Miss Dee (Tony’s first occupational therapist) and I had been talking several years ago during one of his initial appointments, both about things that I had observed and things that she observed with our son. She looked at me and said something to the effect of, “So he really struggles with transitions.” I agreed but I honestly I didn’t have a background that involved any education or training in therapeutic techniques for this type of challenge.

She recommended that I make several photo albums for places we went frequently or of people we saw on a regular basis. For places like their clinic, she recommended pictures of as many steps as possible. She advised me to talk him through the book before we left and once again in the parking lot. We had the clinic’s picture in it, Miss Dee, the receptionist, the play table, the lobby, and one of the back therapy rooms. I still actually have that book buried in a box somewhere, but for the simplicity of my schedule and to allow a bit of time for more important things, I opted not to hunt it down to illustrate this post.

This became the model for how I approach any sort of transition, although some transitions (like a therapist taking a different job elsewhere) can’t really be photographed that way in advance and have to be verbally talked about frequently. I usually begin prepping him for that kind of change as soon as I know it is going to occur, because often he needs a good two to three weeks to process something he feels very emotional about without resorting to brief but dramatic escalations in self-harming to help him cope.

This pandemic has brought so many challenges with it, but for Tony one of the harder aspects has been that things are constantly changing, often without much notice. Clinics closing, some therapies only occurring via telehealth, huge chunks of his routine constantly mutating and undergoing massive reconstructions. And, on top of all of that we’ve been on quarantine multiple times, and every time this upends his world for a couple of weeks with close to zero chance to help him transition.

I have handled helping him prepare for everything I could by building as much of a framework as I could for him to frequently visualize what would be happening as far in advance as I could. But still we have seen far more change over the past nine months than any other period in his life, and that has been very hard for him emotionally. The stability of his routine helps him feel emotionally safe, and this much volatility is hard for him to navigate. For some things, like Emily leaving as his habilitative therapist, I also made sure that as soon as I knew she was applying for other jobs, I structured my therapy time with him to the schedule I would be able to maintain after she was gone so that he wasn’t having to adjust to another schedule change and fully process an emotional loss at the exact same time.

As I was thinking about all of these changes, I realized I may need to add a new approach to augment our efforts to help him transition through changes and activities. I started telling him about two months ago that really in life the only real routine was change. Change is the one thing each of us can count on that is always going to be there, and that even though it was hard, he was going to become King of the Changes. Because he would just always have to know that change was going to happen often and he wasn’t going to let it get the best of him. Even if he doesn’t like changes, he can accept them by expecting that they are the only real routine.

I was telling him that again last night and he was saying to me “Oh, yeah. Yeah. Yeah.” Although our son is considered non-verbal, he still does make verbal affirmations and negations (with an occasional head shake or nod for emphasis). I am certain he understands what I am saying, though I am sure at many points he really wishes that wasn’t the way it was- and he definitely hasn’t hit the point where he likes it.

And sometimes, it has to be remembered even by our little man that not every change is bad. Two weeks into our transition for loosing Miss Emily as a hab therapist, she offered to cover a few hours with a different agency in her spare time. Even Tony could agree that change was pretty sweet. We still need someone to fill most of his hab hours, but he loves Emily and thinks of her as part of the family. I in turn, aside from having the honor of being one of Emily’s friends, am aware of what a blessing it is to have someone working with us for any amount of time who genuinely loves our son and cares deeply about helping him gain important safety skills.

And, this particular change also demonstrated that even for Tony some transitions are easier to accept than others. He laughed with joy when I was talking about the arrangements with Emily on the phone, though he did indicate to me on his AAC device that he wanted all of the original hours back. I told him that couldn’t happen, but he was till happier.

We had a speaker phone meeting with his DDD support services coordinator (Miss J), during which we discussed getting the authorization for those hours in place with the other agency for Emily. Later in the night Tony woke up to use the restroom. I went back to to my room after helping him and heard him say on his AAC device via our safety monitor, “Thank you, Miss J.” And then he went back to sleep.

Perhaps that seems random, but our son pretty much never thanks anybody independently (he also never talks about Miss J unless he’s greeting her for a meeting) and he processes his thoughts about things at his own pace and in his own way. For him this was a change that made him happy and that’s a big deal. Many changes are still hard, but our some day King of the Changes is grateful for some of them, and I am too.