COVID-19 Tips for Caregivers of Individuals with FASD

COVID-19 is a respiratory infection that can be spread from person to person through small water droplets from the nose and mouth. There are a number of preventive health measures that you can implement to reduce the risk of infection or transmission. However, preventive health practices can be difficult to implement in a home with children, particularly individuals with FASD. Challenges with sensory regulation, attention, memory, and emotional regulation make it difficult for children with FASD to understand and implement preventive health practices. The social distancing measures that have been put in place can result in feelings of depression, stress, confusion, and anxiety. This blog outlines some tips for caregivers to help you implement preventive health practices in your home.

Explain COVID-19 to your child

Most children will have already heard of the coronavirus or realized that a number of changes have been put in place over the past few weeks. This is a good opportunity to address their fears and concerns and to correct any misinformation your child may have heard. Ask your child what they’ve heard about COVID-19 and how they feel about it. Address their feelings while remaining calm and reassuring. Use developmentally appropriate language and place a strong focus on the preventive measures that have been put in place for their safety. Some organizations have developed stories and workbooks to help explain COVID-19 to children.

Set a new routine 

Individuals with FASD thrive with a set routine in place, but social distancing measures like school closures and event cancellations have caused some disruptions to your daily routines.

  • Try to build your new routine with elements from your old routines.
    – Maintain current sleep schedules to ensure your children are getting the rest they need and to make the return to your normal routine easier.
    – Eat the same meals you would usually eat on a daily basis at the same time as you usually would eat them (i.e., breakfast, lunch, dinner, and snacks).
    – Do you know when your child has outdoor play time at school or in daycare? Try and schedule your outdoor activities during these times.
    – Do you know when your child eats lunch or has snack breaks while in school or at daycare? Try and schedule your snacks and lunches to be at the same time.
  • Plan a set schedule of activities throughout the week. Block out set times for activities, meals, downtime, screen time, games, social interaction, and more.
  • Involve your children in the planning process by sitting down with them to make a list of potential projects or activities that you can do throughout the week.
  • Incorporate preventive health measures, such as handwashing, into your routine (i.e., we wash our hands before and after we eat our meals).

(Read more…)

(en anglais) COVID-19 Tips for Individuals with FASD

Information about COVID-19 or coronavirus seems to be all over the news these days. The government is recommending that Canadians practice “social distancing measures”, which means that people should stay home and avoid contact with one another. Events have been cancelled, schools and daycares have been closed, and the daily routines in workplaces are changing. These changes can be really scary, confusing, frustrating, and/or overwhelming. Here are some tips to help you:

Protect yourself
There are a number of things that you can do to prevent yourself from getting the virus and transmitting it to other people.

  • Wash your hands: Wash your hands carefully with soap and water for 20 seconds. You can also clean your hands using an alcohol-based disinfectant. You should wash your hands after:
    – coughing or sneezing;
    – when caring for people who are sick;
    – before, during, and after you prepare food;
    – before eating;
    – after using the washroom;
    – when your hands are visibly dirty; and
    – after handling animals or animal waste.
  • Avoid touching your face: The virus can spread if you touch your eyes, nose, or mouth after touching a surface that may be infected (e.g., with the virus on it). Wash your hands frequently and limit the number of times that you touch your eyes, nose, or mouth.
  • Frequently clean surfaces: Depending on the environment, COVID-19 can stay on surfaces for up to several days. The virus can spread if you touch your nose, mouth, or eyes right after touching an infected surface. Disinfect, or clean, commonly touched items such as toys, phones, toilets, electronics, and door handles using household cleaners.
  • Catch your cough: Cough and sneeze into your elbow or a tissue, not your hand. Throw out your tissue in the garbage immediately afterwards and wash your hands.
  • Practice social distancing: Avoid contact with other individuals wherever possible to limit the spread of the virus. Maintain a space of at least six feet or more between yourself and others. Stay home whenever possible.
  • Don’t share items: Avoid sharing items that other individuals may have touched or used, like cups, utensils, toothbrushes, and towels.

(Read more…)

(en anglais) Supportive program available for pregnant, post-partem women who acknowledge drug or alcohol use during pregnancy

Christine Rachar is spreading the word about a program available locally to help supporting women who are pregnant or six months post-partum who acknowledge drug and or alcohol use during their pregnancy.

Rachar works for a social services agency McMan Youth and Family Services and runs a program in the rural foothills called the Parent Child Assistance Program (PCAP). The program, available at no cost, is an in-home support that offers community referrals, mentoring, parenting support and accessing basic needs such as income support, housing and addictions support.

PCAP is tailored to meet a client’s individual needs, says Rachar, a PCAP parent advocate.

The harm reduction program offers non-judgmental support for new mothers, she says.

“We want them to be the best clean and sober parents they can be,” Rachar said during an interview.

Rachar says McMan hopes to increase the public profile of PCAP. With the opioid crisis, the social services agency is trying to let women know there is support, she said.

There are about 30 PCAP sites throughout Alberta, but the foothills PCAP is the only rural one, covering the municipal districts of Willow Creek and Foothills, and the Vulcan area.

So far, about 60 women from the foothills area have participated in the program Rachar currently has 11 PCAP clients.

“I personally have never had a mom have another pregnancy with drugs or alcohol,” said Rachar.

The success rate for the three-year program is about 90 per cent.

“It’s a pretty amazing program,” she said.

The Parent-Child Assistance Program started as a federally funded research demonstration project developed by Dr. Therese Grant at the University of Washington, according to the website of the Alberta PCAP Council.

The goals of PCAP are to support women to reduce or stop alcohol and/or drug use during pregnancy, to achieve and maintain recovery, and to support healthy pregnancies and lives for women and their children, reads the website. (Source article)

(en anglais) National conference aims to raise awareness of Fetal Alcohol Spectrum Disorders

Organizers say 225 people from across Canada have gathered for the 10th annual Anishinabek G7 FASD conference to foster understanding, awareness and collaboration, including Valencia Poulton. She shared her story about living with FASD with the crowd.

« Sometimes I get really jumpy and jittery, at times I can’t sit still, at times I can’t focus, and it’s quite difficult to process everything at once, » said Poulton.

The national conference aims to raise awareness about FASD, which is often referred to as an invisible disability.

« FASD is the thing we don’t talk about, but we are talking about it because it’s time, » said RJ Formanek who also lives with FASD.

The 58-year-old was diagnosed with FASD at the age of 47. He says much of his life he felt misunderstood and disconnected.

« I forget to eat because I don’t feel my abdomen, I don’t feel hunger, I have a very high pain threshold, which means I can injure myself and not realize how badly, » said Formanek.

Organizers say it’s important to bring the entire community together.

« We wanted to bring in the education piece, justice, school strategies, family resources, all those different areas, so we brought in experts in the field as well as families who we consider the real experts as they share their stories and strategies that work for them, » said Carol Anne Cheechoo, an organizer of the conference.

Lindsay Wolfson, a researcher with the Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD) in Toronto is one of the guest speakers at the conference.

« Our main message at the CanFASD is the importance of having a standard and unified definition as to what FASD is, which is that it’s a lifelong disability for individuals who were exposed to alcohol in the womb and that each individual has their own unique strengths and challenges, » said Wolfson.

Officials say another big goal of the conference is to get the message out there, that no amount of alcohol is safe during pregnancy. (Source article)

(en anglais) People living with fetal alcohol spectrum disorder share their stories

Particpants at FASD conference in Sudbury talk about their daily challenges

People living with fetal alcohol spectrum disorder are getting the chance to tell their stories.

A conference wraps up in Sudbury Friday highlighting some of the life challenges people with FASD face .

The event is hosted by several community groups, including Health Sciences North, Neo Kids, Shkagamik-Kwe Health Centre and N’Swakamok Native Friendship Centre.

Valencia Poulton, 13, from Mississauga First Nation, said coping with the disease is a daily struggle, especially in the classroom.

« It kind of makes me anxious, more and more jittery and jumpy, » Poulton said. « But I have special items at school that my teacher gives me and I fidget or I can ask to leave the room for a few minutes. »

She said she’s open about the disease with her classmates.

« Some of them were really supportive about it, » she said. « Some of them were kind of distant toward me for a while and [now] they’re OK with it. »

« That doesn’t make me any more different than I am. »

RJ Formanek, who advocates for people diagnosed with FASD, said he didn’t know he suffered from the condition until he was 47. He said the FASD puts his senses on overdrive, including an extreme sensitivity to fluorescent lights and scents.

« All of these things impact my brain and with these things going on my brain gets tired quicker, which makes me angry easier, and more reactive, » Formanek said.

When he was a student, the condition made him act out, which in turn isolated him from his classmates.

« Right from the beginning I didn’t get along with other kids, » he said. « I didn’t get invited to the birthday parties, you know, the classic things. »

« By the time you’re seven or eight years old you realize a lot of other kids don’t really like you that much. And that’s hard, » he said. (Read more…)

‘Alcohol can cause lifelong harm to your baby’: Regulator approves new warning label

Australian drinkers will be warned « alcohol can cause lifelong harm to your baby » under a new mandatory labelling scheme approved by the regulator, unless state and federal ministers veto the plan.

The alcohol lobby hit back at the « short-sighted » decision by Food Standards Australia New Zealand (FSANZ), while public health advocates said it was a « hugely significant step ».

The newly approved label for bottles larger than 200ml also includes the words « health warning » in red, bold capital letters and a pictogram of a silhouette of pregnant woman drinking with a red strike-through. Alcohol bottles up to 200ml would display the pictogram only.

« This decision is a bitter disappointment, » Alcohol Beverages Australia chief executive Andrew Wilsmore said after the 129-page ruling was published on Monday.

He called on food ministers, who have 60 days to decide whether to follow FSANZ’s advice, to « reject the label proposed by bureaucrats » and instead make the industry’s voluntary « DrinkWise » label mandatory.

Public health advocates have complained drinkers do not notice the DrinkWise label – which does not include a written warning and directs consumers to a website funded by the alcohol industry – due to its placement and design.

Foundation for Alcohol Research and Education director of policy and research Trish Hepworth welcomed the FSANZ decision, which she said had come after eight years of « obstruction » by the alcohol industry.

« This hugely significant step will help protect future generations of Australians, » Ms Hepworth said. « Alcohol consumption during pregnancy is a serious issue. »

Many women were still unaware of the risks of drinking during pregnancy, which could include fetal alcohol spectrum disorders, low birth weight, miscarriage and stillbirth, she said.

The latest official data from the National Drug Strategy Household Survey 2016 showed 25 per cent of women consumed alcohol after becoming aware they were pregnant, while 49 per cent drank before finding out they were pregnant. (Read more…)

(en anglais) New legislation would combat fetal alcohol spectrum disorders

Legislation introduced in the U.S. House by Representatives Don Young, R-Alaska and Betty McCollum, D-Minn., would take steps to inform pregnant mothers and prevent development of fetal alcohol spectrum disorders in babies.

“Too many families in Alaska and across our nation have been affected by FASD and we should be doing all that we can to raise awareness of the many ways to prevent this tragic condition,” Young said.

H.R. 5790, the Advancing Fetal Alcohol Spectrum Disorders Research, Prevention and Services Act, is the counterpart to S. 2879, which has been introduced in the U.S. Senate.

The legislation calls for creation of an interagency coordinating committee on fetal alcohol spectrum disorders consisting of parents, advocates, professional organizations and experts in the field.

It would also authorize FASD grant programs for medical experts, children and their families. (Original article)

(en anglais) What is a #WineMom and why should we talk about it?

Becoming a mother is a transitional period in a woman’s life involving a number of personal, social, and biological changes. However, researchers have found that our view of motherhood is influenced by our social and cultural norms. Motherhood is performative, meaning that women are expected to behave in ways that correspond to how we (as a society) think mothers should act. For example, “good” mothers must fulfill a number of requirements, including:

  • Successfully juggling their personal and professional lives;
  • Dedicating their lives to their child; and,
  • Fulfilling all socially expected roles that make up what we think a woman and mother should be (e.g., a cook, a cleaner, a protector, a driver, etc.)

However, women do not all fit into these socially constructed boxes. Their identities are made up of so much more than those three elements listed above, and many women are turning to alcohol as a way to subvert those social norms. Alcohol is an important tool that women are using to re-create their own identities of what it means to be a mother and a woman.

The ‘wine mom’ is typically a middle-aged mother who enjoys drinking refined or “classy” wines. The wine mom culture is an intentionally comical portrayal. It uses alcohol to subvert the idea of constant perfection that is often associated with motherhood. Mothers will share photos of themselves drinking wine while performing typically “motherly” duties, like cooking, doing laundry, and watching their children. The wine mom culture involves jokes comparing wine to “mommy juice” and puns such as “when they whine, I wine.”

A number of articles and editorials written by self-proclaimed ‘wine moms’ have been published in online blogs and news outlets. From the information shared in these articles, it appears that mothers are using the wine mom culture as a way to talk about the challenges of motherhood in a supportive, judgement-free community. (Read more…)

(en anglais) FASD and Child Welfare

CanFASD recently release a new issue paper exploring Fetal Alcohol Spectrum Disorder (FASD) and child welfare in Canada. Below is a short summary of this paper.

Issue

In Canada, individuals with FASD are overrepresented in the child welfare system. Conservative estimates suggest that the prevalence rates for children in care are at minimum 3-11%. This number is expected to be higher because of the lack of formal diagnosis of FASD for children in care. These youth represent a particularly vulnerable populations that often experience a greater rate of poor outcomes, including mental health issues, lower educational attainment, abuse, neglect, unhousing, and drug and alcohol use.

Social workers and social service providers encounter FASD on a regular basis and must be knowledgeable about this disability in order to improve outcomes. However, limited research suggests that individuals working in this profession do not have a strong understanding of FASD.

Background

Children with disabilities are at a greater risk of maltreatment and neglect than children without, and researchers have suggested that children with behavioural disorders, such as FASD, face the greatest risk (i.e., 7 times that of the general population). Children and youth with FASD have specific vulnerabilities that put them at a greater risk for poor outcomes.

There is no national policy or framework to support children with disabilities in child welfare. The services that are provided are dependent on the policies of each province and territory.

There are four key areas of focus when discussing FASD and child welfare in Canada:

Diagnosis

  • Early FASD diagnosis is a critical first step to support and improve outcomes for individuals with FASD and their families. Social service providers should be familiar with FASD and the Canadian diagnostic guideline in order to effectively screen for this disability as a part of their case assessment;
  • Children in care with FASD who are placed into stable home environments early on experience better outcomes than those who remain in the child-care system until later in life.

(Read more…)

(en anglais) Hamilton disability protesters demand PCs back off on proposed changes to definition of disability

Two local ACORN chapters organized a rally and protest in support of disabled rights and demanded that the Doug Ford government keep rates up and back off proposed changes to the definition of disability for the purposes of disabled benefits eligibility

They chanted on the sidewalk, in the parking lane and under the hoardings in front of the Ellen Fairclough and ServiceOntario buildings, some tentatively, others with robust, rousing voices.

Some were in wheelchairs, others standing, some wearing hearing aids, others with mental health challenges. What knit them together, the 20 to 30 protesters who rallied on King West on Friday, was the urgency of their demand that Premier Doug Ford abandon planned changes to the definition of disability in Ontario, which they fear will narrow eligibility for the Ontario Disability Support Program (ODSP).

« We have to push together, » exclaimed an impassioned Raven Bridges, co-chair of ACORN’s east-end Hamilton chapter, ACORN (Association of Communities For Reform Now) being the organizer — with allies — of the demonstration. It was one of several across the province this week.

« With the changes that are going to be happening, mental health will not be covered, » Bridges told the crowd.

That — mental health — is one of the criteria that some disability advocates fear the Ford government will try to eliminate from the definition of disability for purposes of benefit eligibility. The proposed definition change was announced last fall, and details of those changes, not yet disclosed, are expected soon, say ACORN spokespeople. But not if they can help it.

After almost an hour of speeches, chanting and holding up of signs and placards, the protesters went up to the Ministry of Health offices on the third floor of the ServiceOntario building and presented their list of demands to the Ford government. (Read more…)