Wednesday, 26 July 2017

The Current Challenge of diagnosing in Ontario

You may have seen the letter the Lanark Leeds-Grenville FASD WorkGroup received from the Honourable Sophie Kiwala, MPP which we posted in the blog a couple weeks ago.  There were two new pieces of information in the letter that Elspeth Ross pointed out which were exciting news and things I wanted to comment on.  The first item was confirmation that MPP Kiwala is the person tasked with developing our provincial strategy which most of us already knew.  However, she is also the person who is spearheading the conversations with the other Ministries and confirmed she has already started conversations with the Ministry of Health.
This is fantastic news as it is a weak link in our world of living with FASD.  In a recent conversation with Dr. Barry Stanley, he explained to me why getting a diagnosis for FASD is so problematic in the province of Ontario.  It starts with the fact that FASD is so complex you need a multi-disciplinary team to do the diagnosis.  Normally, that team will consist of a minimum general practitioner or pediatrician depending on the individual’s age, ideally a neuropsychologist, a speech-language pathologist and an occupational therapist.  If the GP or pediatrician is not familiar with the physical characteristics of FASD, they may make a referral to a specialist.  Dr. Stanley also pointed out that FASD doesn’t currently have a billing code under OHIP and that he used to have to call it psychotherapy when he did the diagnosis which was acceptable to OHIP.  He is a great advocate for this particular issue and has had numerous conversations with the Ontario Medical Association about getting this to change.  Interestingly, Granville Anderson referred to this very point in his roundtable report and one that MPP Kiwala is aware of.  Our MPP’s, Randy Hillier and Steve Clark, were also shocked to learn how difficult it is to get a diagnosis.
The second big challenge we face in getting a FASD diagnosis is the lack of facilities in Ontario.  Per FASD One and confirmed by the Centre of Addiction and Mental Health and Granville Anderson’s Roundtable report, there are currently 12 clinics in the province who can diagnose FASD using a multi-disciplinary team.
Dr. Stanley also pointed out that in his expert opinion that you want to get the team and not an individual to do the diagnosis.  Unless that individual is well-versed in FASD, they can certainly make things worse as we have certainly discovered.  However, all 12 clinics have certain restrictions.  Durham has a clinic for U-18 Durham children, Guelph has a U-18 clinic for Guelph children, London is currently on hold, Kenora accepts U-18 Kenora children, Peel Region has a U-6 clinic for Peel region children, Sudbury clinic is for U-18 Sudbury children, Thunder Bay is for U-18 Thunder Bay children, Anishnawbe in Toronto is for First Nations people, Mothercraft in Toronto is for their clients with U-6 children, St. Michael’s, Toronto is for GTA people only but do diagnose adults and children, Surrey Place, Toronto diagnose children and adults from Toronto only and Waterloo has a U-18 clinic for Waterloo people.  The two remaining clinics is Halton and Ottawa.  Halton has a private practice just established by Dr. Scott and accepts U-18 clients from anywhere in the country.  Ottawa has the Children’s Hospital of Eastern Ontario which does things very differently.  They do accept clients, both children and adults, and anywhere in the country but require a referral.  However, they provide a diagnosis using one individual from their genetics department and no further support.  They also have a wait list of about two years.  We received our diagnosis from them because we had managed to get a S-L pathologist report, an occupational therapist report and a psychologist report through the children’s school due to their academic challenges.  Our pediatrician was able to use those reports and make the referral to CHEO.  He continues to follow them and we are also using a private counselor who specializes in FASD.  We also know that the KidsInclusive out of Kingston can provide some assistance for us as well. 
However, until we found this pediatrician, it was not good.  He was the first to realize there was something bigger going on with our children than just impulsivity and attention difficulty.  However, we also learned this year that the Champlain LHIN who services our Ottawa area for occupational therapy is no longer accepting new clients due to budget cuts.  So, in Eastern Ontario, literally, the only way to get a multi-disciplinary team diagnosis for FASD is to hire private practice people.  You will also notice that an adult who lives outside of Toronto or a child outside one of the 12 catchments can not currently get a diagnosis or support for FASD from a publicly funded multi-disciplinary team.
      To hear MPP Kiwala say her current priority is to collaborate with the Ministry of Health in determining FASD diagnosing capacity and figure out what needs to be improved is a very welcomed piece of information.  If you wish to pass along your appreciation for her work, I would encourage you to contact her office at or 613-547-2385.

Follow-up - Ontario does not currently have any method of tracking the prevalence of FASD. The approximately 2,500 Ontarians with FASD referred to in the 2017 Budget is a gross underestimation.  Until Ontario establishes a consistent method of tracking FASD such as a OHIP Billing Code, we will never know just how much capacity and support is needed in this province.

Tuesday, 4 July 2017

Strongest Families creating FASD resource

As caregivers working with individuals impacted by FASD, one of the hardest things is to consistently create a calm and safe environment for those individuals.  And when things get off the rails, it is so easy to get caught up in the drama and emotion of the situation.  Yet, we can't.   We have to remain the touchstone to which our child can return.  So, how do we accomplish that?  Strongest Families have asked the same question and is creating a viable solution.
Our strongest weapons are education and training.  Just like any situation that is new to us, once we gain experience and solutions, we develop confidence and calmness that enable us to become much more proficient at dealing with that situation.  The first time our son hit another boy, we didn't know what to do.  However, with talking with others, researching solutions, and using other tools,  we are able to deal better with this lessening issue, and are getting insight into the triggers behind it.
Strongest Families is using the same approach.  They have focused on neurodevelopment disabilities and have developed a very good behaviour modification program for those children impacted by FASD.  After going through their program, the first thing that struck me was they are using all the well-researched, well-tested standard behaviour modification concepts within their program.  As an experienced special needs teacher, I have been using these concepts for years and can attest to how effective they are when used properly.  Positive reinforcement, repeating instructions, consistent application of those expectations, having fun together, remaining calm and collected, predetermine strategies for upcoming events and plan your responses are all great strategies particularly for those who struggle with understanding consequences and managing anxiety.  Strongest Families uses these modification concepts and others to create an eleven step process.  They focus on the concepts that will have the most immediate impact first and then repeat them as you go through the other concepts.  The best part, though, is the coach.  While the program is offered online and can be done independently, they also offer a trained coach for some people to walk you through the program.  If you are currently in a struggling situation with someone impacted by FASD or any other neuron-development disability, it can be very difficult to learn a new program by yourself, and Strongest Families recognizes that as well.
This program is currently in the testing stage, and they are just wrapping up the first study.  They invited caregivers impacted by FASD to participate first and have just completed their research on the effectiveness of the program.  The initial anecdotal response they are receiving from the participants has been extremely positive and hopefully serves as an indicator for what the statistical analysis is going to show.  When you consider that they are using established methods in this program, it is easy to envision that it is going to be a wonderful resource once it becomes available hopefully next year. 
            Knowing the current participants are giving it such positive feedback is not surprising.  As stated earlier, when a caregiver has solutions and a plan, it changes our outlook.  We are no longer stressed, frustrated, and concerned.  Faith and hope are powerful tools in our arsenal.  As any psychologist will tell you, to succeed, we must first believe.  This program will work and with that coach beside you, it is only a matter of time before you see the positive impact.

            The best news, though, is Strongest Families is now creating a similar program for individuals impacted by a neurodevelopment disability.  They have just concluded the initial research with an advisory committee and will be recruiting caregivers to give them feedback on this new program.    For more information on how to get involved, please contact Karen Turner at and ask to be signed up for the Strongest Families monthly newsletter.  You will not be disappointed.

Friday, 30 June 2017

LLG FASD Work Group partners with Citizen Advocacy FARP

The LLG FASD Work Group has invited the Citizen Advocacy FARP to join them in creating the implementation proposal to be submitted to Queen's Park and Citizen Advocacy has accepted.  Based on MPP Hillier and Clark advice, we are looking at a service provider for Lanark, Leeds and Grenville who can receive provincial monies and has an existing FASD program.  With Citizen Advocacy's experience and expertise, they will make a wonderful partner in helping write the proposal for our rural area.

The main areas of focus is having a Key Worker to serve as a system navigator for individuals and caregivers impacted by FASD, a parent support group, marketing, and training.

While we are currently trying to determine when Queen's Park needs this proposal, we believe August 24 is the deadline and working accordingly.

MPP Hillier advocating for Lanark Leeds Grenville at Queen's Park

The following letter was sent by MPP Hillier to MPP Kiwala as result of the LLG FASD Work Group meeting with MPP Clark and Hillier.  We are keeping the irons to the fire and hopefully we will get the money to the individuals who are being directly impacted by FASD.

MPP Hillier letter

Sunday, 18 June 2017

FASD Interview on Lake 88

Lake 88 recently had the Lanark Leeds Grenville FASD Work Group come in studio and talk about what FASD is and what we are trying to do locally.  As a result, the LLG Foster Parent Association and Connections have representatives joining us now.

To hear the interview, go to Lake 88 interview

Saturday, 17 June 2017

FASD Implementation proposal for LLG to Sophie Kiwala, MPP, Steve Clark, MPP, Randy Hillier, MPP

Lanark, Leeds and Grenville

                                                                                                                                            June 5, 2017

Dear Mr. Clark, MPP and Mr. Hillier, MPP,
               Thank you very much for taking the time in your busy schedules to meet and speak with us on Friday, June 2.  We were greatly encouraged by the types of questions you asked as it is apparent both of you appreciate the impact FASD is having on your ridings.
To recap what we discussed, Mrs. Greer shared with you that we fully agree with the key findings of MPP Granville Anderson’s report.  Education to eliminate the stigma around FASD, lifetime tailor-made services, increased early screening, a joint strategy focusing on health, justice, education, and social services and finally a Key Worker program devoted to FASD are all needed in Lanark, Leeds and Grenville.  Ms. Bertrand, our chair, shared with you what she is seeing from the perspective of a service provider.  As a Manager of Leeds and Grenville Developmental Services Crisis Centre, she has consistently seen clients impacted by FASD turned away because while they do meet the adaptive skill pillar, they are consistently above the 2% intelligence pillar.  Thus, they get sent to assorted agencies depending on their current need, and they are left to try and navigate the system themselves.  Finally, Mrs. More, parent of three children impacted by FASD, shared with you the challenges her family have dealt with over the past ten years.  Her story of how she went through a psychologist, a psychiatrist, a pediatrician, a general practioner and finally the genetics department out of CHEO while her daughter was in crisis for 16 months before getting the diagnosis is a typical story.  Her other two children are still waiting for the diagnosis simply because they are not currently in crisis.  Mrs. Greer sharing how it was due to her son being incarcerated before getting the diagnosis is another example of how difficult it is to get a diagnosis.
We recognize the budgeted 26 million dollars for the province will get used up quickly.  For Lanark, Leeds and Grenville, we are requesting funding in the following areas: 
·        One full time FASD Key Worker for Lanark, Leeds and Grenville to support parents with system navigation, guidance and act as a key liaison/advocate for families who are impacted by FASD whether they have an official diagnosis or not,
·        Monies to provide FASD education to service providers including educators, justice services, social services, and health care providers,
·        Monies to support an FASD Parent/Caregiver Support Group modelled after the South-East Kingston Parent Action Group that provides monthly parent meetings for support, guidance, guest speakers and child care services for their children.  In addition, we would like monies to market this newly formed group throughout Lanark, Leeds and Grenville.
As mentioned at our meeting, we are currently exploring the possibilities of establishing a partnership with Citizen Advocacy Ottawa and their Fetal Alcohol Resource Program to be the organization that would receive funding on our behalf.  They have been doing amazing work in all the above areas, and their staff are well versed in the BC Key Worker program, Strength Based Approach to FASD and Diagnostic Services required to support families affected by FASD.  We were informed today that 1/3 of their requests for supports comes from our county. However, due to their funding model, they are currently unable to provide services to this area.  They will be attending our meeting on June 7, 2017 to move this conversation forward.
In addition, we would like to express the importance of having a rural voice on the proposed consultation group that has been outlined in the FASD Strategy announcement and would love for one of our members to be that voice.
Our discussions also highlighted the importance of having an Integrated Ontario FASD Strategy as outlined by Durham MPP Granville Anderson’s report. Although we appreciate that the Ministry of Children and Youth Services has taken this first step, there are still key issues that will need to be addressed at some point such as:
·        Currently, the Ministry of Education has no designation for FASD which is a Brain-Based physical disability.  The lack of designation makes this invisible disability challenging for parents and caregivers. Parents are continually relying on the co-operation of their local school board or in some cases their local school to get the supports they need for their children and often are met with resistance or lack of understanding.
·        Our Region does not have a multi-disciplinary approach for FASD diagnosis.  CHEO and Hotel Dieu are the main sources for diagnosis, but the wait lists are very long delaying a timely diagnosis, as indicated in our specific examples mentioned today.  Starting this process should come from an entry point into service and educational support and not because of crisis.
·        You heard from Development Services the majority of individuals identified with FASD who come through the crisis centre cannot get the supports through this organization as they do not meet the IQ eligibility requirement of under 2%.  This needs to change as these individuals cannot function independently in daily life.  They need the resources and the “External Brain” that Development Services can provide to live productive and contributing lives.
In conclusion, the LLG FASD WorkGroup will be forming a subcommittee at our upcoming meeting to develop implementation strategies and determine the specific financial dollars required to support the above requests.  Our counties have demonstrated a shared concern and collaborative approach on how to best serve those impacted by FASD.  Our network continues to grow and so we now have the fortitude, determination and the desire to work collaboratively with all stakeholders to have a positive, long lasting impact to reduce prevalence of the disorder, increase coordination of services, improve quality of life for those affected with FASD, and enhance supports for families and caregivers.
We appreciated the opportunity to have such a positive conversation with you and we look forward to continuing work with you.  We also appreciate your offer to help bring to our group representation from the Lanark, Leeds and Grenville Family Services.  Knowing that we have informed advocates at Queen’s Park is a great comfort to us and one that will have a very positive impact on our local FASD community.

LLG FASD WorkGroup

Thursday, 1 June 2017

FASD- Physical Disability at CDSBEO IPRC

My wife and I recently had the opportunity to attend the Catholic District School Board of Eastern Ontario SEAC meeting on May 24.  We had been invited to sit as a delegation for FASD at this meeting by chair and trustee Sue Wilson.  We were on the agenda to be nominated as the FASD reps on behalf of the LLG FASD Working Group.
In attendance at the SEAC meeting with Ms. Wilson were representatives of ten support organizations including VOICE, Community Living, Best Buddies, ABC, Easter Seals, and others.  The Director of Education, Dr. Hawes, the Principal of Special Education, Ms. Perrault and other Board reps were also present.
Within the discussion of the Special Education Report draft for next year, the question was raised involving IPRC's and IEP's.  The report stated if a student meets the criteria for identification, they are to be identified and placed accordingly.  CDSBEO determines meeting criteria according to the seven Ministry of Education definitions for exceptionalities.  Dr. Hawes was asked if FASD meets one of those exceptionalities.  She stated that FASD is a physical disability and meets the criteria as such.  She went on to say, a student impacted by FASD may also meet the multiple exceptionality if there is a communication, intelligence, or behaviour component as well.  However, the primary exceptionality should be a physical disability.
As you are probably aware, IPRC's continue to be a huge battleground regarding FASD.  From school board to school board, procedures and understandings change.  It reminds me that ultimately there needs to be direction given by the Ministry of Education regarding how FASD is to be defined.  Just like Autism has its own definition under the Communication umbrella, FASD needs its own definition under the Physical Disability umbrella.
To have a School Board Director make this statement is a testimony to Dr. Hawes and the Catholic District School Board of Eastern Onatrio.  She is to be commended for taking the lead on this and establishing the model others should be following.

Sunday, 14 May 2017


I know you may be wondering why I am including an article about robotics on a FASD forum, but writing about tech is my other writing career.  I love tech for our children because it provides science and math instruction in game format which they love to play.  Video games are all about telling a social story in a visual format which is exactly what our children with FASD need.  Finally, robotics, game creation, and digital cinematology give immediate feedback to our children whether they were successful or not.  Do you need your 10 year old to learn cause and effect?  Hand him a robot and let him go to town.

In our schools or media today, you may have seen the acronym STEM or STEAM.  In Canada, there is an acknowledgement that Science, Technology, Engineering and Mathematics are cross-curricular or related to each other.  There is also a recent development where Art is also understood to be connected.  Canadian economists see the fastest growing industry for the next twenty years to be STEM related jobs which is why the Ontario Ministry of Education is now focusing on numeracy instruction.  However, as parents, it can be difficult to stay up with all the new developments happening in this field.  Well, don’t worry, you don’t need to know it all, because all the resources you need are readily available.
I believe you should always look for items that are well established and have good tech support.  In the world of robotics, Lego continues to lead the pack.  Every techy child knows how to build with Lego, and Lego gives you the entire schematic right on their website.  And because they are so well-known, there are Youtube videos for every question you can imagine.  Lego is phasing out the NXT model so don’t go cheap and buy from Kiiji.  You don’t get any support and good luck getting replacement parts.  The easiest thing to do is buy the EV3 basic kit for $400 which will provide you with everything you need to participate in the Robotics Competition that happens every May in Ottawa  And you program it from the Lego Mindstorms program which can be done right from the brick or any standard laptop.  If you don’t want to start that expensive, I would suggest the Dash robot from Wonder which sells for about $200 at Toys R Us.  Don’t get the Dash and Dot kit.  Dot doesn’t do anything.  The reason I would suggest this one is because of the related apps.  Wonder provides the Go app, Blockly app, and Wonder app free on both Android and Apple.  The Go app basically runs it like a remote-control robot and fabulous for the beginner.  Blockly allows the child to learn how to program and Wonder is essentially game creation.  The Blockly language is the most common type of beginner coding.  The best part is once your child learns Blockly, they will be able to apply this learning in a lot of different areas.  The reason I like Wonder over the other 100 robots on the market, though, is the support they provide.  There are online contests your child can participate in, loads of tutorials online, and actual people who will reply to your questions.  They are new but seem to have the lead right now on this market.  And like I said, you can always go to Lego later if necessary. 
Robotics lend themselves so well to STEM education.  With Lego, you can start with the large blocks in kindergarten, go to the smaller blocks in grades 1-3 and then start building your robot in grades 4-6.  Most robots I see are basically vehicles.  What the child doesn’t realize is they are learning about automotive engineering, using math like patterning and symmetry and figuring out what creates speed and force.  On top of it, they also learn coding and programming through universal languages.  And the best part for parents is they don’t need to know anything.  Every child I have worked with will inevitably ask me how to do something.  I always reply, “Figure it out yourself.”  If they come back a second time, I tell them, "Look it up on Google.”  I haven’t had a child yet who couldn’t figure it out eventually.  In our school system today, the emphasis is on inquiry learning or discovery learning.  The students are expected to figure these things out independently.
When you consider an 8th grader has never lived in a world without smartphones, STEM is here to stay.  The reason our children are so much more comfortable with technology then we were is simply because it is all they have known.  As an elementary math teacher, when parents ask what should they be working on at home, I tell them “Don’t worry about the times tables, look at buying some Lego.”

Rob More is a tech writer for Canadian Family magazine, a Capital Region Educator Finalist 2016, member of the Centre of Excellence in Mathematics and Computing, and lead instructor of the Beckwith Summer Tech Camp.

Saturday, 13 May 2017

Lanark Leeds Grenville FASD Working Group announcement

The following letter has been sent to the following people:
For Education
Susan Wilson CDSBEO Special Education Advisory Committee Chair who wants to talk and have us present at the next meeting
Dr. Donaleen Hawes, CDSBEO Director of Education
Bill Macpherson, Upper Canada School Board Special Education Advisory Committee Chair who will read the letter at the next meeting.
For Mental Health
Dr. Laurie Dube  Mental Health and Addition for Lanark, Leeds Grenville Board of Directors Chair who will read the letter at the next meeting
Brian Turner Mental Health and Addition for Lanark, Leeds Grenville Board of Directors member as well as Chair of Carleton Place Drug Advisory Chair
For Politics
Randy Hillier, MPP for Lanark
Sophie Kiwala, MPP
Michael Coteau, MPP
Steve Clark, MPP who wants to talk thanks to Diane
For Corrections
Larry Bagnell, MP
Yasir Navqi, MPP
Gord Boyd, Chair of local Human Services Justice Coordinating Committee
EMC newspaper
Almonte Millstone
Hometown News Smiths Falls
North Grenville News
Kemptville TV
Lake 88.1
Jack-FM 93.9

May 8, 2017

To Whom May Concern,

On June 12, 2014, a small group of social service providers from the areas of Lanark, Leeds, and Grenville came together through a shared concern of how to best serve the local people who are directly impacted by FASD. This group then began reaching out and creating a network of both individuals, caregivers and service providers to begin the dialogue on what could be done. Through this network, the LLG FASD Working Group was formed and the first "FASD Community Conversation took place on December 8, 2016.

Through this conversation involving multiple agencies and impacted families, we have created this summary of the key themes and points raised by the "FASO Community Conversation" as a means of communicating the strengths, needs, desires and challenges faced by those impacted by FASD in Lanark, Leeds and Grenville Counties.

It was quickly obvious that all parties were aware of what FASD is, the impact it is having on our communities, that education is happening in all aspects of our society, and that our highly collaborative and transparent service providers are wanting to support these individuals.

However, it was also equally obvious that education is still necessary for families and service providers, there is a complete lack of available services and supports for FASD impacted individuals, and that those individuals have very little understanding on how to find those services. Frustration was also seen related to an inability to find someone who can provide a diagnosis for FASD. Interestingly, it was pointed out that our findings correspond with the prominent themes of Granville Anderson's 2015 roundtable report.

Further research was done on current Canadian FASO programs and the British Columbia model is seen as an excellent example. Their model focuses on navigation, diagnostics, outreach, and networking. In particular, their "Key Worker Program" which is being copied by Citizen Advocacy in Ottawa is the starting point for accessing all necessary resources. This model is so important because when an individual impacted by FASD is in crisis, they can't navigate or even problem solve. This third-party individual becomes the person who can lead them to their solutions and break down their barriers.

Based on these findings, the LLG FASO Working Group recommends the following Ministry­ funded initiatives to support these individuals and families.

A "Key Worker Program" that would serve our communities
FASO specialized respite, community support and life-skill development Eligibility to access current services
Increased availability and access to diagnostic resources

The LLG FASO Working Group is also currently creating the following resources. 
Development of a local Lanark, Leeds and Grenville FASO resource list 
Development of a local LLG FASO caregiver and individual support group

Fetal Alcohol Spectrum Disorder is a preventable, lifelong disability with no current cure, resulting from prenatal exposure to alcohol. Individuals with FASO have significant risk for disrupted education, incarceration, homelessness, mental health challenges, addiction and shortened life spans. These individuals tend to have learning and memory difficulties, impaired decision-making, social difficulties, health challenges, high anxiety and impulsivity and communication challenges. With supportive modeling and guidance, though, these individuals have demonstrated over and over again, they have the capability of being productive and valued members of our society. Approximately, 6,000+ people in Lanark and Leeds and Grenville Counties are directly impacted by FASO and do not currently meet the eligibility requirements to access any current developmental services.

As Ontario gets set to reveal the details of its first FASO strategy, the LLG FASO Working Group waits with great anticipation that we may finally have the necessary tools to make a real difference in our rural counties and invite the Ontario government and key stakeholders to collaborate with us in providing these supports and resources.


Erin Bertrand, Chair FASO Working Group Lanark, Leeds & Grenville (613)345-1290

Wednesday, 10 May 2017

Managing FASD - article

When I think about my three adopted children who have been diagnosed with Fetal Alcohol Spectrum Disorder, I think about how they absolutely amaze me.  Life is hard for all of us, but for them, the level of work they have to put in to achieve any success is mind-boggling.  And yet, they persevere and keep going forward because they truly believe they can do it.

FASD has become a talking point particularly in the adoption world as research continues to pour in about it.  The province of Ontario has just announced they are giving 26 million dollars over the next four years to support those individuals who live with this permanent brain injury and the people who serve as their external brains.  When our children first came to us, we had real questions as to whether they would be able to trust or love anyone.  We had questions about their ability to speak.  And we had questions as to whether they would ever be healthy.  My younger daughter was eight years old before she showed the ability to read anything.  My oldest daughter was nine before she understood that adults should take care of babies, not eight year olds.  We have seen urologist, pediatricians, psychiatrists, psychologists, ultrasound doctors, audiologists, allergists, and therapists.  And frankly, there are probably more but we have lost count at this point.

But we have found when you ask for help, people will line up.  Our immediate family see and appreciate our children as much as we do.  We know either grandma will be just fine babysitting the children.  Our medical team consists of open minded individuals willing to explore possibilities.  Our educational team are constantly asking us for advice and maintain exactly the same expectations as we do.  Our church friends have been the true friends who have stuck by us even when things get off the rails.  And our FASD network have been huge in providing answers, encouragement and love.  But ultimately, it comes down to us.  The amount of talking my wife and I do with each other is immense.  A typical night for us will include an hour of talking about everything that happened that day and spending time together.  Both my wife and I jealously guard our home and evenings.  We don’t have social media, we only have one phone we answer, and there was only four nights last year where one of us wasn’t home.  Our home is the safe zone where our children and my wife and I decompress on a nightly basis and the reason we can laugh and have fun on a regular basis.
And so we persevere.  My seventeen year old now still needs reminders on how much a loonie is, but can tell you exactly how much a horse weighs by just looking at it.  My sixteen year old needs a digital watch and a reminder the first number is the hour, but can bake a pie the local bakery will sell on its shelf.  My eleven year old is the loudest in the house, but needs everyone else to talk quietly.  And yet, he will spend hours cutting down trees and create firewood for the family.

Managing FASD isn't easy.  We say having FASD isn't a life sentence, it just life.  We have to constantly monitor our children's anxiety levels.  We need routine in every aspects of our life.  We need to surround ourselves with people who get them and appreciate their strengths.  We recognize at some point they will need to live independently and that scares us deeply.  But that is why establishing that solid foundation now is so important.  When you consider that CAS had worked with the last three generations of our children's birth family, we know they have the capacity to finally break the cycle. 

It is fascinating to us how well we complement each other.  Each one of us need the other four for love and support, and we all have unique strengths the family depends on.  That is why we can say with confidence and God’s help that we truly are a forever family.

Saturday, 22 April 2017

The Case for Compassion

I recently had the opportunity to attend a presentation by Kim Barthel and came away with so many thoughts and ideas it was hard to know where to begin.  However, the number one theme she focused on was compassion and that seems like a good place to begin.
The reason it is a good place to begin is because compassion enables us to see the real person.  I was reminded of this through a conversation I had with another person following the presentation.  They were talking to me about the fact the child they were working with is having a difficult time at school and they were asking for a Psych-Ed assessment to be done.  Through the conversation, I realized the child had experienced a lot of change and transitions recently.    As a result, I recommended that they focus on making the child feel safe and loved and wait on the Psy-Ed assessment for now.  It is utterly amazing to me how stress and anxiety can literally change a person.  I have seen student after student whose behaviour completely changes when they experience a large change or trauma in their life.  While we no longer should say love is enough, we should say love goes a long ways toward solving problems.
Why does love and compassion make such a difference?  It starts with an understanding of stress and anxiety.  We know stress and anxiety is a necessary part of our lives.  Stress motivates us and anxiety keeps us safe.  However, too much of stress or anxiety will overwhelm us and stop us from thinking clearly.  As a result, we lose the ability to problem solve.  Children in particular are more susceptible to this than adults.  The number one diagnosis of children today is generalized anxiety disorder recently passing ADHD.  Why is that?  Anxiety comes from high cortisol levels, a chemical our body produces when presented with a perceived danger.  The behaviour typically seen will be fight, flight or freeze.  A child may have an angry outburst or temper tantrum, get stubborn, say mean things meant to hurt, get physically aggressive and cause damage to property.  A child may also avoid, deny, always say everything is fine, constantly try to fix everything or agree with everything, run away, or focus on something.  However, the child may also daydream, refuse to do any work, obsess on something, become very quiet, cry, or just stare at something.  While these behaviours can be linked to several different reasons, the conversation becomes so important.  Any person, not just a child, will not naturally think to ask for help when they are overwhelmed with anxiety.  However, when we recognize this behaviour as a communication for help, we can literally become a lifesaver.
How do we do that?  It starts with compassion.  We must first realize children communicate differently than adults due to the difference in brain development.  Children are more attuned to reading faces than adults.  The first form of communication a baby develops is through reading its mother’s face.  Elementary children, in particular, still use facial expression as a primary means of communication with adults and other children.  The stare of over three seconds is considered to be the most threatening facial expression we have.  As a teacher, I am very cognizant of the fact that when I am speaking to a child, I will not tell them to look at me and then proceed to stare and talk.  If the child doesn’t want to look at me, I give them that option, but they must respond in some way whether by voice or body language.  The look of compassion has several aspects.  It is the head tilting to the right; chin and cheekbones slightly elevated; a lower, quieter deliberate voice; and hold the presence.  Holding the presence is such a key point.  We simply wait.  Not move, don’t speak, don’t get distracted, simply communicate “I am here for you.”  I joke that that I wish I could get through a day without a child crying on me, but when they know you are there for them, that anxiety release is something to behold.  What is so cool about compassion, though, it actually releases anxiety for both you and the child.  A stressed adult creates a stressed child.  A calm adult creates a calm child.

So the next time you feel like you are about to get into a shouting match with your child again, stop, take a deep breath, get yourself calm, and focus on how can you help your child through their challenge.  When they realize you do still love them no matter what they have done, you are laying the groundwork to be able to truly help them.  You will not be disappointed with the results.

Friday, 7 April 2017

Yet another FASD success story

I know I talk about my children a lot but I wanted to share what my middle daughter's boss thinks of her.

Cassie M testimonial

Monday, 13 March 2017

Letter to Michael Coteau and Sophie Kiwalla, MCYS

Michael Coteau, MPP
Ministry of Child and Youth Services
1200 Lawrence Ave. East, unit L02
Toronto, ON 
M3A 1C1

Dear Mr. Coteau,
            I would like to thank you for passing my earlier letter onto Marian Mlakar.  I found it very helpful having that direct phone call with her and getting some answers to my questions regarding the status on the Provincial Strategy for FASD.  Knowing that the strategy is now complete and is currently in the queue waiting for funding is certainly a great boost for my wife and I and our three children who have been diagnosed with FASD.
            However, to receive the news from Jeff Noble of FASDForever and Brian Tardif of Citizen Advocacy that while your office was interested in receiving information directly from them, it was discouraging to realize your office is still learning about this issue.
            Thus, I wanted to try and communicate to you and your office the impact FASD is having on our family and the province at large.
            FASD is a permanent brain injury with no cure.  It is defined as an invisible disability because to meet my children, you would not know what obstacles they are having to overcome.  Yet, their intelligence levels place them in the bottom 5% of the population and they can’t understand how certain actions will lead to certain consequences.  They can’t understand getting into a stranger’s vehicle is a bad idea.  Abstract concepts like good and bad, time, money, reading people’s emotions and being able to problem solve are all beyond their ability to understand.  However, with the proper supports in place, surrounded with the knowledge of what makes them unique, they can be and are being successful.  My three children can raise and show cattle, bake fantastic pastries and log a forest unbelievably well.  But they need my wife and I to help them through their anxiety, figure out the cost of things, and problem solve challenges.  You may recognize these challenges are extremely similar to the challenges people with autism face.
            To me, though, the biggest difference is in their life expectancy.  According to a study done by Thanh and Jonsson, the life expectancy of someone with FASD is 34 years of age.  The reason life expectancy is so low is because without support and education, someone with FASD has a propensity to poorer health, difficulty with maintaining healthy choices and care, mental health challenges, and poorer judgment which leads to these early demises.  When you consider there are currently 136,000 people in Ontario and 360,000 in Canada with FASD who will likely die in the prime of their lives and in the majority of cases leaving behind orphaned children, this truly is an epidemic.  When you consider the SARS epidemic of 2003 killed 44 Canadians, our residential schools with its 150,000 students and 6,000+ deaths and the largest epidemic in Canadian history, the Spanish Flu of 1918-9 killed 50,000 people, FASD truly is the worst epidemic in Canadian history.  And it is so preventable.  With proper clinics, community supports, system navigators and public advertising, we know this disability is manageable.
It is difficult for me to believe that your office has any larger or more pressing issue than getting funding for the Ontario FASD Strategy.  Please give it the consideration it deserves and make it a priority from this point on.  Thank you.
Rob More
Smiths Falls, ON

Saturday, 25 February 2017

Marian Mlakar, MCYS phone call

On Thursday, February 9, 2017, I had the opportunity to call Marian Mlakar, Director of Children and Youth at Risk department under the Policy Development and Program Design department.  She reports to ADM Jennifer Morris who reports to the Deputy Minister Nancy Matthews who reports to Parliamentary Assistant Sophie Kiwala who reports to Michael Coteau, Minister of Children and Youth Services Ontario.  This phone call happened due to my follow-up letter questioning the status of our provincial strategy and Ms. Mlakar wanted to speak to me directly.
The phone call lasted about ten minutes and the following information was shared.
Ms. Mlakar stated the policy development and program design for FASD support is complete.  It is currently with the Minister who has placed it in the queue for provincial funding.  She also stated this project is her main project and is following it very closely.  She is hopeful that the province will be making an announcement soon regarding the project.  However, she also stated the province has several pressing issues and isn’t sure how high a priority FASD support is to the province.  She also made reference to the fact that the four people above her on the org chart are all new to their positions and that she is currently reminding them of the pressing need for this strategy.
She also stated the policy and program design is based entirely on the provincial report released in Sept 2015.
She also stated that they have seen a slight increase in public queries over the status of the strategy.  Finally, she stated once the program design has received funding, it will immediately begin to be implemented on a full scale across the province.
Because she is not an elected member of the Ministry nor in communications or public relations, she needed to be careful about what she could share with me.  However, it was very clear that the only thing holding up provincial support is a current lack of funding.  Combine that with the fact that the individuals who should be advocating for that funding are all new to their positions, it is very clear to me we need to continue contacting Michael Coteau, MP and Sophie Kiwala, Parliamentary Assistant of the Ministry of Children and Youth Services, Charles Sousa, Minister of Finance and Kathleen Wynne, Premier to make sure they understand how important it is that the FASD program receive funding now.

Rob More

Smiths Falls

Tuesday, 31 January 2017

Thank you to all of you

I just want to put out a big thank you to everyone reading and commenting on these blogs.  We are out here in Lanark County trying to figure all of this out and it means a lot to us to know we are not alone.

We have received so much encouragement from you that you are giving us hope.

My wife has been meeting with folks and we are working toward helping create a support group out here and will certainly keep you updated on that.

By the way, you may notice there are no ads with this blog nor will there ever be.  I have no interest in making money from this.  If these blogs are helpful to you in informing others, I am meeting my objective.  If I plug another organization, it is because I found them helpful and suspect you will too.

Keep up the good work.  I have a couple other projects on the go right now so don't be surprised if you don't see anything for a couple weeks now.

Until later, Rob

How FASD Impacts Us All Canadian Family Article Mar 22

The following article is being published in on March 22.

How FASD Impacts Us All
As I was watching the news coverage around Bell’s Let’s Talk campaign on mental illnesses, I was struck by the similarities between these invisible disabilities and Fetal Alcohol Spectrum Disorder.  As a parent of a daughter with FASD and two other children on the 15 month wait list for diagnosis, our entire lives are centered by this disability.  Our 100-acre farm in the country, our children’s alternative schooling options, our work situations of special education teacher and employment counselor, our network of social services, and our extended family locations are all in place to help our children with their disabilities.  Without these supports, we know our children would not achieve the same level of success.
In a study done by Svetlana Popova and funded by the Public Health Agency of Canada, over 75% of people with FASD will struggle with the feel of things like clothing, receiving and expressing communication, noise sensitivities and hearing loss, and ADHD-like symptoms of hyperactivity, inattention, focus, anxiety and anger.  FASD also lowers life expectancy by 10 years.  However, a small study done in Alberta placed life expectancy at 34 years due to at-risk behaviour associated with mental illnesses.  In a study of 80 birth mothers with children born with FASD done by Astley, 2000, it was found 96% of those mothers had a mental health disorder with Post Traumatic Stress Disorder being the most common.  However, according to the Alberta Clinical Recommendations, 1999, supportive counseling for mothers with a mental health disorder can reduce the risk of a FASD child by more than half.  FASD is listed as the number one preventable disability and one of the very few disabilities that can’t be passed from parent to child through genetics.  Finally, FASD impacts 300,000 people in Canada with approximately 70% of those people living in urban settings to the cost of 4-6 billion dollars per year through health, education, social services and justice systems.
But just like with mental health disorders, FASD is a manageable disability as demonstrated by our amazing children.  My oldest daughter is our animal whisperer.  Whether it is training the dog, the horses, the donkey, the cows, and the pigs, she can handle them all.  Through her high school, she is gaining her credits through workplace environments and at 17 years of age, she knows she does well in outside environments, doing manual labour, avoiding the public and helping animals.
Our middle daughter is the baker and babysitter.  With her unlimited optimism, ready smile, and patience galore, she also has found her niche.  We are so blessed to be able to come home from work and have supper ready to go.  We never are concerned about leaving the children because we know our middle daughter will keep her head. 
Our last child is our buddy.  He is the one who can watch me do something once and immediately copy it.  He is the one who built a table at the age of nine using his hammer, screwdrivers and saw.  He will go to the bush and chop down trees for hours. 
However, they also need supports and structure.  Every day of the week has a morning, afternoon, and evening routine.  They work at places that don’t ask them to problem solve.  They get their direction and they follow it.  They have technology that figures out money, time and locations for them.  They use their computers to read and write.  They have tools, strategies and medication to help them cope with anxiety, fear and anger.  They also have mentors that help them understand social cues and norms.  They all have quiet places they can go to relax, both at home and at school.  Finally, they have friends and family who are always ready to step in and listen.
While our children have FASD, it is not what defines them.  Just like anyone else, they have their strengths and needs.  And just like anyone with a mental illness, they know they can’t do it by themselves.  As our First Nations have said for centuries, it takes a community to raise a child.  We must always be ready to listen and help.  And when we see them succeed, we celebrate their success because we know and appreciate what they have accomplished.  And when they or anyone else in our community succeeds, it impacts us all.  If you would like to learn more on how you can help, please attend the 1st annual Eastern Ontario FASD Symposium March 31 and April 1 in Ottawa.  

Not only being the father of three amazing children, Rob More is a special education teacher and writes a blog called  where he is sharing his conversations with the Ministry of Child and Youth Services and with his Member of Parliament about FASD.  He is also a regular contributor to site.  He will also be sharing his knowledge at the FASD Symposium in Ottawa as well and will be published in Focus on Adoption Fall issue.   He also runs a summer tech camp for special needs children.

Saturday, 28 January 2017

Reply to Scott Reid, MP reply

Dear Mr. Reid,
As your staff continues its research on Bill C-235, I wanted to share this blog with you to assist on your research.

While most of us know drinking alcohol during pregnancy can cause Fetal Alcohol Spectrum Disorder, we are just now learning the impact FASD is having on our Canadian culture.  In the past two years, we have seen the Canadian Medical Association changed how FASD is diagnosed, the federal government voted and rejected a bill to allow judges to use FASD as a mitigating circumstance in sentencing, British Columbia and New Brunswick have established provincial strategies on how to prevent FASD and Ontario recently conducted preliminary research on FASD prevalence.
FASD is the number one preventable disability in Canada with over 300,000 diagnosed people with this disability including my three children.  However, due to the lack of clinics equipped to diagnose and the new diagnosing criteria, it is expected that number will rise significantly as this new criteria and clinics are implemented.  FASD is considered to be a permanent brain injury according to research by the National institute on Alcohol Abuse and Alcoholism.  While it is not unusual for children with FASD to have normal intelligence, a high percentage of people with FASD will have ADHD or struggle with social interactions.  As a result, they will often act confused, immature, distracted, and impulsive.  FASD also impacts the person’s overall health according to a study done by Svetlana Popova and funded by the Public Health Agency of Canada.  In this study, over 75% of people with FASD will have struggles with their senses particularly touch and hearing, expressing and receiving communication, and remaining focused and organized in their daily lives.
These characteristics will have huge impact on their lives and society because they won’t grow out of it, medication has a minor or damaging impact, and they tend to copy the culture around them.  We see its effect indirectly in all parts of our society.  According to the Canadian Family Physician Journal, it is estimated FASD is currently costing our country 4-6 billion dollars a year if the prevalence is truly 300,000 people.  This costing comes from health care, special education, social services and the justice system.  People with FASD require frequent health treatment due to anxiety, mental illness, sensory depravity, and ADHD.  They require high levels of support and equipment to successfully complete schooling.  They require social assistance due to mental illness, an inability to hold regular fulltime employment except in special circumstances, and life support people.  Finally, it is estimated 25% of our convicts currently have FASD.  Due to their inability to connect consequences with actions and communication challenges, people with FASD are extremely vulnerable to getting tricked or forced into committing the crime allowing the leader or planner deny involvement.  In a study done by Astley SJ, Bailey D, Talbot T, Clarren SK (2000), it found a direct correlation between abused women and FASD.  Finally, the Honourable Wally Oppal also found a correlation between FASD and missing women in his Missing Women Inquiry. 
But there is hope.  We know through education and proper social supports, FASD is a preventable disability.  As research continues on brain plasticity, there may be new treatments available.  Just like people with ADHD, when an external brain can be provided, a person with FASD can succeed.  It is also important to recognize it is not a genetic disability.  There is currently no evidence that a mother or father with FASD will pass it along to their children.  As long as the person doesn’t use drugs or alcohol or encourage its usage, their children will develop as normal.  As the general public continues to learn about this invisible disability and the importance of community, we can remove this stigma and truly make a difference.  To learn more, go to the FASD symposium in Ottawa March 31 and April 1 or go for other FASD events and research in Canada.

FASD Symposium in Ottawa March 31 and April 1

I just wanted to share this info along.  You may notice I am presenting Saturday on the Big I's:  IEP's, IPRC's and other Info.

Ottawa FASD Symposium March 31 - April 1
For the poster see:
Posted on Jan. 24, 2017

Registration is now open for the 1st Annual Eastern Ontario FASD Symposium titled "Successfully Supporting Invisible Disabilities" . For details and registration link, go to

Supporting Invisible Disabilities
For professionals and caregivers
1st Annual FASD Eastern Ontario Symposium

International speaker on neurobiology
and sensory processing

"When Disabilities are INVISIBLE" March 31
"Compassionate Strategies for Change" April 1

Friday, March 31, 2017
& Saturday, April 1, 2017

2176 Prince of Wales Dr.
Nepean, ON K2E 0A1

Reply to Ms. Mlakar, MCYS

The following letter was sent to the following email addresses.

                                                                                                                       Robert More
                                                                                                                      5150 Roger Stevens Dr.
                                                                                                                       Smiths Falls, ON K7A 4S6
Marian Mlakar
Director of Children and Youth at Risk Branch
101 Bloor St. West 2nd floor
Toronto, ON M5S 2Z7
Dear Ms. Mlakar,
               Thank you for your expedited reply to my Dec. 23 letter on January 16.  I was extremely pleased to receive such an informative and heart-warming reply as was Nancy Lockwood of Citizen Advocacy in Ottawa.
               I am very excited to see you are the individual heading this important policy development on our provincial strategy for FASD.  Your presentation at the FASD One Symposium this past March was excellent and to know such an informed person is leading the charge is a real boost to our spirits.  And to know you have Ms. Mannella, Mrs. Trott and Mr. Matrakis from your Mental Health Programs Unit as well as Ms. Lambert from the Healthy Kids Initiative bringing all this together is wonderful.
               I do have a few items regarding your letter that I was hoping you could clarify.  Within your letter, you state in paragraph two following the release of the roundtable report, the MCYS “engaged” in dialogue with various parties to seek input on how to move forward.  I am assuming since you used the past tense that you have completed that dialogue and have now moved into the actual policy development phase.  I did reach out to my contacts in the Ottawa FASD Support Group, Citizen Advocacy in Ottawa, the Lanark/Leeds/Grenville FASD Working Group, canFASD, NeuroDevNet and Ontario Federation of Friendship Centres to see if any of them were aware of this dialogue that you completed since the roundtable report.  I didn’t get any affirmative replies; however, I recognize that is confidential information, and they may simply not be able to tell me. 
               As a former project manager for JDS Uniphase, it appears to me you are using the classic four stage approach to your strategy.  You have completed stage one with your initial research and preliminary report.  You have now moved to stage two where the policy development is now happening.  I assume stage three of initial implementation using pilot projects will be next and finally, stage four of universal implementation will follow.  While I recognize the data is still confidential, your estimated completion date for stage two should not be considered confidential.  When do you estimate stage two will be completed?
               As you may be aware, Citizen Advocacy Ottawa is hosting a national symposium on FASD this year on March 31 and April 1.  Our audience would find a current update on the status and time frame of our provincial strategy to be extremely valuable information and would serve as huge boost to all of us who are currently struggling with FASD or providing care for those who have FASD.
               Thank you for your time and work on this matter.  As I said before, it is wonderful to have such a champion in our corner in making a difference for our province regarding FASD.  I look forward to your reply.

Rob More