‘I can be myself’: Youth FASD support program expands in Yellowknife

Lois Anderson is doing things her parents say they never expected.

The 17-year-old Yellowknife teen has taken on everything from learning about improv acting to taking part in a creative writing workshop at the NorthWords Writers Festival.

Anderson is among a growing group of young people with Fetal Alcohol Spectrum Disorder (FASD) who are gaining independence through the 4Y program by helping them transition into adulthood.

Created last June, the program has grown from three to 12 participants, and there’s a waiting list, according to Foster Family Coalition staff.

“I just feel like I can be myself,” said Anderson, who joined the group last September. “I don’t have to hide anything…. It just taught me to be a little bit more independent.”

The Foster Family Coalition of the N.W.T. launched the 4Y program last June after foster families identified gaps in services for young people with FASD who are transitioning out of foster care.

The program pairs each youth with a navigator or coach to learn life skills and reach personal goals — anything the youth is interested in, like getting a job, saving up for something they desire, or getting ready for post-secondary education and living on their own.

Funding from the Child’s First Initiative last November helped the program gain a youth space and fund five part-time staff. The program is now open to any youth with FASD in Yellowknife.

“It’s really cool to see like when we do group activities, like all of the relationships that have been built between the participants,” said Korry Garvey, a former 4Y coordinator who says the program has turned into a community.

Pandemic leads to challenges

Prior to the coronavirus pandemic, the program held weekly improv acting nights, music workshops and pizza nights. The youth collaborated on a film for the Dead North Film Festival this year. (Read more…)

CanFASD: Putting Evidence in Women’s Hands – Alcohol and Cannabis Use When Breastfeeding

Two updated resources are available about alcohol and breastfeeding: a research update from CanFASD Alcohol and Breastfeeding and a brochure from Best Start Mixing Alcohol and Breastfeeding. They both illustrate how little research there is available, and how public health messaging directed to new mothers has changed over time.

The public health message currently offered to mothers is that it is safest not to drink alcohol when breastfeeding and if one chooses to drink, to avoid drinking near the time of breastfeeding, so that infants are exposed to the very least amount of alcohol. Some recent studies about alcohol use when breastfeeding have not found negative effects for infants – and instead, have found that low level drinking during breastfeeding was not associated with shorter breastfeeding duration or adverse outcomes in infants up to 12 months of age. These adverse outcomes included effects on infant feeding and sleeping behaviour, as well as developmental outcomes.

Yet, infants cannot metabolize alcohol in the same way as adults, and exposure to alcohol places them at risk of potential alcohol-related harm, in the short, if not long term. As a result, the weight of decision-making about breastfeeding and drinking alcohol rests on women. What is low level drinking, and how can one assess the many confounding factors related to alcohol’s effects – sex, genetics, nutrition, use of other substances, etc.? All of these issues are in play for their own, and their infant’s health.

Similarly, in light of cannabis legalization, more attention has been placed on the impact of cannabis use on breastfeeding. As with alcohol, initial public health messaging focussed on the studies that showed risk. But, a recent review of the literature led by Dr. Alice Ordean of St Joseph’s Health Centre in Toronto, found only two articles that addressed the impact of postpartum cannabis use by lactating women that provided developmental outcomes for infants. (Read more…)

Mental Health for Individuals with FASD

When we talk about mental health for individuals with FASD, we often talk about the mental health issues people with FASD commonly experience. But it is important to remember that mental health more than mental illness. Our mental health includes our emotional, psychological, and social well-being. It affects how we think, feel, and act. It also helps determine how we handle stress, relate to others, and make choices. Mental health is important at every stage of life, from childhood and adolescence through adulthood.”

For individuals with FASD, it can be difficult to develop the skills you need to maintain good mental health. There are a number of things that might be a barrier to you achieving good mental health, such as your personal challenges, stigma, and lack of services available. But there are ways that you can work to improve your mental health despite these barriers. Below are 5 strategies that you can use!

1. Focus on your strengths

Identify your strengths. Find things you are interested in, that you do well, and that you’re talented at. Work to grow your strengths by practicing these skills and applying them to your daily life.

If you don’t know what your strengths are, look at the information from your professional diagnostic assessment or ask your friends and family what they think you do well.

2. Develop good coping strategies

Coping strategies are the things you do to calm yourself down when you start to feel overwhelmed. Figure out healthy ways that you can cope with feelings of anger, stress, anxiety, or sadness. Healthy coping strategies will look different for everyone. Your coping strategies might include deep breathing exercises, doing a physical activity, getting creative, or something else unique to you.

Remember: drinking alcohol and/or using substances are not healthy coping strategies.

(Read more…)

Inside the Lockdown Bubble

Blog post from a parent of a child with FASD who discusses the current situation at home.

“It’s been two months now since our teenage son with FASD has been out and about. No school. No weekend visits to the charity shops. No seeing friends and family. Just the occasional dog walk. He’s had, if we’re honest, probably too little exercise.

The days now are gentle, rolling one into the other. We are not attempting home schooling. We are, here inside our bubble, just gliding now through this time of quarantine and lockdown.

He’s adjusted to the lack of daily treats from the shop that used to be waiting for him as he returned home from school in the taxi. He’s adjusted to the need to avoid certain rooms if parental work zoom calls are happening. He has absorbed the unabsorbable – that ‘out  there’ is a virus that we are trying to avoid. He knows we wash hands. He accepts that when a package arrives one of us takes it outside and removes the packaging and that we must wash hands again.

We believe we had an early introduction to COVID-19 in our home – but we will never really know. My last post was fairly grim on that point. Apologies. It was a strange, strange time. We learned later that a family in our local FASD support group (whom we had seen days before our eldest became symptomatic) came down much harder with it than we did in our house. Worries were running high. (Thankfully, they made it through, though it was scary.)

Our son with FASD was shielded from those worries. We didn’t tell him that’s what we thought his older brother and I had…that maybe that was what explained his back pain or his dad’s unusual symptoms. He is still shielded as much as possible from the extent and horror of this thing.  We turn off the news when he comes into the room. We don’t discuss this novel coronavirus when he’s around. He’s too prone to anxiety, so we do not fuel it. We just keep chugging on.”

(Read more…)

Mental Health for Caregivers of Individuals with FASD

Happy Mental Health Week! Today we are exploring mental health from the point of view of caregivers of individuals with FASD.

Stress is a normal response to pressure or demands that our body finds threatening. A certain amount of stress in our daily lives is normal. However, experiencing high levels of stress over long periods of time can negatively impact our mental health and physical health and can lead to a number of potential health issues.

It is well documented that caregivers of children with disabilities experience increased levels of stress. But caregivers of children with FASD have been shown to experience higher levels of stress than most people. In a 2009 study, 92% of primary caregivers of individuals with FASD had clinically elevated stress levels. These number show that finding effective ways for caregivers to manage stress is especially important for this population.

Practicing self-care is one way that we can help to reduce stress and improve our mental health. What’s more, research shows that caregivers who are confident in their ability to practice self-care show higher rates of the family needs being met, higher rates of personal satisfaction, and lower levels of parental distress.

Self-care strategies for caregivers of individuals with disabilities have been well researched, but it wasn’t until just recently that research was published on what self-care looks like for caregivers of individuals with FASD. The researchers asked 46 caregivers of children with FASD what their strategies for self-care were:

  • 73.9% reported being present, which involves an activity focused on time alone
    (i.e., meditation, yoga, spending time in nature, “me time”, prayer)
  • 67.4% reported maintaining physical health
    (i.e., exercise, walk, sleep, eat healthy)
  • 54.3% reported seeking social supports, either in the form of friends and family or professional supports
    (i.e., support groups, counsellors, partners, friends)
  • 39.1% reported engaging in hobbies
    (i.e., reading, gardening, cooking)
  • 28.3% reported treating yourself to small luxuries
    (i.e., pedicures, taking a bath, eating chocolate)
  • 19.6% reported consuming media
    (i.e. movies, TV shows, music)
  • 6.5% reported seeking information, which involved educating themselves or researching solutions
    (research, internet browsing, online seminars)

(Read more…)

FASD and Mental Health for Professionals

Happy Mental Health Week! Today we’re looking at mental health and fetal alcohol spectrum disorder (FASD) from the point of view of health professionals.

It is estimated that 4% of Canadians have FASD. This is a lifelong disability that impacts the brain and body of people exposed to alcohol during fetal development. But we also know that targeted supports and services can help improve outcomes for individuals with FASD.

One in five Canadians experience challenges with mental health. This proportion is high, but the stats are even higher for individuals with FASD. Researchers have shown that approximately 90% of people with FASD experience mental health issues. These numbers show that mental health is an extremely important consideration when discussing needs, supports, and resources for individuals with FASD. At times it can be difficult to serve individuals with FASD because they often live with many overlapping challenges and complicated environmental situations. These issues can lead to frustration for both the individual with FASD and their mental health care provider.

So how can mental health professionals better support individuals with FASD in their practice?

Increase their knowledge and understanding of FASD

FASD is still a relatively new diagnosis that many Canadians are unfamiliar with. Health and social service professionals often aren’t given adequate training on FASD, despite it being one of the most prevalent developmental disabilities in Canada. Training programs for mental health professionals need to make sure that they provide specific information and strategies on how to best support individuals with FASD. In the meantime, professionals should seek opportunities for further training and professional development to ensure they have the knowledge to best recognize, treat, and support people with FASD.

Recognize the signs of FASD

FASD is often undiagnosed or misdiagnosed because symptoms can be hard to recognize, and diagnostic services are limited. With many individuals with FASD coming into contact with mental health services, mental health professionals are in a prime position to kickstart the diagnostic process. (Read more…)

Acceptance and Commitment Therapy for Caregivers

A member of the CanFASD Family Advisory Committee recently had the opportunity to participate in a research program that gave caregivers of individuals with FASD the skills to better manage the challenges and stresses of their daily lives using Acceptance and Commitment Therapy (ACT).

The goal of the research project was to measure the impact ACT training has on caregiver stress and well-being, and to understand if this approach is feasible and beneficial to families of individuals with FASD. The research is being conducted in Toronto by the Centre for Addiction and Mental Health (CAMH) and the University Health Network (UHN).

Mary Ann Bunkowsky, a member of the CanFASD Family Advisory Committee, had the opportunity to participate in this research project. She attended one evening session and one full day workshop on ACT Training.

Acceptance and Commitment Therapy helps individuals to struggle less with difficult things in their lives and mindfully connect with things that are most important in a way that is loving and respectful. ACT training gives individuals the skills to develop new and mindful relationships with their thoughts and feelings, rather than seeking to change or eliminate unwanted thoughts.

Canadian researchers have found that ACT training has alleviated levels of depression and stress in caregivers of individuals with neurodevelopmental conditions. However, this is the first research study to explicitly look at the impacts of this training on caregivers of individuals with FASD.

Mary Ann found this program extremely valuable and is looking forward to implementing the skills she learned during these trainings in her own family.

“The more we care for ourselves the better we can be for our families… My experience with ACT has enriched my life and given me some focus.”

The therapy training teaches individuals mindfulness, so staying in the moment. It also places a strong focus on reframing the mind to recognize that nothing is inherently happy. (Read more…)

Finding isolation tough? One N.W.T. foster mom shares her challenges and tips

Like most parents, Claire says her top priority during the COVID-19 pandemic is making sure her kids are happy and safe.

But that’s a difficult task when you’re a foster mother to five high-needs children under the age of 11. The kids in Claire’s care have faced multiple traumas in their short lives. Some have fetal alcohol spectrum disorder. Others have trust issues.

Taking care of her kids can be challenging in the best of times. Add in a pandemic where both Claire and her husband are working from home and it can be overwhelming.

“Nobody really had a plan. Nobody knew how to do what they’re going to do. We kind of just were going with the flow,” she says.

Now, more than a month since schools closed, Claire’s family has found a rhythm, which includes lots of time outside.

The kids get up at 8 a.m., have breakfast and brush their teeth.

“I try to get them to do their academics either right after or they go outside and burn some energy and then they do their academic booklet for a couple hours,” she says.

“I try to do my phone calls through that time. My husband and I kind of take turns.”

Then it’s lunch, after which the whole family goes for an hour walk.

“Depending on the day either the kids come back and do some baking or they clean or they play in the garage. Then we cook dinner together and then go for another walk.”

Claire says while she expected some behavioural changes with the new routine, her kids have been thriving.

“A lot of my kids have severe trauma and they’ve actually been doing really well because they’re being fed every day, they’re in a safe place and they don’t have the pressures of school.” (Read more…)

Alcohol, Memes, and COVID-19

In light of the current global pandemic, you may have noticed the increased sharing of alcohol-related memes on your social media. Earlier this year, we talked about #winemom culture and how normalized alcohol use can be an important tool for how women create their identities as mothers and women.

Right now, these similarly toned joke posts on social media about increased alcohol consumption show how difficult it can be to cope during a period of social isolation, stress, and uncertainty. Recent global data have suggested that alcohol sales for beer, wine, and spirits has risen by a staggering 291 percent, generating research interest in investigating the effects of social isolation on alcohol use.

The Canadian Centre on Substance Use and Addiction recently released data suggesting that approximately 18% of Canadians have increased their alcohol use while staying home because of coronavirus. Common reasons for the increase in alcohol consumption include a lack of a regular schedule, boredom, stress, and loneliness.

One way people seem to be coping with these challenges is through humor on social media – including Facebook, Reddit, Twitter, Instagram, and TikTok.

Media, such as social media, plays a large role in the way that alcohol use is normalized. Culturally, alcohol is part of how we relax, how we celebrate, how we reward ourselves, and how we manage anxiety in difficult situations.

Although it is difficult to know if women are, in fact, drinking more right now, we do know that alcohol sales have risen in Canada, and that women of childbearing age are drinking more in general. These increased rates of alcohol consumption are related to many factors, including targeted alcohol advertising to women (often referred to as the “pinking” of the alcohol industry) and women’s embracing of traditionally masculine styles of drinking. There is also the idea that women drink to reduce their stress (e.g., a glass of wine at the end of the day). (Read more…)

Coronavirus Disease 2019 – People with Disabilities

COVID-19 is a new disease and we are still learning how it spreads, the severity of illness it causes, and to what extent it may spread in the United States.

Disability alone may not be related to higher risk for getting COVID-19 or having severe illness. Most people with disabilities are not inherently at higher risk for becoming infected with or having severe illness from COVID-19. However, some people with disabilities might be at a higher risk of infection or severe illness because of their underlying medical conditions. All people seem to be at higher risk of severe illness from COVID-19 if they have serious underlying chronic medical conditions like chronic lung disease, a serious heart condition, or a weakened immune system. Adults with disabilities are three times more likely than adults without disabilities to have heart disease, stroke, diabetes, or cancer than adults without disabilities.

You should talk with your healthcare provider if you have a question about your health or how your health condition is being managed.

Disability Groups and Risk

If you have one of the disability types listed below, you might be at increased risk of becoming infected or having unrecognized illness. You should discuss your risk of illness with your healthcare provider.

  • People who have limited mobility or who cannot avoid coming into close contact with others who may be infected, such as direct support providers and family members
  • People who have trouble understanding information or practicing preventive measures, such as hand washing and social distancing
  • People who may not be able to communicate symptoms of illness

Protect Yourself

If you or someone you care for are at higher risk of getting very sick from COVID-19, take steps to prevent getting sick. In addition to practicing everyday preventive actions, people with disabilities who have direct support providers can help protect themselves from respiratory illness in the following ways:

  • Ask your direct support provider if they are experiencing any symptoms of COVID-19 or if they have been in contact with someone who has COVID-19
  • Tell your direct service provider to:
    • Wash their hands when they enter your home and before and after touching you (e.g., dressing, bathing/showering, transferring, toileting, feeding), handling tissues, or when changing linens or doing laundry. Learn more about proper handwashing.
    • Clean and disinfect frequently touched objects and surfaces (e.g., counters, tabletops, doorknobs, bathroom fixtures, toilets, phones, keyboards, tablets, bedside tables), and equipment such as wheelchairs, scooters, walkers, canes, oxygen tanks and tubing, communication boards and other assistive devices. Refer to CDC’s General Recommendations for Routine Cleaning and Disinfections of Households.

(Read more…)