As I have mentioned previously, when it comes to successfully working with Tony, his bond with a person matters. Evidence of this can be seen in many areas, and currently he is at his most cooperative only with the people he has more trust in. This is something that always has to be respected when it is critical to help Tony move forward as quickly as possible. In my opinion there is no area of his development where a speedier acquisition of effective habits is as essential as community safety, where Tony’s more rapid growth from Sotos could make a more protracted effort difficult to manage for everyone involved.

Not too long ago The Fabulous Miss Whitney talked to me about increasing the number of hours she worked with Tony for the next few months. Having Whitney, who Tony loves and trusts, with me on most of the public therapy outings for the past few weeks has made such a difference in reducing his most concerning behaviors in stores that she could need to start wearing a poncho to work because I may not be able to contain the eye flooding one of these days. For our little man, habit and routine are king, so establishing the habit of what we need him to do in the community is our goal with what we are doing and currently succeeding at bit by bit.

Doctors offices remain a separate category because his fear there is much greater and what we are working on to address his struggles in that area remains a topic for another day. While he does overall continue to improve in medical settings as long as there’s not a procedure being done, there were enough challenges in his Urology visit this past month (his Urologist was awesome with us/him as always though) that I got in the car, leaned my head on the steering wheel, and tried to convince my mutinous eyes I was in charge of what came out.

For this post, we’re going to be sharing both the successes and things we are still working on in community safety on the streets and in the stores, where we use both Neurological Music Therapy (metronome for regulation) and Applied Behavioral Analysis (emphasizing communication strategies and reinforcing with a preferred food item for external motivation when Tony responds appropriately in the environment).  For the stores, our team has hit a ton of places in the past few weeks (3-4 a day), some of them will be pictured and discussed, some of them not. For most stores we visit, even the ones I’m not typically a loyal customer of, we do try to purchase something because Tony needs significant amounts of practice with waiting in lines. If he’s having a hard time though and is not willing to wait, we will leave if he requests it on his device without buying anything because we want to reinforce that communication is the best way to handle his desire to leave.

Community Safety On the Streets

This area of his public safety I am still handling by myself, as it’s hot enough during most of the day we’re heading out early before Whitney arrives so that if Tony gets upset and flings himself on the sidewalk he won’t get burnt. What we are working on is flexibility in walking directions indicated and in changing directions. We are also working on stopping when requested, waiting, and not fleeing. I pick random directions and changes, usually having 5-10 direction changes per walk.

At this time, Tony is only challenging 1-2 direction changes per walk (previously it was 8-10), most attempts to push past me at this time are under 30 seconds in duration. This is a huge improvement over some of the half an hour challenges we were getting a few months ago. I still have had to carry him a goodly distance twice in the past month because he got pretty upset about the direction I picked. I am also having him wait each time he tries to flee, and I add five seconds per attempt during an outing (after I walk him back to the spot he started running from). We are also working on him requesting on his device if he wants to walk a certain direction.

Community Safety In the Stores

Most of these outings were done with Whitney. Jennifer participated in one outing to trouble shoot problems waiting in the lobby at one of Tony’s therapy clinics and at a local Target he’s not so fond of. We have the same flexibility in direction goals for the stores, plus we have added emphasis on waiting components and communicating requests to go potty, get drinks, and leave a store on his device. The successes that have made me the happiest are that Tony has communicated all requests for the bathroom independently this past month, and all anxiety poos made it to the restroom on time- even for the visit to Arrowhead Mall. This is huge for him and for us. He also has begun asking on his own to leave stores when he feels overwhelmed (he did this in the Disney store we visited) without being prompted by us based on behaviors. And, in a few of the stores, things went so well it was my shirts only that drew attention to Tony, not anything he was doing.

For the remainder of the post, I will be describing strategies and successes using some of the pictures and one video we took from a few of these outings.

Redirecting

A successful redirection when Tony is calmer and rushes towards something he wants, like this ice cream case at Walgreens, almost always requires getting in front of him and holding up a hand prompt to stop.  Video by Hannah.

Communication

We are placing a heavy emphasis on having Tony communicate what he wants as a more successful way for him to get what he wants in the community when it is possible to give it to him.

Waiting

Tony usually needs a countdown to help him wait, and sometimes he needs either hands on his shoulders or my hands placed in front of his chest to help him remember to stay put.

Sitting In the Community

Sometimes I use sitting either on a swing if it’s available or for eating within an environment to help motivate Tony to stay in it longer, but this is also an important skill to practice for eating out.

Some Trouble Spots

We are working on improving things like slowing Tony down to match the speed of the group, not sitting on inappropriate surfaces at stores, not trying to push the cart into things when he wants to run, not laying down when he gets overwhelmed, and requesting to go to fountains instead of rushing towards them.

A Final Moment of Public Therapy Gratitude

I would like to thank Hannah for all of her hard work and patience in taking pictures for this post. She is an amazing young lady. 

As a family and as a therapy team, we go to a lot of places and we get a wide variety of reactions, especially when Tony is having a harder time.  For this month’s trip into Barnes & Noble, I was wowed by the associate who stopped to check on Tony when he was on the floor in one of their aisles.  Our strategy is to talk him through his anxiety and wait for him to get up on his own unless he’s in the way of another shopper, at which point I would lift him out. The clerk was kind and supportive as she stopped to make sure we didn’t need medical assistance.  Honestly it was the best handled inquiry of that nature we’ve encountered, and when Tony’s struggles are handled so compassionately and professionally my heart overflows.  Just not my eyes, definitely not those 😉 They may try to be leaky, but they are not the boss of me…at least, they didn’t used to be.