Eight Days

“Is my suit ready for tomorrow?”

There was a sense of urgency tainted with a little hesitation that accompanied my son’s question.

It was late. I wasn’t planning to do any more laundry.

He had been thinking this through in his head, rehearsing how the mornings would unfold, likely since the day he learned of this camp.

“You’ll be at the camp all week, so you can wear something else for tomorrow, and I will have that one ready for Tuesday.” There was no lack of guilt in this offering, but I had just emptied his sister’s basket into the washer, and I was weary from the day.

“Okay”, he responded. That was it. No yelling, no throwing things, nothing said about how I was ruining his life. I wondered what he was really thinking.

He has come so far. We have come so far. Just once this past month have I had to restrain him physically. The ten-or-more hold days of the not too distant past now seem unfathomable.

How is it that we have made it to today? Here I sit, outside the high school gym where my eleven-year-old son is just one of the fifteen or so boys participating in a shooting drill at the summer basketball camp. No one looking in would have any idea that less than two years ago, we were not sure we would be able to keep him safely at home any longer.

I have not been quiet in my support of legalization of medical cannabis for autism. After some fierce efforts, things have been quiet for a time. Now, though, the word is that people with autism will indeed be able to legally use medical cannabis as a treatment option. For this, and for so many other things, I am grateful.

A creative, intuitive doctor and a team of in-home therapists have been instrumental in helping our son. He has become better equipped to deal with the small things that to him have been very big things.

There are cheers coming from the gym. The atmosphere is positive, and my son and his brother are very much part of this. When Ethan first asked about doing the camp, I wondered if it might be time. I wondered if it might be time to try something to feed his current passion, something which rather than setting him apart from his peers might actually make him feel like one of them. The high school staff has reached out to me tell me how happy they were to have our son at the camp, and to ask how they could help make him feel more comfortable. That, to me, is our first victory.

He loves basketball. He has been staying up late to watch the NBA finals and his Golden State heroes. Little does he know he is fast becoming one of mine.

This is only the first of eight days here at the high school. For today, though, my son has been part of the group, a member of the team.

I still had some kitchen chores to do last night before I went to bed, so I decided it wouldn’t take that much longer to run one more load of laundry, including Ethan’s favorite t-shirt and the leggings that he likes to wear under his shorts. I could do that for him, for his first day of camp, if that’s what he needed to feel okay. I did, and I just may do it again tonight, so his favorite outfit, and he, will be ready for tomorrow.

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Brave

 Ethan is brave every day.  Yesterday, I was brave for him.  I wanted to post the words that I shared with the medical advisory board which voted 8:2 in favor of accepting autism as a condition to recommend to be treated with medical cannabis.
“I am learning more on this parenting journey than I ever expected to learn.  Honestly, I really don’t want to learn all this stuff.  I don’t want to know the side effects of Risperdal or Zyprexa.  I don’t want to have a reason to know them.  I don’t want others to treat my sweet boy with any less dignity than he deserves.  The grip of autism is not selective.  This child is only trying to make sense of his world and his emotional kaleidoscope.  I want him to eat lemon knots; I want him to be able to walk across the train tracks without being gripped by fear; and I want him to enjoy the Christmas lights with the rest of us.  I want him to know that he is a treasure and a great blessing, every single day.

We know that people with autism are often in a state of sensory overload.  Experiences are more intense: louder, scarier, more painful…often intolerable.  I have seen anecdotal studies of children close in age to my son, with similar behaviors, who seemed to get better almost overnight when allowed the chance to have medical cannabis.

With Ethan, there are extraordinary swings of angst, fear, and aggression.  In the other direction, there are flashes of brilliance and uncanny cleverness to outsmart a university scholar on a good day.  The days where the brilliance outweighs the angst, those are the days we relish.  We adore him.  We are exhausted on all of the days, but he has brought to us intangible things that we did not even know we needed.

Ethan, at seven, has been through two psychiatric hospitalizations when the behaviors became too overwhelming.  His therapeutic day school has now called on a behavior analyst to help with his programming.  I learned yesterday at his IEP meeting that my son had more physical restraints during the last calendar year than anyone else at the school.

I’m sorry for everything.  I’m sorry for the railroad tracks, the thunder, the bees, the wind, and for all of the other things that invade your head and stir your fears.

We don’t want him to have to go back to where he is not understood, where nobody sits with him as he falls asleep, and where he is presented with trays of brown things with gravy.  We don’t want to go back to a place where the outcome will be no different than the last time.

Then the moments come, and there is nothing we can do.

My little boy, at seven, has been on at least fifteen different medications.  We have never been sure if any of the medications have had any positive effect, though the negative side effects have certainly presented themselves.  Many children in states with more sensible laws have recovered the ability to function in everyday life by using edible cannabis.  I will never give up trying to help my son.  I feel that it is our ethical responsibility to offer this same opportunity to children in Illinois: the chance at a childhood that is governed by states of calm and joy.

Please offer this chance to my son and to countless others with autism who may not have words to express but who feel so very deeply, every single day. ”

Thanks to yesterday’s vote, we are one step closer.  No matter your thoughts and feelings about this, I want our story to be about standing up for our children, and about coming together to make a difference.  Many thanks to Elliott, my bright star, for being the guiding force.