Ministry of Education and Finance FASD initiatives

Last week, the Rural FASD Support Network with guidance and input from the Ontario Roundtable Report, CanFASD, and Citizen Advocacy, released the 23 initiatives.  This week, we would like to explore in detail why these particular initiatives have been developed and the evidence-based model that has been developed as a result.  The first four initiatives we will explore this week have a common theme.  We believe the next logical step for Ontario is to focus on building knowledge capacity around FASD prevention and awareness through collaboration.

The first two initiatives for the Ministry of Education are connected together.  Bill 191 and later Bill 44 was introduced by MPP Kiwala in 2017 and unanimously passed first reading with support from all parties.  It was believed at that time that it required an amendment to the Education Act to implement.  However, it should be noted that it was PPM 140 that accomplished the same type of action for students with Autism.  Regrettably, due to the election and the dissolution of Parliament, Bill 191 and later Bill 44 died.  With its established record of support, it is our belief that this initiative should be resurrected.  It is our understanding that there are three school boards with programming for students with FASD including Waterloo District, Keewatin-Patricia District, and Catholic District School Board of Eastern Ontario.  CDSBEO developed their programming from the research-based modeling of British Columbia and Alberta and have gathered their own evidence to demonstrate the successful outcomes students with FASD are currently experiencing.  Their model is known as the Multi-Disciplinary Approach or MDA.  MDA is used through BC, Alberta and Manitoba primarily as a diagnostic tool but has been adapted for educational purposes by CDSBEO.  Of the two MPP’s who have seen this presentation, the feedback has been the same.  This model needs to be shared throughout the province.  We also recognize, though, each school board will need to create their own variation of the model based on their vision and resources.  This is why a foundational knowledge of FASD is paramount.  Just like all educators need to understand the basics of ASD to establish best practices, educators need to understand FASD as well and the similarities and differences between these two neurological disabilities.  CanFASD has already developed these online courses in partnership with the province of Alberta and as a result offers them to Albertan educators for free to encourage this capacity building.  Finally, a new definition for IPRC exceptionalities is needed.  The current exceptionalities were established in 1999 when children with exceptionalities and particularly FASD were still being institutionalized for their entire lives in mental institution like Rideau Regional.  In the last twenty years, we have come so far in understanding the brain that our IPRC exceptionalities should reflect that understanding.  We need a new category called Neurological to differentiate from Behaviour, Communication, Physical, and Intelligence for the benefit of all students with neurological disabilities such as cerebral palsy, acquired brain injury and others.  Research, (Olson, 2007) has shown the key to inclusion for children with FASD is early intervention.  If intervention isn’t introduced until later in life, adverse outcomes become much more likely.  We are also thrilled to have youth with FASD and Janet Carioni of CDSBEO join us on Feb 24 to explain this model in more detail and answer questions.

We also strive to prevent any child having FASD through education and support.  While we recognize there are many factors as to why alcohol is drank during pregnancy, we can make a difference for 25.7% of child-bearing aged Ontarians who participate in heavy drinking.  This is why mandatory training on FASD needs to be part of Smart-Serve certification.  The risks of heavy drinking are beyond drunk driving.  As CAMH shows, unexpected pregnancies and children with FASD, addictions and mental health challenges can also result.  There is also a belief within the FASD community that Bill 43 Sandy’s Law is not widely known among Alcohol, Marijuana, and Tobacco distributors.  The Rural FASD Support Network would like to encourage the province to create an opportunity to work in collaboration with these distributors to ensure all Ontarians are making informed choices.  We are thrilled to have a youth with FASD who has successfully completed the Smart Serve Course and Nancy Lockwood of Citizen Advocacy join us as well on Feb 24 to share their knowledge and experience in this area.

If you have not confirmed your attendance yet on Feb 24 for FASD Awareness Day at Queen’s Park, we invite you to contact Rob at ruralfasd@gmail.com .

FASD and the 23 initiatives

In September 2015, the Province of Ontario released the FASD Provincial Roundtable Report after speaking to hundreds of individuals, caregivers and service organizations.  Following that report, MCCSS created legislature and provided funding to support children with FASD known as the six initiatives in the FASD world.  To date, besides Sandy’s Law and Sept 9 being officially declared FASD Awareness Day in Ontario on Dec 14, 2017, no other legislature has been passed in Ontario regarding FASD.

The Rural FASD Support Network started as four families and two service providers gathered around a kitchen table and a question.  “What can we do to support not just ourselves, but others?”  In 18 short months, we grew from four families to 90 families across the province and 26 service providers.  Within this growth, we asked every single family,  “What are the biggest challenges you are facing?”  and “What is the best thing you have discovered in terms of support?”  We quickly discovered there are seven ministries and 14 issues that kept getting repeated.  We also discovered through our service providers that solutions and models to solve these issues already exist, we just can’t access them.  We also learned the six initiatives from the Roundtable Report which include the Indigenous Nutrition Program, the FASD Ontario website, the FASD workers, the FASD Support Groups, the FASD Advisory committees, and the membership with CanFASD through MCCSS have been extremely beneficial to all of our families.

As a result, we reached out to the Canadian FASD Research Network (CanFASD) and Citizen Advocacy Ottawa to develop some next steps to tackle those 14 issues.  Over the past 18 months, we have consistently dialogued, and with guidance from our service providers, have prioritized 23 initiatives that, based on our evidence and research, will make another positive impact in the lives of all Ontarians with FASD.  These initiatives all have a common theme.  Further awareness and education on FASD is needed in all sectors of society and these initiatives are designed to encourage further discussion and collaboration on how to reduce stigma for individuals with FASD.

While these 23 initiatives are seen as priority, we also know FASD is a societal issue that impacts all ministries and all levels of government.  This is why we are so thankful 20 of our MPP’s have already confirmed their attendance on Feb 24 for FASD Awareness Day at Queen’s Park and why we are available to speak to any MPP who wants a private audience afterwards.  As part of the day, we will have an FASD display and info session in Room 230 from 10am to noon where service providers and support groups from across the province will be gathered and available to speak.  At noon, we will hear greetings from MPP’s and you will have the opportunity to hear from our 14 youth and adults with FASD and their caregivers as to what they do well and where they need support.  Following that, there is an opportunity to meet in private with a team consisting of a youth with FASD, a spokesperson from our group and at least one service provider who will explain an evidence-based model that supports the youth.

While we understand these 23 initiatives are not a comprehensive provincial strategy, it is our hope they will serve as a starting point for further dialogue.  Over the next three weeks, we will be sharing with you how we came to these particular initiatives, the current and evidence-based models that demonstrate the positive impact and our youth’s stories that show how those models have already made a difference for our youth in the counties of Leeds-Grenville, Lanark, Stormont-Dundas-Glengarry and Prescott-Russell.

If you would like to meet with us on Feb 24 in Room 230 or afterwards in your office, please confirm your attendance by contacting Rob at ruralfasd@gmail.com.

CanFASD series on FASD FAQ's Part 5 of 5

In the final video of CanFASD’s series on FASD FAQs, Dr. Hanlon-Dearman is asked “What are the most important things service providers should know about supporting people with FASD and their families?”  Dr. Hanlon-Dearman starts by saying service providers need to be informed and educated about FASD.  The Rural FASD Support Network supports this statement and believes it's paramount that education and awareness extends to the general public and eliminate stigma.  People with FASD are served by waitresses, gas station attendants, bankers, attorneys, and anyone else in the general public including yourselves.  People with FASD are also in the media and interact with people of Ontario in all walks of life.  Life with FASD is challenging enough without having to deal with misinformed stigma.  This is why one of the Rural FASD Support Network’s mandates is to provide education and awareness to all sectors of society and are seeking your help in getting this message out.  Other organizations such as CanFASD and Citizen Advocacy have similar mandates.  This is why the province of Alberta has contracted CanFASD to provide online training to all Albertans and it is our hope that Ontario would look to emulate this best practice.  Citizen Advocacy has been leading the way by training over 4,000 service providers in the Ottawa area as well.

Dr. Hanlon-Dearman goes on to say it is also important to recognize each individual with FASD is a unique individual and may change over time.  Within my family alone, our three children all have FASD, but are completely different from each other.  They all have completely unique strengths, completely unique needs, completely unique personalities and our parenting style is unique to each child.  Each of the 90 families represented by our organization are unique to themselves as well.  This is why we are bringing 16 different families and 17 different infants, children, youth and adults with FASD with us to Queen’s Park on Monday, Feb 24.  The uniqueness of each of our families will be obvious.  In a couple weeks, we are expecting to share with you a profile of each of our children and youth outlining their accomplishments, their dreams and their challenges.

However, we have also seen common obstacles all of our families have had to overcome.  Within our monthly support group, we have been able to problem-solve several issues for our families through lived experience.  The issues we haven’t been able to resolve are primarily due to current legislature at all three levels of government.  As a result, we used the Ontario FASD Roundtable Report of 2015 as the foundational document and have partnered with the Canadian FASD Research Network and the Policy Department of Citizen Advocacy to identify where the current challenges at a provincial level now lay.  In our last four blogs, we will share with you what those current challenges are and provide a starting point for discussion on potential solutions.

We are thrilled to be sponsored by MPP Clark and supported by MPP Taylor in helping bring awareness on FASD to yourselves and the general public.  Once again, we will have displays setup with FASD service providers and support group leaders in Room 230 starting at 10am on Monday, Feb. 24 with speakers and greetings starting at noon and finishing around 12:30.  Lunch will be provided while several youth with FASD will be sharing their stories.  We thank the 15 MPP’s from three parties who have already confirmed their attendance and we look forward to having further discussions with you.  Please know as part of our organization, we have ten teams of three people each available to meet during the morning and/or afternoon on Monday, Feb 24 as well.  Within these teams, you will have the opportunity to listen to an individual with FASD share their story, a Rural FASD Support Network spokesperson, and an expert service provider who works within your responsibility.  To confirm your attendance or to book a private meeting, please email Rob at ruralfasd@gmail.com and it will be our pleasure to meet with you.

CanFASD series on FASD FAQ's Part 4

In the fourth video of the CanFASD series for Foundations in FASD, Dr. Hanlon-Dearman answers the question, “What would be an ideal multidisciplinary team and who should be involved?”,  Dr. Hanlon-Dearman replies the team should include a pediatrician, possibly a geneticist, speech-language and occupational therapist, a social worker, a coordinator, and an FASD educator located within the person’s community.  In Manitoba, they have established one team to serve the entire province of Manitoba located at the Winnipeg Children’s Hospital.  Within the hospital, they have five developmental pediatricians trained in diagnosing FASD, two geneticists who also can diagnose, two psychologists, one occupational therapist, one speech-language pathologist and one social worker of whom can provide all the necessary assessments, an educator who does the follow-up, a researcher and four admin.  However, the key is they also have manager with ten coordinators located throughout the province in the local communities to do the initial referrals. 

Within Ontario, there is no clinic or hospital organized in this manner.  While all these services do exist, they are all isolated from each other.  This is why the Ontario Roundtable Report on FASD identified the establishment of multidisciplinary clinics as being a priority.

To understand the current system, the following true story is based on two of our original members within the Rural FASD Support Network.

The story begins with a CAS Social Worker who placed two sisters ages 6 and 4 in an adoptive home and provided a ten-page social history for each.  There was no information about milestones or development but references made to alcohol usage, neglect and possible abuse.  However, nothing was ever proven in court so could not be stated definitively.  At age 6 and 8, the girls were struggling with reading so a speech language assessment was done by the school and services were provided.  At the same time, an IEP was developed and intensive academic support was given at the school.  Minimal gains were being made so the parents hired a psychologist to do an academic assessment to try and figure out what was happening at a cost of $2000 each.  With this information, slow and steady gains were made and the girls passed their courses.  In high school, things took a turn for the worst for the older sister.  Extreme mental health crisis was seen, police were involved, trips to the emergency ward started to happen, both parents had mental health breakdowns and no solutions were being found.  A referral was made to Children’s Hospital of Eastern Ontario through girl’s pediatrician where a geneticist took the CAS social history, the school’s speech-language report, the private psychological report, the emergency room reports from the parents, did her own assessment and gave a diagnosis of FASD.  The diagnosis went back to the pediatrician and the parents became their own social workers.   After the older sister turned eighteen, the pediatrician discharged her, and she started seeing a general practitioner who through their clinic assigned a social worker to her.  At the same time, an FASD worker through MCCSS was assigned to her who supplements the parents as a coordinator.  Today, the parents and the Rural FASD Support Network now have the role of FASD educator with the Canadian FASD Research Network or CanFASD as the researching organization.  The nine roles listed by Dr. Hanlon-Dearman were provided by nine different organizations in this family’s case.  Based on the sharing of stories with the Rural FASD Support Group, this is regrettably a very standard story in Ontario.

As part of our mandate, we are thrilled to be sponsored by MPP Steve Clark and supported by MPP Monique Taylor to bring FASD education and awareness to Queen’s Park again on Feb 24 from 10-1pm with remarks and a presentation by youth with FASD at Noon in Room 230.  We are anticipating ten different support groups from Sudbury, Owen Sound, the GTA, Halton, Ottawa, Belleville, Pembroke, Waterloo, Kingston, and Guelph joining us to share how they are bringing FASD education to their local communities.  We would ask to please confirm your attendance with ruralfasd@gmail.com so we can ensure the caterer has enough food for everyone.  If you would like to request a private meeting after 1pm on Feb 24, please speak to Rob at ruralfasd@gmail.com.  Finally, we would like to thank MPP’s Bisson, Gelinas, Hassan, Kanapathi, Kernaghan, Kusendova, Pettapiece, Sabawy, and Sattler for confirming their attendance with regrets from MPP Mitas.

CanFASD series on FASD FAQ's Part 3

In this third video of the CanFASD series of five which is located in CanFASD's Foundations in FASD online course, https://www.youtube.com/watch?v=8npYyC2nmOE&list=PLBhdT-nylDEM80KSG-J4vmfyE5L8q7WwW&index=3 Dr. Hanlon-Dearman answers the question, “Why is it so important to use a multidisciplinary approach to diagnosing FASD?”

Dr. Hanlon-Dearman explains that FASD is a multifaceted disability impacting all parts of the individual’s life and requires multiple supports.  She starts by explaining the purpose of having a medical practitioner doing the diagnosis based on the 2015 Canadian Guidelines.  It is important to note that diagnosis still requires documentation of alcohol usage during pregnancy by a credible source.  And because there is currently 428 comorbid conditions associated with FASD, a knowledgeable practitioner is vital.  She also refers to the importance of a psychological assessment to establish cognitive and adaptive functioning.  She goes on to explain that someone with FASD may have high cognitive functioning but tends to be very low on adaptive functioning.  This means someone may know how to go into a store and make a purchase, but is unable to do so because of the sounds, smells, sights.  They will likely have no understanding of correct change so are dependent on the cashier to do it correctly.  They will likely be unable to read the signs correctly and become very anxious and have an inappropriate public display.  Our current criteria of eligibility for Developmental Services says both cognitive and adaptive must be below the 5th percentile.  Most people with FASD will have cognitive in the 5-15 percentile and adaptive below 0.1 percentile.  This is why people with FASD don’t currently receive any support.  This denial of services doesn’t happen to the same extent to people with autism who will also have higher cognitive levels and low adaptive levels because a diagnosis of autism is deemed as an eligible diagnosis.  Dr. Hanlon-Dearman also explains the importance of speech-language pathologists.  SLP’s determine the communication skills of an individual with FASD including their ability to pronounce words.  A recent study on speech impairments for boys with FASD ages 4-10 determined 90% of them had a speech impairment at a level of disorder instead of delay.  This means without intensive and prolonged support, these boys are at a high risk of poor social skills, isolation, trauma, and later severe mental health challenges.  In our area of the Ottawa Valley, the only publicly funded organization providing speech support from ages 5-18 is the Champlain LHIN which will not do so without a medical diagnosis and doctor recommendation.  So you can’t get an FASD diagnosis without the speech assessment and you can’t get a speech assessment without an FASD diagnosis.  Dr. Hanlon-Dearman finishes by speaking about the role of an occupational therapist.  They determine motor skills and sensory profiles which tends to be very extreme for people with FASD.  Once again, the Champlain LHIN is the only publicly funded organization providing this service and again require the diagnosis first.

As a result, the only current option to diagnosis for FASD is through private means which on average is about $3000 to $4500 per person.  It also takes another $5000-$7000 a year in private support to have the individual achieve successful outcomes.

Knowing all of these facts, it becomes obvious why it is difficult for anyone to access supports in the province of Ontario and why the Rural FASD Support Network is committed to starting the conversations needed to make a change for the better.

CanFASD series on FASD FAQ's Part 2

The second CanFASD video which is located in CanFASD's Foundations in FASD online course, Dr. Ana Hanlon-Dearman answers the question “If we want to lower the prevalence of FASD, what are the conversations we should be having?”  https://www.youtube.com/watch?v=z2JFVSonH-I&list=PLBhdT-nylDEM80KSG-J4vmfyE5L8q7WwW&index=3&t=0s 

Dr. Hanlon-Dearman starts by speaking about how we are currently determining FASD prevalence.  Without a current tracking mechanism such as an OHIP code to determine general prevalence, we are dependent upon specific research projects targeting certain sectors of our society.  We do know 3-4% of children ages 5-7 in the 905 area have FASD https://canfasd.ca/wp-content/uploads/sites/35/2018/05/2018-Popova-WHO-FASD-Prevalance-Report.pdf. We know about 10-18% of inmates have FASD and 3-11% of children in care have FASD https://canfasd.ca/wp-content/uploads/sites/35/2018/08/Prevalence-2-Issue-Paper-FINAL.pdf and we know every sector of society where alcohol is being consumed has the potential of children being born with FASD..

Dr. Hanlon-Dearman goes on to speak about how we need to support women in our society to have healthy pregnancies.  The key point she makes is that we need to do more than just education.  We have reached a point in our society where most people know drinking alcohol during pregnancy is dangerous.  However, without a strong inclusive community and support, we are putting women at risk.  The Ontario Federation of Indigenous Friendship Centres understand this and are doing something about it.  Through their Nutrition Program, they are supporting their young women with a sense of belonging, acceptance and healthy options.  As demonstrated through their report, it is successfully lowering FASD prevalence among their population.  https://drive.google.com/file/d/0B1sCiqNTFMNyNlR6dnVfNnlKY2hFWWwza1ZlNDd3LUVlb3RJ/view?usp=sharing

The Rural FASD Support Network is doing the same.  By offering access to community supports, providing a safe and compassionate forum for discussion, respecting where everyone is at in their personal journey, giving potential solutions to current challenges, and having fun together, we truly are an inclusive community consisting of 87 families, 376 members of both adults and children with FASD and their caregivers, support staff, service providers, fellow advocacy groups and researchers.

However, our largest obstacle to building community is a lack of supported housing.   Based on feedback from our local partners of service providers, municipalities, and contractors, we believe a community of tiny homes where seniors, young families, and individuals with disabilities live together with a community building where training, events, medical support and daily living needs are provided is the model we should be pursuing similar to the Markham model.

An inclusive and assessible community that uses all the strengths of their residents to provide for their needs creates that strong mental health and sense of belonging.  It encourages family and community development rather than isolating people in their domiciles.  We believe the rural model of helping our neighbors is the environment where our adults with FASD excel.  We believe having face to face conversations is always better than texting through phones.  We believe the best marketing is word-of-mouth.  And we believe that when you combine people together for a common cause, there is no limit to what can be accomplished.

This is why the Rural FASD Support Network is thrilled to be sponsored by MPP Steve Clark to come to Queen’s Park for lunch on Monday, Feb. 24 from 10am to 1pm in Room 230.  We also thank MPP Monique Taylor, MPP Randy Pettapiece, and MPP France Gelinas for already confirming their attendance.  You will have the opportunity to meet 21 individuals with FASD from ages 3 to 36 as well as their caregivers, support staff and service providers.  We are also being joined by Dr. James Reynolds, Dr. Kaitlyn McLachlan, and several other service providers.  We are also available to meet privately afterwards.  To confirm your attendance for catering purposes, please reply to ruralfasd@gmail.com.

CanFASD series on FASD FAQ's Part 1

CanFASD recently gave the Rural FASD Support Network permission to use the series of videos Dr. Ana Hanlon-Dearman created where she answers some of the common questions people with Fetal Alcohol Spectrum Disorder (FASD) and their caregivers have. In the first video which is located in CanFASD's Foundations in FASD online course, Dr. Hanlon-Dearman answers the question “When someone gets their diagnosis of FASD, what should they do next?” https://www.youtube.com/watch?v=eRHobJg9ZcE&list=PLBhdT-nylDEM80KSG-J4vmfyE5L8q7WwW

Within this video, Dr. Hanlon-Dearman speaks to the importance of a strong community. For a child, that community includes their school, their pediatrician, their counselor, and their social worker. The Rural FASD Support Network has hosted two information forums for over 150 area service providers in the past year using the model Citizen Advocacy Ottawa has used in training over 4500 service providers over the past five years. The benefits of this education has led to the Catholic District School Board of Eastern Ontario to develop a multi-disciplinary team to support students with FASD successfully with the evidence to prove it. However, when you consider that only three publicly funded school boards in Ontario have a strategy on how to support students with FASD, further awareness is needed.

While Canada leads the world in FASD diagnostics having established the 2015 Guidelines, there are only four hospitals in Ontario who can diagnose adults with FASD. The biggest reason for this is a lack of an OHIP code for FASD diagnosis. Alberta and British Columbia tracks FASD prevalence and have proven the effectiveness of multidisciplinary clinics dedicated to supporting those with FASD. They have also seen the financial benefit of doing so. Since adopting their FASD strategies ten years ago, they have seen decreases in the cost of health, education, correctional facilities, employment welfare, mental health supports, and children protection services. http://fasd.alberta.ca/documents/year-7-evaluation-key-findings-and-recommendations.pdf
https://www2.gov.bc.ca/assets/gov/health/managing-your-health/fetal-alcohol-spectrum-disorder/fetal_alcohol_spectrum_disorder_building_strengths.pdf CanFASD recently released a study done by Dr. Popova who used evidence-based research to determine FASD is costing Canada 1.8 billion dollars a year annually or Ontario $600,000,000 annually. https://canfasd.ca/wp-content/uploads/sites/35/2016/05/IssuePaper_CostFASD-Final.pdf It should also be noted that there are approximately 300,000 Ontarians with FASD and 800 of them are being diagnosed annually at a cost of $4000 per person of which $2500 must be covered by the individual. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0060434

Dr. Hanlon-Dearman also speaks to the importance of using community services. However, in Ontario, because a diagnosis of FASD does not meet the eligibility criteria for Passport Funding unlike intellectual disabilities and Autism, there are extremely limited options for support. This is why the Rural FASD Support Network is asking for the eligibility criteria be changed to include FASD. Additional funding is not necessary according to our community support services since the programming and facilities already exists. Only the size of the community will change.

This is why the Rural FASD Support Network is pleased to be sponsored by MPP Steve Clark and supported by MPP Monique Taylor to continue this conversation at Queen’s Park on Monday, February 24 from 10-1 in Room 230. This is a societal stakeholder issue that requires depth of conversation and collaboration and we are pleased to be part of that initiative. We will be joined by individuals with FASD who are willing to share their stories and service providers who have solutions. The Ministries impacted the most by FASD include Health, Education, MCCSS, Mental Health, Housing, Indigenous Affairs, Rural Affairs, MTCU, Finance, and Solicitor General. The Rural FASD Support Network have specialized teams for each of these ministries and are available to meet after the presentation. To schedule those meetings, please contact us at ruralfasd@gmail.com

Rural FASD Support Network updates

It has been a while since our last blog primarily because of our vlogs.  However, we have had some new developments since our last blog that we wanted to update you on.
If you have not seen our new Youtube channel, please subscribe.  We are now posting our monthly speakers there and you might find their presentations to be useful.  Last week, we heard Mallory and Megan, our local FASD workers, share what they have learned this past year working with us and this community.  https://www.youtube.com/watch?v=nsxuzut4gdM
We also had Michael Jiggins, Executive Assistant to Minister Steve Clark, in attendance and share Minister Clark's perspective as well.  We certainly appreciated the fact that he picked up on the challenges we face, the lack of diagnostic capacity particularly around sensory profiling, the importance of funding support groups and their commitment to continue working with us.  https://www.youtube.com/watch?v=yV81H2NyjAg.
At the end, we celebrated our first anniversary with greetings from Premier Ford and cake.  Hard to believe it was only ten months ago the six of us were sitting around our kitchen table figuring out how to proceed.
We are also thrilled to announce that our attorney has submitted the paperwork for our non-profit designation and our constitution is finished and ready for our AGM in September.  This non-profit designation will enable us to receive funding from private foundations, United Way and municipalities.  We know our most effective advocacy route is to physically show up at Queen's Park and speak directly to MPP's and Ministers.  We also know several of our individuals don't have the private funding necessary.  When you look at our financial report, we don't have any money going to admin costs or facility cost.  100% of the money goes to those with FASD.
Beckwith Township and Barker Funeral Home are hosting a charity ball tournament for us in August.  Our children will be running the canteen and we will be passing out material to everyone who comes.  https://drive.google.com/open?id=1r6GOq6V5AQnY0g4pVD9K8s_DZa4k8NX4f6BSUlyzZws
Camp Connections is bringing us in to train their staff on FASD and Providence Point is hosting their camp in July and hosting us in August.  Following this training, they will be accepting applications for our children to attend camp this summer and all the following years.
FASD Ontario went through some transition but has now really ramped it up.  Check out the discussion forum and they are now providing French and Indigenous resources.
CanFASD is busy organizing the next international conference in April.  Focus will be on adults and caregivers.  https://interprofessional.ubc.ca/initiatives/fasd2019/
Derek and I also had the opportunity to share our stories with Minister Fullerton which was appreciated.  We don't normally meet people who are as informed about FASD as Minister Fullerton.  She was actually able to pick out which of my children have the sentinel features.
I recently did a presentation on Personal Wellness.  You may not be aware but in Canada, elementary teachers are the fourth most likely occupation to witness violence behind military, police and firefighters, teachers have the highest alcohol consumption per occupation and administrators tend to have a high divorce rate.  Personal Wellness is something educators struggle with.  As we know 75% of caregivers with complex needs children will experience a mental health breakdown at some point in their lifetime , I see a lot of parallels between being an educator and a caregiver in terms of stress and mental health challenges.
Thank you to all that have been reaching out.  It really does mean a lot to know we are doing this journey together.  We are humbled by the amount of people who have viewing the video Vanessa and the National Post did last month.  https://www.youtube.com/watch?v=Zpx4LfRyhxg&t=7s

Social Media and FASD

One of the topics garnering a lot of attention in the mental health world is social media.  Because 97% of all teenagers will use social media daily now, it is creating discussion as to whether we are seeing a growing addiction in this area.  A study done by Dr. Popova, Dr. Lange et al in 2013 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3691637/ shows that a disproportionate number of individuals with FASD will also develop an addiction of some type.  While it is not clear how susceptible people with FASD are to addictions, it is a very real possibility.  One of the questions that gets raised is how do you tell if someone has a social media addiction or not?  Just because someone uses social media a lot, it doesn’t necessarily mean they have an addiction.

A social media addiction needs to be diagnosed by a professional, but to determine if you should be seeking help, ask yourself these six questions from Dr. Griffiths in Psychology Today 2018.  https://www.psychologytoday.com/ca/blog/in-excess/201805/addicted-social-media

1.      Do you spend a lot of time thinking about social media or planning to use social media?

2.      Do you feel urges to use social media more and more?

3.      Do you use social media to forget about personal problems?

4.      Do you often try to reduce your use of social media without success?

5.      Do you become restless or troubled if you are unable to use social media?

6.      Do you use social media so much that it has had a negative impact on your job or studies?

In Lanark County, addiction counseling is part of mental health rather than a separate entity.  It is a speciality that a neuropsychologist or psychotherapist can support.  If you are seeking help, make sure you are looking for a counselor who specializes in addictions.  I can remember 10 years ago the advice was we should not be spending more than an hour watching TV per day.  The rule remains the same for screen time in general.  Yet, when you look at how much technology is a part of our life now, it is not surprising that over 69% of our teenagers are spending over 2 hours a day watching screens according to StatsCan 2015.  https://www150.statcan.gc.ca/t1/tbl1/en/tv.action?pid=1310079901&pickMembers%5B0%5D=1.1&pickMembers%5B1%5D=2.3&pickMembers%5B2%5D=3.1&pickMembers%5B3%5D=5.1

It is also not surprising that when you consider how social media works, that it can lead to addictions.  Social media works in the same type of way as addictive substances.  We know that alcohol is considered a gateway drug to other drugs.  When we look at which substances addicted drug users start with, 54% began with underage drinking.  https://www.ncbi.nlm.nih.gov/pubmed/26645418  Social media starts the same way.  It encourages usage with Pavlov’s theories of action/reward.  The number of children I see playing Candy Crush or Slither.io is substantial.  Because they are rated for children and are free, they have become very popular.  These games create no thought and simply have the child follow movement developing muscle memory for their eyes.  However, they provide use points or pictures of gold stars, coins or other items as rewards.  The children become very focused gathering points.  Fortnite is the game of choice now with 61% of all gamers and it can be very challenging maintaining mental health while playing.  The game is basically The Hunger Games in video.  You spend your entire time trying to not get killed.  Your brain stays stressed throughout with high chemical release and really has no healthy way of releasing such as the feeling and celebration of accomplishment.  Studies are showing desensitizing children to violence has adverse outcomes.  https://www.psychologytoday.com/ca/blog/sax-sex/201805/fortnite-boys-and-self-control

In the business sector, celebrating accomplishments is known to be a vital part of success.  Celebrating accomplishments give an end goal, increases motivation and productivity, improves physiology and strengthens mental health, tightens and strengthens our network, and positions you as a winner leading to greater success.  https://www.inc.com/bill-carmody/3-reasons-celebrating-your-many-accomplishments-is-critical-to-your-success.html When we are consistently denied the opportunity to celebrate accomplishments, we become much more vulnerable to depression and exhaustion. 

This is why in the Rural FASD Support Network, we make sure we always have sharing time in our support meetings and celebrate accomplishments.  It is this positive energy that brings us together and enables us to overcome the bad times. 

In my opinion, social media sites like Snapchat, Instagram and worst of all, TikTok do the opposite.  They never allow celebration and constantly encourage our teenagers and young adults through a barrage of notifications to keep gathering more likes.  In fact, they are now providing tutorials on how to legally create soft porn videos to get the most likes.  The old rule of knowing what your children are doing and who they are hanging with still applies.  There is still nothing wrong with telling our children to get off the devices and go outside and play.  We have found using parental control apps like Family Link for Google/Android or Circle by Disney can be very effective at controlling device usage.  I can also tell you as a Spec Ed educator of several years, the children will rumble for two days about having devices taken away.  If you remain firm and give them an alternative, you just need to hang tough for two days to get on the right path to self-control.  And as Dr. Sax says, self-control is the number one predictor to lifetime success.

Three Important Resources

I said this last year that at school, February is the toughest month of the year in terms of mental health challenges.  With that in mind, let me share with you the status of three resources. 

First, CanFASD has just released its first online course to the public, free of charge.  https://estore.canfasd.ca/foundations-in-fasd

This 60-minute course provides all participants with a certificate of completion and is called Foundations.  This course is designed to educate the public who may have no knowledge or misinformation pertaining to FASD.  It is written at the standard reading level of the public and uses lots of fabulous graphics and videos within the instruction.  CanFASD has also provided a postcard that can be shared with anyone you think may benefit from taking this course.   https://drive.google.com/file/d/1D7VPWuYn5y8BpoSenOnTansc7wKuTszd/view?usp=sharing

CanFASD brought together all their experts in collaboration to create this course and the quality absolutely shines through.  It is completely evidence-based, uses the entire CanFASD research library and hired the best of the best in their fields to contribute.  They just completed alpha and beta testing and received at 4.7 out of 5.0 rating after the beta testing.  They are still accumulating feedback data so please take the course and do the feedback survey at the end.  They will use your feedback to continue improving the course.  If you weren’t aware, Canada is the world leader today in FASD research and awareness.  POPFASD from the States, RRFASD from Australia, and sites from England and France are the other main organizations but CanFASD’s library of research is beyond all of them.  Please share the postcard with every single person working with you and/or your child.  The site is using research and data that has been released in the past couple months.  This course is completely current.

Second, the Rural FASD Support Network has been invited to present to several local organizations over the next couple months and wanted to share a sneak peek.  From an educational standpoint, we know 16% of children have sensory processing challenges according to the STAR institute.  https://www.spdstar.org/  We also know 90% of children with FASD will have mental health challenges and 75% of their caregivers will have a mental health breakdown within their lifetime according to CanFASD research.  

The evidence-based approach from the STAR Institute to supporting mental health and sensory processing is as follows:

1) figure out the triggers that is creating the dysregulation and remove them.  

2) establish a safe place and safe person who the individual will implicitly trust in all situations.  You accomplish this through focused relationship.  

3) once the individual is consistently regulated through these two steps, introduce them back into community with peers. 

This method is used in several different applications as well.  As a math teacher, I identify first where the math gaps are and teach those basic skills.  Next, I directly teach the new concept to the class modeling what they need to know.  Last, they get into their small groups and start working on the problems together.  http://www.edu.gov.on.ca/eng/teachers/teacher_guide_math_en.pdf

As a support group leader, we identified the needs of a group and fill them first.  Meet monthly, provide child care, provide community resource leads, and overcome time and money challenges.  We then specifically teach strategies for particular issues using expert presenters and direct support when needed and finally we create mentorships and friendships within the group.  I could go on to lots of other examples, but I suspect you get the idea.

Finally, as a proud Dad, my daughters are following in my writing footsteps.  You may have seen the article they wrote in CBC News https://www.cbc.ca/news/canada/ottawa/sisters-living-with-fasd-point-of-view-1.4970670 but let me share with you the background.  The CBC reporter we were working with is a free-lance reporter, and we thought it was going in the local paper.  The girls told their stories to me who wrote it down for them.  Christine Maki, the reporter, did a masterful job taking those stories and editing them into the finished product you saw.  She was given several photos to choose from and picked the ones you saw.  We were completely shocked when we saw the stories went national.  The girl’s only purpose in sharing their stories was to bring awareness to the public and courage to those with FASD in our local community and it turned into something much bigger than that.  The amount of comments we got from total strangers around the world is amazing.  Between the interview on CBC Radio about the hockey game we attended and the news article https://www.cbc.ca/listen/shows/ottawa-morning/segment/15659647, we got featured on the Ottawa Senators Facebook page https://www.facebook.com/search/top/?q=ottawa%20senators%20fasd&epa=SEARCH_BOX, added to the new CBC Kids website https://www.cbc.ca/kidsnews/post/in-their-own-words-living-with-fetal-alcohol-spectrum-disorder, articles in our local paper https://www.ngtimes.ca/?s=fasd and being interviewed on the local TV station and local radio https://lake88.ca/2019/01/17/in-focus-thurs-jan-17-2019-stacey-crosbie-from-the-local-rural-fetal-alcohol-spectrum-disorder-support-group/.  We say constantly we must get our message out beyond our FASD networks.  We must get into the public eye and gain third party support from the public.  Once again, we have people asking to help who are not directly impacted by this disability.  And that is a good thing.