When Abigail Dar found herself smuggling CBD Oil in a desperate effort to save her autistic son Yuval, little did she know that she is at a beginning of a journey that would help many more autistic children and their families # CBD Health & Wellness Magazine is delighted to publish a full chapter from Tom Wegner’s award winning book “Cannabis Wars”, which brings the stories of patients, doctors and activists who are fighting against the draconic restrictions on the use of medical cannabis in Israel
CANNABIS WARS: CHAPTER 7
Yuval’s Mother – Abigail Dar
I am Abigail, and first and foremost, I am the mother of Yuval – a 27-year-old young man with autism. Yuval is not verbal. He has severe behavior problems, sensory regulation and anxiety problems – what is known as classic autism.
Yuval is what motivates me, what makes me who I am. For me, cannabis is part of a journey to improve the quality of life for my son and his friends.
Yuval has suffered terribly. From the age of twelve, he has received psychiatric medication because it was very difficult to deal with his problems, and at the age of sixteen, he developed epilepsy as well. The reality at home was such that I constantly felt like a hunted animal. I did not know when my son – and he is a big guy – will jump at me, will attack me, will bite me.
of course, it comes from his suffering and not because he wants to harm anybody, but the levels of distress, or madness, are such that you don’t understand where it’s coming from. It seems like something on the borderline, neurological or psychiatric, but Yuval doesn’t talk, so we do not understand what he’s going through.
With all this, I could not be left alone with my son.
It’s a very difficult experience. You have a child who you love so much, and you know that it is difficult for him and he has a disability, but you feel that you have no way of helping him, because when you are with him – you are afraid. I’m post-traumatic.
This means, for example, buying a car with seven seats, so that Yuval can sit in the back seat, so in case he were to attack me while I was driving, I’d have some time to stop before he could reach me. These are experiences that are very difficult to explain to someone who is not a parent of children with special needs.
Our life was a kind of horror movie. How can we balance him, how can we help him? Everything we received from conventional medicine was just absolute rubbish, I’m sorry to say. Every time we were told to “reduce the dose of one drug, increase another drug” – and every time, I finished up with a child in a worse condition and a home in an even more complicated situation. A large proportion of parents in our situation pin their hopes on psychiatric treatments, even though, time after time, we see that they do not help with autism – just because there is nothing else to offer us.
At one point, I decided to take Yuval off all psychiatric treatment. It was a bold decision, but I decided that I did not understand what the drugs were doing to him – he was not talking, and we were just messing with his brain. We weaned him off with a kind of 24/7 home hospitalization – me, my husband and the caregiver.
It wasn’t a simple process. These were heavy, antipsychotic drugs. After the weaning process, I was left with a child who was still complex, but he was more relaxed than when he was on the medication. That is my truth! There is a problem with the whole story of giving psychiatric medication to people who do not communicate – because they can’t tell you what they are feeling, and sometimes, you unknowingly cause their condition to get worse.
A member of my family was badly hurt by cannabis and went into a psychotic state following overuse. This is something that can happen to young people, with a dormant gene for schizophrenia. So, I asked my children not to smoke cannabis until they were twenty-four. People who might have a predisposition to schizophrenia should not consume cannabis at a young age. It’s not ‘natural’ for me to go in this direction, because I’ve seen the damage it can cause. To this day, I am very careful in that regard. I’m not one of those people who think cannabis is good for everyone all the time. But, in 2013, I read that Professor Uri Kramer, Yuval’s neurologist, was conducting research on the effects of cannabis on children with epilepsy.
I called him and said, “Uri, I want cannabis for Yuval,” and immediately, he replied, “It won’t happen.” I asked why and he explained: “Because Yuval is not defined as suffering from a drug-resistant epilepsy. He doesn’t suffer from uncontrollable seizures while being treated with medication, He has not received five anti-epileptic drugs. Thus, he is not eligible for approval.”
I told him: “Uri, I want cannabis for Yuval. Find me a doctor who can help me.” He replied, “All right, all right.” We both live in a town called Ramat Hasharon and one Friday, I caught him at the entrance to the supermarket and said: “Uri, find me a doctor now.” There and then, he started making calls to neurologists, and eventually he gave me the phone number of a Dr. Michael Segal.
As I see it, Dr. Segal is the one man who thanks to his work, autistic children in Israel have access to medical cannabis, and I am grateful to him for that. I called him, told him about Yuval, and he told me, “I am not experienced with autism, but I think it can help.”
He submitted a request to the IMCA (Israeli medical cannabis authority), and they rejected it. So, he submitted a second request, and they rejected it again. It was only on our third try that we received a permit, on the grounds of compassionate treatment.
I started reading a little more about cannabis and autism on the net. People sent me articles. I dug deeper into the subject. I am a woman that reads a lot. I said, “Wow! that sounds good.” And then, I came across a specific CBD product that parents said was good. After they rejected the first request, I decided to give Yuval CBD myself. You have to understand how desperate I was. I admit I was a little scared. I knew I was breaking the law, but I did not feel I was doing anything criminal. I thought that it didn’t make any sense that a product like CBD, which was sold without a prescription in Western countries, was illegal in Israel.
I later realized I was too naive and out in the open. Today, I am much more careful. But Yuval was suffering, and it was important for me to find something that could help him. Everything else was not important. I flew to London with my second son, ordered the product that arrived at the house where we were staying and brought it to Israel. If this was something that could help my son, then I’m not exactly one to give up out of fear.
On the flight back, I laughed about it with my son, who was 17 years old at the time. When we boarded the plane, I said to him: “Amiri, mother is now a drug smuggler. If they catch us, I’m going to say it’s you. Who will they believe; a 46-year-old woman or a guy your age?”
This is how we dealt with the situation. We use a lot of humor at home around this subject. My sons know that their mother has no limits when it comes to them. She will go all out, and even God himself can’t stop her.
I gave Yuval the CBD – and It was like magic! Wow! Suddenly, he sat down on the sofa in the living room and watched TV. Before that, he never stood still, upstairs downstairs, downstairs upstairs, and suddenly, here he was, sitting and watching television.
You could see the ease in his body, the inner calmness that he lacked so much. What more do you need? You have a 21-year-old young man who you know is disabled – you know autism is forever. All you want is quality of life, for him and for us, and to see him smile and know that he is well.
A week later, we received the permit. I was a “criminal” for about a week. This didn’t particularly bother me. I regarded it like bringing in too many packs of cigarettes through the green line at the airport. And most importantly, the hell with the law! This is my child, and if that’s what’s going to help him – don’t mess with me.
There was an article about it on television: “Mothers of autistic children smuggle drugs.” I participated twice in it – I appeared, with my voice distorted and a wig, as a mother who is a ‘drug trafficker’. But by the time they actually aired the story, we already had a license and I could come to the studio and talk openly as a mother of an autistic child with a license for cannabis, kind of a dual role. It was quite funny, really.
But later on, it wasn’t quite so funny – I gave parents in Israel information on how to order CBD, and there were some parents who were caught at customs and were brought in for questioning. There was one mother who was caught and although the case was closed, when you are a teacher in the Ministry of Education and you have a police record, it is not nice. I realized that I needed to start being careful with my advice, and it’s better if I try to do something about regulating the matter here.
***
Thanks to cannabis, I now have a son with a different quality of life. If he is having a hard day, then okay, he vapes and calms down. We can now contain the hard parts. He does not reach a situation where he “must have the drugs now” and no one is pushing these Clonex pills at him as if they were chewing gum.
Yuval’s ability to get back into balance is much better. He is not bombarded with drugs and is not crazed by them. I should add that he is in a very caring environment. I don’t think such a balance can stand on its own. With cannabis, Yuval is no longer constantly anxious, and when a person is not being endlessly attacked by anxiety, he understands more of what is happening, he is less nervous, more open to learning.
In young children with autism, I see that CBD also has a long-term effect. I am a little scared to talk about it, because I too am a mother and it is terribly hard for me with those who ‘sell dreams’. I don’t want to tell parents that CBD might make their autistic child talk – because what if that doesn’t happen? But, when I’m asked if I would have given Yuval CBD when he was three or four, with what I know today, my answer is “Yes,” unequivocally. I’ve got nothing to lose.
It seems that Yuval had to be the one with the “Wow!” effect for his mum to become the messenger. Because, when I saw it, I said, “hold it, are you normal? You shoved all these drugs into him and you didn’t even offer me cannabis as an option?!”
After all, there is no cure for autism. All the psychiatric medication that is given, in large quantities, to children and adults with autism are not indicated of autism. Unlike clinically-proven anticonvulsant drugs, which are given to patients with epilepsy, with autism there are no such drugs. So why was I not offered a therapeutic alternative like cannabis?
I’m not saying cannabis is good for everyone. What I’m saying is that when we, as parents, reach a junction where we feel the child needs medication, because we are failing, because the child can no longer cope, because the environment can no longer cope, I want cannabis to be there, as an option – like all the other options!
There is no reason not to – not from a research and scientific point of view, nor for any other reason. On my quest to promote patients’ rights, I started to be active in parent groups for children with autism. They also knew me from previous activities. I started writing and tried to make this information available.
I prepared a detailed document on how to try to get a permit, relevant to now; I find the needed information online in all sorts of places – how to apply, which doctors to see, what process they need to go through with the IMCA.
It started with only a few children, gathering the appropriate paperwork, proving that they had already been treated with enough medication and present their case. But slowly, the word spread, and parents turned to cannabis treatment for their children, even without knowing who Abigail is. That is great! It’s what awareness is all about.
On the one hand, I realized that if there is no indication for autism, but there are doctors who give children permits, then who was I to interfere? On the other hand, parents were thrown into a void. They received the license, but did not get any guidance or help in finding the right strain and dose. So this is what I did: I accompanied them both in the process of licensing and assisted with the fine-tuning of the treatment.
I was pulled into it all. Parents think that I belong to them, from morning until night, and they ask if I can only help with something small, and “maybe, can I have a minute of your time?” Then, they tell me their whole life story. All of us are parents, who have tremendous difficulties, and I find myself forgetting to “take a breath” and say to myself, “Abigail, It’s eleven at night, you’re not answering the phone right now.”
I spend all hours of the day talking to lots of parents, and helping them – on the phone, on WhatsApp, on Facebook, each with another complication and a different medical condition.
I started my own research, I prepared questionnaires. I have a master’s degree in Management and Organizational Behavior, and I was a lecturer of Statistics and Research Methods. I built invalidated questionnaires and sent them to all the parents I was helping. I asked them to fill out the questionnaire a day before treatment, a month after, and three months after. I did this in collaboration with Professor Dedi Meiri who did analyses for the oils. I really wanted a study to come out of it. In the end, it didn’t, but I learned a lot from it.
After several years of assisting parents voluntarily, I came to the conclusion that I couldn’t go on the same way any longer – that I should separate my public and personal occupation – that I could continue to be active regarding regulation, but on a personal level, I couldn’t voluntarily advise dozens of parents from morning to evening anymore.
I am a board member of the Israeli Society for Autistic Children, and I run an association to improve the quality of life of adults with autism as well. Cannabis has become the only thing out of all this activity that I have turned into a business, because I just collapsed. I realized that there was no volunteer model that I could work by and be successful with, and that there had to be some kind of clinic for this, because I had children coming in with a lot of medication and I can’t just take them off medication without the guidance of a specialist doctor.
This had to be a center that specialized in how to balance a child with autism by using cannabis treatment. So I founded “Cannafora”, and that’s what I do to this day. I work with two psychiatrists, and we accompany the children quite successfully.
One of the most exciting cases I had was of an eight-year-old boy who did not speak, but expressed himself nicely by typing, and corresponded with his mother on an iPad. After taking cannabis, she asked him how he was feeling, and he replied, “It makes it quiet inside my head.” To me, this is just amazing.
Two years ago, I was invited to lecture to parents at a school for children with autism in Kfar Bara (an Arabic village in northern Israel). When I give lectures to parents, my starting point is always that it is clear that cannabis is a mind-altering substance, but we need something for our children to calm them down, to balance them. After a general explanation, we usually talk matter-of-factly.
But the parents in Kfar Bara were busy with “What, it’s drugs!” and “What will people say? How can we hide it?” and “What if the neighbors find out?” These are things I don’t deal with at all. For me, if this is what helps my child, what do I care what it’s called? What do I care what people think about it?
Of course, this is not just a sectoral matter. My environment is very liberal and open, so I do not experience difficulty in my social reference group. But it did happen on a few occasions that I was sitting astonished in front of parents. I recently had parents of an adult with very severe autism, who had severe outbreaks and was living in a hostel, being bombarded with drugs at levels I couldn’t even describe.
They even gave him something that we are not familiar with at all in autism – electric shock therapy. Then I start talking to the parents about the process of getting CBD oil and the father says, depressed, “Oh no, we have reached drugs.” What do I do? Laugh or cry?
There was a teenager with autism, a special needs student, who was receiving heavy medication, and yet, every week, he “sent” the assistant to the emergency room. And then we started him with cannabis, and since then, the boy sends an assistant to the emergency room only once every six weeks. Everything is documented in the reports.
However, at school they tell his father: “You have to give him his drugs, it isn’t helping.” He says: “But when he was taking the drug, it happened every week, now it happens every six weeks. Isn’t that better?” We do not have one hundred percent success. We do not have “That’s it! No more outbursts!” or a situation where the difficulty is completely gone.
Cannabis does not cure autism. It helps patients to pick themselves up, lowers anxiety, and in cases of epilepsy, does amazing things. But autism is here to stay. What can we do? Every time a parent sits in front of me, I tell him, “If I had the patent, I would give it at home and show you.” This is a life journey, a journey in which you are looking for any way to give quality of life to you and your family, and especially to your child, who is living with a very great difficulty.
“Cannabis Wars” won a gold medal at the 2022 global book awards.
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