I was talking to our son’s geneticist today (who is sadly, accepting a new job elsewhere this summer- sob!!!), and we were discussing how hard changes can be for Tony. She commented that the kinds of changes we have all been experiencing in our communities can be hard for anybody.

When a kiddo has as many diagnoses with overlapping symptoms as our little man does, sometimes it can be difficult to definitively say which condition is the root cause. His love of routine and fixation on particular products could be strongly associated with either his FASD or his Autism. For those of you new to this blog, I love Tony as if he were born to me, so I only ever feel the need to mention he was adopted when discussing his FASD diagnosis. I have experienced the sharp sting of judgment that comes my way when someone thinks I was the one who did the drinking that caused this for him- and I was not. So for that reason alone I bring it up briefly here. He is my son, and being declared so by a judge has not ever mattered to my heart.

I noticed our little man’s rigidity quite early in his toddler years. When we were trying to wean him off the bottle, he refused to drink milk any other way. To this day, he still won’t drink milk because it isn’t given to him in a baby bottle. For over 7 years now it has been so.

For the parent of a kiddo with highly specific brand, style, texture, and routine expectations and preferences, the amount of upheaval we have been experiencing secondary to the pandemic can be a nightmare to navigate. Individuals with level 3 Autism can and have refused to drink if they didn’t have a specific cup or eat replacement brands if a product was discontinued. The determination displayed in these kinds of situations has ended in hospitalization for some.

In what I say, I want to pause a moment and say these are the challenges of living, and there are those who are mourning a loved one lost right now. We are very blessed to have these struggles at all because it means that we are still all here, together as a family.

When COVID cases were officially recognized in our community, within a matter of days Tony’s schedule exploded. Virtually nothing was the same, and many of his product-specific snacks could not be found because of panic shopping behaviors. Some of them still can’t be found on-line or in our local stores.

For nearly a month, our little man lost all therapy time with both Emily and Casandra. Initially, we weren’t sure what to communicate with him about when they would be back and to what extent, because one of the possible scenarios included the permanent loss of one or both of those therapists. NMTSA closed their clinic doors before the governor announced stay-at-home orders to protect their immune compromised music therapy clients, and NMT, ST, and OT were moved to telehealth. I was terrified that this much change was going to lead to a massive regression in the reduction of self-harming behaviors. I did everything I could to pull back on pushing him to do his most aversive therapy tasks myself, and braced for a self-harming storm.

A storm that never came. Oh, he definitely wasn’t happy about any of those changes, but mostly it has led to a reduction in cooperation. Sometimes he will try to push more to get to something he wants, and he will meltdown and engage in other behaviors during telehealth sessions, but with everything that has changed and transpired, we are actually experiencing only one or two incredibly brief self-harming episodes a week. That is better than I could have ever hoped for based on our past experience with even one change occurring for him.

And, a couple rare bursts of adaptability have burst through these behavioral clouds. His preferred Cheetos (Baked), have been hard to come by. So, I got a couple of replacement options. They were not identical in texture or appearance, but they were the best I could find. The displeasure was evident when he first put one in his mouth during one of our early morning community safety walks, and he refused to eat the rest of the bag for several hours. Tentatively he tried a couple more later in the day, and within a couple of hours, he was asking for bowl after bowl of them. I was floored- and grateful.

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Another success was our replacement attempt for his Van’s gluten free peanut butter and jelly bars. I found some Bob’s Better Bars with a similar flavor profile and texture, though they are a different size, packaging, and lack the jelly filling. Usually a packaging change alone (even with no other changes to the product) is enough for him to reject an item. He gave me a dubious look the first time I handed him pieces of the new bar type. He tentatively licked it, mulled it over for a few moments, popped it in his mouth…and mercifully ate the rest of the bar. Now that we have some Van’s back in the house though, he’s back to rejecting the Bob’s.

Most of the time we aren’t that lucky. I still can’t find a similar product for Enviorkidz Chocolate Crispy Rice bars that he’s willing to eat. He won’t even touch bars with a slight color variance, and hates the texture of every other brand we’ve tried. None of those ill-fated attempts even made it to his lips- they were pushed away while he gave me the stink eye.

What Dr. L said was true…changes can be hard for anybody. I personally wanted to cry when I found out she was moving on to a fabulous new career opportunity. We have been blessed to work with her, and wish her every success imaginable. But for Tony, often just one change is accompanied at the best by a temporary stall to progress- at worst, behavioral regressions. His reactions to the current flood of changes tells us the true depth of success he is having in overcoming his urge to hit his head on things when upset. For everything else that has come to us this spring, this alone has been progress far greater than I truly expected. And I remain thankful- every day. I am thankful to Tony for working so hard with us (even when this much change makes it so difficult for him), and for each therapist and doctor who has worked with our family to help him/us move forward along the way.

I hope each of you are hanging in there with whatever changes have come your way. Take good care of yourselves. <3 Ariana