“…Prevention goes beyond informing pregnant women of the risks of consuming alcohol during pregnancy, but also includes preventing adverse outcomes in individuals diagnosed with FASD…”

https://preventionconversation.org

FASD is a leading cause of developmental disability in Canada, and while the conversation around alcohol and pregnancy is so important, prevention remains a significant challenge. Prevention goes beyond informing pregnant women of the risks of consuming alcohol during pregnancy, but also includes preventing adverse outcomes in individuals diagnosed with FASD.

This week on the CanFASD Connect blog, they will be hosting a ‘Prevention Series’, where they will be sharing posts daily, on the topic of Prevention, including article summaries and guest blogs.

CanFASD researchers focus on the areas of prevention, intervention and diagnostics. On the CanFASD website you can find ‘The Prevention Conversation’, which is an online training program for front-line health and social services professionals to provide them with the knowledge, skills, and confidence to engage their clients/patients in a supportive and non-judgmental conversation about alcohol use during pregnancy, its lasting effects on the developing child, and resources and supports available to women of childbearing age.

“CanFASD has created a common definition of FASD to be used by Canadian governments, service agencies, and researchers. The standard definition aims to alleviate stigma and improve understanding of FASD, create consistent messaging, and change the societal perspective of FASD toward a strengths-based, whole-body approach…” 

https://canfasdblog.com/2019/07/10/policy-action-paper-toward-a-standard-definition-of-fetal-alcohol-spectrum-disorder-in-canada/CanFASD

Policy Action Paper: Toward a Standard Definition of Fetal Alcohol Spectrum Disorder in Canada 
JULY 10, 2019 BY CANFASDBLOG 

Language is a powerful tool which has been used to celebrate people, but also alienate populations of people. Individuals with disabilities have been faced with discrimination and stereotypes that separate them from the rest of society, including individuals with FASD. Using language that highlights the strengths and abilities of the individual, as opposed to only focusing on the challenges they face, allows society to change its perspective on FASD, and remove perceived limitations placed on individuals with FASD. 

CanFASD has created a common definition of FASD to be used by Canadian governments, service agencies, and researchers. The standard definition aims to alleviate stigma and improve understanding of FASD, create consistent messaging, and change the societal perspective of FASD toward a strengths-based, whole-body approach. 

CanFASD recommends the following definition when writing FASD policy or addressing services to individuals with FASD: 

“Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term used to describe impacts on the brain and body of individuals prenatally exposed to alcohol. FASD is a lifelong disability. Individuals with FASD will experience some degree of challenges in their daily living, and need support with motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills to reach their full potential. Each individual with FASD is unique and has areas of both strengths and challenges.” 

Read the full paper here to learn more about the importance of language and how we crafted our definition. 

Authors: Kelly Harding, Katherine Flannigan, Audrey McFarlane

This fully bilingual website will help you find the closest available Fetal Alcohol Spectrum Disorder (FASD) services, learn about a variety of FASD topics, read the latest news and find training.

We want to make sure the website is useful to parents, caregivers and service providers. We need your help to keep it current and to promote it!

Please send us links to resources, services, training and news related to FASD and we will add them. Use the Add a Service, Update a Service, Add a Resource, Update a Resource and Contact Us forms found on the website to do so.

Please help us promote the website to anyone who may be looking for information and services about FASD.

·         The link should go to https://www.fasdinfotsaf.ca

An amazing new resource on the FASD Ontario website. This booklet is designed for non-Indigenous people who care for Indigenous children with FASD. It shares some reasons why culture is important, and how parents and caregivers can connect as a family to the child’s culture. It also contains comments from other families and service providers.

The booklet can be downloaded for free from the FASD Ontario website.

The National Post has released the first of its seven part national documentary on FASD with parts 2 and 3 coming shortly. This documentary is a great way of getting the general public aware and talking about FASD. They dedicated a great amount of time developing the series with lots of interviews with people in the FASD community. It is the first time Canada and frankly the world has ever seen coverage on FASD this extensive.

Please share with your contacts and get everyone you know to do the same. We have have an opportunity to create awareness outside our FASD circles and inform the general public. Please help share this message. https://nationalpost.com/feature/prenatal-exposure-to-alcohol-affects-a-million-canadians-why-its-time-to-start-tackling-our-hidden-drinking-problem

http://tinyurl.com/y28d8xlt 
The Hamilton Spectator

Dad says teenage son with FASD fell through the cracks of the public education system.
NEWS 04:00 AM [on April 9, 2019]
by Natalie Paddon  The Hamilton Spectator

Jeff Gowland is suing the Hamilton-Wentworth District School Board for not providing adequate resources to his seventeen-year-old son who suffers from Fetal Alcohol Spectrum Disorder. – Scott Gardner,The Hamilton Spectator

Seventeen-year-old James Gowland does not have formal grades beyond Grade 6 and does not have any friends.

His father says this is because the public education system has failed James, who has fetal alcohol spectrum disorder.

The Dundas teenager wanted to be treated “normally” and put in a class where he could make friends, said Jeff Gowland.

But James, who will be 18 this summer, hasn’t attended school this year, and his dad doesn’t see him going back.

“You can make all the changes you want, but he’s not wanting to go anymore because you let him … slide through the cracks and he disappeared,” Gowland said.

James’ case illustrates the challenges of educating a population of children with special needs, ranging from FASD, to autism, to Down syndrome.

There are more than 12,500 students receiving special needs services in the Hamilton-Wentworth District School Board, representing 26 per cent of total enrolment, according to  a 2017 auditor general report.

Accommodations are made for students in consultation with parents and can include changes to environment, instruction and assessment, said public school board superintendent of specialized services Peggy Blair.

The board provides  services and supports in a child’s home school “as often as possible,” but sometimes turns to other options, including special classes and educational support staff, according to its website.

In James’ case, special needs programs, regular classrooms, an educational assistant and work placements were all tried, but nothing seemed to work, begging the question: Is inclusive education working? And if not, what happens to kids like James?

Gowland, who said he was told James is a “safety risk” given past outbursts, wanted his son to try classes he’s passionate about — like auto — instead of being shut down because of potential risks.

School board officials said they can’t comment on James’ case, but Blair said they must balance a student’s right to learn with ensuring a safe environment.

Gowland said James has punched walls to release tension, but has never attacked anyone.

Since being diagnosed with FASD in Grade 6, James has bounced between a variety of classrooms and programs.

For a time, he sat in a room off the school library alongside an educational assistant where he did paperwork every day, his dad said.

Most recently, he attended an alternative learning program through the school board at the public library, which he loved. But that fell apart because James needs structure, and the program only ran for two hours once a week. After the summer break, Gowland couldn’t get him to return because he had fallen out of the necessary routine.

He also worried about what would happen if James had an outburst and started swearing and yelling, given the program is held in a public space.

“We’ve literally just stopped fighting,” Gowland said. “It’s not worth the argument.”

“He’s going to create problems,” he added.

Now at almost 18, James has pretty much thrown in the towel on a formal education, his dad said.

He said his son became fed up after feeling like he was never listened to despite doing what was asked of him.

“He said, ‘Dad, I want to be normal … I want to be in classrooms with my friends, I don’t want to be isolated, I want to take shop,’ and nothing happened,” Gowland said.

James started to show signs of FASD around middle school when the structure of school changed, requiring students to move from class to class, said Gowland.

The challenges became more apparent in Grade 7 when James was moved to a special needs class in a new school. Within the span of a year, Gowland said his son went through three teachers and three principals.

At times throughout his schooling, James was classified as “uncontrollable,” and his parents were often called to pick him up.

As part of its annual survey, People for Education, an organization to support and advance public education, started asking principals if they have asked parents to keep their children home for all or part of the day after hearing about the issue intermittently.

In 2017/18, 58 per cent said “yes,” noted executive director Annie Kidder.

“The No. 1 reason is safety,” she said.

Before the end of his Grade 8 year, James was sent to a special needs class at his local high school because his elementary school didn’t know how to deal with him, Gowland said.

This set James back, Gowland said, because he was isolated, away from the school’s general population and assigned tasks such as collecting blue boxes.

Blair from the board said, generally, schools have conversations with parents about options, and once a student is placed in a program, they are reviewed at least annually to see how they are doing.

Jacqueline Specht is the director of the Canadian Research Centre on Inclusive Education at Western University.

She pointed to a recent report on inclusive education called “If Inclusion Means Everyone Why Not Me?”  — a collaboration between Community Living Ontario, Western University, Brock University, ARCH Disability Law Centre, Brockville and District Association for Community Involvement and Inclusive Education Canada — in which research showed students being excluded in both special and regular classes.

“It tells me something’s not working regardless,” she said.

By Grade 10, James’ days were being shortened so he could avoid the commotion of other students coming and going.

The late arrival and early dismissal helped, but the school’s size still brought “too much stimulus” for James, Gowland said.

While he wanted to take auto, school staff worried the smells and noise of the shop area might be too much for him, he said.

Gowland said he offered to attend the class with his son but was told he couldn’t because it could set a precedent for other students.

In order for James to participate in after-school activities like basketball and football, Gowland said he was told he would have to come into the school.

“Everything was ‘He can’t, he can’t, he can’t,'” he said. “I was, at this point, starting to get tired of the word ‘No.'”

Gowland said he was turned down when he offered to speak at an assembly about FASD so students would understand what James was dealing with and might take his disability into account.

James never finished his Grade 11 year and instead was sent assignments to complete at home.

Gowland said ultimately he would like James to have a special needs class tailored to his needs.

He pointed to a program in Waterloo Region specifically for students with FASD, which he was told isn’t an option locally.

While a couple of boards in the province have these classes, HWDSB has staff who are “continually learning” about FASD to support schools, said Blair.

It’s not about funding, she noted, but about the board’s model.

Blair stressed the importance of co-operation between home and school in finding a plan that works for students.

She stressed it’s important parents reach out if they feel they need more information or are not being helped.

“I think the parent should say, ‘I’ve been involved with a lot of people, but I feel like someone needs to own this for my child,'” she said.

Specht said problems arise in the education system when the focus is on finding a place where a child fits instead of creating an environment that works for the child.

“It’s not about trying to fit a child to an environment,” she said. “Inclusion is about helping the environment fit the needs of the child.”

“All our research shows inclusion is much better for all students, not just kids with disabilities,” she later added.

Life for the family, who adopted James at 3 and his brother — who was diagnosed with an intellectual disability — is about finding ways to keep the teenager busy and out of trouble.

While he finds people to chum around with, he doesn’t have close friends — relationships Gowland believes James should have had the opportunity to develop through school.

Specht said it’s not surprising kids moved to different classes and programs have a hard time creating friendships, especially if they have challenges.

“To me, our schooling is about trying to prepare our kids for the world,” she said. “If we just keep moving kids around because they don’t behave properly then they’re not getting prepared.”

James wants to be a mechanic.
He wants to work and make money. But, realistically, who will hire him without the necessary social skills and experience, his dad asks.
“He’s got no formal education, but even in the real world, who’s going to take the time to take this boy on, to work with him, to mentor him, to in a sense watch and babysit him,” Gowland said.

“He’s walked away with nothing,” he later added. “That’s the worst part about it.”

npaddon@thespec.com
905-526-2420 | @NatatTheSpec

The Ontario FASD website is LIVE [The URL for the website is fasdON.ca (English) or tsafON.ca (French). Both these URLs redirect to fasdinfotsaf.ca/en or fasdinfotsaf.ca/fr ]

“…FASD online portal is an online, accessible and bilingual website that has a directory of FASD information, a searchable directory of Ontario FASD services, a listing of learning events and a FASD news feed…”
http://www.children.gov.on.ca/htdocs/English/specialneeds/fasd/index.aspx
Ontario. Ministry of Children, Community and Social Services
Special needs > Assistance for Children with Severe Disabilities

Health Nexus has received funding from the Ministry of Children, Community and Social Services, (MCCSS) to distribute small subsidies.

These subsidies are meant to help build and mobilize communities by bringing together families, caregivers and individuals experiencing Fetal Alcohol Spectrum Disorder (FASD) in the form of a Support Group.

Applications for subsidies up to $4,500 were accepted in October 2018 for the first cycle of funding, and were used to create new, or build upon current FASD support group activities within communities. The first cycle began in the fall of 2018 and is scheduled to be complete March 31, 2019.

Subsidy up to $4,500 per FASD Support Group Applications for Cycle 2 are now being accepted. Applications are due by Wednesday April 17, 2019 at noon.

For more information, please visit
https://en.healthnexus.ca/FASDSupportGroups-HowToApply

Health Nexus has received funding from the Ministry of Children, Community and Social Services, (MCCSS) to distribute small subsidies.  These subsidies are meant to help build and mobilize communities by bringing together families, caregivers and individuals experiencing Fetal Alcohol Spectrum Disorder (FASD) in the form of a Support Group.

Applications for subsidies up to $4,500 were accepted in October for the first cycle of funding. These subsidies are used to create new, or build upon current FASD support group activities within communities. There will be two cycles of funding available through this project. The first cycle has begun in Fall 2018 and runs to March 2019, and information about the second cycle will be shared in early 2019.   

If you are interested in information about the subsidy process and how to apply please click here. Please note that the application forms are subject to change slightly for round two, as we are hearing feedback and evaluation of application process from group leaders, advisory committee members and our project team.

https://en.healthnexus.ca/FASDSupportGroups

“…We talk with Vanessa Hrvatin, recipient of the 2018 Lang Fellowship in Journalism. We look at how great the risk of FASD is, who is most affected, and how myths and stigma complicate understanding of the disorder.”

National Post

Postmedia News
February 19, 2019
5:23 PM EST
[Photo] Warning: drinking alcohol during pregnancy can cause birth defects and brain damage to your baby
A new report found up to three per cent of Canadians could have fetal alcohol spectrum disorder.Ian Kucerak/Edmonton Sun

We have known for nearly half a century that drinking alcohol during pregnancy can harm an unborn child.

But the rate of children with fetal alcohol spectrum disorder is higher than expected, and could outpace more widely understood disorders such as autism.

But because of the cause, this is a disorder that comes with a high degree of stigma, on top of the huge need for family supports.

We talk with Vanessa Hrvatin, recipient of the 2018 Lang Fellowship in Journalism. We look at how great the risk of FASD is, who is most affected, and how myths and stigma complicate understanding of the disorder.

21:15 Host Dave Breakenridge and 10/3Join the conversation