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.

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.

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.

Ministry of Education consultation

The Ministry of Education is now accepting feedback from the public regarding priorities within the school system.  I am certainly disappointed there is nothing listed regarding special needs in general or FASD specifically.  Please don't pass up this opportunity to make your voice heard.  Go to https://www.ontario.ca/page/for-the-parents to share your feedback.  I would suggest choosing the open submission method and list yourself as a stakeholder referring to your FASD support group as your organization.  Be sure and register to participate in a town hall call as well.

This is what I wrote for the eight boxes.
1) Our STEM instruction needs to get out of this language based instruction.  Our students living with FASD have amazing gifts in these areas but require a visual, verbal hands-on approach in an environment that is conductive to their learning.  Stop requiring them to learn math as another reading textbook and put it in a more application context.  Get them on the tools and learn it that way.

2) There needs to be collaboration between the school system and these needed job skills instead of the current silo situation.  Schools have no idea what employers are looking for and employers have no idea what schools are doing.  There needs to be an identification of what basic skills employers would like to see developed and schools focus on delivering them.  Coding needs to be included in the math curriculum and starts at the elementary level.  There needs to be more flexibility for high needs students particularly those living with FASD.  We need to see radically different environments that copy current workplace environments like Shopify or Google environments.

3) We spend the entire year teaching strategies to our children to enable them to experience success and then take it all away for the standardized testing to remind and shame them just how poorly they will do when we take all their supports away.  We also lower our school's overall score by giving them zeroes if the school chooses not to have them do this shaming exercise.  Don't require students with diagnosed intellectual disabilities like FASD to take the test or punish the school for exempting them.

4) There needs to be parent input as to what life skills are needed.  As the parent of children living with FASD, this is the most important thing to me and the schools teach none of it.  I am teaching all of it because the school's concept of lifeskills is way above what it actually means.  There also needs to be a public mindshift on debt in general.  Society today believes personal debt is acceptable but has no understanding of the impact it has.  Life Skills and financial literacy needs to be taught in a concrete manner.  We used to teach how to take care of a baby in a concrete manner, we needs to teach all lifeskills in real life ways.

5) There needs to be a secure storage place in each classroom.  All cellphones get placed in the storage place by a monitor at the beginning of class and removed at the end of the class.  There also needs to be more monitoring and education about social media.  For our children living with FASD, social media is the hardest and worst thing to try and teach. It always leads to our worst crisises.

6) The first and most important subject within the sexual health curriculum needs to be on alcohol and the impact it has on pregnancy.  There is no current discussion on Fetal Alcohol Spectrum Disorder and how it is only created by drinking alcohol during pregnancy.  Within mental health, FASD also needs to be discussed because these individuals are the most vulnerable in our society today to mental health challenges.  Through an understanding of how an individual with mental health challenges will behave, we can have open and frank dialogue without shame and stigma on how to best accept and welcome these individuals.

7) We believe using the model of the Ontario Patient's Bill of Rights would be an excellent way to start.  http://ondri.ca/sites/default/files/HSF%20Patient%20Bill%20of%20Rights.pdf  Change health care to education and patient to parent and use those 12 concepts.  Number 6 with having a third-party competent coordinator would solve a lot of problems that currently exist.  We are using our FASD Worker in this role.  We also believe in the 5C's of Advocacy.  Communication, Collaboration, Consistency, Creativity, and Clarity.  When both parties are committed to doing these five things, we have seen just how successful school can be for our children living with FASD.

8) Our current school system has very little recognition or understanding of how Fetal Alcohol Spectrum Disorder impacts 3% of our children.  They currently put them in impossible environments, ask them to do things they are not capable of, shame them when they fail, don't support them to succeed, punish them as soon as they act out and eventually kick them out where they are forgotten.  These injustices need to end and the Ministry should lead the way by having school boards learn about this disability and speaking with parents about how to best support them.  If they do so, everyone will see how FASD directly impacts mental health, math skills, financial literacy, sex-ed and every other item listed in this survey.

 I recently gave a presentation at the Rural FASD Support Group meeting and would invite you to watch it.  It is very long being almost 90 minutes but you might find it useful.  I focus on the advocacy methods Shelley and I use, the org chart and explanation for our Ontario schools and finish with a good IEP explanation for a student living with FASD.  https://www.facebook.com/robert.more.794/videos/1994012353998884/

On another note, you might want to check out the following site.  http://policyconsult.cpso.on.ca/?page_id=10258  The College of Physicians and Surgeons are accepting public feedback as to the new policies with continuity of care.  I think we have all been in the situation where we have had to explain to a new doctor what FASD is.  These policies are aiming at eliminating that.

To be aware of what other consultations are happening, please go to https://www.ontario.ca/page/consultations-directory

Provincial FASD News and DTC success!!

This week's blog is just focusing on various FASD news from the province including funding for support groups, SEAC appointments, MedicAlert Pilot Project and DTC info.

First, though, is the funding for support groups coming from Health Nexus.  The following announcement was sent earlier this week.  The webinar will walk you through how to apply and the deadline is Oct. 24.

We are pleased to announce that we are now accepting applications for the FASD Family/Caregiver support group funding!!

An informational webinar to assist with the application process has been scheduled for October 11, 2018 @ noon. 

Funding Details

• Up for $4,500 is available to create a new FASD Support Group or to further develop existing FASD Support Group activities across Ontario.
• Deadline for the first round of applications is October 24, 2018 at noon.
• Details of the second round of applications will be coming in early 2019. 
• The application package and funding details will be available in French shortly.

The below application materials can be found at https://en.healthnexus.ca/FASDSupportGroups

• Guidelines for Funding

• FAQs
• Funding Application Package

For additional information, please contact:

Angela Geddes, FASD Project Coordinator

a.geddes@healthnexus.ca

416-408-6868

1-800-397-9567 x 2292

It is important to note Health Nexus is tasked with developing new support groups as well.  The Rural FASD Support Network is applying for funding on behalf of the Smiths Falls FASD Caregiver Support Group and is hoping to be applying for support groups in the Lanark, Almonte, Kemptville and Winchester as well within the next year.  Each one of these groups is eligible for the full $4500 and size doesn't matter.  If you and a couple other people in your area want help getting launched, this funding can be used for that.  For us, child care and weekend meetings are non-negotiable.  It is just too hard to meet otherwise.  Finally, this funding is for now until March.  We apply again in April for another round of funding.

There was also an announcement sent out from Mary Cunningham of FASD One cunninghammary@rogers.com that if any individual wants to serve on an SEAC as a FASD rep, she will do the appointment.  Please note, though, if you are part of a current support group who is registered with Health Nexus, your local leader can also do the appointment.  Health Nexus is a provincially recognized organization and your registered support group is considered to be a local chapter.

Medic Alert just put out this announcement they are looking to expand their program across the province.  If you have a teenager, young adult or adult living with FASD, please consider applying for this program.  We constantly hear from our local first responders what a difference it makes for them when they know the individual they are helping is living with FASD.

MedicAlert FASD Pilot Program

MedicAlert Foundation Canada is a registered Canadian charity that proudly embraces our mission to put every Canadian in a position to benefit from high-quality health information at time of need. Since 1961, we’ve helped protect over 1 million Canadians.

MedicAlert is on their 3rd year of running our pilot FASD program.  This was created in November 2015 in partnership with the Anishinabek Police Service and Maamwesying North Shore Community Health Services to help those living with FASD in the community.  MedicAlert is working towards expanding this program nationally.This pilot program intends to achieve more equitable treatment for persons living with FASD by raising awareness among emergency first responders on how to approach these individuals as identified through their MedicAlert ID. As you know, FASD isn’t always recognizable to those who don’t know the signs.  With the FASD program, there’s an effective way to identify the subscriber, understand how to de-escalate a potentially volatile situation and immediately reunite the subscriber with family or caregivers.

Cost to join the program is FREE. This includes one year of MedicAlert service, the unique FASD ID, shipping, registration and tax. 

For customer service support, please contact Jennifer Cuthbert, Customer Service Manager of MedicAlert at 1.866.679.3217 ext. 1250.

Finally, some of you know that I had applied for the Disability Tax Credit for all three of my children and two were rejected.  After reapplying and being rejected again, we filed an objection to the decision to the Appeal Branch of the CRA.  We just received notice that both children have had their decisions reversed by the Appeal Branch.  Interestingly to me, the Appeal Branch is supposed to speak to our representative, in this case our accountant, but they did not.  They simply took the letter I wrote describing why I thought the decision was wrong and reversed it.  And they gave us six years instead of the normal three before we need to apply again.  I'm not going to share the letters I wrote as it is very personal to my son and daughter but I focused on the diagnosis they have according to the DSM-5, how it impacts their living, and how it affects their mental functioning.  I used this website which was extremely helpful.  http://www.fightingforfairness.ca/content.php?navID=8  I also wrote the letter using the advice that I needed to describe what life would look like as if my children had no support at all.  

The Rural FASD Support Network continues to grow in its advocacy.  Discussions continue with potential sponsors and garnering non-profit status.  We also received notice from MPP Hillier's office that they are continuing conversations with Minister MacLeod on our behalf and working toward getting an audience for us through the public consultation process.

The Mystery of Special Education in Ontario

In the field of Special Education, September is always the busiest month of the year.  The first month, the school admin are finalizing staff and class lists, resource teachers are speaking with classroom teachers and educational assistants about special needs students, classroom teachers are figuring out their students names and what their schedule looks like, and support staff are learning the students and how to best support them.  In my experience, nothing really gets finalized for the year until Thanksgiving weekend.  Students are still moving, teachers are determining IEP’s, and educational assistants are getting moved around. 

I am constantly reminded of how much dedication, passion and care my teaching colleagues possess.  I know lots of teachers who constantly work 55-60 hours a week.  They arrive an hour early, stay 30-60 minutes after, and do all their grading and lesson plans on the weekends.  They will have multiple phone calls every week, 200 papers to grade, 60 different lesson plans, and make a thousand decisions in a week.  And they do it with grace, compassion, and respect for every student in their class.  

I share this because collaboration with your school is always the best route to advocacy.  I know having to re-educate the school staff every year is frustrating but it is necessary.  When my wife and I are working with our children’s staff, we always have two key points in mind.  One, we will have one big ask that is the highest priority for the year.  This year, we want to see our son’s reading level increase by two grade levels.  We won’t determine how that is to happen.  We leave that to the teaching professionals to figure out.  Second, we only ask for things the school can deliver.  We will ask for a quiet learning environment, a resource teacher who understands FASD, board support people who understand ABA, behaviour and sensory needs, a classroom teacher who maintains routine and establishes relationship, admin who understand the difference between will and frustration, and regular honest communication between staff and us. 

There are two facts most people are not aware of regarding special education.  The first fact is special education in Ontario has not been revised since 1999.  When you consider in 1999, we were still institutionalizing our special needs children for the rest of their lives, we are using archaic procedures and policies as the basis of special education.  Most people don’t realize IPRC’s came about because schools used to deny entrance to special needs students.  The IPRC process came about to stop that practice.  That is why in the IPRC there are two things determined.  If the student is identified with an exceptionality, then they must be placed somewhere within the school system in the environment that makes the most sense.  However, the Education Act was amended in 2008 to eliminate the possibility of students being denied entrance due to an exceptionality.  And now, we have accessibility laws that take it even further.  This is why most school boards are easing out of the IPRC process and going straight to IEP’s.  There are now other laws that accomplish the exact same thing as an IPRC. 

The other thing most people don’t realize is IEP’s only impact grading.  The IEP determines how the student gets graded for their report card.  And grading is determined solely by the teacher and their professional judgment.  The principal, the resource teacher, any school board personnel can advise the teacher, but they do make the final judgment as to how the student will be graded. 

So how does educational assistant support get determined?  The Ministry of Education establishes that criteria.  The criteria is the students must have two of three particular needs.  They must have a medical need such as feeding, toileting, mobility, breathing supports, a safety need such as a lack of danger awareness, regular violence, regularly running away, or use of weapons, or a functioning need such as lack of social skills, communication, or intellectual challenges.  Interestedly, this criteria is exactly the same for Developmental Services and Community Living.  In other words, educational assistants are for individuals who live fully dependent lives.  Now there has been times in my children’s lives where they were fully dependent on us and their support structure to function.  During those times, an educational assistant was and is necessary.  However, the goal is always to eliminate the need for the educational assistant and have them live interdependent lives with safe places, good people, proper strategies and calm environments at a grade level they can do independently.

So what do you do if you can’t get the collaboration you need from the school?  The IPRC meeting can be used for that purpose as well.  The IPRC meeting can bring the principal, resource teacher, guidance counselor and classroom teacher together with you and your advocate.  During the discussion involving the identification, you can explain what FASD is, what it looks like and why it should be defined as a physical disability involving the brain.  During the placement discussion, you can talk about the need for resource teacher involvement and possible educational assistant support.  And if one of the members leave or aren’t present during the meeting, you can refuse to sign the paper and request a second meeting in writing and make it clear all three people need to be present.  Ideally, though, the school should respond positively to a simple verbal request to meet.  An IPRC request should be used with discretion.  If you have a concern about the class, speak directly to the teacher and express the concern.  If you feel you want to speak to resource or the principal because your conversation with the classroom teacher wasn’t fruitful, always do so.  In my opinion, an IPRC request should be used after 2-3 attempts with the classroom teacher, resource teacher and principal have been made and your clear and simple request is being dismissed.  In my experience, it loses its impact if it gets used frequently.

The school system is very large and very complex at times.  However, it doesn’t need to be.  Know your child, learn how to collaborate with your school and keep it simple.  Pick one goal at a time and focus on it.  Remember, it is not a sprint, it is a journey and even when things are bad, you are still gaining insight into long-term solutions.

Rural FASD Caregiver Support Group launches

The Rural FASD Caregiver Support Group physically launched in Smiths Falls, ON today with a livestream and recording of their speakers.  Shelley More began with a timeline of how the Group got to this point, introduced their executive members and finished with their mandate, vision, and mission.  Tanya Eichler spoke next with a short talk on "What does FASD look like?"  Wendy Reed and Malcolm McIntosh shared their life experiences as caregivers of young adults and adults living with FASD.  To watch the entire presentation, go to https://www.facebook.com/robert.more.794/videos/1949415728458547/  or listen to the entire presentation at http://www.driveplayer.com/#fileIds=1uSaxlG4soQxm3syDSApzBFBqPjmvzq0M&userId=102324156331647622331

We had 45 caregivers, service providers, members of the general public and children in attendance.  We were particularly excited to have Open Doors staff who are in charge of Children's Mental Health in Lanark County and folks from Citizen Advocacy, Kids Inclusive and the Public Health Unit.  Calvary Bible Church also brought folks to help with child care and welcoming.  We will meet again next month on October 20 at 10:30am at Calvary Bible Church in Smiths Falls where I will be speaking about our educational system and how to advocate for what your child needs.  We will livestream again so if you can’t attend, feel free to go to our Facebook page to watch.  https://www.facebook.com/groups/RuralFASDOntario/?ref=bookmarks  Going forward, we will have two parts to our meetings.  We will start with an educational piece which will be livestreamed for about 30 minutes.  The second half will be completely private and confidential with no recording of any type and reserved to just the caregivers.  This time will be an opportunity to ask and talk about anything going on in people’s lives.  Some of the feedback given included comments on how informative Tanya's presentation was, how powerful Wendy and Malcolm's stories are, how well organized everything was, and amazement at how much has been done in two short years.  Most important to us, though, were the comments on how nice it was for the kids to just have fun and for us to be with those who get it.

We also had two more partners help us with bringing awareness to our local area with Hometown News publishing a local feature about the launch  https://drive.google.com/open?id=1J8QjnA94NBd9_qIcl0BaYgSHXFNUB4v2  and Lanark County formally proclaiming Sept 9 as FASD Awareness Day in Lanark County.  https://lanarkcounty.civicweb.net/document/84408/County%20Council%20-%2029%20Aug%202018.docx?handle=BB605BB7978147508102F24013D9F79C

Finally, a comment about our current provincial government.  If you haven't been to the MCSS website lately, you should check it out.  http://www.children.gov.on.ca/htdocs/English/specialneeds/fasd/index.aspx  When you read it, you may notice subtle changes but I would like to point out what I find intriguing.

1) They are now quoting Dr. Popova's study and have changed the prevalence number.

2) It appears they made these changes on June 29.  Again, I find it intriguing these changes were made on the day Minister MacLeod took on that portfolio. 

3) They did not change the number of funding of support workers.  It is still over 50. .

4) #5 now says "Establish a consultation group to provide advice and feedback to inform implementation planning and prioritization of efforts."  We had been asking if the advisory committee had been formed and it appears they are still working on it.  

5) They added a seventh initiative which was not part of the original six.  By saying "Support public awareness initiatives targeting at-risk groups, including women of child-bearing age," this is encouraging to me to continue bringing awareness and education to the province.

I have had direct conversation with MPP Hillier and he is currently working behind the scenes on our behalf.  I have known Randy for years and know him to be an honourable man.  Our MPP’s are incredibly busy right now but I believe this will happen.  Don't give up.  I was reminded yesterday by several people that it is amazing how much we have accomplished in two years.  I believe we will accomplish just as much in the next two years.

FASD news and Awareness initiatives

Thank you to all who have been passing information along.  This blog is a bit of a collection of tidbits and news from the past couple weeks.

The Rural FASD Support Network made the decision to continue a virtual presence to celebrate FASD Awareness Day this Sunday.  Lake 88 elected to make their Friday In Focus show about FASD and had us come in and share some information.  To hear the interview, please go to http://lake88.ca/2018/09/07/in-focus-fri-sept-7-2018-fasd-awareness-day/  They also posted the interview on their Facebook page.  Be sure and listen for Sky talking about what she would like for people to know about her.   Please feel free to share and like.  The United County of Leeds-Grenville also officially declared Sept 9 as FASD Awareness Day and posted through the municipality news feed so every municipality in Ontario received this announcement.  I didn't expect them to post the blog site on the announcement so welcome any new readers.  https://www.leedsgrenville.com/Modules/News/index.aspx?newsId=a15ddc80-e1bc-4f3b-b777-4c492c835c17

The Network is getting excited about Sept 15 when we do our official launch for the physical group.  We have confirmed Minister Steve Clark of Housing and Municipal Affairs will be attending and saying a few words and sticking around afterwards to talk with folks.  We have confirmation of attendance for members of the Public Health Unit, Mental Health Unit, Open Doors, OPP detachment, and our Key Workers will be in attendance taking referrals.  It sounds like we may have around 20 families and children in attendance and Julie Mercier is providing child care who is used to working with children with FASD.  Thank you to all who have contributed to costs.  As stated before, we intend to livestream and record our monthly speakers through our Facebook page with Tanya Eichler, psychotherapist for next week.  https://www.facebook.com/groups/RuralFASDOntario/?ref=bookmarks

Health Nexus is getting close to rolling out both of their initiatives involving the website and support group funding.  To get notification of when the website goes live, go to https://bit.ly/2PA0oDw .  We are also expecting an announcement from them soon saying the application for support group funding is now live with applications.

The Government of Ontario is currently taking consultation from the public.  The items I am listing is Passport and SSAH Funding eligibility through MCSS, provincial-wide strategy for FASD in Education, and increased diagnostic capacity in Health.  https://www.ontario.ca/page/consultation-review-ontario-government-spending?_ga=2.100304861.234184700.1535739480-77602624.1524938653

The Ontario Human Rights Commission also just released their latest report on the status of special education in our school systems today.  http://ohrc.on.ca/en/policy-accessible-education-students-disabilities  With the completion of the first week of school, I am extremely cognizant of the hot topics of discussion and the amount of misinformation floating around.  I will do a blog probably in a couple weeks on how to advocate in the school system but I'm hoping to record my presentations on Sept 20 at the Ottawa Adopt4Life support group meeting and then at the Ottawa FASD Symposium on Nov 3 with Jonathan and Janet.  http://fasdconnection.ca/event/2018-fasd-eastern-ontario-symposium/  It absolutely pains me to see how so many of you are struggling with your schools when I know it can be so much better.  When I read through the OHRC report, the nine ongoing barriers really stood out for me which I fully agree with.  

1) ineffective communication to parents and students about their right to accommodation, and their right to be free from discrimination and harassment in education

2) inadequate training for education providers on disability-related issues, and the duty to accommodate students with disabilities

3) insufficient resources and supports in the classroom

4) long waiting lists for assessments

5) negative attitudes and stereotypes

6) physical inaccessibility

7) inappropriate requests for medical information

8) ineffective dispute resolution processes

9) outright denial of disability-related accommodations

The reason they stood out, though, is the only barriers a teacher or principal have any control over is #1, 2, 5 and 9.  And they can all be changed through communication, collaboration and clarity.  I understand why we are seeing more and more advocates joining forces with parents because it is difficult to navigate but I would still encourage you to always assume your school wants to help, they are either limited by  #3, 4, 6, 7, or 8 or aren’t sure what the solution should be.

Conversation about the new provincial FASD Website

I recently had the pleasure speaking at length with Jo-Anne Robertson of Health Nexus, project manager of the new provincial FASD website, anticipated to go live in late fall of this year.  For someone who freely admits she knew almost nothing about FASD when she took on this project, she has remarkedly connected with an outstanding circle of advisors.  Within the conversation, it became obvious she is connected with the top three FASD research organizations in Canada which is significant because just about every new piece of Canadian FASD research coming out now is coming from one of these three organizations.  She is connected with four extremely experienced, leading medical practitioners from within this province and consults regularly with one of them.  She speaks constantly to two of the most experienced, knowledgeable service providers in the province who represent the city and the rural/north interests.  Finally, she has several of the loudest caregiver and youth advocates in the province meeting regularly to give her feedback on the quality of the website.  She shared with me her biggest fear is that she would get feedback that the quality of the website was lacking.  It was clear this project is more than a job for her.  She really sees this as her mission and her way to contributing to this cause.  She did pass along two requests.  One, they have just completed a review of all the available material to ensure all the material uses research-based information and the feedback they have received from the youth is it is very text-based.  She said it is very difficult to find research-based video material that gives advice and direction to youth living with FASD in an engaging manner.  If you know of sources or potentially even create it, please pass that information along to this blog.  The second request is this blog earlier passed out a notice that if you wanted to be notified when the website goes live, to click on a link contained within a flyer.  The link was wrong, so the flyer has been attached again with the correct link.

The Rural FASD Support Network recently soft-launched its fundraising campaign.  While the Network is anticipating funding from Health Nexus later this year to support its Caregiver Support Group, it is fundraising for other reasons.  As can be seen from its Facebook page, its caregiver membership has grown from four to 23 in six weeks.  Most of its membership are joining a group for the first time and are in various states of success.  The Rural FASD Support Network is aware of great conversations with Education Minister Thompson and Housing and Municipal Affairs Minister Clark and has been told they are getting an audience with the Premier.  Accommodation and Travel Costs associated with this advocacy is paid out of pocket by its membership.  There is also a desire to provide child care for its 19 new members at the monthly support group meeting and provide a live interactive video feed to its members who can't physically attend.  With our launch in three weeks, we wanted to give the option to contribute financially to those who wanted to help in that fashion.  As a result, we have launched a Go Fund Me page with 100% of the donations going to those three purposes.  https://www.gofundme.com/rural-fasd-support-network?sharetype=teams&member=649854&rcid=r01-15351970023-3b0636e28f9e4e74&pc=ot_co_campmgmt_w

And a big thank you to all who have already donated.

We are anticipating attendance at our Sept 15 launch to be around 50 people including service providers from the local Health unit, the Mental Health unit, local schools, local police, local FASD Key Workers, the church hosting us, local municipal officials, and Minister Steve Clark.  Hopefully, the live stream will work and you are certainly welcomed to watch on Sept 15 from 10:30 to 11:30am on https://www.facebook.com/groups/RuralFASDOntario/?ref=bookmarks

Tanya Eichler is presenting on "How to recognize when someone is living with FASD."  and Wendy Reed and Malcolm McIntosh will share their stories for the first time ever about their teenage son and adult daughter. 

Finally, lots happening the next couple weeks again.  We are meeting with MPP Hillier on Tuesday and the initial Parent Support Group meeting with Health Nexus, Situation Table Coordinator Stephanie Gray on Friday about funding possibilities, Judy Kay from Thunder Bay to find out what they are doing, an article in the Hometown News coming out, Lake 88 doing a feature on the launch the following week, and of course the walk on Parliament Hill Sept 9.  If interested, I'm coming out of hiding and speaking at the local Ottawa Adopt4Life chapter Sept 20.  I recently came across the Alberta prevalence report done by Dr. Ospina where she found potentially 52% of all children currently in Alberta foster care are living with FASD.  http://fasd.alberta.ca/documents/Systematic_Prevalence_Report_FASD.pdf  Adopt4Life and we have discovered with so many of our children being adopted, a strong relationship between us is vital.  The province recently increased their funding so if you don't have a local support group for your adopted child, please feel free to reach out to them as well.  http://www.adopt4life.com/become-a-member/

FASD Ontario Website Update #2 CORRECTION In the latest website update #2, the link to sign up to be notified when the website goes live was wrong and it sent you to a blank page. My apologies for any confusion this may have caused. Please use this link to be notified when the final website goes live in late 2018.

FASD and Correctional Services

As mentioned last week, the Rural FASD Support Network has been having lots of conversations in the past month about individuals living with FASD and correctional services.

I recently shared a story with a few people now about three individuals in the Leeds-Grenville area living with FASD.  The first individual came into contact with the police, Child Protection Services were called in, the judge decided to put the individual into the system, the Mom's MS has gotten much worse, Dad is extremely angry and they have no idea where their child is now.  The second individual came into contact with the police, put on trial and found guilty, but due to Mom's and her MPP's advocacy, the judge placed in him a mental hospital for assessment and support.  He is home now and doing well.  The third individual came into contact with the police, was immediately sent to a hospital for assessment which didn't happen, family was encouraged to get mental health support by the police and eventually got help and a diagnosis.  She is home and doing well.

The police, however, tracked all this and made the decision to enter into a partnership with the local mental health clinic.  They just completed a pilot project in two locations where a mental health nurse does an immediate intake on site with the individual and establishes mental health support the next day.  It proved to be very successful and they have now permanently hired this nurse.

I know this because of a conversation with the Executive Director of Lanark Mental Health.  Through our conversation, she asked some great questions about FASD and has committed now to providing training for all her staff on how to support individuals living with FASD and identifying when someone may be living with an undiagnosed FASD disability.  She has also joined our local FASD organization now, making staff members available for our group meetings, and speaking regularly with our FASD Key Worker.  Finally, she introduced me to the Executive Director for Children Mental Health and he has done the same thing and also asked us to sit on their advisory committee.

However, the big question they asked was if we have a suspicion, who do we send them to?
I didn't know so I have completed an update capacity scan across the province on adult diagnosis.  It appears to me there are only four facilities in the province who will diagnose adults using the multidisciplinary approach as established in the 2015 Diagnostic Guidelines.  Surrey Place in Toronto led by Valerie Temple who are limited by MCSS to only accepting adults from the GTA but will diagnose adults outside the GTA for $2500, Dr. Louise Scott from Paris, ON may on occasion, CHEO led by Dr. Melissa Carter in Ottawa but the adult has to come with an adult neuropsychological assessment as they do not currently have the particular discipline, and I believe NorWest Community Health Services in Thunder Bay led by Maureen Parkes will also accept adults for diagnosis.  It is so bad that I discovered Sault Ste. Marie is sending their adults to CHEO in Ottawa for diagnosis.  But the scariest part to me is a couple of these individuals are nearing retirement age and with the retirement of Dr. Barry Stanley from this province, we are now bordering on a crisis situation for diagnostic capabilities.  Please share this information with your General Physicians.  It is not just at Queen's Park we need people talking.  We need the medical community talking about this, we need our municipalities talking about this, we need our mental health partners talking about this.

Finally, some odds and ends.  Health Nexus has announced they would like family photos for the provincial FASD Website and you can request a notification for its launch in the fall.

The new FASD Ontario website will be a bilingual website with a directory of online FASD information; a directory of Ontario FASD services; a listing of learning events (live and archived); a news feed; Frequently Asked Questions about FASD and a discussion board.

What's New We are continuing to develop the FASD website. In the past few months we have: Contacted FASD service providers to get their information and permission to list their services in the services directory. Created inclusion criteria for the FASD information (existing websites, PDFs and videso). The inclusion critieria explains what information will be included and why. Our list of FASD information was reviewed by FASD experts and they recommended what to include and what to not include based on the inclusion criteria. We are developing bilingual postcards about the new website for FASD Awareness Day. To order postcards, please contactm.gabert@healthnexus.caby August 31, 2018. We are also: Speaking to youth with FASD to see if we can provide information they are looking for on the website. Working with the advisory and FASD experts to decide which services to include in the FASD services directory. We Want Your Photos We are looking for photos of real families for the new FASD website! We need photos of children of all ages, youth and families who represent the diversity of Ontario. If you wish to submit photos of your children or family here are the instructions: 1.     Email Malou Gabertto get a consent form 2.     Sign and return the consent to Malou Gabert 3.     Save photos with the name on the photo consent 4.     Email photos toMalou Gabert or upload photos** **you can send Malou the images via wetransfer.com, Dropbox (https://www.dropbox.com/sh/oh767kt3yqsy4b3/AAB5qTzqDpwRiSLWFkeFK5lEa?dl=0) or another file transfer program.  Questions? Contact Jo-Anne Robertson at 800-397-9567 x2238 or j.robertson@healthnexus.ca. On our way! Over the next month, we will finalize the content of the draft website. In early fall we will field test the draft website with parents/caregivers and service providers. Based on what we learn from the field testers, we will make changes and finalize the English website. Then, we will translate it into French and test the French website in late fall. Stay tuned! If you want to be notified when the final website goes live in late 2018, you can sign up here.

 Also the Ottawa Children Inuit Centre is wanting to partner with us if you are interested.

As a community member, parent, caregiver…
WE NEED YOUR HELP!         

Come join the group discussion on:
(1) FASD programs and services for Inuit;
(2) Gaps and challenges to accessing FASD programs and services, and;
(3) Recommendations on how to best support families, children and youth with FASD.

COME SHARE YOUR THOUGHTS!!

When?
Wednesday, August 15th 2018
Dinner @ 5:30pm / Discussion @ 6-7:30pm

Where?
230 McArthur Avenue - 3rd Floor

Available
Child Care (Please RSVP), Bus Tickets / Taxi Vouchers, Door Prizes!!

Please RSVP by Monday, August 13th 2018
by contacting Amélie (text, call or e-mail).

Contact Information:
Amélie Cardinal, FASD Project Coordinator
FASD2@ottawainuitchildrens.com

(613) 296-4209

Finally, a quick shout out to our Russian readers.  It is great to have you join us!