Autism continues to be on a “diagnosis rise” as the Center for Disease Control and Prevention estimates it affects 1 in 59 children across the United States. Many of you who have been loyal readers (thank you) of my blog know of our life as a family with a loved one named Richie who has autism. Our family has recently made the decision to treat Richie’s symptoms with medical cannabis and we want to take you along with us on this journey. In this blog series, I will share an overview of how autism impacts Richie's life and our family. This series will chronicle our experience of the application and treatment process. We hope to achieve the same life-changing results reported by other families of loved ones with autism after using medical cannabis. It's also our wish to raise awareness of how medical cannabis can be a holistic and alternative treatment option for families like ours to consider.
Parents of children with autism have unique challenges. I write about this in my post, “Understanding the Grief Cycle of an Autism Parent.” Autism didn’t earn the puzzle piece symbol without merit. I continue to use the strategies and techniques I learned using positive behavior support. However, it’s not easy implementing a behavior plan when the moods, anxiety or panic attacks of your loved one grow increasingly difficult to predict and understand. Especially with our son Richie, who has gotten older and stronger. The situation is even harder when there is little or no support. I know I don’t have to mention to fellow parents, yet again, how daunting and exhausting it is for us to continually have to do the research, find the right doctors and therapists to work with our family, chase services, fight for services being taken away, etc., etc., etc. It is both isolating and frustrating. Dealing with Richie’s aggressive and self-injurious behavior as it increases in intensity, frequency and duration has caused me to experience bouts of depression and crying spells, not to mention how all of this has impacted the dynamics of our day-to-day lives as a family. It is a daily struggle to maintain the patience needed for modifying and improving my son Richie’s challenging behavior.
In this picture, our daily reading and spelling lesson was cut short due to self-injurious (banging his head against the wall) and aggressive behavior towards me. Richie has needed to wear a helmet when he is in crisis mode. Thankfully, recent tests have shown no brain or head trauma, but this is always a serious concern for us.
We already know reacting negatively to our child’s behavior doesn’t work. Yelling at Richie doesn’t work. Spanking him is even less effective. These acts will only fuel the cycle of aggression. I have behavior data sheets that recently recorded one incident of Richie slapping himself on the face over 140 times in fifteen minutes. I’ve helplessly watched my son slap himself on his face, neck, head, chest and stomach repeatedly and with great force for hours - nothing I try or do can comfort him. I have been at the receiving end of my son slapping, punching, pushing, and head-butting. It’s not easy to be patient and strong while you’re crying in-between blows from your two-hundred-plus pound 16 year-old son who towers over you. As I write this now, the song “In My Blood” by Shawn Mendes plays in my head. It resonates with me during these cheerless times. Parents of children with autism experience days with extreme uncertainty of what to expect from our children. These days I never know how to feel or how my day or night is going to go until I see how well Richie is feeling. This reads pretty bleak, I know. Still, in my sadness, I have to mention that despite my present feelings of frustration and low spirits, it wasn't always like this. There were times when we got to see Richie go about his day happily, learning new things or surprising us with things he already knows for long stretches of great months, weeks, days or just moments. And there are times when our family has to survive those long stretches of months, weeks, days and moments that truly tests the strength of our patience, physical abilities, and love.
There’s More to Richie than Autism and Challenging Behavior
It's important to note that my accounts of Richie's behavior and struggle with self control is not a fair representation of who he really is. There’s so much more to him than just his challenging behavior.
I wonder if Richie experiences most of his days living in extreme loneliness. I know that most times he is grossly misunderstood. He lives each day going through constant anxiety due to not knowing what to expect from people and not being able to express his thoughts, frustrations, fear, pain, and needs. I have seen how amazing my son can be. I have watched him repeatedly stun us with what he knows and can do. Richie is intelligent, funny, and loving. All we need is to give him the opportunity to live as any other teenager would. I know we are not alone. I know there are other warrior parents and self-advocates going through the same ordeal. I’m reminded of what a dear friend told me once. Jen said, "You’re only as happy as your happiest child.” And Richie has happy moments. He deserves more of them. He is entitled to live a life of happiness and peace. I truly believe Richie is living every moment in a state of “fight or flight” anxiety (in his case it’s “fight”).
We need something that will help ease the anxiety, pain, anguish, and whatever else is causing Richie to become this person we all know he doesn’t want to be.
We need something that will help ease the anxiety, pain, anguish, and whatever else is causing Richie to become this person we all know he doesn’t want to be.
We Turned to Medical Cannabis
There are many medications prescribed to children with autism as early as three years old. Ever since Richie was about three years old, doctors have wanted to prescribe Paxil, Risperdol, Abilify, Zoloft, or Prozac for Richie. I was always concerned about the side effects these drugs would cause, but back then I was more worried about the fact that no doctor could provide any information on the long-term effects these drugs would have on my child’s development. Since Richie's behavior back then was manageable with behavior plans we opted against these medications. It wasn't until his teen years that his behavior became less manageable over time.
While many parents agree that avoiding medication is the best idea, many of us are left with few therapeutic options that are practical and affordable. This leads us to requiring the assistance and expertise of a good doctor for dealing with our kid's mood swings, compulsive behavior, obsessive thoughts, self-injurious, aggressive and other challenging behavior that children and adults with autism may exhibit. Trying to find the right combination of medication and dosage can sometimes take months and several different trials. Please note that I am not anti-medication. I respect the fact that some medicines can relieve, heal, and improve quality of life for many people. However, I would rather avoid putting Richie through all those changes and possible symptoms that I know he won’t be able to express to us effectively (Richie is non-speaking). It would be nearly impossible for us to distinguish between behaviors resulting from symptoms of autism and symptoms of medications. It's because of these reasons I wanted to try more holistic approaches first. We’ve used melatonin for sleep, but this proved to be inconsistent as we still experienced many nights filled with pacing, behavior episodes, and Richie staying up all night. We use GABA, a neurotransmitter used for calming and relaxing. But it isn't enough to help ease the intense levels of anxiety and panic attacks Richie experiences. We needed something stronger, more effective, and safe. After much research and having had the opportunity to interview amazing people like Jen Mulry (fellow parent of a child with autism) and Dr. David Berger (a board certified pediatrician with an impeccable reputation in Holistic Pediatric and Primary care) for the blog I wrote, “Tampa Bay Families Turn to Medical Marijuana for Effective and Life Changing Results,” I knew I had to consider medicinal cannabis as an option for helping Richie.
Stay tuned for our next series segment, “Finding the Right Doctor with the Right Approach.”
Although we received services as part of our collaboration with Wholistic Releaf for raising awareness on treating autism with medical cannabis, all opinions expressed are my own.
Although we received services as part of our collaboration with Wholistic Releaf for raising awareness on treating autism with medical cannabis, all opinions expressed are my own.
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