Interview by Allison Ray Benavides, LCSW

“Are you already watching? A mom in Orange County is streaming her daughter being removed by Child Protective Services! She has seizures and they’ve been giving her CBD.” Friends started direct messaging me as soon as they went live on Facebook. I am also the mother of a pediatric cannabis patient, and a licensed clinical social worker.

I groaned and navigated over to Maria Selva’s page to watch as the police took her husband downstairs in handcuffs, while she stayed upstairs to soothe her children. It put me in a dark, sad place. How was this happening in 2017 in Southern California?

My son has been using cannabis since 2013, and is seizure free since 2014. We’ve never had an issue. Neither has anyone in our local pediatric cannabis support group. As an advocate, I specifically reassure parents this won’t happen to them. It’s not my style to fuel fear—us parents of special needs kids are powerless enough as it is. Plus, California’s medical marijuana program is over 20 years old and legally protects children.

...so what do I tell parents now?

I watched longer, maybe to see if anything would happen to help this tragedy make sense. It never did. I cried and tried to imagine the risk so imminent that necessitated a special needs child be forcibly removed from her home just days before Halloween. Since the problem in question involved cannabis—known for its gentle safety profile—I could not.

I reached out to Maria to offer my support. It took weeks to coordinate our schedules and felt like a huge success once we did. I always feel better with another special needs mom around and I wondered if she might too.

Maria, the first thing I noticed in the video was how calm and graceful you were. I know I would be the opposite and probably the one in handcuffs. Where does that come from?

You know, I think when you have a special needs child with seizures you have to be. It’s always scary, so I have experience with staying calm in horrible situations. And I remember my inspiration that night was knowing that my actions were the only thing I could control. I tried to be level headed to avoid escalating anything with the police, to avoid any extra trauma. I just prayed in my head, “God give me strength to navigate this the best way I can.”

I was also moved by your focus on your children. You were both nurturing and protective, with very specific instructions for your daughter Ali.

When CPS decided to move forward with the investigation I went into defense mode. The fact that they still had concerns about my children after talking with me, I was like, okay, I'm done with you. Look where being open with them got us—they took her from us! So I decided not to do that anymore. I told her not to answer their questions because I wanted to make sure she knew she had that right. I wanted her to know that you don’t have to talk to them—so don’t.

How did she do with all that information?

I could see it was starting to overwhelm her. So I wrote a note I showed on the video saying that they do not have my consent to medically treat her. I didn't want to put too much pressure on her because it has been very confusing.

How have you known how to help her process her experience? There's not a picture book about how to recover from a CPS separation. What have you done as a family to help her heal?

At first, obviously it was really rough. I remember I just wanted to do whatever I could to make her feel secure and safe with us. Before she was good at night on her own, in her own bed. But then she became anxious. She slept with us a lot so she could feel that security. We homeschool now too. So we've had a lot of time to be together as a family.

Sometimes she will ask big questions and I encourage her to bring them up. It's important for us to talk about it. She still asks if she will ever have to go live with another family again. She also noticed that I was trying not to cry that night and brought that up, so recently I’ve been sharing with her more of my experience too and why it happened.

What do you tell her? Why did this happen to your family, Maria?

I say, “You know that CBD oil that you take? The doctors wanted you to take the other yucky stuff, but the CBD that we are using works better and helps a lot of other people too. But unfortunately, not everyone has access to it because there are certain laws in place. It's not bad, it’s just not accepted by everyone yet.”

I tell her, “We decided to keep you on it and the doctor and your school nurse didn't like that. And so that's why they came to take you that night. They felt like what we were doing was wrong, but we know what we were doing was right. That's why we fought and got you back. And there are a lot of other people still fighting to use CBD.”

So she’ll ask me, “Am I special?” And I’ll say, “Yeah you are!” And I can see her little mind working trying to understand it all. 

It IS a lot to understand. I’m over here comparing our experiences. We’ve had zero problems with doctors, schools, or CPS. I’m still chewing on why your family?

I think I was naive. I did my research on treatments which led to CBD oil and I was like, yes, that's it and I bought it at the Mother's Market less than a mile from our home. I knew there was a cultural stigma but it didn't have THC obviously so I thought we were good! We bought it literally over the counter. Even when we were being investigated by CPS, they kept asking if we had a prescription. And I’d say, I don't need one.

You know we had this feeling not to tell anyone, don't tell the doctors. They were very against it. But it was the school nurse. She wanted Ali on a prescription. Feeling the pressure from her, my husband let her know, “We have her on CBD oil right now. It seems to be working until we find a new neurologist.” We had just left Kaiser. So it was taking some time but the nurse at her school was very pushy.

When I learned that you had taken your time and didn’t rush into using pharmaceuticals I was so proud of you. I may start crying...we put our son on Keppra immediately, following doctor’s orders. And what they didn’t tell us is that all anti-epileptic drugs can also actually cause seizures. Keppra made my son worse. He went from a few seizures a week, to over 75 a day. You basically got in trouble for making the choice I wish I had. There is such a huge disconnect between what families value and how they want to treat their children, and what the medical consensus advises.

Right? It makes finding a doctor who supports CBD so important. But I didn’t know that was a thing. Because the only thing that was ever offered to us by any doctor was just Keppra. Even before CBD we were always asking for alternatives, something less harsh, and they had nothing. That's when I felt like I had to take matters into my own hands.

I relate to that. And alternative treatments always come with controversy. This nurse took a specific, superior interest in “protecting” your daughter - how weird! I don’t even know our school nurse.

It was so extreme. I told my husband I felt harassed. I don't understand what's going on. Is it because we’re Latin or look young? I let them know that we had just moved, were starting a new insurance company, give us some time to get things in place. And, Ali doesn’t have severe epilepsy. She has a seizure or two a month. Everyone seemed to agree but then CPS was called the day after he let her know about the CBD.

You sound so reasonable. Major medical decisions take time to make. What was the specific charge? That you’d been abusive by giving her CBD or that you’d been negligent by not putting her on a medication? 

It was both. The court documents called it “severe medical neglect" by taking her off the Keppra.  But we weren't neglecting her and gave up her medical records in the investigation. We were just looking for a new doctor, give us a minute.

I got a call from a mom last night looking for resources and she randomly mentioned that someone at their school called CPS on her, which was interesting timing, right? knowing I’d be talking to you today. She tells me her experience like no big deal. They showed up, she showed them his medical record and medical marijuana recommendation, and they went away. So is that the lesson here? Get the recommendation?

But you can buy it without one so it’s a mixed message. Knowing what I know now, I think it’s good to start by seeking out the doctors who support cannabis. And they are very hard to find. So it's important to be resourceful and reach out to other families who know so they can help you navigate. And until you get a doctor you’re confident with,

DON’T TELL ANYONE.

I also tell parents to go with their gut and use their intuition. You know, I had this feeling about the nurse. The sad part is that it’s hit-or-miss who you’re going to deal with.

Ugh, yes! The element of luck! ‘Cause what the fuck can we really control anyway. But your family isn’t taking this lying down. What specific things are you doing to take back your power?

We just found a civil rights attorney to file a lawsuit and have become advocates for pediatric cannabis. We are in an upcoming documentary called Weediatrics that basically follows a few different families desperately trying to treat their children's diseases with cannabis. Some have to break the law. So it documents the struggles of these families just trying to get their kids healthy. Still waiting to hear when that’s coming out.

And then we had a really fun photoshoot with Charlotte's Web after meeting you guys with MJ Lifestyle for this shoot earlier in the month.

How does Ali do with all the attention? I'm wondering if it's had a healing effect on her, helped make sense of her experience?

She does well, she likes it. She enjoys sharing about herself and she knows that she helps educate people about epilepsy and the oil she takes. And we do talk to her about how when we share what happened to us that night it helps it not happen to other families.

She is so brave. You all are! Even though it is uncomfortable and scary to be bold and put our stories out there, I have also found advocacy work to be enormously healing.

Absolutely. Right now I’m working on a website called Pursuit Of Cannabyss—because starting your kid on cannabis can feel like falling into the abyss. And we need to create more places where we feel met on a real level, with warmth and humanness. There will be a blog, articles, interviews—my main goal is to empower parents by encouraging them to learn their rights, listen to their intuition and be empowered.

Maria, do you have a parting statement to moms who are afraid this could happen to them?

Yes. I always pray first. Seek guidance before everything. Then get educated, find support, and have a plan. And don’t let anyone ever tell you that they know your child better than you do.

Allison Ray Benavides, LCSW is a medical social worker living in San Diego and working in the field of death and dying. She has a deep respect and gratitude for all wisdom traditions and is most inspired by her work when women, nature, Spirit, and healing come together. When her three-year-old son was diagnosed with intractable epilepsy in 2013, he was lucky to find seizure freedom with high CBD. She is the co-founder of a support group for San Diego families navigating the uncharted territory of pediatric cannabis together.

To learn more visit PediatricCannabisSupport.com