our sweet son has been less cooperative about historically. The calmness our son exhibited and the exactness with which he complied were a stark contrast to our previous recent attempts. Though we were already showing him a couple of pictures of starting points on my phone and giving him some explanations, it was clear from the success we have seen by using more developed route stories in Pictello that Tony is more willing to be cooperative if he has additional visuals to accompany our instructions. Obviously, spontaneous directional flexibility would be great, but that is what we are working towards and not where we are at.
Giving Tony increased opportunities to follow directions from others is important, but when he is having a more emotional period, I work through the more challenging routes first with Emily. She has worked with him directly longer than anyone else on our therapy team right now. Once he’s had some practice with her, we rotate those routes into our community safety work with Casandra.
Another component of community safety we work on is helping Tony to stay in an area like a park without running off. For this trip with J.N., she played with Tony while I stood vigilant for (and ready to block) any attempt to run onto the street. For me, it was intensely joyful to see our little man interacting with so much enjoyment to playing chase on the equipment with someone else.
When Tony does try to run towards something he shouldn’t, if we have the room I speed in front of him and pair my verbal request for him to “stop” with an upheld hand as a visual cue. We are trying to get him used to stopping his own body. Tony definitely understands what “stop” means, but usually the impulse drum beat of “I want that now” drowns out any words of mine.
The techniques we are engaged in are slowly helping him to strengthen his impulse control, but we have to be careful to make sure he is capable of complying with any expectations we have before we raise the bar. Otherwise, we are just setting him up for failure, which would lead to confusion and resentment rather than skills gains. The way he’s responding to our current increased expectations is very encouraging. Tony will write his own story with each day that passes, and I will continue to cheer him on however it turns out.
