Global Healthcare Conversations with Mieko Perez ft. Janie & Gavin

My oldest son, Gavin, was diagnosed with autism in 2010 at the age of 5 and accepted into the Sussex Consortium for their year-round Autism program. It was a hard diagnosis for us to face even though my husband is a Special Education teacher and works with autistic children on a regular basis.

Gavin was born a twin with his sister, Rylie, at 29 weeks gestation. I remember the first time I was allowed to hold him he cuddled up under my neck. My first thought was “Oh, wow! I’ve got a little cuddle bug!” I called him my Bugaboo. He met all of his milestones albeit a bit delayed due to his early birth.

There was still something “off” though. He seemed to have been born with OCD. His pediatrician and I would discuss his “quirkiness” when he was very little but as time went on, we both knew we needed to get him evaluated for ASD. He would fixate on broken or uneven floor tiles and physically fight me if I tried to move him.

Instead of clothes, his dresser drawers were full of rocks, sticks, pieces of electronics he took apart, old erasers, and pieces of folded papers that he would stare at. He never once played with toys. He was combative, aggressive, and controlling with others, especially with Rylie.

He could not handle changes and had to have strict routine. He was developing certain behaviors such as smelling and tasting nonfood items, for instance ants, plants, feet if he could get to them under a table, soap, etc. The communication coming out was perseveration and how he was receiving communication was extremely pragmatic.

Communication, mutism, and lack of being able to console or touch him was our biggest concern. He was disappearing into a different world each day. We saw him mirror others around him so we decided to integrate him into regular classrooms with a therapist by his side and private therapy during the summers.

He was ahead for his age on an intellectual scale but emotionally, socially, and behaviorally things were difficult for him. We saw slivers of empathy come through and this made us hopeful. The hardest for us was the social impact we saw playing out for him. We could see that he was figuring out that his brain worked differently than his peers.

He wanted to be accepted by his peers but was not. Sports did not work out in his favor with his IBS, awkward gait, and severe social anxiety. We began making plans to remodel our downstairs into a suite for him as he got older, thinking long-term.

He also wanted and needed his own space to retreat and calm down. His social anxiety, even with family, was apparent. What would his future look like? Were we doing the right things? Diets, medicines, therapy…I know every parent question themselves if they have done enough. It’s a hard thing to wonder. You literally tear yourself up over this.

How our son’s introduction to cannabis was a bit of an accident. His twin sister, Rylie, was taking cannabis capsules for bone tumors she was diagnosed with in 2013. I would place them on the kitchen counter before school for her. I assumed she took her capsule one morning.

If you recall, Gavin would “taste things” that he liked the smell of. Later that day his classroom therapist contacted me and said “Gavin answered very appropriately today in class and participated. He even raised his hand! It is so unlike him. Has he started on any new medications?”

I was SHOCKED. I was not sure what the change was. When I picked up the twins from school Rylie complained that she didn’t have her capsule of cannabis oil that morning. I looked everywhere for it and realized that Gavin had eaten it. The wheels started turning in my mind!

I had read that there was a possibility cannabis could help ASD but I wasn’t sure what component would help. I dove into researching every study I could find. It was the weekend so I gave him a capsule the same time I gave his sister one. He was so much happier and calmer around the house.

For once he did not perseverate on things so much. This was the start of us working with using cannabis oils for him and figuring out which profiles best suited his needs.

One year later he was removed from the Consortium’s Autism Program. His teacher, principal, father, and I had seen great gains. We had to fight for his removal but we felt that we had seen enough growth in him and that he needed to see if he could manage with regular peers.

I was told by the autism director that I “would need to face it that your son is autistic and always will be” and that we were “making a big mistake.” Thank goodness I had his principal and teacher there with me because I felt like a horrible mom in that moment to take away his classroom therapist.

My mom gut felt that my son needed a chance to see if he could flourish on his own with us on the side lines helping, not actually holding on to him. Flourish he certainly did! For his future grades we placed him with dual certified teachers so that if he needed to go back with in-school services from the Consortium he could. His medical team supports us and he has access to therapy outside of school now.

There is no perfect plan. There are still bumps in the road. As my son grows and changes his regimen does too. We include him and his doctor in making changes to his cannabis medical needs. When he was between the ages of 11-12 years old, we found that we needed to change his regimen.

He was experiencing a very deep depression and his isolation worsened which is hard to imagine. Therapy increased and we made adjustments until we found what worked. These adjustments even helped his gait when he ran, he didn’t think about every muscle moving.

That August, he decided to join the football team which blew everyone’s mind! He didn’t even know any football rules but we were so excited! Every single game we had teachers and family crying over seeing him out there. He quickly rose to one of the best players on the team.

My son is now a freshman in high school and is in the Honors Program receiving great grades thus far. He plays football and recently began to lifts weights. He helps us at our hemp farm in the summers and loves to work with plants. When I look at my son, I could not be prouder of him.

He is not cured. There is NO CURE for ASD. He still suffers from all of the same symptoms mentioned above but to a much lesser degree. He is learning how to live in this world that thinks differently than him.

His sister is one of his biggest champions and I am proud of how they have grown close after all that they have been through together. I’ve learned that we have to be thankful for the gains we have, continue growing, learning, and lifting other families up who are walking in our footsteps.

Sometimes I feel like there is a fine line between a lack of education for medical professionals and healthcare providers and willful ignorance. I have experienced both on several occasions.

While petitioning to have Pediatric Autism added to our state's qualifying conditions was one of these many times. A petition is supposed to be reviewed and voted on by our Medical Marijuana Committee yet it ended up in the hands of AI DuPont for Children's Hospital.

Their suggestion was for the state to change it to Pediatric Autism with Aggression. Why? So, the “floodgate” of ASD families seeking help through cannabis would not be opened. I was able to take my son to the committee hearing with other moms’ letters and fought back on this change.

Promising them that if they passed it as autism with 'aggression' then there would be several more petitions for autism with comorbidities attached. They decided to passed it as we needed it and as the research supports it. This attempt for a medical team to say it only helps autism with aggression is willful ignorance in my opinion.

As far as lack of education, it is rare to meet a medical professional who has: taken classes on cannabis, their interactions with other medications, how terpenes can play a role and so on.

In one of my earliest conversations with our “medical cannabis friendly” physician I was discussing with him the lab reports of what was working for my child and what hadn’t. I showed him the difference in terpenes to lead me to believe why one was working better.

He admitted to me that he had no idea what I was talking about. He was open about not knowing which made me like him more but it also helped me understand that all states with medical programs should require a certain number of CME courses every year for medical personnel whether they will be involved in recommending medical cannabis or not.

When it comes to ASD there has been research to steer us toward the right direction but I would like to see research on cannabinoids other than CBD.

I would like to see research on THCV, THCA, CBC, CBG and CBDV and how they play a role. We know that terpenes play a vital role but also know that some terpenes seem to exasperate certain conditions or calm them. This would be such an amazing component for parents to thoroughly understand and be able to use as a tool in many aspects.

Speaking on CBD research, we know many families who have rushed to purchase CBD hoping it would help and then their child became more aggressive or it stimulated them even more.

It is very important to understand what profile of CBD was used in the research and what the dosing was to the patients in the study before you take someone’s word on it who sells CBD or try to guess. Keep your child’s best interest in mind…treat medical cannabis like you would any other pharmaceutical when administering it.

My son’s story shares that there is hope. It may sometimes feel like you are at a standstill or hitting bumps in the road. We always kept putting one foot in front of the other because the goal was our child being able to live in this world and comfortably be himself.

Gavin prepared us for a lot of things in life. I say this because we’ve learned so much from him. I would give anything for him to tell me he loves me or to give me a side hug, even a bump but now seeing him smile and laugh is enough to make my heart nearly explode because we’ve come so far.

I’ve learned that it’s the little things that show love and trust. When we look back at the videos of him as a little boy…I cry. I cannot believe where he is today. When he sees a teacher or his old pediatrician that has not seen him for years…they cannot get over him.

Most of all Gavin has taught us how to help his youngest brother, Korban, who came in 2012. I’ve learned how different the spectrum can present itself in each kid. Korban is super talkative, touchy, and affectionate unlike Gavin. They both are so much more amazing than anything in this world.

I hope that this blog helps parents know that even when you are second guessing yourself, know that you are doing your best. Sometimes you feel like results are taking a long time but be patient…Sometimes you realize how far things have come suddenly years later when you see your child doing something and it hits you like a wave that this would not have been possible years ago. Give yourself and your child love for this moment and growth.

Guidance online can be extremely questionable. I always tell parents to check their source very well. Find out what their background is in what they are advising you on. If it’s an alternative medicine, such as cannabis, then do they have any certifications or training in this type of medicine?

Are they aware of potential side effects? Do they have experience with autism directly, meaning do they live with autism in their household or are they a medically trained or have a licensure in autism? Do they know the legalities in your state and federally for the age of your child?

There are many public and private groups online where people offer advice. Some may be reasonable sounding advice but much of it is not backed by research, facts, nor the law. It is backed by personal opinion. I have always been a parent who does not mix personal opinion with my child’s health. It is too risky for many reasons.

As nice as people and companies may seem they will try to give/sell and advise you down many crooked paths making your road to success take much longer. Why do they do this? Most of the time it just because they want to feel important, sometimes they actually think they know, usually they want to sell you something that is subpar and will not work or they need to get rid of. You have to be extremely careful what you ask, share, and advise online.

• President of Rylie's Sunshine
• Vice President of Rylie's Smile Foundation
  

Janie was introduced into the cannabis space in 2013 when her daughter, Rylie, was in need of cannabis therapy for bone tumors. Janie soon realized the potential benefits for children on the Autism Spectrum shortly thereafter with her son, Gavin.

Janie is certified in Cannabis Education, Cannabis for PTSD, Fundamentals of Psychedelic Medicine, Cannabis for Pain, FDA Approved Cannabis Medicines, GMP Food Safety and Handling and currently still continuing her education at Cornell in the Agriculture and Life Sciences Program.

Janie as well as her young daughter, Rylie, are international speakers dedicated to creating safe and affordable cannabis oils for kids living with debilitating illnesses.

In January of 2015, Rylie’s Smile Foundation was formed. The 501(c)(3) provides cannabis education and advocates for more treatment options for sick children all while supporting the research of less toxic therapies on a global scale. Since its formation, the organization has been responsible for the passing of four current laws and is actively working on two more that have greatly improved safe access to pediatrics.

Rylie Smile Foundation’s non-profit work led to the establishment of Rylie’s Sunshine in July of 2017. Rylie’s Sunshine cultivates, harvests, and produces full spectrum products that are reliable, safe, natural, and clinically tested. Rylie’s Sunshine partnered with Front Range BioSciences in order to ensure plant health is of the best quality for consumers and patients while advancing research for farmers in the MidAtlantic Region.

Janie and Rylie’s tireless work has been featured in several media outlets including Buzzfeed, Inside Edition, CBD Nation Documentary, Forbes, Dope Magazine, High Times, Scholastic Choices Magazine Women & Weed, LA Weekly, Beach Life, Delmarva Now, USA Today, NY Times, Delmarva Life, Hempster, PRN Newswire, Grass Roots Magazine, Israel 21C, Village Voice, Civilized, and Cannabis Business Times and many smaller newspapers around the globe.