- Become a Hope Grows Member
When I initially learned about Erica it was by a pharmacist at the dispensary. I’m a mom of two non-verbal boys who are both on the spectrum and was already on the hunt to find a low THC:CBD oil tincture. I began learning more through content on social media and was intrigued to say the least. Then, one afternoon, I was leaving the dispensary and Erica happened to be walking in. The pharmacist introduced us and admittedly, I was stoked! At the end of the conversation she invited me to the launch party for Hope 1 & 2 and there I spoke about how the use of legal medical marijuana has helped reduce problematic behaviors my sons suffered like self injurious behaviors and hyperactivity.
Clearly the universe wanted me to meet her. Erica is fiercely determined and her purpose stems from the fact that she is a mom to a son with autism. Education, research and advocacy is the core of Hope Grows and the organization has helped restore the future for my sons. And I mean that both figuratively and literally.
First I volunteered with Hope Grows and that led me to my current role as the Community Outreach Coordinator. For the first time, in half a decade, my life had a newfound purpose (other than being a mom of course). I’m able to continue my education on a subject that directly affects the quality of life for my children. Along the way, Erica has comfortably welcomed me into a network of caregivers and experts who are on the same journey as me. Hope Grows is a safe community built from pure love and it continues to flourish! It’s a privilege to have access to like minded, passionate people who just “get it.” And if they don’t, they will help find someone who will.
Reflecting back to Fragile X Syndrome (FXS), it is referred to as the only genetic link to autism. I unknowingly passed on this incurable complex condition resulting in a lifetime of behavior, intellectual and learning challenges. 1 in 4,000 males are affected and 1 in 8,000 females are affected. My sons were diagnosed in 2014 and now at 8 and 9 years old they continue to impress me, and make progress at their own pace.
Although they’re considered to be non-verbal, they do have brilliant receptive language, but struggle with expressive language. That means they understand everything that is spoken to them and can follow directions, but they may have difficulty with appropriate responses. By way of some sign that I taught to them when they were toddlers, they are able to communicate. In addition to the few words they can speak they also utilize a communication device. It takes a village to raise a child(ren) and I’m lucky they attend a private school devoted exclusively to the educational needs of children with autism.
Even though they have access to some excellent people and resources their anxiety still causes major aggression and that results in self injurious behaviors like head banging, hand biting, aggression towards others and unsettling outbursts.
Choosing whether or not my sons should become medical marijuana patients was not a difficult choice to make because they did not react well to prescription medication. Perhaps we’ll revisit that Avenue in the future, but for now this is what works. They’ve tried several cbd:thc oil tinctures throughout the duration of the year and so far the most successful rises from Hope. I’m happy to report there are no harmful side effects. I followed the dispensary pharmacists advice and went “slow and low.” Micro-dosing proved to be effective for my sons because the onset is subtle.
I did find it helpful during the trial and error periods to keep track of things such as the time of day I gave the tincture, changes in behavior good or bad, brief setting description, and any and all other pertinent information. It’s significant to understand the triggers of certain behaviors so the needs of the child(ren) are met accordingly.
Keep in mind that I’m a 36 year old divorcee who’s literally starting life over from scratch. And I’m doing it alone (my family lives out of state). Perhaps raising a child while being a single parent can be for another blog!
Until then……. Remember: “Better to fight and fall than to live without hope.”
Proud Cannamom to G and C
Advocate for FXS, Autism and legal medical marijuana