Sunday, 19 January 2020

FASD: How Housing leads to Employment


One of the biggest challenges our youth with FASD face is becoming productive and contributing members of our society as adults.  While school can be very challenging, it can provide structure and strategies for success when informed educators and medical personnel are working in collaboration.  During that transition into adulthood, though, the individual with FASD experiences huge changes to their routines and structure.  For an adult with FASD, we have seen when a community with housing and employment opportunities, positive outcomes can be achieved .  Amongst the seven adults with FASD within our membership, we have confirmed what the research says.  When someone with FASD has a stable home with external support and a steady occupation, positive outcomes can be achieved.  When one of these three elements are missing, life can become very challenging.
Just like any adult, most adults with FASD want to live somewhere else besides their parent’s home.  However, it must be an interdependent model as explained by CanFASD’s paper on housing and homelessness.  This model exists in various places including 360 Kids and Participation House in Markham.  It basically consists of having people with disabilities living in an open and inclusive community consisting of their service providers and other members of the public.   This is why the Rural FASD Support Network is supporting the endeavor that Cornerstone Landing and Redwood Homes are proposing in terms of a rural housing model.  Cornerstone Landing is proposing a tiny home village where homeless youth, seniors, members of the public, a community hall and an administrative office are all located together.  Within this village, a supporting municipality is key.  Current codes make this model impossible and require changes at the municipal level.  Having a gathering place for the residents which is ran by the municipality for insurance and maintenance purposes is also key for building the village into a community.  One of the big advantages a tiny home provides over an apartment is cost and sensory processing.  For someone with FASD, these are huge considerations.  Instead of having a huge lump sum cost at the beginning for all funding partners, it could be done in small increments.  However, there are challenges to this model based on current legislature.  This is why we have partnered with Yuergen Beck of Redwood Homes and Cornerstone Landing to lend an additional voice in exploring these challenges and finding solutions.  These challenges include no specific code related to tiny homes or any regulation related to how they are built. 
Having a home and supportive community is not enough.  In the three earlier examples, work opportunities are also provided.  Work provides that same self-esteem, structure and purpose that people with FASD crave.  However, our current system is creating obstacles.  There are limited incentives for employers to invest in hiring people with FASD.  As a result, it is not encouraged to even state the existence of FASD during the hiring process which leaves both the employer and individual at a disadvantage.  Finally, when you consider that someone with FASD has a 74% likelihood of being unemployed compared to the national average of 6%, we need to build a system that encourages hiring people with FASD rather than sending them to social assistance.  As our adults with FASD will tell you, they have unique strengths that can benefit our economy.  Within the adults of the Rural FASD Support Network, we have a baker, a horse trainer, a dishwasher, a tent installer, a homemaker, a musician, and a computer programmer.  However, we also have several unemployed individuals looking for work that is sustainable for them and youth who can’t get into college because of the theory requirements.  While hands-on work is a strength for them, the lack of apprenticeship opportunities removes that possibility.
In our pursuit of inclusivity within our society, when adults with FASD have support, structure and purpose, they too become valuable contributors to our society.  We are thrilled to have Yuergen Beck, Shelley More, Karen Huber, Cassie More, and Rick Graham come with us on Feb 24 and share their expertise.  If you have any questions, please feel free to contact us at ruralfasd@gmail.com.

Saturday, 11 January 2020

FASD: Connecting Health and the Solicitor General


One of elements the Rural FASD Support Network has focused on is breaking down the silos that exist in our society.  It has been through this desire that we have seen the benefits of different organizations working together including our families, our service providers, our FASD workers and the ridings across this province.  Because our voting membership consists solely of those with FASD and their family members, we currently have the pleasure of serving in an advisory capacity in our local and national Mental Health, Policing, Education, Research, Housing, Employment, Support Services and Health sectors.  Through this advocacy, we would like to bring to your attention a link between the Ministry of Health/Mental Health and the Solicitor General which may not be well-known.
When mental health supports are lacking for those with FASD, adverse outcomes such as trouble with the law and incarceration become much more likely as our youth and families have discovered.  This is part of why we reached out to our policy leads at Citizen Advocacy and CanFASD to develop legislative suggestions for these particular ministries focusing on education and capacity building. 
The first thing we learned was there is not currently an OHIP code for diagnosing people with FASD which makes determining just how much impact FASD has on our province challenging.  However, we do know from specific studies that 3-5% of our population is a very realistic estimate.  The other challenge that comes from not having an OHIP code is it limits interest from our medical community in building diagnostic capacity.  In Alberta, British Columbia, and Manitoba, there is a diagnosing clinic for every 1.5 million adults.  In Ontario, that would require about 9 clinics to meet the population need.  There is progress being made in educating our medical personnel and correctional officers but it is limited to particular areas within the province.  Citizen Advocacy has developed a training model for these sectors and has delivered it to over 4,000 people within the province.  We have also heard from our mental health partners that there is a difference between childhood trauma and adult trauma.  Our current mental health models do well with short term support but children with FASD and/or have been adopted tend to require much longer support.  We also learned that mental health challenges is now considered to be a primary characteristic of FASD and not a secondary characteristic due to the very high prevalence among youth and adults with FASD.
While there is more emphasis being put on FASD training within our medical personnel in school, more education is needed with our current medical personnel.  This is why CanFASD created the series of videos with Dr. Hanlon-Dearman and Citizen Advocacy.   Our obstetricians and nurses serve as our frontline workers for FASD prevention and have a huge impact on future outcomes for these children.  At the same time, studies have shown our incarcerated population has a high prevalence for FASD.  When you consider that correction tends to use behaviour modification techniques which someone with FASD can’t understand, it is not surprising the prevalence is so high and further education on FASD is needed. 
In Lanark County policing, there has been an understanding for a while that mental health can impact behaviour.  Traditionally, the local police would take someone to the emergency ward if they were having a mental health crisis.  However, the follow-up that was needed was missing.  The Smith Falls Police made the decision to partner with Lanark County Mental Health for two purposes.  Their nurses provide mental health training to officers on when to call them and the officer will bring in the nurse to do an immediate intake on site.  The nurse will then provide the follow-up.  However, this partnership is based on a one year grant and needs further financial support.  When multiple partners collaborate, it is fabulous to see what can be achieved.  To learn more about this model and our partners, please speak to us on Feb 24 in Room 230 starting at 10am and we will be happy to introduce you to these service providers.  We will also have a special presentation starting at 1pm on this subject as well.  To request a private audience, please contact Rob at ruralfasd@gmail.com.

Sunday, 5 January 2020

Panel Presentation on FASD: Linking Mental Health and Justice on Feb 24 at 1pm


In 2004, Dr. Streissguth et al released a ground-breaking study on FASD that shocked everyone.  Within this large sample group of 415 adults with FASD, it was discovered that 80% of these adults went through the foster care system and were extremely vulnerable to five primary adverse outcomes.  The study showed generally 50% of these adults experienced disrupted school experiences, trouble with law, confinement, inappropriate sexual behaviour, and addictions.  The study also showed, however, early intervention while they are a child will reduce those prevalence numbers of 50% to 12%.

The youth within the Rural FASD Support Network know first hand the legitimacy of this study.  Most of our youth have came through the foster care system, experienced all five adverse outcomes multiple times and have found their success through interventions and support.
CanFASD has also done multiple studies since 2004 on this subject of preventing these five adverse outcomes and just released its latest paper by Dr. Pei and others.

We understand there is a direct link between Health, Education, Justice and MCCSS as it applies to FASD.  The U.S. Congress in the House of Representatives have introduced a bill which passed the first two readings with support from both parties and has now gone to committee.  In their bill which states 5% of first graders in America have FASD, they have linked Health, Mental Health, Education, Justice and Social Services together.  

There are also four youth in our support group who have experienced firsthand how mental health and justice go together.  With FASD, life for a teenager can be very overwhelming at times.  In those situations, what we have seen is an overpowering desire to escape pain and not really understanding why.  Kim Barthel, Occupational Therapist and Counselor to Theo Fleury, former NHL player, has proven that traumatic events that happen to a infant will remain within their body’s memory.  When you consider an adopted child journeys through traumatic events in their life and their brains with FASD is not physically equipped to deal with the trauma, it is not surprising that 90% of individuals with FASD have mental health challenges.  However, when they don’t get proper support, they eventually become stigmatized and isolated.  They are now vulnerable to the five primary adverse outcomes.    Three of the four families have been able to turn their lives around because of one primary reason.  They are surrounded by strong communities including their relatives, their support group, and their service providers who have supported them in an informed way throughout these challenges.  Stephane Grenier has demonstrated the importance of peer-based mental health education, and our support group reflects this complementary role. 

This is why the Rural FASD Support Network is thrilled to now announce a special panel presentation at Queen’s Park in Room 230 at 1pm on FASD: Linking Health, Mental Health and Justice as part of the Feb. 24 FASD Awareness Day at Queen’s Park.  Dr. James Reynolds of Queen’s University, Dr. Kaitlyn McLachlan of Univ. of Guelph, Lorena Crosbie, Executive Director of Children’s Mental Health of Leeds-Grenville, Chief Mark MacGillivray of the Smiths Falls Police, Rebecca Fromowitz, Executive Director of Lanark Mental Health and Skylar More, adult with FASD will share their expertise in this area.  These six individuals will show with evidence why supporting mental health creates positive outcomes for everyone in society and in particular youth with FASD.  

Aidan Moore, one of our youth who recently had his first show in Almonte, will also be recording the presentation and will be happy to share it with you afterwards if you are unable to stay.  If you want to learn how policing and mental health are supporting each other with proven positive results in Lanark County and how it could be done in your riding, we would encourage you to stay with us after the noon presentation.  Boxed lunches and wraps will also be served by Dana Hospitality.  We look forward to seeing you there and thank you for all your positive comments.  For any questions, please feel free to contact Rob at ruralfasd@gmail.com





Saturday, 14 December 2019

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 .

Monday, 9 December 2019

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.


Saturday, 30 November 2019

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.

Saturday, 23 November 2019

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.

Sunday, 17 November 2019

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.

Sunday, 10 November 2019

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.

Wednesday, 6 November 2019

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

Sunday, 23 June 2019

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

Monday, 25 March 2019

Social Media Addictions 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.

Friday, 1 February 2019

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. 

Wednesday, 26 December 2018

FASD Year in Review

As 2018 comes to an end, it becomes the time of year when looking back on what we have accomplished together renews our hope for what the new year will bring.  The original intent of this blog has never changed which was simply to record what my family learns through this journey so we can remember what has worked for us in the past.  We just discovered another interesting aspect of FASD this past week that Shelley discovered this time.
Our youngest, who just turned 12, declared this year he knows Santa is not real so we have made the shift to full disclosure now.  However, our traditions have remained the same.  Christmas Eve, my son was watching the Norad site following Santa as he went from country to country, talking about how fast he was going, and wondering what time he would be arriving at the house.  The cookies and milk got put out by the 18 year old and stockings weren't allowed to show up until everyone was in bed.  I made the mistake of not eating the cookies and milk this time and our 12 year old was talking about hearing the reindeer on the roof as he slept.  Even though, they all verbally say they know Santa is not real, they all act like he is.  We used to say it was because they were not giving away the secret but Shelley said it is because the concrete is just more powerful than the abstract to them.
To us, some of the highlights of this year was the ways we came together across the province to bring awareness to FASD.  While I recognize your list might look different from mine, these are the ones that really jump out for me.
Jan 6 - Template letter to Minister Hunter supporting Bill 191 released.  1247 people download the letter, still the #1 blog.  Bill 191 becomes the FASD rallying cry across the province.
January - Coordinating agencies get told they are hiring the FASD Key Workers by MCYS
April 11 - FASD Awareness Day at Queen's Park - Bill 191 passes first reading unanimously by all three parties, Sept 9 officially named FASD Awareness Day in Ontario, new prevalence number of 4% released by Dr. Popova
April - Health Nexus receives contract for FASD Website and development begins
May - The Rural FASD Support Network have five direct conversations with Simone Daniels of Doug Ford's office at rallies across the province, membership sits at six members
June - Senate releases report about the problems with the Disability Tax Credit and the CRA changes procedure and how they view FASD.
July - MPP Hillier has direct conversation with Minister MacLeod regarding the Rural FASD Support Network,  Rural FASD Support Network comes into existence with passing of constitution and Executive Board elected
August - Partnerships between Children and Adult Mental Health, Municipal Councils, Support Services and School Boards established with Rural FASD Support Network.  Capacity continues to grow.  Membership grows to 14 members
Sept. - Rural FASD Support Network launches Caregiver Support Group with children services and livestreaming.  Over 40 people attend the launch and more networking with community partners is established.
Sept. - Health Nexus launches funding initiative for support groups
Nov - Citizen Advocacy hosts annual FASD Symposium.  CanFASD hires Rob More as an instructional designer.
Dec - Rural FASD Support Network memberships grows to 45 members.  Health Nexus announces several new FASD support groups have been created across the province.

We are anticipating several major events soon.
1) MCSS releasing the new FASD Website
2) Minister MacLeod meeting with Rural FASD Support Network
3) Ottawa Senators welcoming Rural FASD Support Network at Jan 5 game
4) Feb 13, 14 Citizen Advocacy hosting FASD workshop for medical professionals
5) Rural FASD Support Network announcing two major sponsors and launching their new website
6) National Post and Vanessa Hrvatin releasing FASD Documentary
7) Feb 12 Health Nexus hosting workshop on support group facilitation

And thank you to Audrey McFarlane of CanFASD for passing this link along.  http://www.fasdcoalition.ca/looking-after-each-other-project/mini-documentaries/  If you haven't seen it before, well worth watching especially for advocating at your school.

We also just received information that the Ottawa Senators will play a 30 second message on the Jumbotron during the first intermission for their Jan 5 game welcoming us and providing some education about FASD for the entire crowd.

And if you haven't seen our new website, please go to https://www.ruralfasd.ca/.  We are just thrilled that you get another website now when you search for fasd.









Tuesday, 4 December 2018

Sugar and Mental Health


This past weekend, we got it reinforced for us why diet is so important for us due to its effect on our family.  I have an extreme sensitivity to caffeine that I have known for years.  However, we are now really understanding the impact processed sugar has on our children.  This past weekend, we experienced the effects of a sugar binge.  We changed our hot chocolate to the Tim Horton's hot chocolate from our usual brand because the grocery store was out of stock.  What we didn't realize is Tim Horton's hot chocolate has twice as much sugar in it, 24g per two tablespoons.  In 48 hrs, ten cups were drank which meant 1 kg of sugar was drank.  The effect was remarkable.
In those 48 hrs, we saw an addiction at work, no food eaten, 1 hr bed routines turned into 3.5 hrs, inability to deal with any sound, extreme anger and uncontrollable crying, objects thrown and broken, room torn apart, extremely high paranoia, desire to hide at all costs and all joy gone.  We were living with someone we did not recognize.
However, once we got in the truck and went for a long ride, threw all the hot chocolate out of the house, and listened to the radio, we were back to normal within six hours.  The following day, exhaustion set in and lots of sleeping happened.  By the second day, we are back in school, laughing and playing, and telling ourselves we can't let sugar into this house.
We have always known sugar is not good for us, but I set out to explore what is it about sugar that is so bad for our kids living with FASD.  Again, I'm not a medical practitioner but this was a fascinating study to me.  We know sugar leads to several medical conditions like obesity and diabetes, but the thing about it that really impacts FASD to me is the increase in serotonin and dopamine that comes from eating sugar.
Serotonin and Dopamine are described as neurotransmitters and exist in our brain and our blood stream.  In my understanding, a neurotransmitter is the chemical that carries messages from one spot of the brain to another spot.  These two also carry messages.  Serotonin helps regulate our emotions, anxiety and sleep patterns.  https://www.healthline.com/health/mental-health/serotonin#functions  However, like so many other things related to the brain, there is disagreement over how serotonin works.  https://www.medicaldaily.com/social-phobia-linked-high-levels-serotonin-time-rethink-ssris-and-other-anxiety-drugs-338608  The latest research, though, seems to indicate high serotonin increases anxiety levels.  For us, it certainly explains what we saw this past weekend.  It also comes from our gut through our digestive system.  Dopamine ties in with this as well.  High dopamine levels can create addicting behaviours so eating sugar leads to more eating sugar.  It also affects mental health including depression, lack of motivation, lack of joy, and a lack of movement.  https://www.healthline.com/health/dopamine-vs-serotonin#other-psychological-conditions and http://www.brainfacts.org/thinking-sensing-and-behaving/movement/2015/dopamine-and-movement  You will also see reference to SAD or seasonal affective disorder and a lack of serotonin which also helps explain why Nov-Feb are always so much tougher.  We just aren't getting the same levels of sunlight.  
As I was reading through this information, there were lots of references made to the fact these neurotransmitters are not well understood and their functions.  Like so many other things related to the brain, our children's neurotransmitters are not functioning as well as others.  And so, when there is an imbalance, they really can't handle it.  We are becoming more and more aware of just how much sugar is being put in our foods. 
If you are struggling with impulsivity, anger issues, sadness, laziness, lack of focus, sleeplessness or anxiety, an easy thing to look at is diet and sugar intake.  Eat fresh vegetables and homegrown meat and avoid the processed foods.  Besides, the Scotsman in me has figured out the processed foods are also the most expensive.  You won't go wrong with your local butcher and greenhouse.

Sunday, 4 November 2018

FASD advocacy in the Municipality

Shelley and I followed the local municipal elections very closely this year because of the direct impact they have on our family.  While we do see advocacy at a provincial and federal level as important, it does not have nearly the impact on our family as the municipal level.  I suspect that might be a surprise to you.  It is important to remember our civic lessons and what the three levels of government are responsible for.  At the federal level, their decisions generally have little impact on us.  Yes, the Disability Tax Credit and some of the Justice decisions are important but really that is about it.  At the provincial level, it is really about money.  It can be frustrating having to go from school board to school board, not being eligible for funding and support, and not having medical capacity, but really our provincial advocacy is about ensuring we have want we need in our local school and municipality.  Our municipality is really where we focus.  Our municipality is the one that determines our recreation options, they determine our policing policies, they determine the environment and setting around our house, our municipality influences our local hospital policies, and they determine our housing options.  This is why we were very excited to see our local results.  We have lots of familiar faces and good people to work with.
There are several reasons why you want to focus on local advocacy.  Even though Shelley and I have only been FASD advocates for three years now, we have been local volunteers and advocates for decades.  It has been at the local level that we have practiced and polished our advocacy abilities.  We have learned how to do a powerful ten minute presentation as a delegation.  We have learned the importance of following channels.  We know it is about establishing relationships and backing it up with being contributing member to our community.  Lanark County recently established Sept 9 as FASD Awareness Day as well through a declaration by the outgoing warden.  It was commented to me by a Council Council member they were surprised to see that happen because most of the time those requests get rejected.  I told him there were several factors but the main one was Reeve Richard Kidd from Beckwith Township pushed it for us.  When we talked afterwards I thank him and his reply was "When you do as much for the community as you do, you should get something for that."  Shelley and I never approached advocacy from an entitlement perspective, we never think we deserve this, we are just thankful when we do receive help.  The other nice thing about municipal advocacy is you don't deal with the layers you see at the provincial and federal levels.  You just call the reeve or mayor and talk face to face with them.  You also learn quickly what will sell and what won't.  Once you convince them, then you go as a delegation to council and you have ten minutes to sell them.  I always bring one of my children and speak as a representative of our local support group.  Explain who you are and what FASD is in three minutes, share the challenges you are facing today in two minutes, tell what your one or two main asks are and how they will make a positive impact on your child and group in two minutes, and wait for the questions.  I love local advocacy because things change rapidly and you see the immediate difference.  Provincial and federal advocacy is months and years of work, municipal advocacy is days and weeks and you don't need anyone else besides yourself.  The last part of municipal advocacy is the local networking.  Local media will cover it and bring awareness, other organizations will contact you to partner and support, and civic minded people will help you raise funds and awareness.  Your local county council and warden in particular also serves as our advocates at the provincial level.
It is easy to get discouraged at times at how slowly things change but don't lose sight of the fact the greatest impact you will ever have is at your local level.  You have your greatest impact on your family followed by your community.  If you make a difference for your family, friends and neighbors, that is a noble accomplishment.