A Sanfilippo Story by Grammy L…

My daughter-in-law posted this on Facebook:

It’s the eve of the 1-year anniversary of Oliver’s diagnosis. Before we had a name for what Oliver was experiencing, we lived in a state of anguish and confusion.

Simply having one parent take two kids around the block proved too challenging most days. I remember telling a co-worker I couldn’t take both kids to the zoo by myself, and he said “What? You gotta work on that.” He didn’t mean anything by it, neither did loved ones saying we disciplined too much, too little, not the right way, or telling me that trick that worked that one time with Oliver.

I remember going to a kid’s birthday party with Oliver. When the kids went upstairs to play, I panicked having Oliver be out of my site in case he had a meltdown and hit another kid or destroyed a kid’s toys. I felt weird, though, inviting myself upstairs in their house. I stood awkwardly at the bottom of the stairs. And when he did have his impulsive meltdowns, I always quickly scooped him up and tried to get him away from where ever we were. I could often see the parent’s face saying, “What happened?” I couldn’t explain it. I also didn’t know the extent that my child was so much different from other kids. At that same birthday party, when I went upstairs, with inklings of Oliver starting to escalate, my first reaction when I saw the kid’s bedroom was amazement—there were toys?! How does the child not throw/break/eat them?! There was a GLASS vase?! GLASS?! GLASS?! That wouldn’t last 5 minutes in Oliver’s room…

And school, Brian always dreaded pick-up, as there were always the required incident reports he had to sign. Sometimes multiple in a day. I remember one time in particular, I was talking to the teacher as I dropped Oliver off, and he went right over and dumped a box of felt toys on an unassuming little girl playing by herself. His school was endlessly patient and loving, but I didn’t have any fixes for the problem. I felt like such a failure.

With the vast network of Nationwide Children’s, Brian and I attended regular behavioral therapy sessions, then moved to Mental Health services. I did an online Positive Parenting course; I plastered the walls with these visual charts to help Oliver identify his feelings and choose an action item to help him feel better. We did time out, we did time in, we did breathing. Shortly before diagnosis, I holed up one weekend with an armload of behavior books from the library. That weekend, I self-diagnosed Oliver with Oppositional Defiant Disorder and wallowed thinking how he could be so train his 4 years on Earth. I uttered more times than I can count, “What are we doing wrong? How are we such parenting failures?”

Yes, one year tomorrow, the confusion was replaced by grief. Deep, agonizing grief. However, this grief came with a community. We belonged. The confusion kept us in a state of “What are we doing wrong?”. The grief gave us names and faces of families who were celebrating the good moments, navigating the murky days, fighting with every fiber of their being for a cure, and selflessly sharing their experience to help others navigate this journey,