“I had a great time. Can’t wait until next week.”
Well, that was a relief, because the faces he made during the hour-and-fifteen-minute basketball clinic had me believing otherwise.
We have come a long way, but we have so far yet to go. Four years ago on this day, I stepped out of character and shared testimony to a room full of people at the Holiday Inn in Countryside. I described, in two-and-a-half minutes, what it had been like to parent my son, and the frustrations and challenges that had led me to this place, on this day, pleading to have autism added to the list of conditions that could be legally treated with medical cannabis.
On this day, four years ago, autism was recommended but ultimately rejected by Illinois’ medical director. What followed was much campaigning seemingly to no avail, and a series of legal appeals that led nowhere but to disappointment.
Meanwhile, we struggled in the trenches through a few more hospitalizations, many medication changes, trials of alternative treatments, more physical holds, broken windows, damaged property, and defeated spirits.
We love our son. Thoughts of the future were overwhelming, as he continued to grow bigger and stronger, and the effects on everyone else were glaring.
Our psychiatrist recommended in-home applied behavior analysis (ABA) therapy; eighteen months later, the services began, with a provider working in our home six days a week. Our son continued to attend the therapeutic school where he had gone since the second month of kindergarten.
It seemed that he would struggle each spring and fall, but we would manage to come out on the other side. Very slowly, we had seen some of the aggression subside. And then, a transition of one of the workers would set the shaky ship off course yet again.
We have had some successful times, and some good family times, even in the community. We have also had to drag ourselves through the dark waters of fear just as we thought the light was coming.
Time marched on. Late this summer, as my mind had been full of many, many things, I received surprise word from an attorney’s office and also the patient advocate (connected to us by our older son) who had sat by my side in that auditorium four years ago on this day. There had been no fireworks, no great celebratory feasts of which I was made aware, but autism had indeed been approved as a condition treatable with medical cannabis. This seemed to be the culmination of a fight that I had all but walked away from, only to have it circle back, it seems, in God’s timing.
The angst has begun to rise once again. It seems the boys take cues from one another, modeling negative behaviors and forgetting to be kind. We seem to forget where we were. We need something, and maybe this is finally it.
I was excited to contact our psychiatrist, a doctor who had been supportive of our journey to try to help our boy with medical cannabis, and who we first traveled many miles to see, and who we now see by virtual office as she has since moved across the country.
We were all set, it seemed…until the need arose for standardized testing which resulted in an autism spectrum diagnosis. I have a cabinet of paperwork on this child, and many files hold hospital reports, office notes, and clinical diagnoses of, among many other things, pervasive developmental disorder and autism spectrum disorder. The elusive standardized test, though, was nowhere in that cabinet, because it had never been done.
Lots of bad thoughts ran around in my head. What if, when we were this close, we were actually in a place where it never could be? What if, after all of this, his autism diagnosis could not be “officially” confirmed? Did it matter?
We have been hoping and rallying for about five years now. We owed him the chance. Our kind lead behavior analyst recommended a psychologist that could do the requested test. We waited about two weeks, made the trip for the testing, and waited three arduous weeks more.
The report came, and I wondered what I had wondered about, when, of course, we had known all along.
It was good to see our doctor’s response when I forwarded the report: “Received, thank you…I will move forward with the application…”
So we wait, once again. And again, we will wait when the application has been submitted to the state. But like everything else, it’s going to be okay. In this very moment, we are okay.
We are back at basketball clinic again, and our boy is smiling and joking around with the other participants. He misses a free throw, and still he smiles.
It has, though, been a rough week at home, for not just this boy. My body is sore from a few too many physical holds of writhing boys. I am glad the sun came back out today, as that always beckons a sense of hope from the darkness.
I am hoping that the time, this time, finally, is near.
*Many thanks to EVERYONE who has helped and supported us as we have desperately tried to make our way!