“He’s growing so tall! He’s doing so well! He’s being so patient!” We were finishing up a quick trip into a local grocery store this morning with a new ABA behavioral therapist that is working with Tony in the mornings, and those were the cashier’s comments to us. As I have explained before to those of you who have been reading with us for a while I explained to this new therapist: employees of the places we often work with Tony in tend to remember us because we’ve definitely been memorable over the years.
Yes, he’s made some fabulous progress in his ability to function in public spaces (and not just in the inches he’s grown), and he’s gotten so much more patient…until you have to tell him “no” for something. For Tony, level 3 Autism and ODD synergize together in a way that makes most any “no” a battle. He doesn’t relate to the social structure or need to defer to authority, he doesn’t recognize the safety risks, and he gets hyper-focused on what he wants. And, if you have to tell him he can’t do something, just hearing that is like waving a red flag in front of every ODD related behavior he has.
That cracked screen in the picture I led in with is on his iPad mini that I bought him for educational apps. We also have a copy of his AAC (alternative and augmentative communication, aka a speech device) vocabulary program on it because one of the new goals we are working on at the direction of his clinical supervision team is having him carry his own device in public. The iPad mini is much lighter than his NovaChat, which is easier for him to carry—and much, much cheaper to replace should it become broken.
I know he wasn’t trying to break it. He got told he couldn’t walk a certain direction, and using all of his strength, he leaned his shoulder into me and tried to push is way through me towards the street, dropping this device screen down on some landscaping gravel. We ordered a new device, because the cracks are bad enough the glass could splinter into his finger if he tried using that screen again, and the device is old enough that repairing it really isn’t the better financial decision.
Owing to the pandemic, Tony’s ABA clinical supervisory team only returned to our home this past summer. The first walk BCBA1 was able to participate on in person in nearly a year and a half happened last month, and she too noted how much progress he has made. But for every bit of that, any situation where a “no” must be involved has to be managed carefully to prevent it from turning into a nightmare. A device can be replaced (but certainly not all the time, and certainly for some families even once would be more than they could afford). Our son, however can not be replaced, and he doesn’t pay one bit of attention to what cars are on the road when he’s become obsessed with a certain outcome. He tried to dash into the road about a month ago when he was walking with Andy and I, and I made a grab on the back of his shirt that left scratches which bled and ultimately scarred his neck as I moved at top speed to keep him from getting hit by an oncoming car.
This is part of the importance of his ongoing ABA services to our son and our family, as we have therapeutic programs we are working on to help him more calmly and safely tolerate a “no.” The program started with getting him to wait calmly without dangerous behaviors for up to 20 minutes, then focused on teaching him a tolerance acceptance response, and now we are working on throwing in a small amount of “no’s” in public settings.
There’s no way around it, this program involves risks and it hinges on my ability to physically be able to block and stop as needed any attempt Tony makes to get somewhere that involves crossing traffic. Someone asked me recently why we take him out in the community to walk and practice these skills if he tries to run into the street. My answer was that we each of us are taking risks every day we leave our house, but we wouldn’t be giving Tony any quality of life whatsoever if we didn’t do everything we could to help him gain the skills necessary for him to function safely in the community.
I consider many things as I structure our walks, and the first is the ability to give Tony some wins along each route, so that he feels less angry about being told “no.” I am also trying to make sure, that unless I have no other choice, I’m not setting up our walk to put us on a path where I am going to have to give him a “no” he’s going to feel more strongly about. So, the goal is to give him “no’s” at this stage for things he wants just a little less intensely until he’s tolerating that calmly. Then, we will work him up to items or directions he feels more strongly about.
Generally it’s better to avoid having to tell him “no” on a street with a lot of traffic, so how I structure and time our walks is really important. Managing routes based on time of year has become important also. Because my heart rate is going up higher in the summer months, we took a couple routes off of our working rotation this summer (because they had items like the community pool that he had strong desires to push towards at all costs) so that I wouldn’t be put in positions where I physically might not be able to match everything he was coming at me with. I also ask Andy to be on standby if there’s a situation I think might provoke Tony more so that he can be prepared to come rescue our little team in a car if Tony refuses to stop trying to push towards the street in a particular area.
And, because I am his mom, if he does any pushing over five seconds, Tony looses walks outside the house for a day. I start a verbal countdown each and every time he starts trying to push through me. He loves walking around our community, so this is really about the only consequence he will take seriously, because there honestly isn’t a reinforcer or reward with sufficient power to entice him to calmly take “no” for an answer at this time. As BCBA1 has noted, he clearly understands this as a consequence (though it doesn’t always stop him from pushing too long, he certainly tries a whole lot harder not to). What he wants in that moment has become more powerful than any other thing he enjoys, so I feel like part of our future success depends on our current fidelity to holding him accountable every single time for the amount of pushing he does. I make sure to tell him that as he gets bigger, people aren’t going to let him just push his way to whatever he wants- they’ll just stop taking him out on walks.
Because nobody wants to see “no” turn into a nightmare for him or us in real life.
One more brief makeup note for my sisters-in-law so that I can lighten up the end of this post for them:
Because Randi mentioned my lips in a comment a couple of posts ago, I am going to own up that I have never loved my lips…I feel like they are too thin. Much (but not all) of the time I overline, and that makes my lips look fuller. I don’t overline by a lot (because too much and it looks like you’re overlining), and sometimes I do my own variant of the Makeup by Mario Lip Flip: I overline just the center part of my bottom lip with a slightly darker shade than my lip shade, which creates the illusion of more volume. Also, I sometimes use a tip I learned off a Raw Beauty Kristy video when she was trying to replicate some of Snitchery’s tricks: I use a small amount of contour or bronzer directly under the center of my bottom lip to make it look fuller. And I’m going to leave my fab fam with one more video for those of us in the over 40 category…I think Wayne Goss has a lot of great tips in this video (and I love his thumbnail where he describes his model as beautiful before makeup and after). Notice that he uses a lipstick as a base for her blush- a good cream lipstick can be substituted entirely for a powder blush, avoiding some of the aging effects of powder on the face, and letting your makeup collection multi-task. You just need to make sure it will play well with your foundation and not cause it to break up.
