Ariana's Posts

Community Safety Progress Presents

Posted on by Ariana
Tony, sitting and resting after having asked permission on his AAC during a recent community safety walk, all photos by Ariana

Hannah and I put up the outside Christmas lights by ourselves this year, and so Tony needed to accompany us up front. Historically, any sort of outside task required multiple (you should read that as every couple of minutes at least) sprints chasing Tony down as he laughingly ran out of our yard. But when we put up the lights this year, my running shoes weren’t needed because when I asked him to stay he did. A couple weeks ago, Casandra dropped her phone somewhere along our community safety route, and we needed Tony to cooperate with a complete route and plan change so we could retrace our steps, searching. And he did. Just six months ago, he absolutely would not have. His cooperation when others ask him to “stop” during walks reached a high enough percentage to where that goal could be mastered out.

These are the types of progress presents we need, the type of skills we need him to acquire to be able to work safely in public spaces with others, and the reason why I place so much emphasis time wise on our little man’s community safety goals. Slowly but surely, with a lot of hard work from everybody involved, we are slowly starting to pile up a stack of essential skills that will bring even further future gifts to Tony and our family.

Tony looking at the pool longingly on a walk he did with just me where he asked very nicely on his AAC to walk across the street to it. Most walks I tell him no, but sometimes we go if there is a request without pushing.

We have also been able to see the degree to which Tony understands and will modify his behavior as long as the consequences remain clearly connected to those actions. Those of you who have been reading with us for a while may remember that we had to take one of Tony’s favorite walking routes off of our community safety rotation for the summer months because he was pushing too much towards the neighborhood pool, and where I was at on my POTS journey at the time, I was concerned I wouldn’t be able to keep him safe on that route. I made sure to explain the reasoning that route was no longer allowed multiple times when it was put on hold. We reintroduced that route as temperatures cooled down, and we haven’t had a single episode of pushing in regards to a boundary I have set about the pool. He understood, and worked hard to control his temper…and for the sake of any future Tony might have, there can be no greater gift than strengthening his ability to do that.

Sometimes we still have to set limits on what gets done because of my health. I got my COVID booster last Friday (I went with Moderna this time), and I’m not sure whether it was the localized allergic reaction or the small increase in my body temperature, but I had a POTS flare up. By Saturday evening, my sitting heart rate was floating between 120 and 130. Fortunately I have learned a lot about what to do to take care of myself when this happens, and as of this morning I am pretty much back to my new normal, which included 15 minutes on my rower right after waking up. But sometimes we have to cancel walks entirely or modify his routes so that we can manage both my health and his safety appropriately.

Dec. 17, Boosted and looking fine…
Dec. 18th, the makeup is fierce but the heart rate could be better
Dec 19, still red, itchy, and swelling a bit
Dec. 20th, heart rate doing much better, but still red & itchy

For the rest of the post, I’m just going to put up a lot of pictures of the types of things we are currently working on with his community safety programs. We are soon to be adding a goal where he turns around at the request of the therapist instead of me, and we are advancing the number of directional changes expected during each route. And next week, we have another gift…a new hab therapist who is going to come spend some time working with Tony and I. If she ends up feeling like our circumstances are a good fit for her, we could have another person to help our son generalize these skills with, and that is the most critical component needed for of all of this.

Sometimes it’s just Tony & I…
Sometimes Andy comes, and he does more high speed running with Tony, who loves to run, because my POTS still can’t handle running fast. One of us is always between him and the street.
He rarely elopes to someone’s door anymore, but now we are working on keeping his feet out of the yards of others.
Nicole & Tony. She’s been helping generalize his cooperation skills in stores for the past few months.

Even though I continue to do his community safety walks by myself as needed, I’m kind of like a place holder. I keep us from loosing ground and I push his overall skills forward within the family context, but I cannot do a thing on my own to increase his ability to generalize working with others. We remain grateful to everyone on the therapy team who has been involved with that, and I want to also note my gratitude for Nicole, who replaced J.N. on the therapy team, and meets with us once a week to help Tony generalize practicing with others. She participated in community safety in the early fall, but she won’t show up in any of the pictures until our public therapy post next week. But she is an important part of the successes he has been having in generalizing cooperation to others, so I want to make sure she is mentioned and credited for that.

Tony likes to sit on our glider bench before and after every walk.
Part of the programs are focused on him asking permission independently to sit.
If he elopes (runs off), and it is somewhere safe, I will wait for him to come back without me having to chase him down.
practicing waiting with others, Casandra & Tony
Practicing coming to another person when called, Casandra & Tony
Practicing waiting for longer periods of time, Casandra entering in data on her phone
Practicing waiting with RBT M
Practicing Coming when called by RBT M
We practice each skill multiple times per walk
If he independently asks to go to a park we are walking past, we will give him a time limit and say yes.
We are working on having him ask for more time if he wants it instead of just refusing to go, some stages of this skill still require prompting at this time.
We will do the same thing with park sprinklers when it is warmer.
Sometimes he’s having so much fun he refuses to leave when told, and I end up having to chase him down in the sprinklers…
Communication is important, so if he tries to grab something without asking on his speech device, the therapist will hold onto it until he asks BCBA1, BCBA2, and RBT M shown
Tony asking for his water
If we pass by a place he knows has a bathroom, he often asks to use it. We make sure to walk by these locations when they are open and closed so that he can start to learn the difference.
Tony asking to use the bathroom of a local school’s front office. We mask him up before we go in.
Direction changes when requested are a skill that he needs a lot of practice with
RBT M is pointing out the change to him, we are currently doing 4 changes per route
Tony is offered a cookie when he has completed the change with safe behaviors.
Casandra will show him the cookie before asking him to follow her for a route change
She has to hold it above his reach, and she’s one of the few therapists tall enough to do that. We still need cookies because no reward usually equals no cooperation, though we are starting to see the emergence of a willingness to make some changes without a treat
After a certain distance, we will allow him to ask for a direction change of his own. Sometimes we say yes, sometimes we say no.
Sometimes when he’s angry about a change, he will do a bunch of hopping, running, and crying.
He wasn’t happy with this change. Sometimes he will still push, and for safety reasons, you’re never getting a picture of that…
When the clinical supervision team is along, they take turns directing the changes so he gets extra practice generalizing. BCBA1 asking Tony to make a change
BCBA 1 waiting while Tony asks to walk down a different path.
Maria is shown leading the team, while BCBA1 and BCBA2 (the clinical supervisors) observe

And this is what we are working towards: more smiles and happiness for everyone in public, and more functional communication replacing worrisome behaviors related to his struggles with risk assessment, emotional regulation, and cooperation.

Ariana

2 thoughts on “Community Safety Progress Presents”

  1. I think you could actually write a book about Tony and it would benefit families who are new to the spectrum disorder group. This is a quite detailed account of your working process. Just an observation, hopefully not an intrusive one.

    My son is much older. It has been difficult having a child who is a runner. I won’t go into detail, but it was necessary to install security alarms and bars on his bedroom window to keep him safe. And to keep him out of neighbor’s homes. The teenage years are a different kind of challenge. But I recommend taking it one day at a time, one tic or compulsion at a time. Good luck.

    1. That is an incredibly kind comment, thank you! <3 I don't know how marketable a publisher would find Tony's situation, usually they only find a low functioning individual's story marketable if they end up showing some remarkable skill, or wildly exceeding expectations when it comes to their communication ability or comprehension. I don't know yet how Tony's story will end up, but part of why I started this blog was so that other families who have kiddos with one of his genetic disorders would have something detailed to turn to. And, I was really frustrated not finding information on the market that spoke to the needs of my child. We might not be far behind you in terms of the bars on windows, etc. We already have a security gate on his bedroom door. Once he becomes able to open the window himself, bars will be about the only thing we can do, so I understand that. Thank you again for visiting me here on my blog 🙂

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