MOA a new pathway to keep children with their families

Misty Napeahi, Tulalip Tribes General Manager and Mel Sheldon, Tulalip Tribes Chairman, signing the government-to-government child welfare agreement between the Tulalip Tribes and the State of Washington.Photo/Micheal Rios
Misty Napeahi, Tulalip Tribes General Manager and Mel Sheldon, Tulalip Tribes Chairman, signing the government-to-government child welfare agreement between the Tulalip Tribes and the State of Washington.
Photo/Micheal Rios


by Micheal Rios, Tulalip News 

Few events are more traumatic for children than being removed from their families and entered into the foster care system. The trauma is even worse for Native children because usually when a government agency removes a child, they take them from not only their family but their culture and reservation as well. Such displacement can often lead children down a path to a deeply troubled life.

Here in Tulalip, like countless reservations across the United States, we’ve been forced to bear witness to tribal parents losing their tribal children to the State, of families being torn apart because of a government agency who knows very little about the Native way of life.

There are a lot of Native citizens who don’t understand how this continues to happen, since Congress passed the Indian Child Welfare Act in 1978 in an effort to stop Native families from having their children removed by the State and local officials for invalid and misconstrued reasons. Yet 38 years later, Native children are still much more likely to be removed from their families and placed in foster care than non-Native children.

The Tulalip Tribes leadership, along with the Office of the Reservation Attorney, and beda?chelh, have long fought for a solution that accurately reflects Tulalip values while being anchored by our inherent sovereignty. Back in 2011, the Tribe entered their first formal child welfare agreement with the State, but that was a general boiler plate model that laid the groundwork for a specifically Tulalip tailored agreement to follow. After years of steadfast dedication and due diligence, the solution may have finally arrived in the form of an updated government-to-government child welfare agreement between the Tulalip Tribes and the State of Washington. The agreement is reflective of Tulalip’s cultural values, aims to keep families together, and, as much as possible, minimize disruption to tribal children. The official agreement was signed into effect on January 13, 2016 by Chairman Mel Sheldon, General Manager Misty Napeahi, and officials from the Washington State Department of Social and Health Services and the Children’s Administration.

The signed agreement formalizes the government-to-government relationship between the Tribe and the State with child welfare cases. It’s based on the fundamental principles of the government-to-government relationship acknowledged in the 1989 Centennial Accord and recognizes the sovereignty of the Tribes and the State of Washington and each respective sovereign’s interests. What does this mean? It means the State of Washington now officially recognizes Tulalip has jurisdiction over Tulalip children wherever found and that Tulalip desires to assert its jurisdiction and authority to protect Tulalip children and keep families together whenever possible.

“I would like to thank everybody for coming out today and pay a special tribute to Michelle Demmert, our reservation attorney, for all the hard work she has done and for understanding my vision to protect our children and families,” said Misty Napeahi, General Manager of the Tulalip Tribes, during the document signing. “With this agreement we are doing what’s in the best interest of Tulalip children. That’s who we are here for. This is a road map that will help guide us and allows us to work in the best interest of our children.”

The overarching purpose of this agreement is the safety and well-being of Tulalip Tribal children. To this end, the specific purpose of this agreement between the tribe and the state is to clarify the handling of Child Protective Services and Child Welfare Services cases involving Tulalip children and their families.

Pursuant to the Indian Child Welfare Act and our sovereignty, the Tulalip Tribes have jurisdiction to handle all child abuse and neglect cases for our children. Some may be wondering, haven’t we always had that jurisdiction? The simple answer is no. In certain situations state agencies were able to, and would, circumvent the tribe altogether in cases involving allegations of child neglect or abuse. Now, with this agreement in place, the tribe can no longer be circumvented. Going forward, any time a state agency comes to investigate an allegation of child neglect or abuse, a beda?chelh case manager will be on the scene.

For instance, if there’s a child abuse referral made by a teacher who sees something that isn’t good for a child. Say at school a child is coming in late all the time and one day comes in and has bruising on his face or arms. That teacher or school would call the CPS hotline and provide those details. That would trigger a series of events. If the child was Tulalip, then the State would notify beda?chelh and they would tag the case an emergency or not (24 hour vs. 72 hour contact by beda?chelh and State representatives). If it’s an emergency, then this new agreement lays out the State is required to contact beda?chelh and a beda?chelh case manager would need to be involved in the process from the get go.

This agreement ensures Tulalip staff and representatives are always actively involved in any and all cases involving our children, and that we are taking the lead when the opportunity is there. The bottom line is we want our primary goal to be child safety, and to make sure any services or treatment families are receiving is defined by the tribe. That’s why this agreement also lends itself to the creation of a Tulalip Family Intervention Team (FIT), which will contact families of low-risk assessment and provide skill based services to parent their children, so that no court intervention is necessary.

FIT aims to keep families together and act as a proactive solution offering culture based services to families, while getting parents actively involved. It’s a way to handle things more traditionally between the Tribe and the families.

It may be an agreement of this nature is long overdue, but it took many days and long hours from individuals across several different tribal and state agencies to carefully craft and fine tune in order to get it right, not just for Tulalip children and families, but for all Native children and families. With Tulalip leading the way, there are sure to be multiple tribes who model their own government-to-government child welfare agreements after this one.

“I would like to thank the Tulalip leadership that allows us to do our job and work in the best interest of this community and the children,” said reservation attorney Michelle Demmert. “So many voices do not have someone who is championing their cause. Being an attorney for 24 years people think I should be doing something else rather than focusing on issues involving children or domestic violence, but these are the issues where people do not have a voice in the community. They need someone who can speak for them and understand their situation. Being a Tlingit woman, I have that perspective and can bring out their voice. This agreement does that and so much more. It benefits not only the Tulalip families and community, but other tribes who will follow suit.”


Representatives from the Tulalip Tribes, the Washington State Department of Social and Health Services and the Children’s Administration signed the official agreement on January 13, 2016.Photo/Micheal Rios
Representatives from the Tulalip Tribes, the Washington State Department of Social and Health Services and the Children’s Administration signed the official agreement on January 13, 2016.
Photo/Micheal Rios



Contact Micheal Rios,

Tulalip Healing—Families and Children this Holiday Season

By Kara Briggs Campbell, Tulalip News

TULALIP, Wash – The holidays will be different at the Tulalip Tribes this year.

Gratitude, an important part of any holiday season, is made more important because of the losses that have occurred since the Oct. 24 shooting at Marysville Pilchuck High School.

“I hold in my thoughts all the people who have their kids around the table, and the ones that have that empty seat in my thoughts,” said Leila Goldsmith, the director of the Tulalip Tribes’ Legacy of Healing Children’s Advocacy Center. “I hold mine a little closer because I think wouldn’t that mom want us to hold our kids closer.”

For children who seek care or are referred at the center, the recent events are raising questions as big as life and death, and wonders about how we will ever celebrate this holiday season without in a time of trauma and grief.

For families, Gurjeet Sidhu, a child therapist at the center, the most important thing that parents can do now for their children is to listen to them.

“Knowing where your child is can let you know if they are internalizing the tragedy negatively,” Sidhu said.

This could mean that child is wondering if they had prayed harder, of if they had checked on someone more, or could they have been nicer if they had only known this one or that one would be gone.

“Parents remind your kids that they couldn’t have done anything,” Sidhu said. “Tell them that they don’t control the world.”

In this season when every news flash potentially triggers more traumas in our community, the act of listening and hearing even a child’s non-verbal communication will be the best gift that parents and trusted adults can give.

And as children turn their attention to the holidays, the question that arises is, will it be the same this year?

Sidhu recommends, responding with a question, “What do you think?” Then listen.

“I haven’t heard any children say no to the holidays yet,” she said. “But I have heard kids saying I wish that this hadn’t happened.”

For younger kids, who still believe that Santa Claus will come and make everything right, parents need to be stronger and protect the magical thinking while the child still has it because, because, Sidhu said, we will all get to be adults soon enough.

“Personally, if your family has holiday rituals like gathering around the holiday dinner table keep that going so you keep the traumatic memory from attaching to the holiday,” Sidhu said.

The holiday traditions have a rhythm that can help keep everyone in the family engaged in the holiday even in hard times like these. You might not feel like it, but once you start decorating, baking cookies or whatever your tradition, the familiar activities will inspire you and your children.

“In times like these we need to talk with our children about our core values, our spiritual belief, our family traditions,” Sidhu said. “And then if you are a family that has a ritual of gathering at the dinner table, do it even more now.”

At a banquet that the Tulalip Tribes held last month for the first responders to the tragedy, Goldsmith heard people talk about the new normal now that these recent events have entered the history of the Tribes.

The young ones us are asking questions about how can they help the people around them, even as they are experiencing loss in a deeper way than maybe they ever have before.

Some children have shared with Sidhu that they cried two hours straight for everything that ever went bad, while others are feeling things that have happened even recently more deeply.

“My message is it’s OK to cry, totally OK. You aren’t going to stress out the adults around you because you are crying,” Sidhu said. “The children need to know now that, ‘you are loved and you are safe.’”












FDA, EPA Advise Pregnant Women, Children to Eat More Low-Mercury Fish

By Marla Cone and Brian Bienkowski,  Enviromental Health News


Federal officials on Tuesday June 10 announced major changes in advice to pregnant and breastfeeding women by recommending consumption of at least eight ounces of low-mercury fish per week.

It is the first time that the Environmental Protection Agency and Food and Drug Administration have issued recommendations on the minimum amount of fish that pregnant women and children should eat. The previous advisory, issued in 2004, included only maximum amounts to protect their fetuses and young children from mercury, which can harm developing brains and reduce IQs.

“Eating fish with lower levels of mercury provides numerous health and dietary benefits,” Nancy Stoner, the EPA’s acting assistant administrator for the Office of Water, said in a statement. “This updated advice will help pregnant women and mothers make informed decisions about the right amount and right kinds of fish to eat during important times in their lives and their children’s lives.”

Under the long-awaited, proposed new guidelines, pregnant and breastfeeding women are advised to eat a minimum of eight ounces and no more than 12 ounces of fish with low levels of methylmercury, including shrimp, pollock, salmon, canned light tuna, tilapia, catfish and cod. That is equivalent to two or three fish servings per week. Young children, according to the advisory, also should have two or three smaller servings of low-mercury fish, or three to six ounces, per week.

RELATED: Inslee Weighs Tenfold Increase in Cancer Risk for Fish Eaters

As in the old recommendations, pregnant and nursing women and young children are advised to avoid four high-mercury fish: tilefish from the Gulf of Mexico, shark, swordfish and king mackerel.

The agencies also reiterated their specific recommendations for limits on albacore (or white) tuna: no more than six ounces a week for pregnant and breastfeeding women. Children, they say, should eat no more than one to four ounces of albacore tuna weekly.

Advice about consumption of tuna has been highly controversial, with the fishing industry criticizing limits and health advocacy groups pushing for the FDA and EPA to add it to the list of fish to avoid.

When asked about high levels of mercury in light tuna, Dr. Stephen Ostroff, the FDA’s chief scientist, said during a call to reporters on June 10 that the agencies included only four fish on the “do not eat” list because “they have consistently shown higher levels of methylmercury.”

“We will continue to look at levels of methylmercury in a variety of fish and in the future make recommendations about other fish as well,” he said.

Orange roughy and marlin also have slightly higher concentrations than most fish, added Elizabeth Southerland, EPA’s director of the Office of Science and Technology. She said the agencies are asking the public to comment on whether those fish should be added to the list of fish to avoid.

Environmental groups filed a lawsuit against the FDA and EPA earlier this year, saying that the 2004 advisory was out of date and that women should be advised to eat less mercury-contaminated fish. They also are seeking clearer recommendations and labels that are easier for women to understand. EPA and FDA officials on Tuesday declined to comment on the lawsuit.

Environmentalists on Tuesday said they were disappointed by the proposed changes, mostly because of the lack of warning labels on canned tuna.

“Over one-third of American’s exposure to methylmercury is from tuna, because tuna are higher-mercury fish and Americans consume so much,” said Michael Bender, director of the Mercury Policy Project. “Albacore ‘white’ canned tuna generally has three times as much mercury as ‘light’ tuna.  However, Americans consume about three times as much of the light variety. Therefore, each variety—’white’ and ‘light’—contributes a staggering 16 percent of Americans’ dietary exposure.”

Representatives of the fish industry lauded the new advice, saying it “clears the water on outdated seafood guidance for pregnant and breastfeeding women.”

“FDA is working to translate years of important nutrition science into updated advice, and that’s exciting,” Jennifer McGuire of the National Fisheries Institute, which represents seafood companies including Gorton’s Inc. and Bumble Bee Foods, said in a statement. “Expectant moms and health professionals alike have been confused about seafood advice during pregnancy and FDA has begun the process of setting the record straight that fish should be a pregnancy staple.”

The advice can be confusing, since research has found both benefits and dangers to eating fish. Studies have linked pregnant women’s high mercury consumption in seafood to reduced IQs and memories and other neurological effects in their children. The findings are based on two decades of tests of school children in the Faroe Islands, who were highly exposed in the womb through their mother’s consumption of whale meat, as well as several dozen other human studies.

At the same time, research has shown that fish consumption provides vital nutrients, Omega-3 fatty acids and protein, for fetal brain growth, and that children’s IQs increase when their mothers had eaten low-mercury fish.

“We don’t think women would accrue the same benefits in terms of health and development if they were to use supplements in place of fish,” Ostroff said.

FDA officials said their analysis of data from more than 1,000 pregnant women found that 21 percent ate no fish in the previous month. Those who did ate less than the U.S. Department of Agriculture’s Dietary Guidelines for Americans recommend.

For wild fish, EPA officials warned recreational and subsistence fishers to follow all local advisories, and if there is no posted advisory, to limit consumption to six ounces per week for women, and one to three ounces for children—with the added precaution to not eat any other fish that week. (A three-ounce piece of fish is about the size of a checkbook.)

Before finalizing the rules, the two agencies plan to hold public meetings and will solicit comments for 30 days.

For the EPA’s and FDA’s specific recommendations for children and women, click here. For a list of fish that the Monterey Aquarium considers safe and sustainable, click here.



The hard lives — and high suicide rate — of Native American children on reservations

Youths’ suicides rattle Indian country: The silence that has shrouded suicide in Indian country is being pierced by growing alarm at the sheer numbers of young Native Americans taking their own lives — more than three times the national average, and up to 10 times the average on some reservations.
Youths’ suicides rattle Indian country: The silence that has shrouded suicide in Indian country is being pierced by growing alarm at the sheer numbers of young Native Americans taking their own lives — more than three times the national average, and up to 10 times the average on some reservations.

By Sari Horwitz, Washington Post

SACATON, ARIZ. The tamarisk tree down the dirt road from Tyler Owens’s house is the one where the teenage girl who lived across the road hanged herself. Don’t climb it, don’t touch it, admonished Owens’s grandmother when Tyler, now 18, was younger.

There are other taboo markers around the Gila River Indian reservation — eight young people committed suicide here over the course of a single year.

“We’re not really open to conversation about suicide,” Owens said. “It’s kind of like a private matter, a sensitive topic. If a suicide happens, you’re there for the family. Then after that, it’s kind of just, like, left alone.”

But the silence that has shrouded suicide in Indian country is being pierced by growing alarm at the sheer number of young Native Americans taking their own lives — more than three times the national average, and up to 10 times on some reservations.

A toxic collection of pathologies — poverty, unemployment, domestic violence, sexual assault, alcoholism and drug addiction — has seeped into the lives of young people among the nation’s 566 tribes. Reversing their crushing hopelessness, Indian experts say, is one of the biggest challenges for these communities.

“The circumstances are absolutely dire for Indian children,” said Theresa M. Pouley, the chief judge of the Tulalip Tribal Court in Washington state and a member of the Indian Law and Order Commission.

Pouley fluently recites statistics in a weary refrain: “One-quarter of Indian children live in poverty, versus 13 percent in the United States. They graduate high school at a rate 17 percent lower than the national average. Their substance-abuse rates are higher. They’re twice as likely as any other race to die before the age of 24. They have a 2.3 percent higher rate of exposure to trauma. They have two times the rate of abuse and neglect. Their experience with post-traumatic stress disorder rivals the rates of returning veterans from Afghanistan.”

In one of the broadest studies of its kind, the Justice Department recently created a national task force to examine the violence and its impact on American Indian and Alaska Native children, part of an effort to reduce the number of Native American youth in the criminal justice system. The level of suicide has startled some task force officials, who consider the epidemic another outcome of what they see as pervasive despair.

Last month, the task force held a hearing on the reservation of the Salt River Pima-Maricopa Indian Community in Scottsdale. During their visit, Associate Attorney General Tony West, the third-highest-ranking Justice Department official, and task force members drove to Sacaton, about 30 miles south of Phoenix, and met with Owens and 14 other teenagers.

“How many of you know a young person who has taken their life?” the task force’s co-chairman asked. All 15 raised their hands.

“That floored me,” West said.


A ‘trail of broken promises’

There is an image that Byron Dorgan, co-chairman of the task force and a former senator from North Dakota, can’t get out of his head. On the Spirit Lake Nation in North Dakota years ago, a 14-year-old girl named Avis Little Wind hanged herself after lying in bed in a fetal position for 90 days. Her death followed the suicides of her father and sister.

“She lay in bed for all that time, and nobody, not even her school, missed her,” said Dorgan, a Democrat who chaired the Senate Committee on Indian Affairs. “Eventually she got out of bed and killed herself. Avis Little Wind died of suicide because mental-health treatment wasn’t available on that reservation.”

Indian youth suicide cannot be looked at in a historical vacuum, Dorgan said. The agony on reservations is directly tied to a “trail of broken promises to American Indians,” he said, noting treaties dating back to the 19th century that guaranteed but largely didn’t deliver health care, education and housing.

When he retired after 30 years in Congress, Dorgan founded the Center for Native American Youth at the Aspen Institute to focus on problems facing young Indians, especially the high suicide rates.

“The children bear the brunt of the misery,” Dorgan said, adding that tribal leaders are working hard to overcome the challenges. “But there is no sense of urgency by our country to do anything about it.”

At the first hearing of the Justice Department task force, in Bismarck, N.D., in December, Sarah Kastelic, deputy director of the National Indian Child Welfare Association, used a phrase that comes up repeatedly in deliberations among experts: “historical trauma.”

Youth suicide was once virtually unheard of in Indian tribes. A system of child protection, sustained by tribal child-rearing practices and beliefs, flourished among Native Americans, and everyone in a community was responsible for the safeguarding of young people, Kastelic said.

“Child maltreatment was rarely a problem,” said Kastelic, a member of the native village of Ouzinkie in Alaska, “because of these traditional beliefs and a natural safety net.”

But these child-rearing practices were often lost as the federal government sought to assimilate native people and placed children — often against their parents’ wishes — in “boarding schools” that were designed to immerse Indian children in Euro-American culture.

In many cases, the schools, mostly located off reservations, were centers of widespread sexual, emotional and physical abuse. The transplantation of native children continued into the 1970s; there were 60,000 children in such schools in 1973 as the system was being wound down. They are the parents and grandparents of today’s teenagers.

Michelle Rivard-Parks, a University of North Dakota law professor who has spent 10 years working in Indian country as a prosecutor and tribal lawyer, said that the “aftermath of attempts to assimilate American and Alaska Natives remains ever present . . . and is visible in higher-than-average rates of suicide.”

The Justice Department task force is gathering data and will not offer its final recommendations to Attorney General Eric H. Holder Jr. on ways to mitigate violence and suicide until this fall. For now, West, Dorgan and other members are listening to tribal leaders and experts at hearings on reservations around the country.

“We know that the road to involvement in the juvenile justice system is often paved by experiences of victimization and trauma,” West said. “We have a lot of work to do. There are too many young people in Indian country who don’t see a future for themselves, who have lost all hope.”

The testimony West is hearing is sometimes bitter, and witnesses often come forward with great reluctance.

“It’s tough coming forward when you’re a victim,” said Deborah Parker, 43, the vice chair of the Tulalip Tribes in Washington state. “You have to relive what happened. . . . A reservation is like a small town, and you can face a backlash.”

Parker didn’t talk about her sexual abuse as a child until two years ago, when she publicly told of being repeatedly raped when she “was the size of a couch cushion.”

Indian child-welfare experts say that the staggering number of rapes and sexual assaults of Native American women have had devastating effects on mothers and their children.

“A majority of our girls have struggled with sexual and domestic violence — not once but repeatedly,” said Parker, who has started a program to help young female survivors and try to prevent suicide. “One of my girls, Sophia, was murdered on my reservation by her partner. Another one of our young girls took her life.”

Stories of violence and abuse

Owens recalls how she used to climb the tamarisk tree with her cousin to look for the nests of mourning doves and pigeons — until the suicide of the 16-year-old girl. The next year, the girl’s distraught father hanged himself in the same tree.

“He was devastated and he was drinking, and he hung himself too,” Owens said.

She and a good friend, Richard Stone, recently talked about their broken families and their own histories with violence. When Owens was younger, her uncle physically abused her until her mother got a restraining order. Stone, 17, was beaten by his alcoholic mother.

“My mother hit me with anything she could find,” Stone said. “A TV antenna, a belt, the wooden end of a shovel.”

Social workers finally removed him and his brothers and sister from their home, and he was placed in a group home and then a foster home.

Both Owens and Stone dream about leaving “the rez.” Owens hopes to get an internship in Washington and have a career as a politician; Stone wants to someday be a counselor or a psychiatrist.

Owens sometimes rides her bike out into the alfalfa and cotton fields near Sacaton, the tiny town named after the coarse grasses that once grew on the Sonoran Desert land belonging to the Akimel O’Odham and Pee Posh tribes. She and her friends sing a peaceful, healing song she learned from the elders about a bluebird who flies west at night, blessing the sun and bringing on the moon and stars.

One recent evening, as the sun dipped below the Sierra Estrella mountains, the two made their way to Owens’s backyard. They climbed onto her trampoline and began jumping in the moonlight, giggling like teenagers anywhere in America.

But later this month on the reservation, they will take on an adult task. Owens, Stone and a group of other teenagers here will begin a two-day course on suicide prevention. A hospital intervention trainer will engage them in role-playing and teach them how to spot the danger signs.

“In Indian country, youths need to have somebody there for them,” Owens said. “I wish I had been that somebody for the girl in the tamarisk tree.”

Thanksgiving Activities for Children

By Toyacoyah Brown,

Just like our Native American culture is not a Halloween costume or a sports mascot, we are also not a cute construction paper project for Thanksgiving.  You are not doing our rich culture any justice when you make brown paper bag vests or paper feather headbands.

Hopefully you’ve read some of the articles recently posted on to know that what we typically learned about Thanksgiving was a romanticized myth.  How I wish we could sugar coat history, and make it easier for our children to understand, but we can not and should not.  Instead I think the focus at Thanksgiving time, should shift away from reenacting the myth of the First Thanksgiving and decorating the classroom with Pilgrims and Indians. We should instead focus on things the children can be thankful for in their own lives. Teaching about Native Americans only at Thanksgiving from a historical perspective will reinforce the idea that they only existed in the past.

Since thanks and giving are in the name of the holiday, it only makes sense to teach the children the meaning of thankfulness and gratitude.  Here are several projects that can help them be grateful.

Give Thanks Calendar Craft

Gratitude Pumpkin

Wreath of Plenty

Thankful Tree

Multicultural Thanksgiving Wreath : This would be great if you want to incorporate some Native American words into the tree such as the Navajo word for Thank You = Ahéhee’

There are many cultures around the world that celebrate autumn harvest.  Why not focus on the season for a craft?

Leaf Suncatchers

Sunburst Wreath

And since corn was a main food staple of the Americas, it makes sense to decorate with it.
Paper Bag Turkey

Paper Indian Corn

Corn Collage

Corn Husk Dolls – On the Native Tech website there is a great story that goes along with the doll instruction if you would like to incorporate some Native American culture.

Hopefully I’ve provided you with some fun activities you can do with your children this season.  However you choose to celebrate I hope you have a Happy Thanksgiving!

Worried Parents Weigh Their Children’s Health Against Medical Marijuana Law

Many parents who once viewed marijuana as a hard-core drug now see it as a natural, healing plant.

By Katie Rucke, Mint Press

For two months straight — 24 hours a day, seven days a week — Jason David’s 5-year-old son Jayden screamed in agony. Unable to sleep, defecate or eat, Jayden was taking 22 anti-seizure pills a day, some of which had withdrawal syndromes that are reportedly worse than heroin. David was concerned the pills were literally killing his son.

At his wits’ end and unconvinced doctors were doing everything they could, David says he contemplated suicide because he couldn’t watch his son live in pain any longer. But the devout Christian says God intervened and suggested he try giving his son marijuana.

Jayden David. (Photo/Jason David/Facebook page: "Jason and Jayden's Journey")

Jayden David. (Photo/Jason David/Facebook page: “Jason and Jayden’s Journey”)


Jayden is one of an estimated 334,000 people around the world who have Dravet syndrome, a rare and severe form of epilepsy that begins in infancy and left him unable to communicate with his father or his doctors.

Living about an hour from Oakland, Calif., David says Jayden’s doctor agreed they had nothing to lose and gave him a prescription for medical marijuana. David worked with a local medical marijuana dispensary to obtain an oil known as cannabidiol that his son would be able to swallow, not smoke.

Jayden’s medication contains such a low amount of THC, the main psychoactive ingredient found in marijuana, that it’s nearly impossible for him to get high.

The first day Jayden tried cannabidiol was the first day he went seizure-free in 4 1/2 years. Since then, David has continued to give Jayden the medication daily. Though Jayden is not completely seizure-free, David says his son has dramatically fewer seizures and his life is “100 times better.”

David says his son finally has a chance to just be a kid.

“Before, Jayden couldn’t go into a swimming pool,” he said, explaining that his seizures were triggered by excitement, reflective objects, hot and cold temperatures. But not only can Jayden go swimming now, he can get in the car by himself, climb on the playground, go up on the slide, and chew his food.

“Up until he was 5 years old everything had to be pureed,” David said. Jayden is also able to walk “a hundred times better,” he said.


‘Miraculous marijuana’

Jayden was 4 months old when he had his first seizure and was rushed by ambulance to a nearby hospital. The seizures continued for the next six months, and David grew suspicious they were somehow connected to the shots Jayden had recently received.

Jayden CBD meds. Photo courtesy Jason David Facebook page Jason and Jayden's Journey

Jayden shown taking CBD meds, a derivative of marijuana. (Photo /Jason David/Facebook page: “Jason and Jayden’s Journey”)


David says he told his pediatrician he didn’t want Jayden to be given any more shots, but his ex-wife gave the doctor permission. The couple is now divorced.

“She turned me into the bad guy,” he said. But as soon as the needle penetrated Jayden’s skin, he began having a seizure that lasted for 90 minutes and resulted in another ambulance ride.

Before taking cannabidiol, Jayden was taking 22 different anti-seizure medications. Even so, he had at least one seizure per day in addition to about 500 daily twitching seizures.

Jayden now has to take only two other medications. He takes far fewer ambulance rides, and the last one was taken because his body went into withdrawal shock after doctors weaned him off a drug too quickly.

David says many people have changed their opinion regarding marijuana since he shared his son’s story. He says those who once viewed marijuana as a hard-core drug now see it as a natural, healing plant.


Success with marijuana

Though pediatric medical marijuana patients are not as common as adult patients, marijuana appears to have significant healing benefits for kids, too. The drug’s healing properties are not just for kids with Dravet syndrome, either — marijuana is being used to treat all sorts of medical conditions from cancer to autism to attention deficit hyperactivity disorder. Even though marijuana is banned under federal law, the National Organization for the Reform of Marijuana Laws says a majority of scientific studies on the plant back up the miraculous claims made by the parents of pediatric medical marijuana patients.

It’s not just the U.S. that has found a medicinal value for marijuana. Although pot is banned in the Czech Republic — a nation with one of the highest usage rates of the drug — researchers in the European nation have examined the drug’s therapeutic uses since 1954. In fact, it was a Czech citizen, professor Jan Kabelik, who created the world’s first cannabis laboratory, and two other Czech researchers were the first to isolate cannabinoids in the plant.

But these doctors’ findings have not been enough to convince many American physicians to research the drug themselves or prescribe marijuana to their patients.

While the American Academy of Pediatrics does not endorse the use of medical marijuana, the organization’s stance on the drug is reportedly the way it is because some doctors are concerned the use of marijuana may have “devastating consequences” later in life.

“We have doctors contacting parents from different universities doing studies about how the kids are doing,” David said, adding it doesn’t make sense that the U.S. is able to create bombs that kill a million people at once, but doctors can’t figure out a plant.

Legalization advocacy groups often point out that unlike many pharmaceuticals, marijuana is not toxic and has never been reported as the cause of a lethal overdose.

Dr. Stuart Gitlow, the president of the American Society of Addiction Medicine and a member of the American Medical Association Council on Science and Public Health, says doctors are reluctant to recommend medical marijuana to a child because it may come back to haunt them. If the child later develops a mental health condition or gets in a car crash, the doctors will be blamed and won’t have any way to defend themselves, he said.

But several pediatricians in the United States believe the drug has a healing power that is worth investigating.

Because the medical community remains relatively mum on marijuana’s healing properties, it’s parents like David who, by sharing their success stories, have convinced other parents like Rebecca Brown to try it. Brown is investigating whether medical marijuana could help her son, Cooper.

“As soon as I found out about [medical marijuana for Dravet syndrome] I called Jason David that day,” she said, adding that she cried while watching David share his story on the Discovery Channel program “Weed Wars.”

“I was really curious about it,” she said.

Cooper Brown with his dog Lou July 2013 -- Photo courtesy Rebecca Brown

Cooper Brown with his dog Lou, July 2013. (Photo /Rebecca Brown)

Officially diagnosed with Dravet syndrome about a year ago, 15-year-old Cooper had his first seizure when he was 5 months old. Brown says over the years Cooper has tried “just about every epilepsy drug at least once,” and at one point was on 27 different medications.

But as Cooper began going through puberty and dealing with fluctuating hormones, Brown says his medicines weren’t working and Cooper went from being “very controlled to out of control.”

Once Cooper’s doctors agreed to prescribe him marijuana, Brown was able to connect with a grower in Michigan who would be able to provide cannabidiol. Brown says Cooper has become his “happy old self” again since he began using medical marijuana about a year ago.

“Before this all started we were basically prisoners in our home,” she said, explaining that their home was generally free from triggers that would result in Cooper having a seizure. Brown says Cooper now not only has fewer seizures, but he is happier, sleeps better, and using cannabidiol “has given him opportunities that had been taken away.”


Pediatric medical marijuana laws

Though Jayden and Cooper qualify for the use of medical marijuana since they live in states that have legalized the substance, children in other states are unable to try the therapeutic drug even though they have the same medical condition.

Luella Johnson is one of those children. The 3 1/2-year-old began having seizures when she was 9 1/2 months old. After months of seizures, Luella was eventually diagnosed with Dravet syndrome.

Though Luella’s father, Jim Johnson, says she has a mild case of Dravet syndrome and does better than 90 to 95 percent of other children with the medical condition, he says her case is still pretty severe. Johnson says that on average, Luella has a seizure every five days.

“Luella has tried and failed several epilepsy medications and even changed her diet,” Johnson says, but nothing seems to work for kids with Dravet syndrome as well as marijuana.

“When it comes to my daughter, I’m pro-anything to help her,” he said.

“If you’ve seen my little princess go through one seizure,” you would support allowing her to try using marijuana for treatment, Johnson says.

Marijuana has been legalized for medicinal purposes in 19 states, with legislation pending in at least five other states. David says medical marijuana needs to be legal in all 50 states so other children can benefit from its use.

Luella Johnson. (Photo/Jim Johnson)

Luella Johnson. (Photo/Jim Johnson)

Minnesota, where Luella lives, is one state where medical marijuana legislation is still under debate. Unlike New Jersey, which made it difficult for children to obtain medical marijuana, the proposal circulating in Minnesota intentionally allows children to qualify for the program, said Heather Azzi, political director for Minnesotans for Compassionate Care, a medical marijuana advocacy group.

“Children suffer from the same illnesses as adults,” she said, adding that they need to be protected, too.

David shared the tragic story of 2-year-old Nolan, a child with Dravet syndrome, whose mother was trying to uproot her family in North Carolina and move to California, where medical marijuana is legal. Sadly, “she never made it,” David said.

Brown agreed that more states need to legalize medical marijuana and added that as more and more states legalize the drug, the federal government will have to listen to the patients.

“Pretty soon we’re going to be a majority,” Brown said, adding that many families are moving “in droves” to states such as Colorado so they can apply for pediatric medical marijuana use.

She said she didn’t understand why marijuana was classified by federal officials as a Schedule I drug — meaning it’s thought to be highly addictive and lead users to try other drugs — or why the federal government wastes resources arresting people in states that have legalized marijuana.

“Heroin and Vicodin are much more dangerous,” she said, adding that marijuana “is such a great plant that can help so many people… Case after case after case it helps people.”


Child endangerment

After CNN shared Jayden’s story, David says a local reporter approached him about doing a story, as well. David agreed, hoping that sharing his story with more people would result in the education of the American public that marijuana is not the dangerous drug it is often made out to be. But instead of sharing Jayden’s story, the journalist reported David to Child Protective Services.

Jayden was never taken away from his father, since David was able to prove he had all of the necessary documentation for Jayden’s controversial medicine, but he says he wondered why Child Protective Services never made a visit to his home when his son had been taken by ambulance 45 times and was taking more than 20 different pharmaceutical drugs.

Documentation or not, the fear of having one’s child taken away causes some parents to question whether the drug is worth it. The Browns, for example, feared they would be charged under federal law for providing medical marijuana to their son. Despite all of the risks, Brown says she and her husband opted to go ahead and give their son cannabidiol with the hope it would work for Cooper.

Brown said she sometimes wonders what her son’s life would be like if he hadn’t been able to take cannabidiol, and what his life would be like if she had given it to him sooner.

“What would his life had been like if this was our first option instead of our last resort,” she said.

Another concern lawmakers, doctors and law enforcement have is the possibility that other young children could get into the medical marijuana supply. Brown has another son and says she has never been concerned about someone other than Cooper getting into the medical marijuana supply.

“In our family, we look at this as medicine,” she said. “We have lots of medicines around that are more addictive and more dangerous.”

Johnson agrees. With three other young children at home, he says cannabidiol would be one of the safer medications his children could possibly get into.