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…)

First mobile app for caregivers of children with FASD reaches trial stage

In the summer of 2017, Christie Petrenko, an assistant professor and research associate at the University of Rochester’s Mt. Hope Family Center, and Cristiano Tapparello, a research assistant professor in the University’s Department of Electrical and Computer Engineering, teamed up to create the first mobile phone app for caregivers of children with fetal alcohol spectrum disorders (FASD).

Through previous research, Petrenko, who is a recognized expert on a FASD, knew of the many challenges parents and caregivers face: isolation the lack of access to specialized care, limited financial resources, the stigma associated with the disability, and ultimately the caregivers’ quest for readily available and scientifically sound information.

“Many families have little to no access to the kinds of information and parenting strategies that are most helpful in managing the behavior of children with FASD,” Petrenko says. “They also need support from others who understand their experiences.”

Caused by prenatal alcohol exposure, fetal alcohol spectrum disorders affect around 2 to 5 percent of school-aged children in the United States and can result in lifelong developmental, cognitive, and behavioral problems.

Previous studies have pointed out that available online information for parents of children with developmental disabilities may lack in quality, consistency, and readability. In the past two-and-a-half years, the duo has designed, coded, assembled and written the content for their mobile health intervention app, FMF Connect. Its name and content are derived from the scientifically validated Families Moving Forward Program, developed at the Seattle Children’s Research Institute and the University of Washington. The researchers took mock-ups of the app to seven focus groups across the country, and then followed up with two beta tests.

The FMF Connect app allows users to easily access five distinct components:

  • Learning Modules: training for caregivers
  • Library: fact sheets and resource lists with medically sound advice
  • Family Forum: a space for users to share advice and ideas
  • Notebook: a place to save personalized content
  • Dashboard: includes a customizable avatar that tracks progress through the Learning Modules and charts child behavior.

(Read more…)

NOFAS-UK announcing new projects and upcoming name change

Name change

NOFAS-UK will be changing its name to the National Organisation for FASD. This reflects a national shift in thinking. FASD is finally being recognised by the Department of Health and NICE as a spectrum that has less to do with what a person’s face looks like and more to do with how alcohol exposure in the womb impacts how the brain and body develops. Over coming weeks and months they will be rebranding and updating their website with a fresh new look.

They’re launching a public outreach campaign aimed at young adults

Thanks to a generous 3-year grant from the Sylvia Adams Trust, they are launching a new FASD prevention project, “Educating Young People about the Risks of Alcohol in Pregnancy” aimed at reaching young adults in the 15- to 25-year old range. They believe this next generation will be the one to change things.

They are launching this campaign in coming weeks via a new prevention-focused website that will include new resources, including an award-winning film by Frogspawn Film. This prevention campaign will be a positive, supportive public campaign targeted at young people, empowering them to spread the word about the importance of alcohol-free pregnancy and promoting healthy pregnancies. The project will include a national competition so that we can learn from and share ideas generated by young people. This project will have a heavy focus on social media.

The project will kick off at the end of April 2020, they have been invited to be part of a national campaign by a major media personality.

This project also will help develop and amplify the capacity of individuals with FASD, parents, carers and guardians to work with the media. It will help schools and local businesses to raise awareness of the risks of alcohol in pregnancy and increase the profile of FASD more generally. They will provide resources and materials that can be shared with pubs, with schools and with local media. They are establishing an advisory committee of young adults for this project. More soon!  (Read more…)

Aubrey Page: Military Life and as an FASD Caregiver

As a treatment-level foster parent in Ohio for 3 years, Aubrey noticed many of her kids had similar symptoms that were not trauma based. After one of her children was diagnosed with Fetal Alcohol Spectrum Disorder (FASD), her eyes were opened to the prevalence of this disability.

After a disappointing conversation with a local hospital about FASD supports and services, she realized she would need to follow her mom’s mantra: If it’s meant to be, it’s up to me.

This led her on a path to discover everything she could about Prenatal Alcohol Exposure through reading, research, seminars and talking to leading experts in the field. She now advocates, trains and mentors others, as well as consulting with governments in her State to get more resources for FASD.

She has done all this while balancing military careers for both her husband and herself. She discusses similarities and differences between life in the military with raising children with FASD and why she considered a deployment to Afghanistan respite. This time however, her husband has been called on a 180 day deployment to respond to the pandemic, leaving her at home with the children for the first time. She discusses how she is coping with this, as well as:

  • How and why she became so involved in the world of FASD
  • Tips and strategies she uses to help her children meet with success
  • The balance and partnership she has with her husband Nelson
  • Which is easier: military deployment or parenting children with FASD
  • Ideas on how to make it through this pandemic as a family and her self-care strategy

An important focus of her parenting is preparing her kids for their future:

“They should all be contributing to society because they’re capable and they want to. So, how can we put them in a position to do this?”

I think you will agree Aubrey has achieved so much in a few short years and is an inspiration to many with her straightforward approach to making lives better not only for herself and her family, but others. (Source)