I have always been so very grateful to the therapists and individuals who have chosen to work with our son and our family. So many years ago when Andy and I were driving our rental car towards Disneyland on our honeymoon, as we talked about the family we hoped to start our current circumstances really weren’t anything I envisioned as we dreamed together about our hypothetical future children. I treasure both of my children, but it is undeniable that having a child with such profound functional deficits who would resort to such intense maladaptive behaviors in his attempts to navigate through just about everything in life has really molded what our family has been able to do and what it will be able to do going forward.

I always wanted to create something positive (ish) here as much as possible, where we celebrated what was going well and did our best to ignore what wasn’t. I know, however, that many of the things we have encountered on our journey have been difficult experiences, and that can be felt even in just a description. As I have wrestled in my own mind with how to discuss what has been happening with our former ABA provider since this past spring, first and foremost it has been important to me to continue to only describe. And I think often about how I very much want what I write here to reflect the realities other parents could be facing should one of their children have a similar level of need to our son.

That being said, I am in a situation where some of what I might feel benefits this community of parents to describe going forward could reflect on programming I am doing in hab to counteract some of the still ongoing (but improving) behavior regressions our family attributes directly to the programming of our former ABA team. Again, I would like to make sure that their position is represented here, and they believe their programming was the best option for Tony, do not believe it was responsible for the regressions, and have stated that they cannot say what was causing them. This has been a very difficult situation for our family and for me personally for many months now, culminating in that provider terminating services, which happened shortly after I again requested different programmatic options through their organization when a second opinion obtained by our developmental pediatrician indicated that different programming was the most appropriate course of action for our son.

While of course I would want people to see themselves in my circumstances, it is also important to me that nobody be directly harmed by what I might choose to describe here. So I have edited out the names of the BCBAs involved from any prior posts, covered any shirts with their company’s name/logo, and in any pictures where faces were unmasked I edited out faces as well. Certainly I did hope that their team would have chosen to handle things differently in regards to the programming they switched to using starting last spring when I first approached them on behalf of our family with our concerns, but I still also want to honor the positive things they did contribute previously to our son’s journey and leave up as much of that as possible.

I really didn’t envision being in this type of situation with a therapy provider when I began this blog. Going forward, because I have mentioned here some points upon which these former providers and I have differing views as it impacts the care of my son, I feel it is important to shift from posts involving other therapists to maximize the comfort of everyone choosing to interact with our family in this capacity.

For me, I still have decisions I am trying to make about how I want to handle these events in other public spaces, and first and foremost my thoughts continue to be driven by what I would hope to see other parents experiencing on this journey, what I would hope to see for their children. For the time being I don’t have a set timetable for making those decisions because I want them to be made from the calmest, most grounded place possible. That is definitely an inner journey that can’t be forced to anyone’s schedule.

For myself personally, I am wanting my energy to be spent as much as possible on my family and on the work that needs to be done to transition our son into a school environment. And then I am going to be focusing on schooling for myself and working outside the home, where my plan for some time has been to transition into therapy. So, I’m going to be busy. Really busy. And so, my posts are going to get shorter and they are going to stay that way. I am still making decisions about if I want to still follow the same overall post patterns or not, but for now, this is how we are starting off the New Year at The Quiet Crisis Next Door.