The Long Winter

On most nights before the boys go to sleep, we have been reading the Little House books for close to a year now. I love the stories of honesty and simplicity, of struggle and triumph, of bravery and tenacity. Here at the farm, we love tapping our maple trees, picking dandelions and Queen Anne’s lace for making jelly, gathering eggs, and harvesting what we have planted in our garden. We love exploring the forest and sitting by the fire when the moon is up with the stars in the sky, and the boys love when their musical daddy sings to them or plays music on pretty much any instrument that he comes across. We also love coming in to our warm house which is bursting with the conveniences of today, and where we don’t have to worry about a bear sneaking through a makeshift curtain to torment us (or worse) in our sleep while we wait for Dan to build a proper door.

We don’t have to go back to some of the hard things. We have come so very far.

Last year at this time, as the cold set in, we were planning for a wedding. Our visions were often blurred through the snowflakes, which seemed to come with more strength and fortitude than in other winters. As the seasons turned, the weather didn’t, until the rain replaced the snow and ice. We reluctantly imagined wedding guests wearing rubber boots and holding onto their hats and skirts during what we had hoped would be a midsummer night’s dream.

And it was, because despite the fierce winter, and the spring that really never came, the sun came out to shine brightly on that beautiful June day.

When I first visited the dispensary, preliminary medical cannabis card in shaking hand, I hadn’t considered that there would be so many options. This is so typical for me: I can’t see the forest for the trees. For so many years now, my focus has been on the addition of autism to the list of conditions treatable with medical cannabis, and the attainment of what we felt would be the key for our son, without understanding that there would be more decisions and adjustments to follow. There always are.

The snow was melting, but the ground was yet frozen.

During the past year, our son’s behaviors have become more manageable. We have still struggled, but there has been significantly less physical aggression and combative behavior, perhaps due to maturity, therapy, karma, or some combination therein. The little boys often tried to provoke him, to try to recreate the chaos that they knew so well. It was what they were used to. This, to me, was surprising and unsettling. He would react in harsh anger, fueling the reaction that the brothers sought.

I worried about letting them out of earshot for too long on the farm property, doing what most little boys want and need to do: run free and explore. What if I was unable to intervene in time, if they fought too hard and I couldn’t get to them?

He doesn’t like the taste of the edibles that I chose from the dispensary; I hadn’t expected that he would. He is, though, cooperating. That, in a sense, is our first victory. The strain that we got in pill form had a hyper-focusing effect, which led to arguing and, ultimately, aggression. Though this felt like something of a defeat, the nighttime strain had promoted peaceful, easy sleep. After a bit of experimenting with a hybrid strain, we have a self-declared calm boy who has had the best consecutive three days that I can remember.

I wasn’t expecting the snow in mid October, especially since I was still thawing from last winter. In some ways, it just seems like one arduous, multi season continuation of challenges. It’s beautiful, some days. And there are breaks from the cold, breaks to fuel the next part of the journey.

I wonder if Laura and Mary expected to move around so much during their times on the prairie. If they had known what was ahead, would they have put themselves into each moment, would they have noticed the layers of sunset and the secret bird nests? Perhaps that was what kept them going.

The littlest boy, in particular, has been relentless the past few days, trying hard to make his brother angry by throwing toys, turning off his video game, or sneaking his food. This hasn’t worked as well with the new sense of calm. For this, we are so grateful.

Already, the pumpkins and chrysanthemums are frozen hard into the window boxes, and I haven’t had the chance to cut back my hydrangeas. I may not get to them, but they are magical in their own way, standing resilient with wind-dried, straw-colored blooms.

The winter will turn in rhythm. Tomorrow’s hard things will be different from those of today. We can’t go back. We may not want to, but remembering will make us know just how far we have come.

I will be returning to the dispensary this week for more counsel (and hopefully a hybrid in pill form for our boy) but, clearly, we are closer.

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“These faces of dust and stone are, the dirt and bone of loss.”

–Ben Howard, “London”

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I share these things not to highlight my family’s personal struggle, but in hope that others can relate to parts of the journey, and that we can reach out in kindness and peace to one another. Please share with others, if you are so inclined.

XO

Still Brave: A Birthday Tribute

It’s the eve of your twelfth birthday. The picture in my head may have been a bit different from what I was expecting, but I should have known a long time ago to stop expecting, because there just doesn’t seem to be much sense in that.

I wish you hadn’t told me that you were starting to get a mustache, but I wish harder that I hadn’t looked, because I am not ready to see. I am not ready to see lots of things, but here I stand, knowing that in another birthday or two, I may actually have to buy you a razor.

On the basketball court, I watch as you run with your peers and keep pace with the coach’s demands. You dribble the ball through your legs, and you have a pretty slick left-handed lay-up.

You have come a long way. I wonder if I expected that. What I didn’t expect was the fallout behaviors of the younger children that would manifest as your own chaos was starting to fade. It has been hard around here lately. I know that your sadness looks like anger, your frustration looks like anger, and your anger looks like anger, but that you feel so very deeply and wish only to be heard and understood. I think that’s really all any of us wants.

Four years ago, we had hoped that autism would be added as a condition treatable with medical cannabis. After so many frustrating and sometimes risky medication trials, we thought that this might bring some peace and hope for your future, for our future.

It was recommended but not added, but we kept hoping. Help has come in different forms: home therapists, one medication that seems to have made some difference, your own strength, tenacity, and bravery, and a little dog named Spotty.

Now, the time has finally come. Autism was added as a condition this August. After updated tests to confirm the autism diagnosis, recommendations from the professionals, and some phone calls, we will be meeting with a patient representative at a dispensary this week.

I still think it’s going to help you, and I still think it’s going to help all of us. I just hope we are not too far gone by now.

There was sparring among brothers today; not just a little bickering, but the type where intervention is required. We made it to the end of another day, though, just like we always do.

You tidied up around the house and set the table for dinner after the emotions settled, a sort of peace offering, perhaps, but a welcome one.

You’re growing up. You are doing well at your school. You still love looking at the sunsets with me. You are looking forward to having your friends visit tomorrow. Twelve years have been a lifetime and the blink of an eye. I hope you feel loved, and I hope I have been good enough.

Happy Birthday, my dear boy.

Where We Are: My Medical Cannabis for Autism Update

“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!

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.

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.