“We call upon the federal, provincial, and territorial governments to recognize as a high priority the need to address and prevent Fetal Alcohol Spectrum Disorder (FASD), and to develop, in collaboration with Aboriginal people, FASD preventive programs that can be delivered in a culturally appropriate manner.” – Truth and Reconciliation Commission of Canada
Grounded in research, the booklets prioritize Indigenous knowledge for implementing culturally-safe, cross-disciplinary, cross-organizational, and collaborative approaches to FASD prevention. As well, each booklet offers discussion questions that shift the lens from a primary focus on alcohol use during pregnancy, to a holistic focus that aligns with Indigenous values and worldviews to support change and transformation in all systems of care.
The Truth and Reconciliation Commission of Canada (TRC) provided a process for discovering the harms and injustices that Aboriginal people experienced as part of the Indian Residential School system with an aim to build a lasting and respectful foundation of reconciliation across Canada. TRC findings were released in 2015 along with 94 Calls-To-Action (CTA), including CTA #33, which focuses on FASD prevention.
How to Make the Connections Between Mental Health and Sexual Health
What does good health care look like? A positive health care experience can look like many things to different people. It’s not about perfect scripts, it’s about increasing capacity to provide affirming care for diverse people and communities. Although Canada’s health care system is universal, not everyone has equal access to the care they need and deserve, which results in health disparities. When it comes to mental health and sexual health, individuals may feel hesitant to access health care due to concerns around or previous experiences of stigma and discrimination.
This handbook includes scenarios, discussion prompts, and tips for health care professionals to provide comprehensive and affirming care related to mental and sexual health and all the ways they intersect.
This handbook was produced as part of Sexual and Reproductive Health Awareness Week. An annual campaign hosted by Action Canada for Sexual Health and Rights to promote sexual and reproductive health in Canada. For more information visit www.srhweek.ca
In a new JAMA study of more than 6,000 first-graders, researchers estimate that between 1.1% and 9.8% of American children have developmental or neurological problems caused by fetal alcohol spectrum disorders (FASDs)—a significantly higher number than previous studies have reported. And out of the hundreds of children determined in the study to have FASD, only two had been previously diagnosed.
The estimate comes from school-based assessments, family interviews and in-person evaluations of 6- and 7-year-olds in four communities across the country: one in the Midwest, one in the Rocky Mountains, one in the Southeast and one in the Pacific Southwest. Previous studies, which have estimated the rate of FASD to affect just 1% of children, involved smaller groups of people from single communities or from people in doctors’ offices, say the authors of the new study.
FASD is an umbrella term for health abnormalities caused by exposure to alcohol in the womb; it includes fetal alcohol syndrome, partial fetal alcohol syndrome and alcohol-related neurodevelopmental disorder. FASDs are a leading cause of developmental disabilities around the world, and people with these conditions can experience growth deficiencies, facial abnormalities and organ damage. They often have physical, cognitive and social challenges throughout life, and have an increased risk of premature death.
Before the current study began, researchers established standardized classification criteria for FASD based on facial features, growth, and neurodevelopmental performance. Using that criteria, they then screened a random sampling of first-graders in public and private schools in the four chosen regions, and interviewed the children’s mothers and other close relatives.
Based on their findings, the authors determined that FASD affected between 11 and 50 out of every 1,000 children they examined. That translates to between 1.1 and 5%, which they say is a conservative estimate: It assumes that no additional FASD cases would be found in children in those communities that hadn’t participated in the study.
When the researchers used a statistical technique assuming that the rate of FASD in children who were evaluated would be the same in all first-graders in those communities (more than 13,000 children total), the estimated FASD rate was even higher—ranging from 3.1% in the Southeastern group to 9.8% in the Rocky Mountain group.
Queensland grandmother Sharon Wallace said she needs locks on her bedroom door.
That’s because her seven-year-old grandson Xavier can be incredibly loving one minute, but destructive the next.
“Xavier loves to have something that smells like me, plays with my ears. And then the other side of Xavier is that he’ll put huge holes in the walls at home, he’ll hurt his brothers and sisters or me,” Ms Wallace said.
“He gets in such high anxiety states of aggression and he won’t calm down for ages. He could be fine right now and ten minutes later he’s having a big rage and there’s no calming him down.”
Ms Wallace has to hide knives and hammers from Xavier, because of the damage he can cause at home.
It has gotten worse since he wasn’t allowed back to school.
“He says it’s payback, but usually it’s when he’s having his meltdown,” Ms Wallace said.
“I think he regrets it afterwards but at the time it’s his way of getting his anger out.
“It can be very confronting.”
Ms Wallace said the episodes happen up to three times a day.
She has been looking after Xavier and his siblings since they were taken away from their mother because of problems with alcohol.
That was one of the reasons why last year she decided to take Xavier to see doctors at the Fetal Alcohol Spectrum Disorders Clinic on the Gold Coast.
She was looking for answers to his wild and uncontrollable behaviour.
“Nothing else we tried has worked,” Ms Wallace said.
“A lot of people look at me and say it’s the discipline, you’re not giving him enough discipline. And you try and it doesn’t work. And in the end you think it must be me, what am I doing wrong?”
Australia officially recognises FASD
FASD is an impairment to the brain caused by fetal exposure to alcohol during pregnancy.
There are varying degrees of severity, but it mainly manifests as behavioural problems and learning difficulties.
“Often the diagnosis of FASD shows us that it’s not that the child won’t behave, or that it’s wilful disobedience. It’s that they can’t, they don’t have the capacity to either learn or behave in a manner that is expected of them,” said Doug Shelton, the clinical director of Community Child Health in the Gold Coast.
Doctor Shelton said the diagnosis involves a child psychologist, speech pathologist and paediatrician taking the child through a complex series of tests that can last up to two days.
“There are a number of different brain domains that we look at in children that potentially have FASD. That would include their intelligence, their language skills, their memory, their attention control, something called their affect, which is related to their mood, ” Dr Shelton explained.
“We look at their social skills and we look at something called the executive function, which is their ability to plan ahead and organise their thoughts.”
Diagnosis provides understanding
Xavier undertook these tests late last year and doctors confirmed his diagnosis of FASD.
“He’s on the severe end of the spectrum, because he has major impairments in at least five separate brain domains. He has major problems with attention, executive function, adaptive skills, affect, regulation,” Dr Shelton explained.
Ms Wallace was tearful and emotional when she heard this, but also relieved.
“Anyone that I have been to and any friends say that it must be my environment that he’s in, that causing his behaviour and I can’t work out what I’m doing wrong,” Ms Wallace said.
“If I can’t find something to help him, child safety will take him back. He’ll end up in a system where no one can understand him.”
“I’m glad he got in here, if he hadn’t got some kind of help I don’t know where he’ll end up.”
Doctors at the clinic said they will inform child safety and Xavier’s schools about the diagnosis, so they realise his behaviour is essentially the result of a brain impairment, not his grandmother’s care.
“So it’s allowing them to understand how his brain works, what the areas of deficit are, and how that plays out on a day-to-day basis in a classroom,” said Doctor Judith Warner, a clinical psychologist who assessed Xavier.
“Can we reasonably expect him to be able to screen out a lot of the information from multiple instructions in the classroom and regulate his emotions when there is a lot going on around him? And no would be the answer to that,” Dr Warner said.
In addition to getting additional support for Xavier at school, his grandmother will also be taught how to better manage his behaviour.
Part of that involves acting like his ‘external brain’ and providing more structure, advice and support.
Earlier diagnosis could help incarceration rates
Doctors are pushing for earlier diagnosis and intervention of children with FASD, to help improve their life outcomes.
Doctor Doug Shelton is working with Griffith University to develop diagnostic guidelines that can test children as young as three, instead of the current age limit of seven.
He said children or people with FASD have a much higher risk of not completing their education, falling into lower socioeconomic groups, self medicating with drugs and alcohol and suffering from anxiety or depression.
“That can spiral off into life of crime and … ultimately incarceration. And there is a much higher rate of attempted suicide and successful suicide in adults with FASD,” Dr Shelton said.
Dr Shelton said he’s been asked by the Queensland Department of Justice to train their psychologists on how to diagnose FASD.
“There are many people in jail that don’t have brains that function normally. We know that from overseas research and from research conducted in Western Australia. Some of that abnormal brain function is due to FASD,” Dr Shelton said.
“So ultimately the community is paying an enormous amount of money to keep people with FASD in jail, when really it would have cost us much less money to identify them early and provide intervention when they were children.”
Standard for Preventing Problematic Substance Use: Youth
Effective prevention does not necessarily mean working harder, but can be achieved through focusing resources on community needs and evidence-informed practices, and linking with other initiatives in the community.
In partnership with the Canadian Standards Task Force, CCSA developed a Portfolio of Canadian Standards for Youth Substance Abuse Prevention. The Canadian Standards provide teams with guidance — based on the best available evidence — on how best to plan, select, implement and evaluate their prevention efforts. The Canadian Standards were a foundational piece used by the United Nations Office on Drugs and Crime to develop the International Standards, released in March 2013.
The Canadian Standards are designed to support prevention teams in planning, implementing and evaluating their initiatives. They provide:
A common benchmark for excellence;
Support and guidance to pursue continuous improvement;
Flexibility to adapt to different regional contexts or populations; and
Practical resources and examples to support change.
The rationale behind standards for youth drug use prevention
Youth are more likely than adults to engage in risky substance use and to experience greater harms from that use.
Applying the Standards helps ensure that prevention initiatives are successful and informed by the latest quality evidence.
These resources were developed by a task force of experts following extensive cross-Canada consultations with prevention and education specialists, drug awareness police officers, clinicians, community outreach workers, researchers, policy analysts, senior managers in addiction agencies and health departments, teachers, school administrators and other key stakeholders.
We are at a critical point now advocating to get the Minister of Education to bring forward Bill 191 to amend the Education Act to include FASD for a second reading in the house. Ten days is all we have. If you haven’t written to the Minster and your local MPP, take some time this weekend to get your letters sent. This may be our only opportunity to get FASD the recognition it deserves and the accommodations our children need and deserve.
We are not feeling very hopeful that the Minister will bring forward the Bill as detailed below in a series of correspondence between Mark Courtepatte, Co-chair of the Hamilton FASD Parent & Caregiver Support Group, constituents of Minister Naidoo-Harris and her office. If you care about this issue, please don’t leave it to others to write letters – the Minister needs to hear our voices on behalf of our children who, despite her office’s opinion they are being served, they are not!
Letter from Mark Courtepatte (Co-chair, Hamilton FASD Parent & Caregiver Support Group) to Minister of Education Naidoo-Harris.
January 26, 2018
Dear Honourable Minister Naidoo-Harris,
Re: Bill 191 – An Amendment to the Education Act to support FASD
We would like to firstly express our sincere congratulations for your new portfolio as Minister of Education and retaining your Ministerial responsibility for Early Years and Child Care. We also appreciate that in the past you had expressed your support for FASD including your recent statement at the Trillium Grant announcement for your riding:
“The Halton Fetal Alcohol Spectrum Disorder Collaborative provides important support for many Halton families facing challenges in their lives. This Ontario Trillium Foundation grant will help them expand their vital services and take care of the unique needs of local children and families affected by FASD. I’m so pleased our FASD community is getting this help.” – Indira Naidoo-Harris, MPP for Halton.
The intention of this letter is to also sincerely request that you confirm your support for FASD by supporting Bill 191 – an Amendment to the Education Act to promote awareness, understanding and support of FASD in our school systems and involve parents and Support Groups in the promotion. We also respectfully request your assistance by bringing this bill forward for the second and third reading before the next election writ is dropped.
We firmly believe that Bill 191 is not only critically important to your role as Minister of Education, it is also supports your role as Minister of Early Years and Child Care.
According to the John Howard Society of Ontario 1 …
• Fetal Alcohol Spectrum Disorder (FASD) is the most common type of developmental delay in Canada. There is increasing data to suggest that a disproportionate number of people in conflict with the law have FASD. Some researchers estimate the rate of FASD to be ten times higher inside Canadian prisons than in the general population.
• 95% Percent of people with FASD also have a mental illness.
• 60% Percent of people with FASD over 12 years old will be charged with, or convicted of, a crime.
• 55% Percent of people with ARND will be confined in prison, drug/alcohol treatment centres, or psychiatric institutions.
According to a recent Canadian study (Special Education of Children with Fetal Alcohol Spectrum Disorder): 2
• Children with FASD in the education system are most often recognized for their behavioral problems, and thus, are identified as difficult students to manage. Streissguth and colleagues (2004) reported that among a sample of individuals with FASD …approximately 53% of the adolescents with FASD had been suspended from school, 29% had been expelled, and 25% had dropped out. The most frequently mentioned learning problems were attention deficits (70%) and repeatedly incomplete schoolwork (58%; Streissguth et al., 2004).
• Children with FASD were more than three times as likely to repeat a grade, and more than nine times as likely to receive special education funding for special needs compared to the general population (Brownell et al., 2013).
We are also aware that in June 2017, Canada and Ontario signed the Early Learning and Child Care (ELCC) Agreement, as part of The National Early Learning and Child Care Multilateral Framework setting the foundation for governments to work towards a shared long-term vision where all children across Canada can experience the enriching environment of quality early learning and child care. We believe that Bill 191 is critical to ensure that FASD children encounter an enriching environment of quality learning supporting the ELCC Agreement. Every day countless children across Ontario are exposed to schools, teachers and Education Assistants who do not understand FASD, and use inappropriate teaching and support methods resulting in the children not achieving success in education, and many dropping out at an early age.
Our support group provides support to an estimated 5,200 people with FASD based on Health Canada’s low estimate of 1 per 100 or 10,400 to 26,000 people based on Health Canada’s 2-5% prevalence rate. 3
As the co-chair of a support group with so many children impacted by FASD, I know firsthand how difficult life can be for the children. However, I have also seen when collaboration, support and early intervention exist within the school, the children can truly succeed. When supports and early intervention were not in place at school, we had experienced situations where schools have called 911, children were handcuffed or chairs thrown through windows. However, when we have collaborated with the school board, CAS, DSO and other agencies, we have found success. We have learned it is through collaboration that we have discovered what types of support and early intervention the children need.
Our organization is frequently called upon to assist with children in schools, children experiencing challenges due to improper supports and understanding. When the children started receiving supports, understanding and accommodations, this is when we really started to see success. However, the biggest challenge we are currently facing in school boards across Ontario is a lack of understanding and corresponding strategy on how to best help the children. They do not fully understand how FASD impacts a child’s learning, behaviour and challenges which we know is unique from any other neurodevelopmental disability. This is why Bill 191 is so important. We need school boards across the province to begin the discussion on what FASD is, how to support it, and determine best practices from us, the caregiving experts, on how to implement it in their schools.
Please give all our Ontario families and children being impacted by FASD hope with the passing of this bill. I know that for all the children we support, hope and a better future is what we need right now.
I look forward to your advice and comments.
1 John Howard Society of Ontario: FASD and the criminal justice system
2 Canadian study: Special Education of Children with Fetal Alcohol Spectrum Disorder
3 The 5,200 estimate is based on Health Canada’s 1% incidence and the Hamilton population of 520,000. According to Health Canada “… the precise prevalence of FASD in Canada is largely unknown, it is estimated that FASD occurs at a rate of 1 out of every 100 live births and prevalence may be as high as 2-5 per cent. FASD is estimated to be higher in some sub-populations …”
This is the Minister’s Office’s response to the Halton FASD Letter:
Thank you for your inquiry regarding Fetal Alcohol Spectrum Disorder and Bill 191. As you are aware, Bill 191 proposes to amend the Education Act by adding the following part:
(1) Every school board promote awareness and understanding of FASD, including best practices to support pupils who may have FASD and;
(2) every board shall facilitate collaboration with parents and FASD Support Groups in undertaking the promotion under subsection (1)
As you know, this Private Bill was introduced in the provincial Legislature on December 14, 2017. We do not know at this time the legislative schedule for the upcoming parliamentary session. Although you may already be aware, I would like to share with you some information about how the ministry is supporting students with FASD in our schools
The Ministry’s current policy is:
• The Students who have behavioural, communicational, intellectual, physical or multiple exceptionalities may have educational needs that cannot be met through regular instructional and assessment practices. Such students may be identified as exceptional pupils. The ministry sets out definitions of exceptionalities that must be used by school boards after determining that a student is an “exceptional pupil”.
• The ministry’s broad categories of exceptionalities are designed to address the wide range of conditions that may affect a student’s ability to learn, and do not exclude any medical conditions, whether diagnosed or not, that can lead to particular types of learning needs. The inclusion of some medical conditions in the definition of exceptionalities is not intended to exclude any other medical conditions that may result in learning difficulties, such as (but not limited to) Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder, Fetal Alcohol Syndrome, and Tourette Syndrome. All students with demonstrable learning based needs are entitled to appropriate accommodations in the form of special education programs and supports.
• The ministry policy is that the determining factor for the provision of special education programs and/or services is not any specific diagnosed or undiagnosed medical condition, but rather the needs of individual students based on the individual assessment of strengths and needs.
• Although the ministry is responsible for policy that directs the allocation of funding to school boards, it is the responsibility of each school board to allocate funding for each school or program, according to its policy and priorities.
Bill 191 was carried on after its First Reading on December 13th 2017. If any additional information or update is released on Bill 191 is released, I will gladly forward it to you. Thank you.
Office Coordinator/Scheduling and Constituency Assistant
Office of Indira Naidoo-Harris, MPP Halton
450 Bronte St. S., Suite 115, Milton ON
This same form letter is being sent to constituents in her Halton riding. Frankly the response is totally unacceptable!
To be polite … their letter lacks any new or real information, does not respond to the request for her support of Bill 191, repeats the Dec 19, 2011 Barry Finlay memorandum, and essentially says “we are just great, we do a lot to support FASD and we don’t know what the status of Bill 191 is but if it changes we will let you know”. – Mark Courtepatte Co-chair, Hamilton FASD Parent & Caregiver Support Group
The Halton FASD Group is presently preparing a response to their letters. I will post the letter once it has been issued, but Mark points out:
As an overall comment, the response is disappointing. It essentially repeats info from the Bill, Ministry Policy for Special Education, and a Ministry of Ed Memorandum written 7 years ago (Dec 19, 2011) and makes no statement regarding the Minister’s support for the Bill. The link for the Dec 19, 2011 memo: 2011 Memo
More thoughts from Mark on the response:
The government is investing $26 million over 4 years.
On the surface the amount may appear to be considerable however this amount is negligible if you consider that FASD is caused by pre-natal alcohol exposure and that the government made $1.9 billion profit from alcohol (2016) and most FASD children were adopted from a government agency. For comparison, Autism received in excess of $500 million over 5 years, was not caused by a product that the government profited from, and the majority of the children were not adopted from a government agency.
We know that students with Fetal Alcohol Spectrum Disorder may require supports in order to succeed in school and further commented on the $26 million over 4 years and 6 initiatives.
Firstly, the spokesperson was incorrect to say that students “may” require supports in order to succeed. If he truly understood FASD he would realize that children with FASD “must” have supports to be successful in school. He also neglected to comment that not one of the planned 6 initiatives specifically relates to any enhanced FASD support or services by the Ministry of Education. Bill 191 would change this!
The FASD community strongly believe that the stated 6 initiatives will provide negligible assistance to people with FASD in Ontario and not one of the six initiatives includes any of the five themes in the Ministry of Children & Youth Services (MCYS) FASD Roundtable report.
One of the six initiatives that the spokesperson had not commented on is the hiring of 56 FASD workers to support 2,500 people with FASD (supporting less than 2% of the Ontario FASD population). We also estimate that the cost for the FASD workers would consume approximately 86% of the $26 million funding leaving approximately $7 per person per year for support which is not even sufficient to buy them a small coffee at Tim Hortons each month!
The stated 6 initiatives does not include any initiatives to enhance education for children with FASD. The Journal of Research on Special Education Needs stated that “it is important for school systems to adapt educational practice and policy to support the needs of children with FASD…”.
With regard to the spokeperson’s IEP statement:
The universal experience of FASD children is that the IEPs are totally useless if the schools do not provide awareness, understanding and proper support for FASD. According to a recent Canadian study (Special Education of Children with Fetal Alcohol Spectrum Disorder) approximately 53% of the adolescents with FASD had been suspended from school, 29% had been expelled, and 25% had dropped out. Clearly the research confirms that the Ministry of Education and school system is failing children with FASD. This is why Bill 191 is so important.
As you know, this Private Bill was introduced in the provincial Legislature on December 14, 2017. We do not know at this time the legislative schedule for the upcoming parliamentary session.
NOT correct. Her office should know that the Legislative schedule indicates that Bill 191 is slated for the 2nd Reading on Feb 20, 2018 – however it will require Minister Naidoo-Harris to support the Bill and request that it be added to the docket for Feb 20th. Either her office is not familiar with the Legislative Proceedings for the Government of Ontario OR they are not being totally honest or forthcoming in their response.
It is scheduled: M191. Second Reading of Bill 191, An Act to amend the Education Act in relation to Fetal Alcohol Spectrum Disorder (FASD). Ms. Kiwala. PRINTED. February 20, 2018 Orders
However, if there is not a Cabinet Minister to bring the Bill forward for reading, it will not go up for a second reading. Keep sending your letters! The Minister needs to know that Bill 191 is important and that she must support it.
We interpret the spokesperson not making a statement regarding this suggests that the Minister does not intend to support Bill 191. We also interpret the spokesperson’s statement “we continue to explore further ways to better support students who are living with FASD and their families” that they are doing nothing. Bill 191 provides a significant way to better support students living with FASD.
Minister Naidoo-Harris has said in the past that she supports FASD.
We believe that she now has a significant opportunity to prove to the FASD community in Halton and across Ontario that she really believes in supporting FASD or prove that her past statements were just empty political statements.
Bill 191 provides the opportunity for the Ministry of Education to enhance awareness and support for FASD in schools.
MCYS FASD Strategy Announcement: Provide funding for over 50 FASD workers to support approximately 2,500 Ontarians with FASD. Cost estimate details: 56 workers X $100,000 per year for salary, benefits, expenses and office overhead = $5.6 million per year. ** Note that the estimate excludes the cost of management, supervisors, etc for the 56 workers. $26 million over 4 years = $6.5 million per year. Less the $5.6 million for the FASD workers = $900,000 remaining / 130,000 people with FASD = $6.92 per person.
Special Education Study of Children with FASD: “…Streissguth and colleagues (2004) reported that among a sample of individuals with FASD, 14% of 161 school children and 61% of 250 adolescents and adults had disrupted school experiences. Approximately 53% of the adolescents with FASD had been suspended from school, 29% had been expelled, and 25% had dropped out. …”
While the letter to the Minister from the Halton FASD is a fantastic example, and the counterpoints provide excellent statistics, I thought I would share the letter I sent by email on January 24. It is more an emotional plea for the Minister to bring Bill 191 forward.
Dear Honourable Minister Naidoo-Harris,
First, congratulations on your new portfolio. It is in that capacity, I am writing to you to support Bill 191 which would amend the Education Act to promote awareness and understanding of FASD, including best practices to support pupils who may have FASD. And further ensure every school board facilitates collaboration with parents and FASD Support Groups in undertaking the promotion of awareness and understanding.
MPP Sophie Kiwala was able to bring this Bill forward in December along with the request for the Province of Ontario to recognize International FASDay. Thank you so much MPP Kiwala! While the recognition day was passed, it is my understanding the second motion to amend the Education Act requires a cabinet minister to bring it forward for second and third reading. I, with others who are involved in the FASD community, are asking for your help in bringing this Bill forward for the second and third reading before the next election writ is dropped.
It is too late for my daughter. She went through a system for the most part unsupported. But it isn’t too late for those students currently in school and those yet to start.
Last January she met the Prime Minister and passed him a note asking for services. This year it would be great if the provincial government stepped up as an example to other boards across the country to provide a supportive educational environment. CanFASD estimates there are 1.5 million Canadians with FASD – most in the field feel 4% is too low and it is likely double. It’s time we recognize and support these individuals and their families and caregivers.
I adopted Nicole when she was eight – and although the CAS suspected she had FASD she was not diagnosed until 11. However even the diagnosis did nothing for her to receive support or understanding in our provincial education system. It failed her – as it has many other students and families.
Most teachers did not understand her behaviour. Most gave her consequences or expected her to learn from her mistakes, to leave her to make decisions she clearly did not have the skills to make, she was not provided with EAs or CYWs specific to her to help her navigate the social and rule bound world of education. She was expected to thrive in an environment that did not recognize, thereby not provide appropriate accommodations, for her disability. As a result, we struggled to get her to school and when she was there, keep her there. We changed elementary schools because the new principal did not understand or want to believe FASD. Routine and structure are important and moving schools was a big change but was needed.
I ended up having to quit a well paying job to stay home and support Nicole as from grade 7 – 10 she was removed from school at various points and taught at home because she was not getting the support she needed to flourish. It was only when she turned 17 and received a Developmental Disability diagnosis was she able to participate in the Life Skills and Learning program. However it was too little too late as this was her last year. She could have stayed until she was 21 but she had no desire to remain in a system that failed her.
Don’t get me wrong, there were some amazing teachers, principals and other staff who went above and beyond – but they could only do so much without Board support. She flourished under those few special professionals who collaborated with myself and Nicole’s support team. However without official recognition and intervention, every year we had to educate new staff, who didn’t believe by “looking” at Nicole she had challenges. It was only when she failed to meet their too high expectations that they realized that perhaps they should have listened to me or the professionals about the support she required. But the support wasn’t there for FASD.
I wonder how different her school years would have been if she received the support she needed. How different her life would have been for both of us if I had continued to work. Our potential was wasted.
I don’t want to see other children and families struggle like we did. I can’t speak for all Boards but there was a lack of understanding and specific strategies on how best to meet Nicole’s needs in our Board. FASD affects learning, behaviour and challenges unique from any other neurodevelopmental disability. This is why Bill 191 is so important.
We need school boards across the province to fully recognize FASD and how to support individuals with FASD and determine best practices in collaboration with us, the caregiving experts, on how to implement it in schools. We live in a rural area where services are few. We need equal and consistent awareness and collaboration across the Province. Our children deserve better. Our future depends on it.
I wrote last year on my blog about my 12 Wishes for My Daughter and FASD. One of those wishes was recognition of FASD in the Education System. I would love to see that happen in our Province before next Christmas. You can read my blog post here: it is a good snapshot of our life. Of Nicole’s life. 12 Wishes for My Daughter and FASD.
In closing, I’ll leave you with a plea from Nicole. The plea she made to the Prime Minister, which I hope our Provincial Members of Parliament and Cabinet Ministers will listen to and bring forward and pass Bill 191.
I found it fascinating the Minister thinks schools are already supporting students with FASD and a specific amendment is not needed for FASD. Here is a link to Day 30 of 99 Days to FASDay: Disrupted School Experiences one of the 99 Days to FASD posts I did last summer which provides details about my daughter’s school experience. This was written before I knew anything about Bill 191. Clearly the system failed her – as I’m sure it has thousands of others. We need to let the Minister and other politicians know the current educational system in Ontario does not accommodate children with FASD – no matter how much they wish to believe it does.
Don’t forget to CC your email to the following, and include your local MPP.
Premier Kathleen Wynne email@example.com
House Leader, the Honourable Yasir Navqi firstname.lastname@example.org
Opposition House Leader Jim Wilson email@example.com
Third Party House Leader Gilles Bisson firstname.lastname@example.org
Minister Michael Coteau – MCYS email@example.com
Minister Eric Hoskins – MOHLTC firstname.lastname@example.org
Minister Helena Jaczek – M of SS email@example.com
MPP Sophie Kiwala Parliamentary Assistant MCYS firstname.lastname@example.org
MPP Andrea Horvath email@example.com
Other suggested recipients could include: Irwin Elman, Ontario Advocate for Children, CBC News and TVO.
“You see mommy wine festivals … you see moms and yoga and wine [events], you see painting and wine, you see mani-pedis and wine.… I would argue that most women see wine as a food group and as a decompression tool,” she said.
“There’s an enormous sense of self-medication.… The fastest thing you can do at the cutting board is open a bottle of wine, pour yourself a glass. It’s faster than going to your doctor to say ‘I’m suffering from burnout,’ it’s faster than going to a yoga class and relaxing in a different way.”
It was more than 10 years ago when Johnston finally realized that she herself had a drinking problem.
“I got into trouble with alcohol in my 50s when I was over-performing at a job and used alcohol for self-medication,” she said.
Even though Johnston knew she was getting into trouble with her drinking, “it took two family members and a sweetheart who confronted me, and luckily I took a sledgehammer and went to rehab and I’m in my 10th year of sobriety,” she said in an interview with CBC’s Information Radio.
‘In Canada, we’ve seen a statistically sturdy increase’ in women’s drinking since the early 2000s, says Johnston. (anndowsettjohnston.com)
Johnston’s experience not only led her to rehab and sobriety, it also gave her insight into the connections between women and alcohol, which she discusses in Drink.
“Women are drinking far more than they used to.… In Canada, we’ve seen a statistically sturdy increase” in women’s drinking since the early 2000s, said Johnston.
‘Mom can’t cope unless she’s drunk’
She believes that one of the biggest contributing factors to the rise of drinking among women has been marketing.
There’s been a “pinking” of the market since the mid-1990s, Johnston said, with the invention of “alcopop,” drinks like Mike’s Hard Lemonade and Smirnoff Ice that are typically marketed to women — “what I like to call ‘chick beer’ or ‘cocktails with training wheels,’ an attempt to get the female gender to keep up with men.”
But that kind of marketing hasn’t focused only on fruity-tasting drinks for women, said Sheri Fandrey, who heads up the Addictions Foundation Manitoba’s knowledge exchange services. Many other products besides alcohol are marketed to women by using their own insecurities, she said.
‘[Children] are picking up on the fact that their parents, especially their moms, have to be anaesthetized to deal with them, and I think that sends a subtle but dangerous message to our young people.’– Sheri Fandrey, Addictions Foundation Manitoba
“We’re being influenced and manipulated in such subtle ways that we see it more as fun and a joke, and don’t realize that it is actually shifting people’s behaviour,” she said.
But there are some unintended consequences that come with marketing wine to mothers, says Fandrey — while the marketing might be intended for them, the parents aren’t the only people who see it.
Children also see and hear those messages, and get the impression that their mothers have to drink to deal with them, she says.
“[Children] are picking up on the fact that their parents, especially their moms, have to be anaesthetized to deal with them, and I think that sends a subtle but dangerous message to our young people — ‘Mom can’t cope unless she’s drunk,’” Fandrey said.
“It’s giving adults the sense that we can’t possibly cope with the stress and certainly can’t cope with child-related stress without alcohol, and for the kids, they’re picking up on it,” says Fandrey.
Using alcohol as a nightly coping mechanism is not the only drinking habit that is on the rise, she says — there’s also been a rise in risky drinking behaviour, like binge drinking.
“It used to be the realm of men to get stupid drunk and to do really foolish things under the influence,” but now women are starting to engage in that kind of dangerous drinking, Fandrey said.
Heavy or binge drinking is defined as having several drinks in one sitting: five or more drinks for a male, and four or more for a female, at least once a month in the past year.
Fandrey believes this type of drinking is still a way to cope with a stressful life, but with a “save it for the weekend” mentality.
‘If you want to know if you’re getting into trouble, ask yourself … are you drinking to numb? To numb feelings, to numb stress, to numb depression or anxiety?’– Ann Dowsett Johnston
“When people tell me what their reasons are for using substances like alcohol, you know, it makes sense in the short term for someone who’s feeling anxious and stressed to have that slight sense of numbness. There is a short term anti-anxiety effect from alcohol,” she said.
In the long term, though, alcohol contributes to depression, she said.
“It all seems OK, and there seems to be benefits and you don’t really look beyond that into what it might add up to in the weeks and months and years.”
There are very real dangers to physical health as well, says Johnston.
“We pay a lot of attention to the opioid crisis in Canada, and so we should, but the truth of the matter is more people are dying of alcohol every year than any drug overdose.”
Johnston also says not everyone who has a drinking problem will be able to see it.
“If you want to know if you’re getting into trouble, ask yourself two things: are you drinking to numb? To numb feelings, to numb stress, to numb depression or anxiety?” she said.
“And secondly, if you kept a drinking diary and said ‘tonight I’m only going to have one or I’m going to have zero,’ could you keep your promise? If you can’t you should really talk to your doctor and have a hard look at your drinking.”
1. Alcohol is a teratogen that readily crosses the placenta and damages the central nervous system and other organs and may impair prenatal and postnatal growth (Fitzpatrick & Pestell, 2016)
2. When a mother consumes alcohol during pregnancy, the blood alcohol of the fetus is the same or higher than the mothers (Bower & Elliott, 2016)
3. In the absence of facial dysmorphology, FASD is commonly underdiagnosed and mis-diagnosed as Autism Spectrum Disorder, Attention Deficit Hyperactivity Disorder and Conduct Disorder (Stevens, S., Nash, Koren, & Rove, 2013).
4. Only 41% of allied health and medical professionals are confident in asking about alcohol use during pregnancy which contributes to the under-diagnosis of FASD (Payne, Elliott, Bower et al., 2005).
5. FASD is recognised as the leading preventable cause of birth defects and developmental and learning disability worldwide (Mather, Wiles & O’Brien, 2015).
6. 92% of individuals living with FASD will have a co-occurring mental illness, with depression and suicidal ideation being the most common (Thanh & Jonsson, 2016)
7. 50% of Australian women will experience an unplanned pregnancy, leaving the chance of alcohol exposed pregnancies very high (Australian Medical Association, 2016)
8. The ‘spectrum’ of birth defects is due to the quantity of alcohol consumed, how frequently it was consumed and the timing during the gestation of the pregnancy it was consumed (May & Gossage, 2011).
9. Rates of alcohol use, binge drinking and drinking during pregnancy are increasing in young Australian women (Elliott, Payne, Morris, Haan & Bower, 2008).
10. The National Health and Medical Research Council and World Health Organisation advise to abstain from drinking alcohol during pregnancy and breastfeeding (NHRMC, 2009; World Health Organization, 2014)
11. The 3 sentinel facial features for FASD (thin upper lip, smooth philtrum, short palpebral fissure length) are specific to alcohol exposure and do not vary by race, age or gender (Moore et al., 2007).
12. Women have articulated that peer pressure & not wanting others to know they are pregnant, insufficient education and the enjoyment of alcohol as reasons they felt giving up alcohol during pregnancy would be hard (Tsang & Elliott, 2017).
13. Life expectancy at birth for people with FAS is 34 years old with the leading cause of death being suicide (Thank & Jonsson, 2016).
14. 83% of individuals living with FASD do not display facial features (Aros., et al, 2012)
15. 1/3 women are unaware of the dangerous effects alcohol has on a developing fetus (Paedon, Payne, Bower, Elliott et al., 2008)
16. Problems that emerge in childhood do not disappear with age, but rather form the development of additional and possibly more severe disorders later in life (Pei, Denys, Hughs & Rasmussen, 2011)
17. The risk of developing early onset (13-17 years) alcohol abuse disorder was two times higher in those exposed to 3 or more standard drinks in early pregnancy (Alati et al., 2006)
18. Facial dysmorphology only occurs when alcohol is consumed during the first trimester (Feldman et al., 2012)
19. 81% of individuals living with FASD will have a language disorder (Popova et al., 2016)
20. Children living with FASD are three times more likely to experience gross motor impairment than those without FASD. The most common gross motor deficits children experience is balance, coordination and ball skills (Lucas et al., 2014)
21. FASD occurs in all cross-sections of society, wherever there is alcohol there is FASD (Fitzpatrick & Pestell, 2016).
22. High socio-economic status is a strong predictor for alcohol use (McCormack, Hutchinson, Burns, Wilson, Elliott, Allsop, Najman, Jacobs, Rossen, Olsson & Mattick, 2017).
23. There is no threshold for prenatal alcohol exposure required for diagnosis of FASD (Bower & Elliott, 2016)
24. 1 in 4 pregnant women continue drinking during pregnancy, & of these, 96% report drinking 1 or 2 standard drinks (defined as 10g of ethanol) in a typical drinking session (2013 National Drug Strategy Household Survey, 2014)
25. 61% of pregnant women drank between conception and pregnancy recognition. Binge and heavy drinking the most common (McCormack, Hutchinson, Burns, Wilson, Elliott, Allsop, Najman, Jacobs, Rossen, Olsson & Mattick, 2017)
26. Global prevalence is conservatively estimated at 7.7 per 1000 population (95% CI, 4.9-11.7 per 1000 population) and is much higher in populations with risky levels of drinking(Lange, Probst, Gmel, Rehm, Burd & Popova, 2017).
27. Without intervention individuals living with FASD risk developing secondary issues such as school failure, addictions, mental health disorders, dependent living, unemployment, homelessness & incarceration (Popova et al., 2016).
28. 1/3 women binge drank during their pregnancy on a ‘special occasion’ (Muggli et al., 2016)
NOFASD Australia is an independent not-for-profit charitable organization. They are the national peak organization representing the interests of individuals and families living with Fetal Alcohol Spectrum Disorders (FASD).
Indigenous Approaches to FASD Prevention: Brief Interventions with Girls & Women
BRIEF INTERVENTIONS WITH GIRLS AND WOMEN provides a brief introduction to ways of working with Indigenous girls and women to address alcohol, pregnancy, and other related concerns. It is one of five publications highlighting how FASD prevention is understood and practiced in Indigenous traditional culture. The series is a collaboration of The Centre of Excellence for Women’s Health, the Thunderbird Partnership Foundation, and the Canada FASD Research Network.
Research has shown that everyone has a role to play in preventing FASD and that positive messaging is most effective for promoting awareness and discussion of alcohol use during pregnancy. Understanding positive messaging can help avoid the unintended negative consequences we have seen from previous efforts. Prevention-positive principles include:
Using non-exploitative imagery. Prevention campaigns are replacing lone naked-belly images with those that emphasize the mother-child dyad within a supportive network.
Respectful messaging that encourages women to access help if they need it rather than fear-based or blaming messaging like “if you loved your baby, you wouldn’t drink.”
Linking to where information and help is available.
Not describing FASD as “100% preventable” as this may lead women to think that the system of care won’t welcome them if they have already consumed alcohol in pregnancy.
Here are some recent examples of prevention-positive efforts from across Canada.
The Yukon FASD Interagency Advisory Committee is taking a prevention-positive approach with their “Alcohol-free is supportive” campaign. It consists of posters in English and French, ads in the local theatres, online ads, and a radio ad as featured on CKRW. Below is an example of one poster with plans for others in the coming months. Partners in this project are the Yukon Government, Fetal Alcohol Syndrome Society of the Yukon (FASSY), and Child Development Centre.
Women can sign up to do a “Dry 9” and receive a t-shirt and emails of support during their pregnancy. The Dry 9 movementencourages others to support women who decide not to drink any alcohol during their pregnancy. Short videos on topics such as the “Persistent Friend”, “Co-Parent to Be”, and the “Previous Generation” can be shared with others. The Alberta Gaming and Liquor Commission launched the Dry 9 movement last December as part of DrinkSense.
Health professionals in Quebec City will use printable pamphlets to have discussions with women and their partners about alcohol and pregnancy. Besides information on alcohol and FASD, the pamphlets, published with the help of Public Heath Agency of Canada, describe fetal development, and resources and support. Link to brochures and posters can be found on the Dispensaire Diétetique de Montréal site.
Having discussions about alcohol and birth control with all women of childbearing age and their partners has proven to be an effective FASD prevention strategy. This FASD ONE prevention poster aims to encourage health and social service providers to have discussions and to support a universal screening approach.
For previous posts about other prevention campaigns, see: