A Child With Severe Autism, Epilepsy, & OCD Sculpted Her Own New World Filled With Love;
When I first encountered Anne Mari, Genevieve’s mom, it was by mere chance. In preparation of a long trip to see Compassion patients using cannabis oil the following morning, a cell notification grabbed my attention. Both phones normally have sound turned off -directing a Compassion Alliance providing and re-gifting CBD/Cannabis Oil means both of those phones are continually busy, to this day I still don’t know why I had sound on that night. I peered at the message: “I’m desperately in need of help for my 13-year-old daughter. A friend gave me some CBD and I don’t know how to use it. She has severe Autism and seizes most of the day. Now she can’t go to school anymore without UCLA clearance.” How could I not respond, after all I saw it come through. Little did we know Genbug was about to create the family she always wanted. Our fate was ahead of us as our lives were about to beautifully unite.
When you spend a few decades representing kids in special education administrative law issues, you become accustomed to getting urgent messages. In the world of Medicinal Cannabis, those messages strike me quite a different way as I know that many times it’s life or death. 50,000 people per year die to seizures in the U.S. alone. That may sound dramatic, but it’s a fact. Simply put, not all patients live to tell stories of success. Genevieve’s is not only one of success, but one of love. With Severe Autism, Epilepsy, and ODC, her life had became extremely sheltered. It created a world in which she could be her own worst enemy to her skin. Excessive ‘digging’ requires her to wear gloves day and night. Before Cannabis Oil she held her iPad as she gazed. Didn’t walk through the house well and was seizing over 25 times daily with deadly grand mal seizures. Definitely this created a life for her mom and sisters that surrounded Gens needs, it had to. Due to the severity of her diagnosis everyone had to give up a little to make sure she got the most. Add to that a tragedy – a decade ago her father passed. Nobody knew that Genevieve, in her own world, wanted Daddy.
From the moment I met Anne Mari and Genevieve there was a feeling of urgency to their situation like one I’ve never felt before. With so many children involved in a compassion program it was at times difficult to keep up back then. But Genbug had an advantage as her mom had started dating. After a few months of this I got a text from Anne Mari: “She’s asking for you, we (older sister Fatima and her) clearly hear her saying ‘Daddy’ as she points to your photo”. And then I heard it myself and my heart melted. Genevieve, without a doubt had plans. The next time I saw her she was watching a Simpsons video on her iPad and pointed to Homer, the Dad. Then she pointed at me “Daddy”. Wow, who would have guessed just a year and a half later we would be a happy family – all created by her! One day, during a trip that including stopping at Anne Mari’s and Genevieve’s, I had an odd feeling that I belonged where I was. Personally it sort of made me freak out as I’ve traveled around for years and being stabilized in a home with my own family didn’t seem like a reality.
Back to how we met! I responded the night Anne Mari texted and found she was located right on the way to where I was headed the next day. When I got to her home, I knocked on the door and the response was frantic – Genevieve was on the floor seizing. She went into what is called status epilepticus or back to back grand mal seizures. Beyond dangerous – this is how life is lost to Epilepsy. Quickly she was administered Cannabis Oil. The CBD that mom had been strong vape cartridge oil was too high in CBD for easy dosing for a new patient and frankly, wasn’t my preference for the situation. I had my own and used it. Consequences ran through my head but not about using my oil for the child at all. Having Epilepsy myself I’m all too aware of the damage seizures cause – and with kids like her it furthers any developmental delay to have continued seizures.
Quickly the seizures slowed and we started going over her history. As usual a plethora of medication was prescribed to her, some of them for side effects from medication itself. Pro convulsive medications are often given to children with Autism for behavior before a doctor checks for Epilepsy. Since 1/3rd of children with Autism will have Epilepsy that’s not the wisest move in my personal opinion, of course I can’t give medical advice. Without a doubt Genevieve was on a cocktail of medication that would cause seizures and seizure medication that she was allergic to. One medication caused her to get overwhelmingly energetic and the next would put her into a daze. None of it made sense and thankfully her doctor agreed to make a big change the next day. I stayed the night in town so I could come back and see her the next day. Mom Anne Mari told me on that 2nd day, “I felt like I lost my daughter, like she had been kidnapped” Anne Mari told me at first “Days of seizing turned to weeks than months. She did well for a few years and then medications were changed again.” I explained my own battle against Severe Epilepsy and more using Cannabis oil with Anne Mari as she brought Genevieve out to see me, now using her iPad and telling me “I feel happy” on it. As she made her way back to her room without wobbling this time as I saw her do the day before, I heard a humming sound. As I looked to Anne Mari it seemed as if a river of tears fell “That’s her happy sound, I haven’t heard that in so long.”
After the positive reaction to Cannabis Oil in stopping her seizure and literally stabilizing Gen overnight, Anne Mari then asked me to represent her to get her back in school. Together we worked quickly to get the doctors to see how fast CBD and Cannabis Oil worked. It was literally only 48 hours and she was back! We continued to work together and yet another LinkedIn Pulse article was written about how Genevieve was quickly recovering from Severe Epilepsy and was suddenly making leaps and bounds towards socializing and trying to talk. Her initial recovery was such an intense one that doctors were amazed, even a neurologist who wasn’t on board at all in the beginning was forced to change his mind. “What has she been taking, have the medications been working” He asked mom. “No, she’s no longer taking two of them and the dose on the 3rd has been cut by 75%, only one Rx medication stayed the same” was the response to him. What can a doctor say when the medication he has prescribed caused more problems than it helped and Cannabis along with CBD oils have reversed those problems.
When she started talking everyone was floored! At first it seemed as if she was just forming words by making sounds. I remember the excited text Anne Mari sent me right after she started using CBD and other oils, “She said ‘Momma’, I haven’t heard that in years.” The oils freed her from a world that seemed to be like a skipping record. Genevieve didn’t do much, when she did she’d just repeat the action or behavior again. She couldn’t walk too well as her gait was so poor. She’d fall over trying to make it out of her room. All of that changed thanks to the Cannabis plant. Even the “Vaxxed” team that interviews parents of children like Genevieve who have Severe Autism occur until after multiple vaccinations noticed the difference in her. They’d seen her once before the photo below was taken. By far nobody had seen that type of freedom within Genevieve. Neither of us dwell on the vaccine issue as both my son Michael II and Genevieve had this type of reaction. We’re not into the huge controversy around it but do believe people should be aware of the dangers of multiple vaccinations in one day, and mostly – aware that kids and adults can find freedom in Cannabis! Why should we think of what’s been lost when the photo below so clearly shows the freedom that Genbug has gained!
As time progressed, all of us became closer and closer. As the world of compassion provision started closing quickly with new California laws, the more time we spent together. We had slowly became a family unit and it seemed as if the time was right – no more non stop traveling around on Amtrak and Greyhound (With epilepsy you can’t drive – even with Cannabis stopping the seizures) living out of a suitcase. With how I felt inside about all 4 of the girls, there was only one real answer to all of this – get married. It seemed as if I could hear the world applaud as Anne Mari and I got engaged! We haven’t shared our story on the network media, we both felt that we needed to keep an element of privacy but that didn’t happen as we shared quite a bit with millions across social media. Lately we both feel as if the world needs to know how well Cannabis works and how it can change and save lives – especially how it both saved and changed mine by giving me not just the gift of life but the gift of a very loving family. Anne Mari, Fatima, Genevieve, and Sydney quickly became the 4 most important girls in my life.
year and a half later we enjoy life as a family. Together we visit with others that are intrigued by how much progress Genevieve has made. From school staff to the state program that runs her behavioral therapy – everyone is amazed. She walks around talking it up – from telling us of her colors to her continual request for ‘Daddy’ which really makes me smile! “It’s like I don’t exist anymore” Anne Mari will joke! So many conversations occur because of the remarkable progress she’s made.It’s rubbed off on so many people it’s hard to count in person alone – as far as the world of social media I believe Genevieve has changed the lives of millions already. So many parents will send messages asking questions. These are people I’ve known for years to be extremely conservative. Some that actually blocked me online for continually posting about Medicinal Cannabis undid that deed only so they could pick my brain about how they or their child could benefit from the amazing plant.
Looking back at the beginning when she couldn’t walk through the house without seizing, wasn’t talking, and wasn’t even using her iPad? It’s just incredible to see the ongoing progress everyday. She loves the carousel so we used to go as often as possible. It’s now closed down and the entire carousel has been dismantled and moved to a museum. We don’t have the heart to bring her there and show her as she watches it on her iPad and in her own world.. that carousel still exists. The nearest one is hours away and neither of us can drive. We’ll have to find something new for her although she’s been going there for over 5 years. At some point she’ll see it’s no longer there but for now we’ll try to replace it with something. If you have any ideas please enquire as I’m very open to all suggestions. Someone suggested we get a horse but we’re not zoned for an animal like that and it would be a bit of work!
Cannabis has done so much for me personally and it’s a never-ending story in regards to the number of people who benefit from the awesome plant and products people make with it. But I never thought that it would bring me love. I never in my wildest dreams imagined that Cannabis would make me a Daddy again. I’ve never had love like I do with Anne Mari. We are a team working together to take care of Genbug the very best way we can. Of course Cannabis makes her life so much easier but she still faces an uphill climb to attempt to gain some of the abilities she lost over the years. Everything from manners to potty training has to occur. Potty training? At age 14 this is not something you expect to tackle with the severely autistic. Generally, at this age maladaptive behaviors are set in stone. Teaching new skills becomes way harder after the pubescent years. To have a child start talking when non verbal? Almost unheard of – which tells us just about anything is possible for her. How exciting! Bugbug as I call her had a plan from the beginning. She wanted daddy and when she found me I don’t think she had much of a plant to let go. From that moment I read that she was asking for me as Daddy my heart melted. I’m head over heels in love with Anne Mari so that worked out well!
Even with Cannabis on board she’s a bundle of joy that does come with a huge obligation to care for her. We both handle that with a smile and laugh. Genevieve loves to laugh at the video’s she’ll watch. Over and over she’ll laugh with me as I mock the Simpson’s convenience store owner episodes “Don’t you kids take anything! I’m watching you.. I’ve got eyes in the back of my head.” And, she’ll point to behind her ear saying ‘Eyyyyyyye”! The whole family enjoys Genbug like never before. She engages in play with her little sister who she once would ignore or avoid. Now its coloring together, watching TV and so much more. She loves to go for car rides. Whether it’s Nana coming over or her big sisters boyfriend she calls Buddy, she’ll do just about anything to sit passenger and laugh and smile as she looks out the window. Cannabis has truly renewed not only Genevieve’s life, but her whole family’s!
We spend as much time as we can as a family. Genevieve and her older sister have a very unique bond. Fatima recently gave us the news that she’s expecting a lil one of her own. Soon it will be Auntie Genevieve and Sydney, Gramma Anne Mari & Grampa Mike – we can’t wait! Daily I have to thank Anne Mari for allowing me to be part of her awesome little family. It’s a blessing every single day. We both thank Cannabis, as without it this love story never would have happened. What’s even more intense is to think that a non verbal child that was seizing most of the day played the pivotal role in the creation of this family unit. She’s so full of love and life and spreads it to all of us, Genbug is our ‘reason’.
Now we go to work. After reading this many think “What’s next”. Well, quite a bit. Now that we’ve got the developmental delay moving into ‘developing’ instead – it’s time to get to work. Everyone from school staff to her home program has to step it up and work on her speech. She loves her therapist at home. Due to privacy issues I can’t divulge name but can say they are the best of friends. I think that’s important. As her therapist works on forming new positive behaviors along with new words as they emerge – it’s beautiful to see the bond they have grown.
Without a doubt my 14-year-old daughter has a future now, thanks to Cannabis. And a Daddy too!
It’s been a long journey since Anne Mari and I met, and we’ve learned so much and are thankful for all of it. Together we work as a team, a family, to provide the very best for the girls. As far as the cannabis scene goes, the focus is on how the cannabinoids work, patient education, and to further the ability for patients like Genevieve to have doctors that are educated in how our bodies take in the plant or exogenous material in order for our Endocannabinoid System to work well and keep us healthy.
Thank you for reading our story!
Source: Mikes medicine
Mike Robinson, Medicinal Cannabis Patient – Founder, Global Cannabinoid Research Center. Former Director of Communications, The American Academy of Cannabinoid Medicine
