A few months ago, Stephanie (the super fab Case Manager for Tony’s ABA programs), recommended we transition the funding of our little man’s ABA therapies to the behavioral health division of his long-term care benefits. I was assured that she and her team would remain as the primary providers of service and given a list of organizations that could facilitate the oversight of this process.
A few of you already know this about me, but I can be a wee bit uptight about annihilating tasks on my to-do-lists. That is part of what has been so hard about the past few years on my psyche…the list has been greedily glutting on our circumstances and now greatly exceeds anything I can ever hope to accomplish. And so, I prioritize- and anything my kiddos need gets to take a rocket straight up to the top. Thus, I had an appointment set up with Arizona Children’s Association less than twenty minutes after my meeting with Stephanie had ended.
When we had our first in-office assessment with Tony’s super sweet ACA case manager, J.N., let’s just say Tony was not thrilled. I spent most of the meeting pulling him off her desk (upon which he kept climbing onto and rolling around on), trying to keep him from yanking over her floor lamp, stopping attempts to flee, and cushioning his head when he tried to bang it into the wall. He was making enough noise with all of this that one of her coworkers stepped in briefly to make sure everyone was ok, and J.N. asked me towards the end of the meeting if I was spending any time in all of this taking care of myself. Next question, please.
She also asked me in the meeting if there were any pressing needs for Tony that she could help with, and I told her that one of his biggest deficits is with generalizing cooperation to others. I am the person he cooperates with the most, and I cannot, for the obvious reason of having an expiration date given to all things living lurking somewhere in my future, remain the only person he works well with. She generously agreed to come in once a week and work with Tony and our team to help with this.
Tony in-home is a very different kiddo, especially if you respect his boundaries and ease into interactions with him. Even before our sweet son was started on the medication for his recent ADHD diagnosis, he had become willing fairly quickly to sit and interact with her for brief periods of time playing with some of his more preferred toys and puzzles. She had learned of his fondness for baked Cheetos and would bring him small bags, which honestly earned her way into my heart quicker than it probably did his because he can take a bit of time to form bonds with people. But baked Cheetos always help 😉 and we are profoundly grateful to J.N. for working so compassionately with our family over the past few months.
The improvement the ADHD medication has made to Tony’s ability to focus on activities has moved him from an average of 30-120 seconds (so yeah, 2 minutes tops) worth of playtime attention for most structured tasks between breaks to upwards of an hour. 60 minutes feels like “wow” in that context. He’s been experiencing such a drought of joint attention, this felt like winning the lottery for a life-time supply of drinking water and he is once again very different to work with for most everyone.
So, I did what I tend to do and plotted ways we could work on some next-step challenges in this area. J.N.’s weekly visits suggested to me an invaluable opportunity to work on turn taking with multiple people. I knew Tony would not engage well with many of the traditional games of early childhood, therefore I purchased some turn taking activities that relied on simpler procedures such as sticking a toy sword in a pirate barrel or putting a penguin on a boat. Just to be clear, our sweet kiddo doesn’t care even a little bit about the aspect of play that involves determining a winner, but he is willing to participate in certain turn taking games if the tasks required feel doable to him.
Some days our little man sits with us most of the time, only pulls out or puts in one item, and retains optimal levels of emotional regulation. If there’s been a lot going on with his schedule that has been upsetting for him, he still can trend to the less engaged and more emotional side. Often he struggles a bit with the concept of turns…as far as he’s concerned, every turn should belong to him. But he usually doesn’t try to redo other people turn’s anymore and my heart is sighing with joy that progress in this area is finally getting a turn of its own.
