Survey of parents with adults and young adults with FASD

Posted on behalf of David Gerry (Host of the Living With FASD Summits)


A stark question from our 28 year old daughter with FASD: What’s going to happen to me when you die

I wanted to connect with you to get your opinion on a situation I experienced in September this year. When asked by the facilitator of a webinar on September 9th (FASD Awareness Day), “What is your greatest fear for the future?” our 28 year old daughter bluntly answered, “What will happen to me when my parents die?”

That simple statement brought to the forefront an ongoing concern that’s been nagging me over the past several years. I assume this concerns many other families, too. As you may be aware, when it comes to solving the long term living requirements our family member with FASD will face (after you pass), there can be many challenges.

In order to find solutions to this issue, I would first like to start by finding out more from parents the scope of the problem, what you have tried and what solutions you have found. I would really appreciate your experience, opinions, and insights so am hoping you are willing to fill out the following 5-10 minute survey here: https://forms.gle/PKnv8eiieMnTwdTf6.

For those of you interested in my findings, I will be offering a free training to highlight the top 3 challenges, leave me your name and email in the last two optional text boxes of the survey.

Thanks in advance for your precious time,

David Gerry

 

Outcomes of Children with FASD in the Child Welfare System

Background

Children living in the child welfare system (i.e. foster care, group homes) are known to experience more adverse outcomes compared to children who live with their biological parents or adoptive/other family members. Individuals with Fetal Alcohol Spectrum Disorder (FASD) are also predisposed to adverse experiences. However, these adverse experiences may be more common for those with FASD living within the child welfare system.

The National FASD Database is the only one of its kind in the world, comprised of data collected from FASD diagnostic clinics across Canada. The database includes information on diagnoses, client challenges, treatment recommendations, and adverse outcomes, among many other variables. The authors of the current study used data from 665 children and adolescents diagnosed with FASD. The authors first compared all individuals living in child welfare to individuals living with their biological parents and individuals living with adoptive or other family members. The authors then looked at differences among children (<12 years old) and adolescents (12-17 years old) across these different living situations.

Main Findings

All individuals

  • Individuals in child welfare more often reported experiencing physical or sexual abuse compared to children living with their biological parents (30.7% vs 5%).
  • Compared to individuals living with adoptive or other family members, individuals in child welfare had higher rates of general difficulties with the law (11% vs 4.9%) and legal problems as an offender (13.3% vs 5.7%), had experienced higher rates of physical or sexual abuse (30.7% vs 14.3%), and had lower rates of mood disorders (22.5% vs 37.9%) compared to individuals living with adoptive or other family members.
  • The prevalence of suicidal ideation/suicide attempts was high for the total sample (39%) but did not differ by living situation.

Children

  • Children (<12 years old) in child welfare had higher rates of physical or sexual abuse compared to children who lived with their biological parents.
  • Children in child welfare reported lower rates of mood disorders than children who lived with adoptive or other family members.

Adolescents

  • Adolescents (12-17 years old) living in child welfare more often reported physical or sexual abuse compared to children living with their biological parents or adoptive/other family members.
  • Adolescents living in child welfare had a higher rate of legal problems as an offender compared to children living with biological parents and higher rates of legal problems as a victim compared to adolescents living with adoptive/other family members.

(Read more…)

Looking for Artists with FASD!

CanFASD is looking for Canadian artists with fetal alcohol spectrum disorder (FASD) to participate in their annual art competition!

The winner will receive a $500 prize and their art will be featured on the CanFASD holiday cards.

Deadline is November 25, 2020. Be sure to check out their website for full contest details.

You can also browse through the art from their past winners!

(Source article)

Ontario FASD Bill 172 Second Reading on Tuesday November 3. 2020 at 6pm

Some big news from FASD ONE regarding Education and FASD, please feel free to share and keep the conversation going!

October 29, 2020 Dear Ontario FASD “Family” Members:

This is for YOU if you have FASD, have a family member with FASD, support a person(s) with FASD, know someone with FASD, research FASD… and/or are interested in FASD in any other way. This is for YOU.

We ask you to forward this message to EVERYONE you know who cares about FASD, put it on Facebook and tweet it out far and wide. Look for opportunities to tell others about the great progress that has been made on Ontario FASD Bill 172.

The FASD ONE Education Action Group (EAG) got great news yesterday!  MPP Kathleen Wynne (Ontario Premier 2013-2018) will sponsor the Second Reading of Bill 172 – An Act in Relation to FASD next Tuesday night at 6:00 pm. That is Tuesday November 3, 2020.

We hope many of you will watch and listen to Second Reading of Bill 172. TO DO THIS PLEASE GO TO https://www.ola.org/en/legislative-business/video about 5:55 pm on Tuesday November 3, 2020.

What to Expect of the Second Reading: MPP Wynne will speak in support of the bill, and each recognized party will have a chance to speak afterwards. Then MPP Wynne will have a short time to reply. Voting on the Bill will follow.  Because of COVID many MPPs will not be there so don’t be shocked by that. All Ontario Bills must go through this procedure.

More Information: Please find two more documents to give you consistent background knowledge on Bill 172. This will allow our Ontario FASD Community to all be “on the same page” about this bill as we get started on the journey ahead of us here. If passed Ontario would be the first Canadian province/territory to pass a FASD Bill like this one.

Documents Attached:

  1. What you need to know about Ontario’s FASD Bill 172
  2. Statement from MPP Kathleen Wynne regarding Bill 172

After the Second Reading: The FASD ONE EAG will evaluate how the second reading of Bill 172 goes on Nov. 3 and we plan to suggest  Next Steps that will  allow anyone interested in  FASD to work together and promote the passage of Bill 172.  The EAG would appreciate your feedback on what you learn at the Second Reading and also YOUR good ideas to use as we work together in the future.
Please forward your comments/ideas to cunninghammary@rogers.com

Thank you for helping us to spread this knowledge far and wide.

This will give all of us something new and positive to help us through this “time of COVID”.

Mary Cunningham

Indigenous teen overcomes past and raises $5,000 for local food bank with ultra-marathon

COVID-19 may have been the impetus for many people to take up a new pastime, but for one Merritt teenager, the activity he chose seemed unlikely, even impossible. Darius Sam, 19, who had never entered a 10K run, raced a bicycle or swam much at all, decided to run an Ironman Triathlon.

The coronavirus lockdown had cancelled all formal competitions — made up of a five-km swim, 180-km bike ride, followed by a full 42-km marathon. So Sam ran his own, on his own.

“I did a self-made Ironman,” said Sam, whose two friends witnessed the race, considered one of the world’s toughest one-day competitions. “I just wanted to test my mental and physical limits. I’ve always been fit. But there was no training.

“I didn’t run, I didn’t bike, I didn’t swim,” he said. “I had just bought a bike a month before.” He is now ready for another challenge. “I was looking for something else, crazier, harder.” He decided on a 100-mile (170-km) ultra-marathon and to raise money for charity.

Outside the Nicola Valley food bank, he saw a senior in the long lineup on her scooter. “I asked her how she was. She said she was hungry. I knew right there and then (which charity to fund).” He picked June 13 to run from the Nicola Lake rest point to Spences Bridge and back again and expects to complete it in under 24 hours. A GoFundMe page goal of $1,000 has since been upped to $5,000, and by the middle of last week had reached $4,500. He researched 100-mile runs online, for tips on hydrating and eating, what to bring (extra socks) and what to expect (“You could get a pulmonary edema, or collapse, or get a knee inflammation.”)

“It’s not natural. I don’t think humans are supposed to be running 100 miles in under 24 hours,” said Sam. “People think I’m crazy. They think I’m absolutely nuts.”

His friend will be driving behind him. The road doesn’t have any cell service and if they need medical help, they will drive to the nearest hospital.

Sam has received advice from Merritt personal trainer and nutritionist Mark Nendick, who said, “I heard about what he was doing for the food bank and I thought it was awesome.”

He has offered to pace Sam for the last 30 miles because the 70-mile mark “is when people start falling apart.”

“Eighty per cent of running a 100-miler is mental,” he said. “He has been doing a lot of physical training, and I think he’s mentally able to do it.”

“I don’t have any quit,” said Sam. “As long as I can run, nothing will stop me.”

The five-foot-10, 170-lb. teen was born with fetal alcohol syndrome and grew up in a foster home.

(Read more…)

Student defies odds for college career

Samantha has defied the odds stacked against her since birth.

She knows what it means to work hard despite obstacles being thrown at her from every direction.

Samantha’s perseverance was acknowledged last month when she was awarded the Ronald Lees Bursary from the Children’s Aid Society of Nipissing and Parry Sound.

“As an adopted person who has been diagnosed with FASD (fetal alcohol syndrome disorder) I have had to overcome many obstacles related to learning strategies,” she said in her bursary application. “I have to work very hard for my success. I struggle socially and so I have had to come home often to keep a close connection with my family in order to be successful at college.”

Samantha’s mother was an addict. She died from her addiction this spring. In the mist of that tragedy, Samantha was able to successfully pass her first year of studies at Fleming College in Lindsay where she is pursuing a diploma in ecosystems management.

Gisele Hebert, executive director for CAS Nipissing and Parry Sound, said the stories of perseverance are heartwarming.

“Many of these children that we receive applications from are older and come with significant trauma. When you see the successes these young adults have earned, it truly brings a tear to your eye.”

Hebert said the $1,000 bursary is given out annually in honour of Ronald Lees, former executive director at the agency.

“He was extremely passionate about adoption. He made it a priority,” she said Monday. “Ronald was an adoptive parent himself.”

This year, CAS Nipissing and Parry Sound was able to give out three bursaries to young men and women who were adopted through the local agency and are pursuing post-secondary education in a trade, college or university. The other two bursaries were $800 and $500. YES Employment Services provided $500 to help increase the amount being distributed.

Although the province is dealing with COVID-19, CAS Nipissing and Parry Sound is moving forward with its adoption process. In 2019 to 2020, there were nine adoptions, 13 adoptions from 2018 to 2019, 26 adoptions in 2017 to 2018 and 15 adoptions from 2016 to 2017.

(Read more…)

FASD Photo Voice Project

Do you know an adult with FASD in Ontario (Canada) that would like to share their voice through a photo voice project about FASD?

If so, please share the poster attached/the information below and ask them to send an email to fasd@oursacredbreath.com by October 31.

More information will be sent to those interested/eligible, but essentially it is a project where you take a photo to represent some aspect of yourself and FASD. It will be accompanied by your thoughts (words) on what that picture represents to you.

The pictures and meanings will be collected and shared (anonymously if desired) to help spread awareness about FASD.

This project is able to exist via a grant from Health Nexus through the Ontario Government, which is why only adults within Ontario are eligible. (There are limited spots).

There will be no financial compensation, but you will receive a framed copy of your project submission and a copy the completed video.

 

2021 Dr. Sterling Clarren Award Applications Open

CanFASD is accepting applications for the 2021 Dr. Sterling Clarren FASD Research Award!

The Canada FASD Research Network (CanFASD) Dr. Sterling Clarren FASD Research Award has been named in honour of Dr. Sterling Clarren to recognize his pioneering contribution and leadership in the field of Fetal Alcohol Spectrum Disorder (FASD). The award is presented annually to a Canadian graduate student or early career researcher in recognition of a study that has made a substantial contribution to the FASD field.

For this award, preference is given to studies conducted in the CanFASD priority areas of FASD prevention, diagnosis, intervention, child welfare, and justice, in CanFASD member jurisdictions (British Columbia, Alberta, Saskatchewan, Manitoba, New Brunswick, Northwest Territories, Nunavut, and Yukon). However, studies conducted in other areas of FASD research (e.g., epidemiology, biomedical, animal studies) and other Canadian jurisdictions will also be considered. All studies must clearly integrate FASD research, policy, and practice, and demonstrate relevance to the human dimensions of FASD.

Applications may be submitted by graduate students, post-doctoral fellows, or early career investigators (within 3 years of first Faculty appointment). The research must be complete or near completion (i.e., data collection and analysis phases are complete). Studies may be submitted for publication, in press, or published, however, but will only be considered within one year of publication date.

This year’s applications are due by December 4, 2020. The award recipient will be invited to present their research in the Spring of 2021 and will receive a cash prize of $2,000.

Check out CanFASD’s website to find application instructions and read about previous Dr. Sterling Clarren FASD Research Award winners.

(Source article)

National Poll (UK) Shows Support For Access To Key Information For Diagnosis Of FASD

(London) – A new poll shows that 91% of women and 85% of men believe that children should have access to information about harm done to them in utero to help them get diagnosis and support (only 1% of women disagreed or strongly disagreed and 2% of men). 85% of women and 74% of men believe drinking alcohol in pregnancy should be noted as part of routine antenatal care (only 5% of women and 6% of men disagreed or strongly disagreed). These finding show massive public support exists for the intent of the draft Quality Standard on Fetal Alcohol Spectrum Disorder (FASD) being produced by NICE, the National Institute for Health and Care Excellence. FASD is a relatively unknown neurodevelopmental condition which experts say is more prevalent than autism but often undiagnosed.

According to Joanna Buckard of the National Organisation for FASD, which commissioned the poll, “This poll strongly suggests that framing of these discussions is important. While we understand the limits of this sort of poll, these results reflect what we’ve been hearing from members of the public and experts for years. Information about exposure to alcohol in pregnancy is the first step toward diagnosis and is needed for the more than 90% on the FASD spectrum without the distinctive facial features. Every child with a disability has the right to the correct diagnosis. Having the right diagnosis can be the key to understanding and support. This can be life changing.”

Dr Cassie Jackson of the Centre for FASD in Suffolk said, “Lacking this key information when children come for assessment can mean the difference between receiving a diagnosis that will facilitate appropriate support from services moving forward; and continuing undiagnosed, leaving children and young people potentially misunderstood for a lifetime. Accurate documenting of alcohol use during pregnancy is absolutely necessary for timely and accurate diagnosis.”

(Read more…)

CCSA to Lead Update of Canada’s Low-Risk Drinking Guidelines

Ottawa, September 17, 2020 — The Canadian Centre on Substance Use and Addiction (CCSA) is leading a major collaborative initiative to update Canada’s Low-Risk Alcohol Drinking Guidelines by March 2022.

The 20-month initiative is being led by CCSA with funding support from Health Canada and will involve key scientific experts, researchers and knowledge mobilization specialists, and representatives from federal, provincial and territorial governments and national organizations.

Canada’s first Low-Risk Alcohol Drinking Guidelines were developed in 2011 to support Canadians in making informed decisions about their alcohol consumption. The update will bring the guidelines in line with the latest evidence and address the unique needs of specific groups especially at risk from the harms associated with alcohol, such as youth, women, older adults and people with chronic diseases.

The inaugural meeting of the project on Thursday was attended by federal Minister of Health, Patty Hajdu.

Rita Notarandrea, CCSA’s CEO, said: “CCSA is thrilled to lead the initiative to update Canada’s Low-Risk Alcohol Drinking Guidelines by March 2022. We thank Minister Hajdu and Health Canada for funding this important project and for entrusting CCSA with its execution.

“The current Low-Risk Alcohol Drinking Guidelines are a vital tool to support Canadians in assessing their alcohol consumption and in making informed decisions about drinking. Since they were first developed in 2011, the evidence on the impact of alcohol on health and its contribution to social harms has advanced considerably. This update to the guidelines will reflect the most recent evidence available and put Canada on the leading edge of the research.

“The updated guidelines have the potential to form an evidence base for future policy making and public education, but most importantly they will be a real-world tool for Canadians,” she concluded.

CCSA has assembled expert panels, led by co-chairs Dr. Peter Butt, Associate Professor, University of Saskatchewan, and Dr Catherine Paradis, Senior Research and Policy Analyst, CCSA, to evaluate the latest scientific evidence using an internationally recognized evaluation framework.

(Read more…)