A New Journey – Learning, Love and Policy
Sadly just 10 days after our son’s story was published in the local Highlands Ranch Herald for making it four years and nine months seizure-free, Benjamin started having seizures again Thanksgiving night 2015 which was nine months after he was weaned from all pharmaceuticals.
Benjamin 14 years old began to have Tonic-Clonic type seizures every few days with some lasting up to four minutes in length; he had four of these within 14 days into December. It was advised by his neurologist at the Denver Children’s Hospital that we put him back on pharmaceuticals. After some research and a new article that expressed recent warnings from the FDA in regards to suicidal thoughts and actions as a side effect of 11 anti-epileptic drugs, three of which Benjamin had been on before and was being asked to take again, did not seem like an option any longer! So in mid-December I made the decision to start Benjamin on Charlotte’s Web Hemp Extract after contacting the Realm of Caring in Colorado Springs on how to purchase Charlotte’s Web, and help me with dosing so that we could keep Benjamin seizure-free once again in a natural way without side-effects!
Within a couple of days I shared the news of our new therapy change for Benjamin with his school nurse as I had for any other medication change over 10yrs since pre-school (I also included in the email, his teachers and principal). I knew we lived in Colorado and marijuana itself is legal and though I am giving my son hemp extract which is considered a dietary supplement that can be mailed to all 50 states; I did not think that we would have legal issues surrounding our choice for our son to have an alternative medicine.
To my surprise I received a call from Child Protective Services three days before Christmas asking me if I had a prescription to give my son Charlotte’s Web. In my inquiry to find out who reported us I would eventually be threatened with a caseworker if I did not comply with the child welfare administrators request for me to provide two doctors notes. I quickly realized that she was expecting me to have a registration card for my child taking a dietary supplement which she was requiring under article XVIII in section 14 of the Colorado Constitution as it applies to medical marijuana. I was able to point out to her that if she just read a little further in section 16 of the Colorado Constitution as it talks about hemp, it is exempt from being referred to as marijuana and therefore I was not required to provide a registration card to give my child a dietary supplement of hemp extract. This would later be confirmed through the Colorado Department of Public Health and Environment (CDPHE) who provide the registration cards to medical marijuana patients and they would also tell me that if our child is taking hemp we do not need a registration card! So after educating our local Department of Health and Human Services on the differences between hemp and what they consider to be a marijuana derivative she changed her tune and asked for a list of prescriptions that my son was taking and only then would she closed my case but not until after Christmas. She let us believe through the whole Christmas holiday weekend that we might be paid a visit. We feared that if the caseworker came to our house that we would have lost our son over a dietary supplement they knew nothing about, all in retaliation for asking questions.
By asking questions it would be revealed to us that we were reported for a “suspicion of abuse and neglect” because we told the school that we were giving our child Charlotte’s Web. We were not asking to give it to him on school grounds or asking a nurse to administer it, we were just merely stating that we were changing his therapy at home but they could watch for any changes at school since they were with him the majority of the day! We figured out it was the school nurse based upon what she said in the transcript read back to us, since CPS could not give us a name of who reported. It would be expressed to me that nurses are mandatory reporters in the community, in an effort to mitigate any wrong doing. However, I would discover the school district had actually recommended that all school nurse report ALL FAMILIES on a suspicion of abuse and neglect regardless of whether they thought parents like me were abusing or neglecting my child. The school district actually felt by having their nurses report families to CPS they were protecting themselves, whether a family was providing their child with what they consider a marijuana derivative including hemp.
Of course I had every right to report the school nurse to the Department of Regulatory Agency (DORA) for false reporting. In her report, the nurse stated that “the child is very safe and family very loving” which would be a contradiction to why she would report based upon a suspicion of abuse and neglect. She also added, she was only reporting us on a recommendation by her employer so that she would not lose her job. Since I have a history of working with nurses in my past position as an administrative assistant (in the healthcare field); I did not feel it was ethical for an employer to demand their nurses to report families like ours when they did not equip them with the educational tools to make the right decision, on cannabis or the laws surrounding it. I never reported the nurse. It has been very important for me to not only look out for my family, but also for those who are responsible for looking after my child. Part of my mission was to make sure the school district was not pinning nurses against families and vice versa or families would be hiding in the shadows due to a lack of trust!
Within the first couple of weeks into the New Year 2016 I would be introduced to Stacey Linn and hear her story with son Jack Splitt, a young man just a little older than Benjamin with cerebral palsy who was not allowed to have his medical marijuana patch on at school. Stacey Linn passed Jack’s Amendment in 2015, so school districts could start writing medical marijuana policies for their students and allow medical marijuana to be administered on school grounds in a discrete location. Unfortunately no school district wrote policy for medical marijuana because it was only recommended at that time.
Stacey Linn would accompany me to meetings at the school district where we asked questions why they would demand their school nurses to report families like us to Child Protective Services for giving our children alternative yet legal medicine. The school district felt it was a liability for their nurses and they were in fear of losing Federal funding if we brought cannabis on campus to give to our medically fragile children. I would eventually file a case with the ADA (Americans with Disabilities Act) manager at the school district since I found it discriminatory for nurses to reporting children to Child Protective Services when most of these children are medically fragile, are usually on an IEP (Individual Education Plan) and the school district gets Federal funding for these children. It was quickly realized that the school district like others in Colorado had not written a policy surrounding medical marijuana, cannabis, or hemp etc… My job turned to working with school board president Meghann Silverthorne and vice president Judith Reynolds to get a policy rolling in Douglas County, and I had their support right away! I attended every school board meeting since February to bring light and educate the other school board members what happened to us and how we would like to see a policy not only implemented here, but our nurses educated so what happened to us would never happen to another family!
Stacey Linn would eventually start working with Representative Jonathan Singer to bring forth HB16-1373 “Students Medical Marijuana Use At School” also known as “Jack’s Law” to legislators at the State Capitol, so that school districts in the entire state of Colorado would have to write medical marijuana policy! I and a lobbyist by the name of Cindy Sovine-Miller were brought into help with the grassroots efforts in spreading the word about this new bill along with many other parents who were fighting for this too! One day with Benjamin at the Capitol, we ran into our Conservative Senator in Douglas County, Chris Holbert. After hearing our story, offered to Co-sponsor HB16-1373 in the Senate especially for Benjamin. Since the bill mainly laid out plans for medical marijuana in regards to Article XVIII in section 14 of the Colorado Constitution it was not applicable that hemp in section 16 of the Colorado Constitution be brought into the bill since they are different. It was still up to me to make sure that when my school district was writing their policy that they differentiated hemp from marijuana, but the question remained if they would since a Colorado Springs school district D49 would be the first in the state to adopt a medical marijuana policy though they did not differentiate hemp as I suggested in a school board meeting they held in the spring.
After 91 of 100 legislators between the House and Senate voted YES on HB16-1373, on Monday, June 6th 2016 with Benjamin looking over Governor John Hickenlooper’s shoulder, he sealed the deal by signing HB16-1373 “Students Medical Marijuana Use At School” into Colorado law! We were a very proud family to be there at that moment in time, with Jack, Stacey, along with other families watching history being made! Benjamin and Jack would be given one of the pens the governor used to sign the bill with as well!
Our job was not done just yet, we are now in the implementation stage. We received word that the Douglas County School District board of directors will be presenting what we call, “Benjamin’s Policy” at the next school board meeting on Tuesday, July 19th 2016! Not only will the school district be taking into account Jack’s Law (we just passed regarding medical marijuana), they have also heard my request to differentiate hemp oil, cannabinoid products as well as add the following to protect the nurses and staff:
“District employees shall not be obligated under district policy for reporting suspected child abuse or neglect based solely on the parent or guardian administering medical marijuana, hemp oils or other cannabinoid products in compliance with this policy. This is not intended to alleviate any employee from his or her reporting obligations under applicable state law.”
Even though D49 was the first to vote on their Medical Marijuana policy, Douglas County is actually the first to write a comprehensive Cannabis policy that includes the Administration of Medical Marijuana, Hemp Oils and/or Cannabinoid Products as well as protecting their staff and end the criminalization of families trying to give their medically fragile children a better quality of life!!!
We are proud of our school district that heard our requests and wrote a policy that fits the need in our community, this way families who have been hiding it can come out of the shadows, and nurses do not have to fear losing their jobs when they know we are actually helping our sick kiddos!!! As of Saturday, July 16th 2016, Benjamin will be seven months seizure-free, but not only is he free from seizures again, this time his world has opened up more thanks to Charlotte’s Web Hemp Extract, his memory has improved to the point he can sing along to songs on the radio because he can remember the words. He was able to read short speeches before legislators this year, but he would have never been able to do that prior to Charlotte’s Web. He is communicating, learning and building things…without any adverse side-effects…life is good for Benjamin and it was worth the fight so others would not have to worry about what we went through!
When I think back to the mom I was 11yrs ago when Benjamin was first diagnosed with Epilepsy at 3yrs old. On how the pharmaceuticals scared me and changed my son in negative ways…I realized my fight this year was for the scared mom I was 11yrs ago. I wanted this alternative back then, but if I had to fight this fight for cannabis back then I would have not been strong enough to do what I did this year!!! It was worth it all; even for the parents who do not yet know they might need this same alternative one day, but will not have to fight for access in schools in Colorado!!!
Written by Amber Wann Permission is given to share all or parts of our story in a way that would benefit others!
We hope in 2019 we can raise enough funding to close the gap and no longer have to turn desperate families away. To give a grant to every person who applies, we need around $2,600,000.00. You read that right. 2.6 million dollars. Every dollar counts.
