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!

Lanark, Leeds-Grenville FASD News

With its registration with Health Nexus, the new provincial FASD organization, the Rural FASD Support Network formally organized on July 24 as a local FASD support organization.  Tracy Moisin and Diane Greer were elected co-chairs, Shelley More and Diane Greer were elected co-treasurers, and Rob More was elected secretary/communications.  Tanya Eichler was appointed the Caregiver Support Group Committee Chair and ad-hoc member, Stacey Crosbie was appointed Fundraiser Committee Chair and ad-hoc member and our four area FASD Key Workers, Mallory Dopson from Lanark, Megan Delin from Leeds-Grenville, our SDG Worker and Prescott-Russell Worker were extended permanent invitations to all Executive meetings and appointed Community Liaisons.  Gillian Jackson, the Key Worker coordinator from Kids Inclusive was also in attendance.  A member of the executive will also serve as the Network Liaison with the LLG FASD WorkGroup which is the FASD Service Provider organization.  While they are our partners, they are completely separate from the Network.

We have separated the Network into two entities, Support Group and Advocacy Group.  One, we provide a caregiver support group which will be launching on Sept 15 at Calvary Bible Church in Smiths Falls at 10:30am and every third Saturday morning of the month following that.  Its focus is on supporting, connecting and educating caregivers.  Two, the executive committee focuses on advocacy.  Our focus for this year is on building FASD capacity and growing public awareness within the Lanark, Leeds-Grenville, SDG and Prescott-Russell area.  Finally, with our Key Workers, we are connecting with our local service providers and building direction and capacity.
We are inviting everyone to the initial launch on Sept. 15 because we have Tanya Eichler, Psychotherapist, presenting on "How to recognize if someone is living with FASD."  We also have two new members presenting their stories and their challenges and successes as caregivers.  One is speaking from the perspective of a child caregiver and the other is speaking from the perspective of an adult caregiver.  We are anticipating several local service providers in attendance from the Education, Justice, Mental Health, and Developmental Services sectors with media coverage.  We will also be live-streaming the launch from our Facebook page.   https://www.facebook.com/groups/RuralFASDOntario/?ref=bookmarks  If you are in the area or want to watch, please feel free to do so.  We do have several new members that have joined in the last couple months and it would mean a lot to have them walk into a large supportive group on Sept. 15.

While we are not doing something specific for Sept. 9, Kingston and Ottawa are.  https://www.facebook.com/events/307314979835069/  Ottawa and https://drive.google.com/open?id=0B4G_PCr5fBe9ZGQyWjRubS00LXl5dnMzd0JNTVJFd0RxNkZz  Kingston

As mentioned before, the County of Leeds-Grenville has also proclaimed Sept 9 as official FASD Awareness Day.
https://drive.google.com/open?id=0B1sCiqNTFMNyQjRqbXk5dEtJZW4xUmhLWlRhWi0zVFRQRlJv

With this proclamation, the Brockville Times and Recorder which is also part of PostMedia decided to do a feature story on us as well.  https://www.recorder.ca/news/local-news/rural-families-battle-fetal-alcohol-disorder  As with any media coverage, we would encourage you to comment on the story.  We always want to make it obvious to our media partners that their readers are interested in these type of stories.

Finally, Health Nexus is now accepting resumes from both caregivers and service providers to sit on their advisory committee that determines what FASD organizations will receive funding and for what purposes.  I would encourage you to contact Angela if you are interested.
https://drive.google.com/file/d/1urodU4ktLbrpqZKG394ZfIL1lx0cdUc5/view?usp=sharing

At some point, I will be writing about the importance of advocating the Ministry of Correctional Services as well.  The Network is having lots of local conversations right now around this service and getting a very good perspective.

We are continuing to monitor Ministry staffing and this summer session and now anticipating at least another month before sitting down with Ministers and the Premier.

Local FASD Developments

One thing I have learned over the years is everything grows from your foundation.  Priority number one for me is always God, Shelley and me followed very closely by my kids.  Next, if the family is good and strong, then look outward.  Our friends and colleagues come next.  Depending on life and energy levels, we might start working on our community and finally our province.  I say constantly we are blessed tens times over which is why we can serve as a voice for those in our community and province who can't move past providing for their family.  However, this is why we need others, not living or caring for those with FASD, speaking for us.

This past week, in Lanark, Leeds-Grenville, I saw three examples of others speaking for us.  The Leeds-Grenville County Council passed a resolution stating Sept. 9 as official FASD Awareness Day in Leeds-Grenville with unanimous assent.  We also received wonderful advice and additional invitations to present our information throughout the County.  To meet so many individuals in one place who get this and want to help was a real highlight this week.

The second example is the Catholic District School Board of Eastern Ontario has successfully established a multi-disciplinary assessment team.  They have just hired their own occupational therapist, well-versed in sensory needs and FASD to join with an existing educational psychologist, a behavioural psychologist,  and speech-language pathologists.  Previously, they had to use the local LHIN OT's who were not readily available.  This OT's mandate is to build capacity, help with assessment and programming for students with FASD, trauma and complex special needs.  While our school board won't be able to diagnosis, they will be able to support in every possible way.

Finally, I read in our local paper on page 10 an article summarizing our local policing efforts.  They made a brief mention about the fact our local OPP detachment has hired a mental health nurse to join their staff.  This hiring marks the evolution of mental health awareness in this area.  Years ago, our OPP detachment would incarcerate individuals with mental health challenges.  They changed their policy to taking them to the emergency ward but was finding the hospitals weren't equipped to deal with these individuals.  As a result, the local detachment and the local Mental Health organization entered into a partnership.  They just completed a pilot project where they do an immediate intake with a mental health nurse.  They are so pleased with the results, the local detachment has now hired their own person.  This action reflects a belief that we need to be working with individuals who make poor decisions.  We provide guidance and support, not punishment.  This is the belief that we want everyone to have regarding individuals living with FASD.  This action is also going to lead to more individuals living with undiagnosed FASD getting the proper support.

Within your networking, do not forget your local police.  They tend to be our first responders when things get off the rails and our partners in crisis situations.  When you add in our County Council and our School Board, once again, I am utterly amazed at the level of support I keep finding in my local community.  It is great to know as we continue to build capacity and awareness, we do have wonderful partners behind us providing the support.

Open Letter to Premier Ford's Chief of Staff

The following letter was sent to Premier Ford's Chief of Staff Dean French.  Simone Daniels, Andrew Kimber, Brock Vandrick of Premier Ford's staff were copied as were Minister Clark and MPP Hillier's offices.  Please feel free to send your own version of the letter to the emails listed at the bottom.

Dear Mr. French,

I am writing to you on behalf of the Rural FASD Support Network.  We represent the caregivers in the rural Eastern Ontario region who are currently supporting children and adults living with Fetal Alcohol Spectrum Disorder.  We also work closely with the other 23 FASD caregiver support groups across this province.

There is currently over 90,000 children and 300,000 adults in Ontario living with this permanent brain-based disability according to a recent study done by Dr. Popova.  https://canfasd.ca/wp-content/uploads/sites/35/2018/05/2018-Popova-WHO-FASD-Prevalance-Report.pdf  FASD is currently twice as prevalent as Autism and three times as prevalent as Developmentally Disabled.  However, because there are currently only two facilities in Ontario equipped to diagnose this complex disability for adults, over 90% of individuals living with this disability are undiagnosed.  This disability requires a multidisciplinary approach including a neuropsychologist, an occupational therapist, a speech-language pathologist, and a medical practitioner trained in FASD characteristics.  And because diagnosing FASD is not currently covered under OHIP, it is very difficult to track current prevalence.

The previous government did pass two pieces of legislature last year.  The first piece was in response to a comprehensive roundtable report done in 2015 by Granville Anderson and so six initiatives were established.  These initiatives include a FASD Key Worker in each region of the province, funding for starting support groups, a comprehensive provincial website, Indigenous support, establishing an Advisory Council and research funding.  These initiatives were a wonderful start for us and we certainly hope you will continue to support them.  However, the Leeds-Grenville area and the Lanark area only have a part-time Key Worker unlike most of the other regions of the province.  Prescott-Russell area got a full-time worker despite only having half the population and need as our area.

The second piece of legislature was identifying September 9 as FASD Awareness Day.  This motion passed with unanimous assent because MPP Kiwala of the Liberal Party crossed the floor and partnered with key MPP's from the PC and NDP parties.  Minister Clark and MPP Hillier have been wonderful champions for us this past year.

We have identified four key initiatives that we would like to discuss with you further.  We would point out all these initiatives do not require additional assets.  We believe, like you, a strong economy solves lots of problems.  We know when unemployment is high, stress and anxiety will be high.  This is turn creates environments that individuals living with FASD are going to find difficult.  However, we have identified these initiatives as being efficiencies on current programming.

      1)     The Education Act be amended to require school boards to develop a FASD strategy in consultation with local Key Workers and Support Groups.  In our experience, school boards do currently have the proper staff to support students living with FASD but lack the knowledge or experience.  A deliberate approach rather the current haphazard approach is needed across this province. 

2   2 )     The current Special Needs Strategy needs to include a section related to FASD and the establishment of multidisciplinary clinics. 

     3)     All current programming such as Passport Funding, Special Services at Home, Community Programs, Respite services, Developmental Services which accept Autism or Developmental Disabled as meeting their criteria need to include FASD as also meeting criteria.

     4)     Ontario joined the National FASD Network last year and needs to begin consultation with BC and Alberta in particular.  These two provinces have had a comprehensive FASD strategy for over a decade now and have a wonderful model we can copy.

As stated, none of these initiatives require additional assets.  Rather, we believe collaboration and education with our current resources are the key going forward.  When lived experience works in collaboration with service and research expertise, everyone benefits.  We have seen for years now when individuals living with FASD are not supported as is the current case, unemployment costs, medical costs, housing costs, justice costs, and mental health costs will rise.  However, with the above supports, we will see these costs decrease.  Based on an audit we completed last year focused on only Autism supports, Developmental Disability supports and FASD supports, we projected from the current funding model, each child living with Autism is entitled to about $40,000 a year, each child living with a Developmental Disability is entitled to about $60,000 a year, and each child living with FASD is entitled to $12 a year.  We were directly told by the former government last year that their Special Needs funding goes to these two groups and there is none left for other groups.  As Minister MacLeod can tell you, our Acquired Brain Injury partners can share a similar story as us.  We do thank you for combining the children and youth services with the adult services under one portfolio with Minister MacLeod.  That move alone hopefully solves a major issue by eliminating the start-over we go through as our children transition into adulthood.

We thank you for your attention and look forward to the opportunity to discuss how we can support these individuals going forward.

Rob More

Rural FASD Support Network

Dean.French@ontario.ca
Simone.Daniels@ontario.ca
Andrew.Kimber@ontario.ca
Brock.Vandrick@ontario.ca

DTC Update

In the past couple weeks, the Senate released its report on the status of the Disability Tax Credit and Registered Disability Savings Plan and its recommendations on how to make it better.  https://sencanada.ca/content/sen/committee/421/SOCI/Reports/2018-06-18_SS5_RDSP-DTC_FINAL_WEB_e.pdf  This report was received by the Minister of National Revenue Diane Lebouthillier.  I personally received a letter this week stating the Minister had reviewed my daughter's file and reversed the decision made by the Canada Revenue Agency.

The following is the reply I sent to her and the members of the Senate who created the report.

July 10, 2018
Dear Minister Lebouthillier,
I would like to thank you for taking the time to review my daughter Skylar More's appeal for the reconsideration of the decision made regarding her Disability Tax Credit.  As you read, her diagnosis of Fetal Alcohol Spectrum Disorder markedly restricts her ability to set goals, make judgments, problem-solve, use adaptive functioning and working memory 100% of the time.  We fully recognize that she will live an interdependent life with us and others for the rest of her life.  To know that we now have the means to provide for her after we pass away alleviates a great concern for us and we thank you for that.
We did read with great interest the Senate report that was released a couple weeks ago regarding the CRA's handling of DTC applications.  We also appreciated the time and effort the committee took to understand where the issues are and believe the recommendations they made would certainly have a positive impact on this process going forward. 
Your announcement of the establishment of an Advisory Committee going forward is what caught my attention and in part why I am writing to you today.  Health Canada recognizes FASD as a permanent neurological disability which always markedly restricts goal setting, judgment making, problem-solving, adaptive function and working memory 100% of the time and will for the entire lifetime.  It is now the second most prevalent neurological disability amongst our Canadian population behind only dementia/Alzheimer's with over 1 million individuals living with this disability and twice as common as Autism.  I would encourage you to include a FASD neuropsychologist on your advisory committee as it is a very complex disability which requires four different specialists working in collaboration.
I do appreciate you taking the time to review my daughter's application and reversing the determination.  We were not looking forward to having to go to tax court as that would have been a highly stressful situation for my daughter.  We do hope you will reached the same conclusion when you review my son Jacob's application and my daughter Cassie who needs to submit for consideration again next year since her three years will be up. 
One item we would ask going forward is regarding the frequency of reapplication regarding our children.  While we appreciate your decision to give us five years before having to reapply for my daughter, FASD is a permanent lifetime disability with no cure.  We also know that Tax Court has established case history stating the same fact and has ruled that no reapplication is necessary when the diagnosis is FASD.  Canada Health states the same fact and the Ontario Disability Support Program agrees as well.  We would ask going forward that our three children, Skylar, Cassie and Jacob More, all of whom have been diagnosed with FASD would receive a lifetime exemption to reapplication for the Disability Tax Credit.
I look forward to your reply.


Rob More
robmore629@gmail.com

cc:
art.eggleton@sen.parl.gc.ca  
Chantal.Petitclerc@sen.parl.gc.ca 
judith.seidman@sen.parl.gc.ca 
jim.munson@sen.parl.gc.ca 
WandaThomas.Bernard@sen.parl.gc.ca 
fabian.manning@sen.parl.gc.ca
marie-francoise.megie@sen.parl.gc.ca 
Ratna.Omidvar@sen.parl.gc.ca 
rosemay.poirier@sen.parl.gc.ca 
kamal.khera@parl.gc.ca
Pat.Kelly@parl.gc.ca
Pierre-Luc.Dusseault@parl.gc.ca
Xavier.Barsalou-Duval@parl.gc.ca
lisa.raitt.a1@parl.gc.ca
scott.reid.a4@parl.gc.ca
al@impact6.ca

Diane.Lebouthillier@parl.gc.ca
House of CommonsOttawa, OntarioCanadaK1A 0A6If you wish the mail your letter, you don't need postage.

The Role of a Voice

Happy Canada Day, eh!
I had the pleasure of taking a tour of one of my student's new school with his parents this week which reminded me of just how important a role we have as voices.  English is their second language and they are learning about our Canadian school system.  It was my principal who reminded me that this child is one who could easily get lost in the system.  He is a quiet, shy young man with a great heart and a quick smile.  He struggles, though, with understanding who makes a good friend and who doesn't make a good friend.  His new school and I have had several conversations to date but his direct supervisors had only met him once three months ago and had never met his family.  He had his IPRC meeting, he has an IEP, he has a five-step transition plan, he has an EA allotment profile, and it took the face to face meeting interacting with the direct supervisors for 15 minutes before a truly successful plan was created.  I feel so much better now in terms of what next year is going to look like for him.  He will be fine.

It is amazing, though, what the face to face conversation does.  When I think about when our truly effective advocacy happens, the direct conversation is always the best.  You know what I am talking about.  So many of you are fabulous at banging on people's doors and refusing to go away.  It is absolutely a skill being able to walk into intimidating places and meet with strangers.  Articulating a need in a way people can understand is a challenge onto itself as well.  It is why we surround ourselves with quality people who can support us in these different environments.  My eldest daughter graduated from high school a couple nights ago to great fanfare.  While we have no idea what September is going to look like for her yet, there was one key point from last night we are holding tight.  She won the award for the most volunteer hours with 184 hours.  That award represents her ability to put others first, being willing to serve, her courage to speak and work with different people in different environments, her belief that she has something valuable to contribute, and her strong sense of community.  She has most certainly found her voice.

What happens, though, if someone doesn't have a voice.  One of my passions is to tell the stories of our WWI veterans.  Lance Corporal Cecil Smith is a great example of what happens when someone doesn't have a voice.  Lance Corporal Smith was a 17-year-old man who sailed to Halifax from England after all his relatives passed away.  He later died in WWI and all his papers and medals went into Archives.  However, a Beckwith Township farmer, who Cecil helped for three months, convinced his local municipality to add Cecil’s name to their cenotaph.  Through that farmer’s voice, a hundred years later, Cecil’s sacrifice has not been forgotten.

It can be frustrating trying to be that voice, though.  We remind others constantly, review frequently, teach repeatedly, and occasionally find success.  I personally am excited about yesterday’s cabinet announcement and particularly one thing.  Doug Ford has created a new ministry called Ministry of Children, Community and Social Services and appointed Lisa MacLeod as Minister.  I am excited because what he has done is combined children and adults together under this portfolio.  We are no longer dealing with one ministry for children and another ministry for adults.  For us, this hopefully will eliminate that huge transition we experience when our children living with FASD become adults.  And Lisa MacLeod, champion of Rowan’s Law and the Acquired Brain Injury group is in charge.  I believe we will find a receptive audience in Minister MacLeod.  For me, that is a success.  While it would be nice to have things move faster, ask yourself this.  Are we in better shape today than on June 30, 2017? Or June 30, 2013?  While we haven’t hit the homerun yet, single after single will get us there as well.  Remember, the only way we lose is if we quit.  As long as children living with FASD need a voice, we will not quit.

Sleep and FASD

One of the big issues that gets discussed a lot on the FASD Facebook forums is sleep and the lack of it.  If you are one of the lucky people with a child living with FASD who sleeps well, count your blessings.  Our middle daughter always falls asleep within five minutes of the head hitting the pillow, can sleep through anything and always wakes up ready to go.  She is also the one who has very few self-regulation and mental health challenges.
However, our youngest has really large sleep issues.  It is always 60-90 minutes to transition into bed, and 60-90 minutes to get going in morning.  We have been doing all the regular things to encourage sleep and have been meeting with medical professionals.  We received some information that was new to us and thought it might be helpful for you.
We know routine is important but it needs to be a routine that works for everyone.  If we have to make a choice between routine and escalation or being willing to adapt, we adapt.  We used to try a 8pm then 9pm bedtime but we were finding my son would just play and toss and turn until 10pm at the earliest and lots of time 11pm.  We made the decision we would rather have him be physically active until 9pm and make himself more tired.  We make sure there are no electronics including TV the hour before he goes to bed.  We do the Melatonin every night and give him Vitamin D in the morning.  His room and bed is a cave with blankets and curtains blocking out light, window open to cool the room, a blue LED light instead of a regular nightlight, and one of the better investments was the $35 white noise machine from Amazon.  It has been one of the few things that has made a difference.  We did stop Melatonin because our pediatrician said melatonin does have the opposite effect on 2% of people and will keep them awake. 
We always follow the routine of get our snack, gather up our stuff and go to our room, make our bed, do our bathroom routine, get into bed, cuddle with Mom and give a hug to Dad.  We did use Mom's Fitbit for a few nights to get a sense of the type of sleep he is getting.  We saw from the Fitbit he was likely not getting any REM sleep because he was moving every 20 minutes or so.
So we got a referral from his pediatrician to a fellow pediatrician with an interest in sleep.  It was very nice in that she was aware of how FASD can impact sleep and commented on the fact we are doing everything she would want parents to be doing.  She also mentioned she agreed adapting instead of escalating is an excellent choice in her opinion.  Finally, she also went on to say she really doesn't like using medication which is fabulous as the thought of adding another medication to the current cocktail is a little intimidating.
She shared with us that no one sleeps for much more than 90 minutes before stirring due to our survival instinct.  She was also intrigued with the Fitbit data but she won't use the data because Fitbit won't share the algorithm they use to determine sleep patterns.  Sleep specialists don't know if the Fitbit algorithm is based on research or not which is why they have a similar device called an actigraphy which is also worn at home.  She thought our son may have restless leg syndrome so she made the following recommendations.  She said consider a weighted blanket because of his sensory needs, and take additional iron without consuming dairy or citrus before going to bed.  She said if you have an elevated iron level, that can help increase sleep.  Finally, if these things don't work, then we would look at a medication called gabapentin.  She also said it could be sleep apnea but there is no treatment for sleep apnea other than the head gear which our son would never use due to his sensory needs.
While we don't have any great solutions yet, it is encouraging to know once again we are working with a team that gets it.  Sleep is such an important part of our health and yet there are so few doctors, treatments and research articles.  It has been connected with mental health, anxiety, intelligence, heart conditions and other aspects of our lives.  And frankly, as a caregiver for children impacted with FASD, sleep is vital for all aspects of our entire family.

On another note, at the last SEAC meeting for the Catholic District School Board of Eastern Ontario, Superintendent Dr. Hawes announced they elected to use the additional Ministry money to hire an Occupational Therapist to focus on sensory needs, a lead Psychologist, a Behavioural Psychologist, and a Speech-Language Pathologist to create a multidisciplinary team to support all students.  It is so inspiring to me that this school board took action to support its students in such an unique way.  Once again, I am so proud of our school board in making this happen.

The Importance of Words and FASD

It has been a while again between work and life but I recently had an interesting conversation dealing with the new FASD website coming out later.  We were having a discussion about the difference between disorder versus disability versus syndrome versus injury.  It was being discussed because of the different labels that have been given over the years related to FASD.
Over the years, it has been called Fetal Alcohol Syndrome (FAS), Alcohol-Related Neurodevelopmental Disorder (ARND), Neurodevelopmental Disorder - PreNatal Alcohol Exposure ND-PAE or sometimes (PAE), Partial Fetal Alcohol Syndrome (pFAS) and Alcohol-Related Birth Disorder or Defects (ARBD)
Today, we use Fetal Alcohol Spectrum Disorder (FASD) because we recognize this term really captures the impact of this disability.  We know now this disability is a permanent, brain-based, whole-body disability that doesn't have a cure at this time.  We also know with the proper supports, it can be managed.
When you think about the term Fetal Alcohol Spectrum Disorder, each word is so key.  Fetal means it is developed during pregnancy and only pregnancy.  Alcohol means it comes from all types of alcohol and only alcohol.  Drug usage during pregnancy does not cause FASD.  It also doesn't matter whether is is beer, wine, spirits, liquor, hard lemonade or anything else.  Spectrum is huge because it means each person living with FASD is totally unique to themselves and normally refers to cognitive levels.  They may be anywhere on the intelligence or cognitive scale from gifted to developmentally disabled and can have a wide assortment of other medical conditions.  Finally, disorder.  In its purest form, it means the absence or opposite of order.  It has a universal, permanent meaning to it.  Disability is the absence or opposite of ability.  This is a smaller term.  An ability is one function or skill.  A syndrome is a large collection of temporary effects and an injury is a temporary effect on a particular part.
In the Post Traumatic Stress Disorder world, the military now uses the term Operational Stress Injury.  Stephane Grenier makes a great argument in his writings in that PTSD is not an universal unspecified lack of order which has very negative stigma in the military world.  In the military, you never want to have a lack of order and it is not an unspecified thing.  It is temporary, not permanent which is why they now use Operational Stress Injury.  It comes from a military operation, it creates stress and it is temporary and healable which is why disorder is not the right term in that situation.
Autism Spectrum Disorder went through the same thing.  It used to have intelligence levels associated with it where it would be called Asperger's Syndrome, Autism (mild, moderate, and severe type) and PDD-NOS where the NOS means Not Otherwise Specified in the DSM-V.  Autism achieved their goal of getting everyone to understand intelligence levels have nothing to do with this.
I love it when people don't know what FASD stands for because it gives me the opportunity to share with them the significance of each term.  I just had a conversation this week with a lady who thought FASD was a condition that the birth mother can develop.  Once she understood FASD is developed in the child, not the mother, she was curious as to how it will manifest itself in the child.  At the end, she was speculating about a child she knows and whether he has FASD.  This is why it is so important we are speaking as one unified voice with one unified term.  Once Autism got all their terms classified as ASD, they took a huge step forward in their advocacy.  It shouldn't matter if we have suspected FASD, at-risk for FASD, ARND, ARBD, ND-PAE, pFAS, FAS, or FASD.  We are all under the FASD umbrella and together, we can make a difference whether it is one person at a time or one country at a time.

On the subject of the importance of words, Kids Brain Health Network and Katelyn Verstraten wrote a great article on the significance of Dr. Popova's study on FASD prevalence.  Please feel free to check it out.  http://kidsbrainhealth.ca/index.php/2018/05/28/beyond-the-numbers-why-canadian-neurodisability-prevalence-rates-matter/

Input Needed from the FASD World

It has been a while but there are several things where our input is needed.

1) Jo-Anne Robertson, Project Manager for the provincial FASD website is asking for teenagers and young adults living with FASD to contact her regarding what they would like to see on the website.

2) She is also asking for Francophones and Indigenous individuals to give input as well.

Jo-Anne is seeking Indigenous and Francophone individuals to either join the advisory or consult on website. Advisory members are asked to refer Indigenous/Francophone individuals who might be interested to contact Jo-Anne j.robertson@healthnexus.ca

Jo-Anne is planning to hold small focus group / interviews with teens living with FASD. If you know any teens or young adutls (<25 years who might want to give input into the website, please contact Jo-Anne j.robertson@healthnexus.ca

Please feel free to contact Jo-Anne directly if you would like to give input.

3) Margaret Van Beers is asking service providers and families from the Lanark Leeds-Grenville area to complete the following surveys.
As part of the rollout of the new FASD Worker position, we're distributing two surveys:

For Families - https://www.surveymonkey.com/r/RSK5GX5

For Service Providers - https://www.surveymonkey.com/r/RW3JY2G


As I mentioned at our last meeting we are distributing it widely and invite you to share with others as you see fit. The information gathered will be submitted to MCYS, and will also help us to plan for the new FASD position in LLG. We will leave the surveys open until June 10, 2018.

4) Citizen Advocacy announced November 2, 3 as the date for their 2nd annual FASD Symposium in Ottawa with more details to come.

5) The Rural FASD Support Network has announced Sat. June 16 at 10:30am at Calvary Bible Church in Smiths Falls as its launch date.  More details still coming on it as well.

6) I also heard from Marian Mlakar of MCYS regarding status on four of the six initiatives.
The organization that is funding and coordinating parent support groups is still being determined.
Key Workers were assigned to the 21 provincial coordinating agencies who also determine the local special needs strategy.  They are currently doing needs analysis and they will determine high needs areas in the fall.
Health Nexus and Jo-Anne Robertson is creating the FASD website for the province with input from caregivers, experts, youth, and service providers.
Finally, MCYS is going to create their advisory committee later this year consisting of youth and caregivers.

7) Yes, Bill 191 and later Bill 44 to amend the Education Act regarding FASD has died with the writ drop.  We will be starting all over again in the fall.

8) Finally, got a reminder today of the constant battle we fight.  We applied for the Special Services at Home money for all three kids through the Ministry of Community and Social Services.  Apparently, FASD does not meet their 2018 guidelines for a physical or developmental disability.  However, autism, acquired brain injury, an intellectual disability, or cerebral palsy do meet their guidelines of a disability.  How many more fights do we have to do with the province???!!!  So I guess I get to do another appeal.  Otherwise, we get to pay for any respite or developmental programming we do with the children.

We also got told we are not eligible for the Assistance for Children with Severe Disabilities because our gross family income is slightly too high.  However, we were required to apply separately for each child and they don't take into account at all we have more than one disabled child.  Our income is too high for one disabled child and their rules don't allow them to consider any other disabled children in the family.

Voices needed for Ontario FASD Website

It has just been announced that Best Start Resource Centre by Health Nexus http://en.beststart.org/ has received the provincial contract to develop the one stop FASD website for caregivers in the province of Ontario.  They are asking for parents/caregivers for all parts and locales of the province to serve on their advisory committee in developing this website.  https://drive.google.com/open?id=0B4G_PCr5fBe9eDBJTEh6UHoxZXk5eTZYb29mTGk3OGFfZHdj

If you are not in a position to serve on this committee but would like to contribute information, please feel free to comment to me on this blog.  They want to develop a website that will be useful to us so please feel free to pass along anything you would like to see included within this website.

It has also been announced that the Kingston FASD Key Worker has been hired by Kids Inclusive at this point.  Interviewing continues for the Ottawa area and the Lanark Leeds-Grenville area.

The Power of a Caregiver

Last week, 45 FASD reps from across the province came together with one voice and met with over 30 MPP’s. When you consider that FASD has never had an advocacy day at Queen’s Park before and there has never been event where FASD reps from all parts of the province were physically together before, this could be considered a historical event. When you add in the factor that Kids Brain Health Network timed Dr. Popova’s report release with this event and created a lot of media attention, this could certainly be considered a rousing success.

The assumption going into this event was the focus needed to be on education. There were only seven MPP’s who spoke toward the FASD motion last December so we assumed the 25 MPP’s who joined us were starting to learn about FASD. It was very clear MPP Anderson of Durham, MPP Kiwala of Kingston, MPP Clark of Leeds-Grenville and Minister McMahon of Halton are very well informed. It was also clear we have currently managed not to be a partisan issue. MPP’s from all three parties came to learn about FASD and have consistently voted in favour of our motions. In the history of Ontario, only four pieces of FASD legislature have been passed.

- Sandy’s Law, back in 2004,
- the MCYS initiatives, last year
- Sept 9 as FASD Awareness Day, last year
- Bill 191 and now Bill 44, this year

What they all have in common is they were the results of caregivers speaking up. Caregivers, who are trying to support their children today, have the most powerful and loudest voice of all. While the majority of FASD reps present April 11 would be considered service providers or researchers, they are limited in their advocacy because of political considerations. As a caregiver, I’ll talk to anyone at Queen’s Park willing to listen.

I was at a writer’s workshop recently and was reminded of five important facts about writing by Managing Editor of Faith Today, Karen Stiller. I share this with you because writing and advocacy go hand in hand.

1) It is hard and discouraging.
2) You must have a passion in your belly to keep going.
3) Tell the truth. Don’t dance around it, don’t be ashamed, own it and be genuine.
4) Build a supporting community around you and hold onto them at all cost.
5) Be a risk-taker. Ask yourself why am I afraid?

It is these five facts that make you the ideal advocate. When you persevere, when it is not a job but a life, when you are genuine and not coming with an agenda, when we come together as one voice, and we show courage, people respond to that. What do we have to lose? We have nothing now and nowhere to go but up. We have heard so many times from so many people “No!” that personally it doesn’t even affect me anymore? My three children, who really struggle speaking to people they don’t know, sat in a room with 75 strangers for two hours, controlled their anxiety and then found it within themselves to share their stories with MPP Taylor afterwards. They then sat quietly in the gallery as they watched Bill 44 pass first reading. If they can do it, I most certainly can do it.

I know what my next four objectives are.

First, I am taking on the CRA, Minister Morneau and this Disability Tax Credit mess. How all three of my children don’t meet their definition of disabled is insane. I have now taken it to the appeal level and preparing for tax court. If you are not aware, the CRA is currently rejecting 70% of applicants who have been identified as disabled by Disability Support Programs. I reached out to Lisa Raitt, Deputy Leader of the Opposition who responded positively and now starting the conversation with her about this.
Second, I will be the first one up asking a question at my local All Candidates debate in May because
local media always publishes the first two questions. My question will be along the lines of “Our current government for the first time ever budgeted money for the 90,000 children impacted by Fetal Alcohol Spectrum Disorder this year which is the most prevalent neurodisability in Ontario and twice as prevalent as autism. If you formed the next government, what would you do to ensure individuals
impacted by FASD are properly supported?”
Third, I will continue to network locally, spread the word and ensure our local Key Worker has what they need to successfully support our community.
Lastly, as Doug Ford is making his way around the province, we keep talking to Simone about FASD.
Simone is part of his campaign team as the main policy advisor. She is in her late 20’s, long black hair, and will be hanging around in the back with 3-4 other young men. She has been told about FASD four times in the last three days. If you are going to a Doug Ford event is in your area, have a conversation with Simone.

I reach out to you again, my fellow caregivers. I heard it repeated on Wednesday that autism advocacy started 15 years ago with a few caregivers having rallies on the front lawn of Queen’s Park. We as caregivers need to lead the charge. MPP’s will work with us if we keep reaching out to them. Service providers respond to us when we provide the clients for them. Researchers reach out to us when they know we will volunteer. Media like us because we create political news and the heart-warming stories of courage, grit and honesty. Don’t forget, you have the greatest degree of all, “Caregiver with lived experience!” What else needs to be said?

Evolution of the FASD Awareness Day in Ontario

You may have heard already about the very exciting day at Queen's Park in Ontario this past Wednesday.  I had the pleasure of being involved in some of the activities and spoke with others about their experiences.

The Kingston Parent Action Group through MPP Sophie Kiwala held a FASD Awareness Day at Queen's Park where over 35 MPP's and staff met with 45 FASD reps from around the province.  As well, private meetings were done with six MPP's including Education Minister Naidoo-Harris.  Queen's Park and MPP Kiwala used this day to reintroduce the former Bill 191 as Bill 44 now where it unanimously passed first reading again.  Kids Brain Health Network and CanFASD also used this opportunity to raise the FASD profile.  KBHN and Dr. Popova released her earth-shattering study on FASD prevalence in Canada where we learned FASD prevalence is almost 3% and twice as much as autism.  Because of this news release, CTV, the National Post and Post Media, the Agenda with Steve Paikin and Amber Mac all added to the news cycle of the day.  I have included those links below.

https://www.ctvnews.ca/mobile/health/fetal-alcohol-disorder-more-prevalent-than-previously-thought-study-1.3879947

http://nationalpost.com/news/canada/more-than-a-million-canadians-could-have-fetal-alcohol-syndrome-disorder-study

https://www.facebook.com/ambermac/videos/845018349031665/

https://tvo.org/video/programs/the-agenda-with-steve-paikin/tracking-fetal-alcohol-spectrum-disorder

I would also encourage you to comment and like all three posts.  We want the media to continue publishing FASD stories.

The Kingston Parent Action Group deliberately set out to get representation from all regions and sectors throughout the province of Ontario to unify the FASD movement in one coordinated effort and make the strongest possible statement to Queen's Park that this is a provincial and national issue.  We accomplished that goal.  With this experience, we challenge each region now to have their own Advocacy Day at Queen's Park.
It is not difficult to do.  Our coordinator, Len Whalen, contacted MPP Kiwala and asked her staff to reserve a room for us during lunchtime.  Once the reservation was done, we then seeked sponsorship to cover the cost of the lunch.  If an organization of 10-12 people did this, expect the cost to be around $800-1000 with an attendance of 30 people.  In our case, Dr. James Reynolds of Kids Brain Health Network and Steve and Karen Catney of Alliance Youth Services did the sponsorship.
We then from our group picked a coordinator, invitation person, registration person, display person and photographer.  Realistically, if you have a group of 10-12 people coming, two people could do all of this.
The coordinator should communicate to the group the details of the day, get the security passes, booked the caterer and the room and determine the agenda of the day.  The invitation person would create the invitation, send it to the MPP constituency offices, log the responses, and coordinate the private meetings.  Potentially, this person could also pass out the name tags on the day and setup the display table.  In our particular case, the invitation was sent 8 weeks before the day and a reminder with new information was sent every Monday morning for all 8 weeks.  Staff members do come and go through the morning, the hosting MPP does the introductory speech at noon followed by an organizational rep for a total of 20 minutes.  The room was cleared by 1:30pm.
It was suggested that we have a banner with our logo on display, informational pamphlets, a clear mission statement, and a pin or ribbon that could be worn.  For our private meetings with MPP's, we gave them a one page briefing note ahead of time as we had 30 minutes to share with the MPP followed by their questions.  Each team had a lead who directed the dialogue with the MPP.

I have attached an example of a briefing note and the spreadsheet used to track the bookings.

https://docs.google.com/document/d/1yTnYyWzLZT06pF8T5r6cojfQk4TffbFBgwqgAAsLPrg/edit?usp=sharing
https://docs.google.com/spreadsheets/d/1ACQyMfcqygDUYPxw42PFCZJ_FLGNgBiSN7uOZg_GdG8/edit?usp=sharing


In later blogs, I will share information from the day, but there was one key piece.  One MPP told us how Autism Advocacy began in Ontario 15 years ago.  It started with a multiple rallies on the front lawn of Queen's Park.  With each rally, news coverage increased and political engagement increased.  This was followed by a letter writing campaign that is still happening today and frequent advocacy days. In my opinion, we need to be looking at having a rally on the front lawn in September when Queen's Park is back in session.  The Kingston PAG is planning its next advocacy day for the fall.  From what I saw, there is no reason why Ottawa, Halton, Waterloo, GTA, and the North aren't organizing their own advocacy day for the next year.  If you would like to know who the 45 participants were as they have now seen exactly how it is done, please feel free to comment to this blog and I will share the list with you.

MPP Kiwala commented that of all the Advocacy Groups she has hosted, we were by far the most organized she had ever seen.  We have made a great first impression, let's keep the momentum going.

Creating success in the small things

I was watching a basketball game the other day and the announcer was talking about another announcer.  A team had just won on an incredible last second shot and the announcer was yelling and screaming and immediately went to his phone to check the news cycle.  The second announcer was saying we have become so conditioned to scrolling the news cycle now that we have lost perspective of what is truly important.
I found this statement to be so true.  My family have just spent the last four days isolating ourselves on the farm and pretty much ignoring the world.  It was so nice!  It occurred to me for our kids and us, this is one of our big secrets to success.
Social media and the drama that comes with it is really the biggest enemy our children are currently trying to overcome.  We have seen over and over again when our children is supported by people who understand their needs, they succeed.  It is also why we guard our home so diligently from outside sources because if it isn't the safe retreat we need, we know firsthand just how bad life can get.  This week, my oldest daughter had the opportunity to create a Facebook page and chose otherwise.  For us, this might be the greatest accomplishment she has done yet and a direct testimony to the work her support network has done.  Our middle daughter showcased her butterscotch pie this week at 4H Achievement day.  She made the crust from scratch, the pie from scratch, and the flambed whipped cream from scratch.  Our son watch a Transformers movie marathon in bed for two days, slept to noon the next two days and finally got back to his old self.  It has been a long time since he slept more than six hours.  It is absolutely amazing to me how that cool spring and fall air is so important to him.  Our entire four day weekend consisted of singing in church with friends, eating my daughter's pie, having lunch with the Mom's, dreaming about what we are doing this summer, and walking our 3 km trail with the dog every single day.  No fighting, no yelling, everyone being really lazy and just enjoying each other's company.
Shelley is always reminding me not to get too busy.  My propensity for work can get crazy sometimes where 16 hour days can become the norm and I keep moving to the next project.  However, I have seen what happens when I try to put those same expectations on my children.  Things break down.  But when I remember just how many 18 and 16 year old's are work ready, I realize they really do have bright future.  My oldest is discovering that she is quite the sales person at her co-op.  While she is constantly getting rejected by us as to which horse equipment we are buying because she is always picking the most expensive one, she is great at up-selling customers because she makes great arguments, mainly because she has a lot of practice.  Good thing Shelley and I are good at saying no.  For an 18 year old to have that skill, that is impressive.  And Cassie, the 16 year old, loves washing dishes and cleaning the kitchen as much as she loves serving customers and making meals at the bakery and home.  Yes, I know, all you teenage parents are jealous right now.
I have said it before and I will say it again, if you and your child are still pushing forward, you have achieved success.  These small victories, when put together, always represent something bigger than just themselves.

Two small notes:  Our little group out here in Eastern Ontario has just created our own website and Facebook page.  Please check us out at Rural FASD Support Network .

If you didn't see in the Ontario budget, monies was devoted to FASD diagnostics.  That is a huge one for us.  However, Bill 191 was eliminated in the prorogation and hasn't reappeared.  Not sure at this point if it is permanently gone yet.

Mental Health and trauma

I recently had the opportunity to hear Dr. Adam Montgomery speak about his research with our veterans who served in Afghanistan and Operational Stress Injury which is sometimes described as Post Traumatic Stress Disorder by civilians.  One point he brought out is sometimes it is the witness to trauma who suffers more than the recipient.  The main reason is because of that sense of helplessness that comes with it and the feeling that they should have done something about it.  I realized from that conversation that is why caregivers of individuals impacted by FASD will struggle with mental health sometimes.  When our child is having an intense emotional outburst and we can't figure out how to help them, we can get that sense of helplessness.  We will think we should have done something differently and take responsibility.  Again, this is why a counselor or psycho therapist for the entire family is so important to help us find strategies on how to manage that trauma.

While we recognize all of our stories are different and unique to our situation, Shelley would like to share her story with you and how she is coming back from a debilitating stress injury.  She was asked to share her story recently at an Employer Symposium with the purpose of showing how an employer can have a key role in supporting individuals with mental health challenges.

https://youtu.be/y5yZa01T6U4


To me, this is why we stress every caregiver needs support as well.  It can be challenging to maintain hope for both the individual impacted by FASD as well as their caregiver.  This is why the need for school boards and caregivers to be in collaboration as to how to support our children impacted by FASD is vital for all parties involved.  When solutions can be found and success is maintained by all, individuals, caregivers and teachers are renewed to continue progressing forward.

You may have seen this petition already supporting Bill 191 but if you haven't, please consider signing and passing it onto all your friends and family.  https://www.thepetitionsite.com/287/637/880/support-bill-191-am-end-the-education-act-to-include-fetal-alchol-spectrum-disorder/?taf_id=51852813&cid=fb_na#bbfb=243730049

Bill 191 continues to wait for House Leader Yasir Navqi to schedule its second reading.  It should be noted that 3rd party House Leader Gilles Bisson has asked for an audience with a FASD delegation so progress continues to slowly be made.