fasd life's journey

CHOOSING YOUR PATH

We seek balance in our services and our journey. Our direction is determined by the experiences we share and the lessons we teach each other. Collaborating in joy, courage, and understanding, our stepping stones are built on hope.

Dignity & Respect

All people have basic rights.  We at Life’s Journey strive to ensure equality and dignity through strong advocacy and a commitment to provide consistent, responsive, reliable, lifelong services.  We empower inclusive environments and celebrate the diverse voices of our participants, staff, and community members.

Life’s Journey strives to create safe and secure environments that promote health, comfort and wellness for all.  We support inclusive homes and communities for our participants through individualized programming and planning.  We provide Wellness programming, clinical services and cultural teachings to balance mind, emotions, body and spirit.  We value safety for everyone. We strive to create a responsive culture of self care, safe work practices and ongoing proactive measures.

Relationships

At Life’s Journey our focus on building nonjudgmental and encompassing relationships has contributed to respectful, compassionate, productive, and dignified associations.  Our foundation of collaboration contributes to quality service as we work together to foster a sense of belonging, acceptance and empowerment in our communities.

Walking together

For nearly two decades, this Manitoba organization has been helping people with FASD build a life they’re proud of

Rosetta Bignell’s life used to be very different from how it is now — and looking back, she’s proud of how far she’s come.

Growing up, Bignell describes herself as “a bad kid.” She had challenges at school. She threatened staff at her group home after being taken into child and family services for a few years beginning at age 12. She tried to run away.

It was also around that time she was diagnosed with fetal alcohol spectrum disorder (also known as FASD), which affects the brain and body of a person exposed to alcohol in the womb. Its effects vary, but commonly include difficulties with things like impulsivity and understanding consequences, the Canada FASD Research Network says .

After Bignell was diagnosed, she says she started seeing a therapist, but her challenges continued.

Eventually, she was drinking almost daily and getting into trouble with the law. She developed Type 2 diabetes and became a heavy smoker. Bignell dropped out of school in Grade 10 and then, at 23, had a baby who relatives stepped in to raise.

She also struggled with anxiety, which people with FASD have an increased risk of developing, the Canada FASD Research Network says.

“I didn’t get the help I needed, that I wanted,” says Bignell, now 41.

Safe place to call home

But in her late 20s, her path changed when she connected with Life’s Journey, a Manitoba organization that works with people who have neurodiversities including FASD and autism spectrum disorder.

Because of challenges recognizing and diagnosing FASD, it’s hard to know exactly how many people in Canada have it.

The most recent data available from Health Canada estimates in 2019 the rate was about 0.1 per cent among children and youth, but much higher — 1.2 per cent — for Indigenous people in that age group living off reserve.

And while those numbers include the vast majority of kids and youth, they don’t include those living on reserves, in foster homes or in institutions.

The FASD research network says the actual prevalence rate across all age groups in Canada is likely closer to four per cent of the population .

Over time, Bignell built relationships with staff at Life’s Journey, who listened as she talked about her life and helped her learn how she could approach its challenges.

She also moved to Winnipeg from her home on Opaskwayak Cree Nation — a community about 520 kilometres northwest of the city — after the organization found her a place to stay through its residential program, which Bignell has now been using for over a decade.

Of the handful of homes she’s lived in, the south Winnipeg house she’s in now is her favourite. It’s quiet; a safe place to call home.

In the summer, she tends to tomatoes and squash in the backyard garden, which helps keep her mind at ease. Residential support mentors are on shift most of the day to help Bignell and her roommate with things like getting to appointments and remembering to take medication.

Those kinds of tasks — which involve organization and planning ahead, or remembering how to do something, even if it’s been done before — are also among the challenges people with FASD can face.

Roughly 275 people use some kind of supported housing through Life’s Journey. Most participants’ rental costs are covered through provincial income support programs, though a few people pay rent adjusted to their income.

Bignell says she’s a different person now: more careful and caring, better at getting to the bottom of what she’s feeling and finding ways to cope.

And thanks to the help she’s gotten with planning balanced meals and setting exercise goals — reminders for which are stuck on the kitchen fridge — she’s also healthier.

Two years ago, she was able to stop taking medication for her diabetes. Before that, she quit smoking. It’s been even longer since the last time she drank. Now she’s focused on online classes she’s taking through an adult learning centre.

It’s a transformation she says would probably surprise her younger self.

“I’m much happier anyways, [than] what I was from before — much happier with my life,” she says. “I like me now. I love me more.”

Offering support, ‘no matter what that looks like’

Life’s Journey opened in 2005 to support people with FASD, including those transitioning from child and family services. The organization is also known as Miikana Pimatiziwin — a combination of Ojibway and Cree words that together mean “path to the good life” — and has expanded to offer housing, wellness and outreach support and Indigenous cultural services like drumming groups and ceremonies.

Its spectrum and rural connections programs also provide support for people with an FASD diagnosis — or a social history consistent with one — who aren’t eligible for government programs.

Today, roughly 585 people use the organization’s programs across Winnipeg, the southwestern Manitoba city of Brandon and the southeastern city of Steinbach. Participants don’t need a full diagnosis to access its services.

And because the effects of conditions like FASD vary so widely, so do the experiences of each person.

Some have challenges with executive functioning, including organizing their thoughts or performing daily tasks. Many struggle to do things like budget money. Others contend with issues like homelessness, addictions or involvement with the justice system, says Nicole Cruickshank, who runs an outreach program at the organization.

But whatever circumstance a person is in, the goal is always the same: meet people exactly where they are and help them get to where they want to be.

“We really try to make sure that people understand that we’re here to support them, no matter what that looks like,” Cruickshank says.

For some participants, that support comes through Indigenous spiritual care services, which can be the first time they’re able to connect with their culture.

About 80 per cent of the organization’s participants are Indigenous, and many were separated from their biological family by the child welfare system, says Debbie Cielen — the nookomis, or grandmother — who runs the Indigenous spiritual care services department.

In Manitoba, about 90 per cent of the roughly 10,000 kids in care are Indigenous. One 2014 study suggests kids with FASD could make up a disproportionate percentage of those in care in the province.

Cielen, whose spirit name is Mino Gaagii Kido Mikinak, or Good Talking Turtle, says part of her work is also to build trust and create an environment where people feel comfortable sharing what they’re going through, even — and especially — if it’s something difficult.

She says it’s crucial “that participants not be afraid to tell us that they’re struggling, and that they’re not perfect and that things are gonna happen.”

“They’re learning, just like all of us.”

Building trust

David Fehr was taken into the child welfare system at age six and diagnosed with FASD a few years later.

Fehr, whose biological mom is from Sandy Bay Ojibway First Nation, says he’s been able to connect with his culture over the last few years through Life’s Journey. He participated in ceremonies and was given a spirit name: Strong Talking Wolf, or Zoongde’e Gaagii Kido Ma’iingan.

But that relationship took time to build.

By the time he connected with the organization in Winnipeg a little over a decade ago, he felt like he’d had to fight his way through life, from being picked on at school, to bouncing between a dozen foster homes in a year after being apprehended, to being homeless after aging out of the child welfare system.

“Nobody knew how to deal with me,” says Fehr, now 32.

“It was mainly the anger and just wanting to know more about it. Like, I got diagnosed with something … not even knowing what it was.”

He had also learned to be wary of his tendency to trust people, which got him in trouble more than once — including an incident where he ended up in jail after getting caught up with the wrong person and breaking into a house.

On top of having challenges with impulsivity and understanding consequences, people with FASD can often have difficulty with judgment, which the Canada FASD Research Network says can increase a person’s risk for involvement with the justice system if their circumstances aren’t understood and addressed.

Fehr says he started drinking to cope with his feelings, a habit that partly contributed to repeated stints in jail over a couple of years. But for Fehr, jail was also something he could rely on for meals and a schedule.

Outreach head Cruickshank says identifying the root causes of people’s challenges — and figuring out which purpose their behaviours or habits are serving in their lives — is key to helping them uncover their priorities and what’s really important to them.

“It’s [about] kind of digging through that to find out what that is, and really trying to nurture that to help that grow,” she says.

As Fehr started to uncover those priorities for himself, he says his life changed. He got back on his feet following his last release from jail a few years ago, and reconnected with his biological mom and sisters. He found work through Life’s Journey, helping with maintenance and cultural programming. More recently, he stopped drinking.

“Just talking one-on-one with people, I found, was the biggest coping mechanism,” he says.

Access through understanding

Sometimes people with FASD only get connected with needed support once they’re already involved with the justice system. In a way, it’s their last chance once every other mechanism in society has failed, Cruickshank says.

But there are also challenges connecting people with support before it gets to that point, she says. Many don’t have a clear understanding of the resources available for people with FASD or how to navigate social services.

There’s also still stigma around FASD, particularly for mothers — which makes some hesitant to seek an assessment for their children. And alcohol use during pregnancy itself isn’t actually the problem, Cruickshank says, but a symptom of larger issues like trauma and addiction.

“It’s really unfortunate, because it provides a barrier … to receiving that diagnosis and receiving treatment,” Cruickshank says. “But historically, we don’t treat the mothers very well when they do come forward.”

And that treatment rooted in understanding and non-judgmental support can make all the difference.

For Bignell, it’s helped her get to a point where she’s working on her education with the hope of one day finding a job and supporting herself.

For Fehr, it’s meant reconnecting with his family — including newly found nieces and nephews — and thinking about what he might like to do next, like going to school to become a support worker.

“This way I can reach out [with] my story, maybe, to somebody else,” he says.

“I want to help people, is what it comes down to.”

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Real Stories: Living with FASDs

What to know.

Fetal alcohol spectrum disorders (FASDs) are disabilities that last a lifetime. People with FASDs can have behavioral, intellectual, and neurological problems. FASDs can occur when a developing baby is exposed to alcohol during pregnancy.

Heather and her husband, Jason, adopted Brenna and her three siblings from foster care. Weighing just 4 pounds and 13 ounces at birth, Brenna was so small that she came home wearing a doll's clothes.

For years, Brenna's parents struggled to get her accurately diagnosed. She was slow to reach many milestones as an infant. Brenna also participated in early childhood services for speech and physical therapy. She was small for her age throughout elementary school.

Brenna also struggled academically. She had trouble staying on task, getting easily frustrated, and having outbursts and tantrums both in school and at home.

It was also difficult for her to understand concepts such as time, money, and organization. "When Brenna was in elementary school, she preferred to play with preschoolers rather than kids her age," her mother, Heather, recalls. She also took everything literally. When she said, "her classmates might be talking behind her back, Brenna said that wasn't true because she would hear them." When Brenna said she thought she would hear them, she took it to mean they would be behind her back talking.

Benefits of a diagnosis

Brenna's older sister was the first of the children to be diagnosed with an FASD. Brenna was diagnosed later at the age of 12 years. Deciding if a child has an FASD takes both a physical and developmental evaluation.

There is no biological test to diagnose FASDs. Clinicians must assess a child's exposure history, behavioral and intellectual function, as well as look for neurological and physical features. Also, many other disorders have similar symptoms which must be ruled out. Among several other tests, Brenna's evaluation included an independent living/life skills test.

According to Brenna's mother, "Getting the diagnosis helped understand where Brenna was coming from." Heather said that it helped them reframe the challenges they faced. It wasn't that Brenna was being defiant or wouldn't do things they asked of her. Rather, Brenna couldn't do it or lacked the skills and ability. They had to give Brenna the space and time to do it.

Heather commented, "It was helpful to get the diagnosis since it made resources in our area available to us, including a support group. Being part of the support group has helped us learn more about FASDs. It is a relief to know there are other children with similar issues. For example, there are others who must be reminded of personal hygiene, even though they are almost in high school." The diagnosis also explains why Brenna could be disruptive in school; the classes might be too hard for her to follow.

In addition to the support group, the diagnosis helped Brenna get access to local services. Having a diagnosis also ensured the school system had the information they needed to best support her.

Increasing awareness in her community

Brave and cheerful, Brenna has been instrumental in increasing awareness about FASDs in her school. After her diagnosis, she proudly wore her FASD T-shirt depicting a strong woman and handed out buttons and flyers about FASDs. Her mother says, "I was a bit worried, wondering if she would be able to handle the comments or teasing. But Brenna did great!"

Brenna is a kind and happy teen. She loves helping people and cares about her friends and is always checking up on them. She also calls and checks on her grandmother daily.

Brenna enjoys playing the piano and being in the choir. She also recently took up junior varsity color guard and is looking forward to the competitions.

Getting a diagnosis

Taylor was diagnosed with an FASD in 8th grade. Before he was diagnosed, he struggled and had been misdiagnosed with attention-deficit/hyperactivity disorder (ADHD) in first grade. He lied, took things in school that did not belong to him, and recalls being disconnected and very frustrated.

In the 8th grade, Taylor took a pocket knife to school and was suspended. Since it was a weapon, he had to go through the First Offender's Program and seek counseling. The counselor noticed a gap between action, reaction, and consequences, and had Taylor tested. Taylor was finally diagnosed with an FASD.

When Taylor was born, his birth mother had disclosed to the doctor that she was dealing with alcohol use disorder while pregnant. This information from Taylor's adoptive parents, Mark and Cathy Allen, was helpful to finally diagnose him with an FASD. After Taylor's diagnosis, the Allen family connected with FASD United (formerly NOFAS) and the Kennedy Krieger Institute for help.

Misunderstood behaviors

Taylor has struggled with many issues. This includes difficulty maintaining attention, inability to manage time, poor problem-solving skills, inability to learn from consequences, and social awkwardness. He has also suffered from anxiety and depression. Cathy said, "Taylor has the outward appearance of any 23-year-old since he is on the high functioning end of the spectrum. So, his FASD behaviors are often misunderstood, causing Taylor extreme anxiety and depression."

After much struggle and perseverance from Taylor and his family, Taylor earned his associate's degree in electronics from a trade school. Taylor currently works as a lead custodian at an area airport. He enjoys playing and watching baseball, tinkering with computers, reading, and spending time with his girlfriend. Taylor hopes to further his education and he is working toward living independently.

In his own words

"We were like so many other families out there. We were looking for guidance and trying to find counselors, practitioners. Through NOFAS, I was able to have a voice and speak out. By talking with others at the beginning of their FASD journey, we are healing and helping ourselves. We are reminding ourselves that we are not alone.

My mom talks to families that call her all the time. They are just trying to get information, to understand, to have a shoulder to cry on. I hear these conversations. They are so emotional. I walk by and listen and I can't help but tear up because I was there with my parents. I know what it was like for my mom when she made that call to Kathy [Mitchell, FASD United (formerly NOFAS)].

Now, NOFAS has empowered me. Several times a year they give me the podium to speak and tell my story. Getting up in front of a crowd to speak about FASD takes away the control that this disability had over me. I didn't know why I did a lot of things I used to do. But with this, I do know why I am doing it.

For the past year, I have been leading a teen group with the help of Kathy and my dad. We mostly talk about what it's like to be us, our day-to-day life, things we run into. We get into how bad it feels to be misunderstood, how we just wish people would understand us. At the end of the day, no matter how bad, we are all smiles because we've met people just like us."

Alexander "Sasha" Cook was adopted in 1997 at the age of 5. Now at 23, Sasha and his mother, Melissa, share his story.

As a child and young teen, Sasha faced numerous difficulties. These included learning problems and struggles with social relationships such as interacting with classmates. It also included difficulty with team sports since rules were too abstract, and trouble handling everyday things in life. He still remembers that being with his fellow students was "no fun."

Sasha had many evaluations and was diagnosed with multiple disabilities. Knowing he was exposed to alcohol before birth is what helped his family and doctors best understand his challenges. Typical milestones that other children reached and took for granted seemed out of reach for Sasha.

Coaching, adapting, and modifying expectations

Despite the odds and with support from his family, friends, church, and school community , Sasha has come a long way. Sasha has shown great potential, has many strengths, works hard, and clearly shows his resilience and depth of character. "We did the majority of behavior modification at home. This includes having structure and understanding that this is not a moral disorder but a brain-based disorder," explains Melissa.

"It is constant coaching, adapting, and modifying expectations for them, realistically...matching their potential with their gifts and strengths. As parents of children with FASDs, we are their external brain. Our children can be successful in a safe, structured, under-stimulated environment that builds on their capabilities to help through the challenges."

Employee of the month

Sasha successfully completed high school and has been gainfully employed by a large national grocery chain since 2009. Over the years, Sasha has been given additional responsibilities by his employer and was recognized for his willingness to help others.

Sasha proudly shares details on the numerous awards he has received and his growing customer service skills. "I was excited to be Employee of the Month and now I've been promoted to work the cash register. I like the people who I work with."

Active member of the community

Following in his mother's footsteps, Sasha is an active member of the community. He understands his disability and helps bring support to others. For example, he answered questions about FASDs at a seminar hosted by the Georgia Department of Behavioral Health and Developmental Disabilities.

Sasha also provided information about FASD United's (formerly NOFAS) Georgia chapter. FASD United, a national nonprofit, is committed to preventing FASDs and supporting individuals and families living with FASDs.

As busy as Sasha stays, he still participates in fun activities. This includes playing the piano, playing tennis with the family, and participating in a church bowling league. "Sasha is an excellent bowler and has crafted his talent for 5 years," continues Melissa. "I have found that promoting physical activity through individualized sports are important tools to enhance a child's daily functioning." Sasha is a very well-rounded young man and receives great family support in all his endeavors.

"FASD has affected my life in many ways. I was born 6 weeks early and weighed 3 pounds, 11 ounces. As a child, I never knew what it was, but it was hard for me to make friends. I found myself feeling afraid of others.

"School was very hard for me, especially math and English. I couldn't comprehend them. I completed high school and tried college, but it didn't go well. Then I got a job.

"Working was hard. I didn't know what I wanted to do and I went from job to job. I couldn't hold on to a job. It was hard for me because I developed anxiety, depression, and an eating disorder. I still deal with that today.

"I do a lot of writing to express my feelings and that helps me. I also watch people very carefully to learn how to do certain things. I tend to read everything twice to comprehend what I am reading. For my anxiety, I avoid loud and crowded places. I always surround myself with people that I feel comfortable and safe with.

"I got involved with an organization called Al-Anon because I grew up in an alcoholic family. I do share my FASD story at the Al-Anon meetings. If there's one woman who is thinking about having a child and is drinking and hears my story, it's worth it.

"I want people to know that there is hope. I keep telling myself, if I can survive, others can too."

Find More Stories‎

Fetal alcohol spectrum disorders (fasds).

Fetal alcohol spectrum disorders (FASDs) are a group of conditions that can occur in a person who was exposed to alcohol before birth. FASDs are preventable if a baby is not exposed to alcohol before birth.

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Reflections from Manitoba: Supporting the Healing Journey

• First Online: 09 September 2022

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• Holly Gammon 4  

Part of the book series: Neuromethods ((NM,volume 188))

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Over the past 40 years, Manitoba has put considerable effort into understanding fetal alcohol spectrum disorder (FASD) and how to prevent it. Examining historical documents, talking with communities of interest, actively listening to those impacted by the disability, and reflecting on decades of personal experience reveal that prevention strategies have become increasingly effective. Messages intended to shame women, prevalent at the beginning of the journey, have gradually been replaced by approaches that are more understanding and supportive. By listening to and working alongside the individuals, families, and communities affected by FASD, governments can learn how to develop more effective approaches in the future. Changing the language and diagnostic terminology associated with the disability, developing a more comprehensive alcohol policy, and providing additional supports will result in an approach that is effective across cultures and that takes into account the trauma that many people with FASD have experienced.

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Acknowledgments

The reflections in this chapter have been shaped by many discussions, teachings, and gentle challenges to my thinking over the years. With much gratitude, I would like to acknowledge some of the people who have supported me over the years: Elder Velma Orvis, Elder Mary Wilson, Grandmother Debbie Cielen, Elder Robert Greene, Elder Wally Swain, Elder Karen Swain, Grandmother Mary Maytwayashing, Elder Wanbdi Wakita, Elder Pahan Pte San Win, Suzanne Mozdzen, Jacqueline Bedard, Mary Cox-Millar, Sonia Busca-Owczar, Maria Bromilow, Jill Isbister, Kathy Andrew, Susan Tessler, Teresa Brown, Melanie Muehling, and Ken Lamoureux, Candeilya Jackson, and Graham Wyllie.

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Dept. of Pediatrics and Child Health and Dept. of Biochem & Med. Genetics, University of Manitoba, Winnipeg, MB, Canada

Albert E. Chudley

Dept. of Biochem & Med. Genetics, Regenerative Medicine Program, University of Manitoba, Winnipeg, MB, Canada

Geoff G. Hicks

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Gammon, H. (2022). Reflections from Manitoba: Supporting the Healing Journey. In: Chudley, A.E., Hicks, G.G. (eds) Fetal Alcohol Spectrum Disorder. Neuromethods, vol 188. Humana, New York, NY. https://doi.org/10.1007/978-1-0716-2613-9_17

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DOI : https://doi.org/10.1007/978-1-0716-2613-9_17

Published : 09 September 2022

Publisher Name : Humana, New York, NY

Print ISBN : 978-1-0716-2612-2

Online ISBN : 978-1-0716-2613-9

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Red Shoes Rock

Global Voice for Prenatal Alcohol Exposure

Understanding FASD: My Journey and the Importance of Recognizing Its Organic Nature

My experience with Fetal Alcohol Spectrum Disorders (FASD) emphasizes the importance of understanding it as an organic issue. FASD is rooted in physical changes caused by prenatal alcohol exposure, leading to a wide range of challenges, including cognitive, mental health, and physical issues. Recognizing FASD as an organic issue shifts the focus from blame to support and accommodations, fostering a more inclusive and supportive community. By raising awareness, we can ensure that individuals with FASD receive the necessary care and support to lead fulfilling lives.

TODAY’S NOTE: I currently work with over 20 professionals and the top specialists in my health care system. You don’t get to the top without devastating REALITIES! – In Solidarity, Liz

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Published by jodeekulp.

Jodee Kulp, is an award-winning author, producer and advocate who works tirelessly to serve children and families of Fetal Alcohol Spectrum Disorders (FASD). Her behavioral work in understanding canine fear and applying it to helping adults gain life skills is momumental and parallels our work with EAGALA Equine Therapy. It will be exciting to watch this progress. - Chris Troutt, Papillion Center Current Projects include: Pearlz Work Embraced Movement PraiseMoves LIFT (Laughter in Fitness Training) LiveAbilities Red Shoes Rock. Stop FASD PawZup Life Stories View more posts

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Need a pick me up today? How about enjoying these beautiful pieces of art with an empowering message about dignity for individuals with FASD compliments of Life’s Journey Inc.!

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