Yesterday, Abe and I spent a great amount of time visiting with Tony Leys and Brian Powers of the Des Moines Register discussing why my son is unable to have his medical cannabis oil administered at school by a school nurse.
First and foremost, I want to say that our school has been INCREDIBLE. Despite the fact that they are unable to give my son the medicine he needs (at no fault of their own), they have gone above and beyond what I could have ever imagined to make sure that he is happy and as safe as possible at school.
Abram has TWO para professionals who work with him every single day and who communicate with me daily on how his day goes. He has an amazing bus driver whom he loves and who has made my life so much easier because he LOVES riding the bus to school. He has two teachers who care about his success as well as an occupational therapist and speech therapist who work hard with him to help him succeed. He is loved and welcomed there by his peers and often gets artwork sent home from his friends who love to draw him things. It makes my heart swell.
The school has also built a sensory room so that Abram can get breaks to go swing and calm down on a hard day and they have brought in a behavior team that is helping to pin-point what is causing his self-injurious behaviors and the trend line from that data is going the right way. We had a rough start but things are getting better for Abram and he isn't coming home with goose eggs and bruises like he has in the past.
To our school and all of the staff that makes my son's life easier - THANK YOU. You have no idea how important it is to me that my son goes to school and feels loved, welcome and taken care of.
When it comes to the administration of Abram's medical cannabis oil, the school was forced to deny our request due to the fact that the Iowa Department of Education is not allowing school nurses to administer or participate in the program. Due to the fact that state law is inconsistent with federal law, Abe's school would risk losing much needed federal funding if the school nurse were to possess let alone administer his medicine on school grounds.
Despite the fact that both the Iowa Department of Health AND Governor Reynold's office stating that IF a school nurse were to become a "caregiver" for Abram (like his immediate families are) they could "legally" administer the oil, our state's Department of Education forbids it do to the fact that medical cannabis is still a Schedule I Drug. Asking a school nurse to become a "caregiver" under the current law does not provide him or her any protection and could put the school at risk.
In addition, the Drug Free School Zone Act still plays a major part in this issue as well, making it illegal for me to have my son's medicine within 1,000 feet of school property. In my son's IEP, the school did say they would allow for me to remove him from school grounds to medicate him, however, with him needing structure and routine, I fear that IF I were to go and disrupt his school day every day at lunch-time that I may just ruin his entire day and throw off his routine entirely. Pulling a child with special needs from their day, putting them in their car seat and driving 1,000 feet away to give them medicine seems like a crazy thing to have to do when the State of Iowa has already admitted it is MEDICINE by finally allowing growth and distribution within our state lines.
Many people site the fact that Epidiolex is now FDA Approved. However it is only approved for Lennox-Gastaut Syndrome and Dravet Syndrome, so Abram doesn't even qualify for it. Not to mention, the price tag of that drug is $2,708 PER MONTH and we certainly could never afford that without insurance covering it. Not to mention, a good portion of it is ethanol, artificial flavoring and sucralose - a known seizure trigger.
The fault in this issue does not lie with the school - it lies with our Federal Government not taking the proper stance on medical cannabis. I don't understand how this can continue to be an issue. When you have a medically complex child, life is already difficult to navigate most of the time. So when you add in politics, lobbying and advocating for law change it can sometimes be too much to bear.
I just want my son to have the same rights as any other child in need of medication at school. I would love it if my Federal Legislators would take a stand and do the right thing for families like mine. I've been begging for help from my Federal Senators and Representative in Congress for years now. Things need to change at the Federal Level so that medically complex patients and families don't have to continue to suffer.
Click on the image below to read the Des Moines Register Article
I've never met another human more determined, hard-working and filled with love than my son.
They said he may never walk. They said we could do PT until we were blue in the face and it wouldn't make a difference. They said he had a "cognitive disconnect" and that he'd never understand that a picture represents an object.
Now he's riding an adaptive trike, walking up stairs alternating feet, going down them with assistance and he can jump. Now he's using sign language, picture exchange and using a communication device to tell us what he wants.
Never let anyone tell you what your child will or won't do... Even if they have special initials behind their name. Abe will do all the things he was meant to do, when he is ready to do them and I will celebrate all the tiny-to-most (but HUGE to us) milestones in his life.
He has taught me to slow down, to appreciate the little things, to love hard and to forgive easy. He also taught me there's a reason to smile every single day no matter how bad of a day you've had.
You've just gotta keep your chin up, surround yourself with people who make you laugh and love the little things in your life that make up the big things. Thanks Abe. You changed my life.
After 4 years of relentlessly fighting to change laws for medical cannabis for Abram, I was able to attend the invite-only Grand Opening of MedPharm Iowa. We got to tour the grow facility as well as the labs where they will be making my son's medicine.
I cannot express how grateful I am that this is happening in our state for Iowa's sick and suffering. I am honored to know the amazing women who fought for this to happen in 2014, who I feel played a crucial role in my son being well and celebrating over 3.5 years of seizure-freedom and who I am lucky enough to call my dear friends. I will always be thankful to you ladies for blazing a trail so that kids like Abe could get the help they very much needed.
I am especially grateful to MedPharm Iowa who always make it a point to include patients and caregivers in their plans and try their hardest to deliver products that we all need. They took a chance by investing $10 Million Dollars just to help Iowa's sick and suffering so that families like mine can give their children a quality of life that they deserve.
I cannot express what it mean to see plants growing in Iowa and knowing that soon enough, my son will have the medicine he needs, right here at home. Our dispensaries open in less than 30 days I couldn't be more proud and happy.
An Interview About Abram
Des Moines Register - Photos of the Grand Opening
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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