Wednesday, 9 May 2018

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

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

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 -

For Service Providers -

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.

Friday, 20 April 2018

Voices needed for Ontario FASD Website

It has just been announced that Best Start Resource Centre by Health Nexus 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.

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.

Tuesday, 17 April 2018

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?

Friday, 13 April 2018

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.

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.

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.

Monday, 2 April 2018

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.

Friday, 2 March 2018

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.

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.

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.

Friday, 23 February 2018

Bill 191 update with MPP Hillier's public support

This week, as promised, I wanted to give you an update on the impact our advocacy is having.

1) The second reading of Bill 191 has been added to the orders of the day.  It is currently waiting to be added to the schedule.  This decision is made by the House Leaders led by the Honourable Yasir Navqi in consultation with MPP Jim Wilson and MPP Gilles Bisson.  MPP Randy Hillier just shared with me the following letter advocating for this scheduling.  MPP Hillier letter  You will notice that he states this bill has a lot of support from MPP's and there is no reasonable explanation for why it should be delayed.  I believe this is the first public statement made by an MPP in support of Bill 191.

I would encourage you to follow suit and be loud.  Copy and paste the following letter into an email and send it to the three house leaders, MPP Kiwala and MPP Hillier, and your local MPP.  You can also mail the email to the addresses listed at the top of MPP Hillier's letter.

February 23, 2018
Dear House Leaders,
I am writing to you today regarding Bill 191 Education Amendment Act (Fetal Alcohol Spectrum Disorder) 2017, introduced in the House by MPP Sophie Kiwala (Kingston and the Islands) on December 13, 2017.

It is my understanding from the unanimous assent on the first reading that this bill will face no obstacles or objections to passing.  Simple in its construction, it promotes awareness and understanding of Fetal Alcohol Spectrum Disorder (FASD) within our school boards, and facilitates collaboration between school boards and local FASD Groups.

With the end of this Session of Parliament quickly closing upon us as we lead into an Ontario General Election, I am asking that you work together to ensure the speedy passage of Bill 191 through the legislative process, that it may become law before the House is dissolved for the 42nd Ontario General Election.

I look forward to your mutual consideration of this request, and your timely reply.


Rob More

Copies: Sophie Kiwala, MPP
Randy Hillier, MPP 

2) House Leader Yasir Navqi met at the end of January with his constituents and listened to a passionate plea to expediate the passing of Bill 191 and appeared to be receptive.  However, as you can see from the Hansard records Hansard Orders that under the Orders M191 is printed but not scheduled.  Rowan's Law was chosen on Tuesday for second reading to be debated which also amends the Education Act to establish protocols and procedures related to concussions.  I find it interesting that the Brain Injury Association of Canada Brian Injury Prevelence states that there are currently 1.5 million people in Canada living with an acquired brain injury which includes concussions, accident victims, stroke victims, oxygen deprivation victims and other conditions.  We have established through recent research there are at least 1.1 million people in Canada impacted by FASD which doesn't include their caregivers.  If Rowan's Law, a private member public bill looking to amend the Education Act AND controversial is being given priority, shouldn't Bill 191 be next?

3) 1,203 of you downloaded the template letter requesting Education Minister Naidoo-Harris to advocate for Bill 191.  There are now over 10,000 of you currently reading this blog.  Director of Education for Keewatin Patricia District School Board Sean Monteith and Director of Education Hamilton-Wentworth District School Board Manny Figueiredo have publicly stated their support for Bill 191.  The CDSBEO, Hamilton, and four other SEAC's have publicly stated their support for Bill 191.  The Minister of Education Special Advisory Committee has asked for a survey to be created to give them points of conversation regarding FASD and Bill 191.  Every single group directly impacted by Bill 191 has voiced their support as well as every single House party.  Why are House Leaders Navqi, Wilson and Bisson not scheduling this bill?

4) Martyn Beckett‎, Assistant Deputy Minister, Student Support and Field Services Division, Ministry of Education currently has been assigned the FASD portfolio for the Ministry of Education and is ready to go if Bill 191 is passed.

5) The Kingston Parent Action Group has secured a room at Queen's Park on April 11 with MPP Kiwala's help and financial support from Dr. James Reynolds of Kids Brain Health and Steve and Karen Catney of Alliance Youth Services and has invited all 107 MPP's to meet with them.  They have secured the presence of several national FASD experts to network with them.  The room has capacity for 75 people and the hope is to have it filled.  After three days, there are already six MPP's with their staff who have confirmed their attendance.  It is our expectation that Bill 191 will already be passed and we will be discussing next steps in regards to FASD Awareness.

Keep an eye out for Vanessa Hrvatin and the National Post.  We should be seeing some stories on FASD coming out soon.

I am looking forward to this coming election.  You should be thinking about showing up at your local MPP's debate and being the first to ask a question.  Local papers always print the first couple questions asked and this is really free and easy publicity for FASD and its message.  

I haven't heard any news regarding the MCYS applications as to which organization is responsible for distributing the money for the One Stop Hub, the Research Hub, or the Parent Support Groups.  I have heard the Key Worker hirings have started and applications are being received across the province.

We are making unbelievable progress and each one of you should be commended for all you do.  None of this is possible without your involvement.  Please keep it up and make a difference.

Saturday, 17 February 2018

Best Practices, Challenges and Possible Solutions in Schools

I was recently asked by the Waterloo Catholic SEAC Chair to share my thoughts toward a survey centered around FASD conversations with the Ministers of Education Advisory Council on Special Education.  I was also asked by a couple special education consultants to do the same for them.

Next week, I will provide an update on the status of the advocacy movement regarding Bill 191.

The following is Shelley and my thoughts on what a successful strategy to support students with FASD would look like.

Successful Practices -
1) Establish relationship and trust
2) Establish a safe person. We want to encourage the student to run to someone, never away
3) Check for comprehension particularly at the beginning of class
4) Frequent opportunities to move with heavy muscle usage
5) Use high interest topics and be flexible and accommodating in assessment
6) Use chunking and limit the amount of talking and information
7) Simple directions
 8) Encourage class participation on their terms
9) Recognize the signs of anxiety and immediately seek to de-escalate
10) Give lots of body breaks including recess and gym
11) Seek opportunities to instruct in quiet, affirming settings
12) Make instruction visual and concrete
13) Maintain routine at all costs.
14) An educational assistant is a key partner in achieving success. They always need an external brain

1) Educational assistant positions have been getting cut in the last four years and existing positions are getting stretched thinner.
2) Violence in schools are generally tied to mental health challenges. Educators are lacking in best practice training for supporting mental health challenges. Students with FASD, ADHD, Anxiety, PTSD due to trauma, Autism, and concussions can all have mental health challenges.
3) Violence is becoming prevalent in our schools today. On June 27, 2017, the first comprehensive survey on violence in schools was released. Almost 90% of Ontario teachers have experienced violence in the school, 85% say it is increasing and 80% say it is become more severe.
4) The province have also cut LHIN funding so our access to occupational therapy and speech language pathology is becoming much harder to access.
5) These neuro disabilities are frequently misunderstood. The child cannot choose between right and wrong behaviour when they are experiencing trauma and/or anxiety. They require an external brain to choose for them.
6) FASD is a lifetime disability. They will always be dealing with these challenges and will repeat poor decision making if put in unsupported environments.
7) There is now a provincial-wide shortage of young teachers. Every school board in this province is currently experiencing a lack of supply teachers which in turn creates more difficulties in maintaining routine for these students.

Possible solutions/future directions
1) Early intervention is so important. When effective strategies are learned and engrained early in controlled environments, these strategies will stick with them and the individual will go back to them. 2) Create an environment of acceptance and listening from the start. The problems always come when they try to deal with it on their own and hide it. When they use their team, they always find solutions.
3) When they are used to relying on others early, they will continue to rely on others for support through their entire lives.
4) All the needed tools already exist in the school system to support students impacted by FASD. The tools just need to be adapted. ABA consultants can help determine the anxiety triggers. Behaviour consultants can focus on finding self-regulation strategies and not reward systems. Occupational Therapists can develop sensory profiles and get the proper sensory tools. Speech-Language Pathologists and Psychologists can find the cognitive strengths and point out the things that create frustration.
5) Social and Emotional Learning Coaches need to be informed and educated on how to help these students and getting training from qualified counselors and/or psychotherapists who specialize in supporting the effects of FASD.
6) Assistive Tech people can support the deficiencies and create some level of independence. With technology, these students can follow their routine, they know when to start and stop, reminded to take their body break, refer back to assignment expectations, get extra help, work with visual mediums and low noise volume, and use relaxation programming.
7) Students impacted by FASD also require direct and specific digital citizenship education. They can’t filter the drama and amount of words that comes from social media. They need their external brain to help them navigate that information.

Other Comments Unless school boards are given the necessary tools to deal with the rising prevalence of students impacted by FASD, it is going to get worse. This is why Bill 191 is receiving so much support from Boards of Trustees, Special Education Advisory Committees, educators, teacher associations, parents and students across this province. Bill 191 is required for students impacted by FASD, necessary for students impacted by neuro disabilities and good for all students.

Sunday, 11 February 2018

Managing emotional regulation

One of the topics that I have been hearing a lot of lately in the toughest month of the year is
centred around emotional regulation.  When children impacted by FASD become extremely
stressed, they will find ways to release that emotion. Some of the methods that children may
use is swearing, hitting and kicking other people.  As parents, it is hard to know how to deal
with that situation.
The first thing you need to be aware of is this is a method of communication and is not specifically
targeting you.  I recently learned that we all have three muscles groups that we will use to release
that emotion.  Those three groups are our jaw muscles, arm muscles and leg muscles.  Just like
we have verbal, visual and touching learning styles, we all have a preferred method of the three
muscles groups.  If your child prefers to run or kick when extremely angry, they prefer leg muscles.  
If they punch or flap, they prefer arm muscles. And if they prefer to talk non-stop or yell, they prefer
jaw muscles.  The key to this is which one actually de-escalates them when they do it.  The other
groups will be for maintenance purposes only.
Once you determine their preferred muscle group, start looking for the signs that tell you they are
escalating.  Children will show behaviour that will tell you when they are struggling.  Some behaviours
you may see include becoming quiet, leaving and hiding, breaking out in hives, their lips and/or hands
becoming tense, or holding their breath.  This is where you really want to become the detective and
actively watch what is happening before they explode.  When children are struggling, it is normally
due to being asked to do something or manage something which they can't do.  Frustration will build
and eventually you get the explosion.  If you see frustration starting, end the activity immediately and
go to a de-escalating activity.
As you begin the de-escalating activity, be very conscious of your own state of mind.  Force yourself to
remain calm, breathe and use a quiet voice.  Focus on showing compassion to your child.  You want
to get close to them and get them to focus on you instead of the frustrating activity.  If they are too far
gone to focus, ask them to count to ten with you.  Counting to ten makes them engage their logical
brain and gives their emotional brain a chance to clear out the chemicals that are overwhelming them.
 You may need to count to ten three or four times before they can start talking.
You can move to your de-escalating activity now.  If you know arm muscles is their preferred muscles,
get a big exercise ball, hold it on the floor and tell them to start punching it.  Use both arms and
remind them to breath while they are doing so.  Take the ball and get them to bounce it as high as
they can.  Get them to throw it at a wall as hard as they can.  Do as many pushups as possible.  For
leg muscles, get on the trampoline and bounce as high as possible.  Sprint as long as you can.  Go
swimming in the pool.  Do as many squats as possible.  For jaw muscles, chew on a hard chew toy,
practice doing the auction song, yell as loud as possible and talk as long as possible.  The key is
remind them to do deep breathing in all these activities.  You do this until they are completely
exhausted.  Do not try to understand what escalated them at that time as we don't want to shame
them.  Wait until the next day when they are calm and have had time to process.
The elephant in the room, though, is what if they are too far gone and start hurting you or others.  
First, remember to stay calm.  Your child is communicating they need help and that requires you to
have control of the situation.  It may take time but they will follow your model.  If you get angry, they
will get angry.  If you are calm, they will get calm.  If you find yourself in a situation where you are
getting hurt, look into getting trained in Nonviolent Crisis Prevention Intervention.  This is the method
the Ministry of Community and Social Services recognizes the proper form of prevention and use of
physical restraint.  Most local colleges and/or service providers at times offer this course as well as
certain organizations. recently posted an excellent article regarding how to use NVCI with someone impacted by FASD.
You want to get yourself informed about your child's signs and triggers of frustration.  Once you
recognize the signs, the fear that your child may explode on you will leave because you will see that
they are communicating to you when they need help.  If you are having difficulty recognizing the
signs, get help from a third party like a psychotherapist.  My wife and I have benefited greatly from
having others giving us insights and perspectives we just don’t see.  In all my years of teaching
special education, I have yet to meet a child who wouldn't give me some sign they were about to
explode.  It may be quick and/or subtle, but the signs will be there.  Remember, you are a great
parent and your child does love you no matter what they may say or do.

Saturday, 3 February 2018

Informal announcement regarding Key Worker implementation

Hello all,
The Lanark, Leeds Grenville FASD Work Group and the Kingston Parent Action Group has received notification that Kids Inclusive in Kingston who is the Special Needs Strategy Coordinating Agency for Kingston Frontenac Lennox Addington and Lanark Leeds-Grenville service deliveries has received the funding for the FASD Key Workers in these two service deliveries.  They are currently developing the job description for these workers and hope to be hiring by April timeframe.

Obviously, I am thrilled to see that it appears that MCYS has separated the funding and has established Lanark, Leeds-Grenville as its own service delivery and therefore should have its own Key Worker.  The draft job description includes the following:

FASD Worker Role
  • Provide expertise on FASD, consultation and support to build seamless system navigation for individuals with FASD or suspected FASD and their families;
  • Connect families to relevant services and other community supports/resources to support the inclusion and stability of children and youth in family, school and community life;
  • Facilitate the exchange of information between relevant providers in the children’s services, education, and health sectors in each service delivery area;
  • Explore flexible and innovative approaches for service delivery to meet the needs of the child/youth and bring forward any barriers to innovation that may exist;
  • Build FASD capacity within Coordinating Agency and with other sector partners;
  • Deliver FASD supports to children, youth and families;
  • Educate parents, caregivers and school personnel about behavioural symptoms associated with FASD;
  • Be knowledgeable and available to discuss the child/youth and family’s concerns;
  • Participate in a provincial FASD Community of Practice;
  • Participate in provincial FASD training sessions;
  • Develop a support plan, not a formalized, cross-sectoral Coordinated Service Plan.

Key principles for FASD workers include:
          Workers will provide services to children and youth up to the age of 18, including Indigenous children and youth, and young people between the ages of 18 and 21 who remain in school. They will provide direct service to children, youth and families with FASD, including consultation and system navigation support, as required.
          Formal diagnosis of FASD will not be required to access the services and support.
          Not everyone served by FASD workers will receive Coordinated Service Planning.

Margaret Van Beers is the Director of Kids Inclusive and will be the primary decision maker in the allocation of these funds and hiring of these individuals.  She has extended invitation to the Chairs of LLG FASD WorkGroup, Erin Bertrand and Kingston PAG Rep. Len Whalen to collaborate with her in developing this implementation and get our input.  Obviously, the key aspects we want to stress is the need for the Key Worker to be mobile and part of the community fabric.  From a Lanark Leeds-Grenville standpoint, if the Key Worker is housed in Kingston, that will clearly not work.  It is a 2.5 hour drive from Kingston to the north border of Lanark one way.  The Key Worker needs to be working in a central location of Lanark, Leeds-Grenville.  Considering we have no central newspaper, no TV station and two radio stations devoted to this area with over 1/3 of the area still not having cell phone reception, mass media advertising does not work here.  It is face to face conversations with the key players in the community that will get the needed services to the needed people which again is why the key worker needs to be part of the community fabric and physically located here.  It appears the Lanark and Leeds-Grenville Hub associated with Kids Inclusive is Lanark Community Programs in Carleton Place and Developmental Services of Leeds-Grenville in Brockville.

They have also hired CanChild from McMaster University to provide the MPOC-20 tool to get feedback from parents as to the effectiveness of their implementation.  It will be the responsibility of all coordinating agencies who is responsible for the administration of getting this feedback from parents after implementation.  It is extremely important that all funding is used exclusively for a FASD Key Worker.  It is my hope that this funding will not be used for hiring a service coordinator, shared with autism supports, or admin costs within the organization.  It is very clear these coordinating agencies are just getting infrastructure in place as of literally this month considering Kids Inclusive is currently hiring their service coordinators and London is currently taking applications this month.

It sounds like MCYS is giving this funding to the current 34 coordinating agencies across the province who they tasked with developing the special needs strategy across the province in 2014.  I do know  Update September 2016 - Representatives of the government Ministry of Child and Youth Services(MCYS) contacted OCTC as the Coordinating Agency (Ottawa, Prescott-Russell, Stormont- Dundas-Glengarry) in the summer and identified a few questions related to the pending CHEO-OCTC amalgamation and the partnership model that was outlined in our proposals.  The executive director for OCTC is Anne Huot who will be the primary decision maker for those service areas.

To figure out who your coordinating agency is, it will be an organization currently receiving funding from MCYS and is in charge of developing the special needs strategy in your area.  It seems like your local children treatment centre is the most likely to be your coordinating agency.  If they are not, they should know who is the coordinating agency.  I did find London has CSCN as their coordinating agency.  I have found updates from the Special Needs Strategy and MCYS that after three years, they have now signed agreements from 29 of the 34 agencies and expect all agencies to begin implementation by Spring 2018.  I also received confirmation that Karen Huber has been hired as the Key Worker for the Waterloo region through Developmental Services Resource Centre

It also sounds like MCYS will be identifying another 16 positions to cover the areas with high needs in terms of FASD to be implemented by 2018-19.  They are currently in process to make the determination of where the 16 high needs areas are located.

In closing, we need to get informed as to who these agencies are and get our message to them.  It is clear that MCYS wants these service providers to be working in collaboration with us.  After you introduce yourself, insist on finding out when they will be providing this service, when MCYS is providing the funding and when they will be getting feedback from their MPOC-20 survey.

Please feel free to continue contacting Minister Coteau at

Friday, 26 January 2018

Update on Bill 191 advocacy across the province

Just a quick blog to update you on the impact your letters are having.

We have received confirmation that FASD Awareness Day at Queen's Park is happening Wed. April 11 where all 115 MPP's are invited for a lunch and hear presentations from FASD individuals and organizations from the Education, Research, Health, Justice and Social Services sectors.  It is also normal to have MPP's invite particular presenters to their offices for further discussion during this day.  A big thank you to Steve Catney of Alliance Youth Services and Dr. James Reynolds of Kids Brain Health Network for providing all necessary funds to make this day happen.

We also received confirmation that Mark and Savanna from Hamilton and Mary Ann from Halton were able to get a face to face meeting with Education Minister Naidoo-Harris.  However, it was supposed to happen today but got postponed likely due to yesterday's bombshell from the PC party.

We also got confirmation a local Ottawa FASD delegation also got a face to face meeting with House Leader Yasir Navqi to talk about Bill 191 and advocate for its scheduling.

Finance Minister Charles Sousa has also extended at least two invitations to FASD reps regarding 2018 Budget consultations which is happening next week.

MPP Kiwala is currently lobbying Education Minister Naidoo-Harris to appoint a FASD rep on the Ministry's Advisory Council for Special Education.  She has received an application for this appointment.  MASCE is the provincial council who speaks directly to the Education Minister three times a year.  An appointment on this council guarantees a seat for a minimum three years and maximum six years for that person.  However, if FASD becomes recognized as its own unique exceptionality, that seat becomes permanent.  And it doesn't matter if the Minister changes or even the party.  That FASD rep remains and continues to advise.

This was brought to my attention due to the fact Assistant Deputy Minister Martyn Beckett from the Ministry of Education is collecting contact information from FASD sources in case Bill 191 does pass.  He would normally speak to the FASD rep from MASCE but he doesn't have anyone to speak to there.

And finally, the letter from the Catholic School Board of Eastern Ontario supporting Bill 191 should be sent next weekend to all provincial SEAC's, Catholic trustees, and every school in that school board.

There has now been 1187 downloads of the template letter.  The message is getting out and we are now getting replies from MPP's all over the province.  Keep up the good fight, we are definitely making progress!

Saturday, 20 January 2018

Impact of Cabinet Shuffle with new Education Minister Naidoo-Harris

I know there has been lots of discussion this week about the impact of having MPP Hunter and MPP Naidoo-Harris moved to new portfolios.  If you haven't heard, Ms. Wynne shuffled her cabinet this past Wed., moving MPP Hunter from Education to Advanced Education and Skills Development and promoting MPP Naidoo-Harris to Education Minister.

Regardless, this is actually a great opportunity for us.  Within the Ministry of Education, there are actually three MPP's.  MPP Naidoo-Harris from Halton is now the head Minister and she is on record as being in support of FASD.  “The Halton Fetal Alcohol Spectrum Disorder Collaborative provides important support for many Halton families facing challenges in their lives. This Ontario Trillium Foundation grant will help them expand their vital services and take care of the unique needs of local children and families affected by FASD. I’m so pleased our FASD community is getting this help.” – Indira Naidoo-Harris, MPP for Halton. Our friends in Halton are all over this and banging on doors as I speak.

Second, MPP Harris is still in the Ministry and MPP Granville Anderson is actually the parliamentary assistant in the ministry. The Deputy Minister Bruce Rodrigues, who all the letters actually go to, is still there. While I am trying to confirm, I have heard there is an Assistant Deputy Minister in the Ministry of Education who has been tasked by DM Rodrigues to start drafting policy in preparation of Bill 191 possibly passing. The other good part is Minister Hunter is now in charge of adult job skills and training including employment training and supports, apprenticeships, and colleges. We know how difficult it is for our adult children to maintain employment. Minister Hunter now has that portfolio.

We just passed 1000 downloads of the template letter and you may have seen from my last blog that the Catholic District School Board of Eastern Ontario is now sending a letter of support for Bill 191 and encouraging all school boards, SEACs, Catholic Trustees and local MPP's to also support the bill.

If you are up for another letter, I have changed the first paragraph of the template letter to have it addressed to Minister Naidoo-Harris. I have changed the access to it. To access it, please go to file/make a copy. Once you make a copy, copy and paste the first paragraph and put it on your Minister Hunter letter. You can also download the letter onto your computer from file/download as/docx. You should save a copy of your letter on your computer. We will likely be using it a few times over the next few months.

Due to the fact the bill has passed first reading with unanimous assent and conversations are happening in the Ministry of Education, our biggest obstacle now is getting it on the docket for second and third reading. The scheduling of the docket is determined ultimately by House Leader, the Honourable Yasir Navqi in consultation with Opposition House Leader Jim Wilson and Third Party House Leader Gilles Bisson.

We need to get louder now and make it clear we see this as an election issue. Please send it to the four following people:

as well as your local MPP.  This is really important as we now have voices coming from about 80% of the province now.  If 80% of all our MPP's know we are serious, we will get this done.

Tuesday, 16 January 2018

CDSBEO Board of Trustees passes motion supporting Bill 191

Tonight, the Catholic District School Board of Eastern Ontario passed unanimously the following motion brought by Trustee and SEAC Chair Sue Wilson.

We, the Catholic District School Board of Eastern Ontario, move that a letter signed by the SEAC Chair Sue Wilson and the Board Chair Todd Lalonde be sent to Education Minister Indira Naidoo-Harris encouraging her to bring Bill 191 forward for a second and third reading as soon as possible which would amend the Education Act to require Ontario School Boards to promote awareness and understanding of FASD including best practices for students impacted by FASD and facilitate collaboration with local parents and FASD Support Groups in the undertaking of this promotion.  
We also move that this letter be sent to all provincial Special Education Advisory Committees, the Ontario Catholic School Trustee Association and the Ministry's Advisory Council on Special Education.  
Then as an amendment, it was moved the letter be sent to all MPP's whose ridings are contained within the CDSBEO catchment.

In the following discussion, CDSBEO Trustee chair and Ontario Catholic Trustee Association Regional Director Todd Lalonde also stated that he will be meeting with the OCSTA Board of Directors this coming Friday and will begin a discussion involving it.  

The letter will be written in the next two weeks by Superintendent of School Effectiveness for Special Education Dr. Donaleen Hawes and then brought forth to the CDSBEO SEAC meeting on Jan. 31 before being sent to the aforementioned organizations and people as well as all schools in the Catholic District School Board of Eastern Ontario.

In the following discussions, the letter will now be sent to Education Minister Indira Naidoo-Harris.  I know there is currently discussion about what the latest cabinet shuffle means for Bill 191.  Our new Education Minister Indira Naidoo-Harris is on record as being in support of the work the Halton FASD is currently doing.  “The Halton Fetal Alcohol Spectrum Disorder Collaborative provides important support for many Halton families facing challenges in their lives. This Ontario Trillium Foundation grant will help them expand their vital services and take care of the unique needs of local children and families affected by FASD. I’m so pleased our FASD community is getting this help.” – Indira Naidoo-Harris, MPP for Halton  When you consider that MPP Hunter, MPP Granville Anderson and now MPP Naidoo-Harris are still with the Ministry of Education, Bill 191 is not dead.  

Saturday, 6 January 2018

Template letter for Education Minister Hunter

As you are likely aware Bill 191 has currently been tabled and waiting for second and third reading.   Bill 191 would amend the Education Act to have Ontario school boards develop a strategy on how to help students impacted by FASD.

It is important to understand why it has been tabled, though.  MPP Kiwala, as a backbencher does not have any more opportunities to have this bill read.  It requires a cabinet minister to do so.  The most likely minister is Education Minister Hunter who has informally shown support for the bill.  However, it is clear our current government is not currently willing to mandate FASD as a priority issue due to the fact all cabinet ministers removed themselves for the FASD motion vote so not to show support on behalf of the current government.

When the election writ is dropped in the next few months, all bills waiting readings will be gone and so Bill 191 will disappear.

We need to speak as one voice from all parts of the province this is not acceptable.  Even if Bill 191 doesn't impact you directly, as long as this government refuses to mandate any legislature related to FASD, they will not look at any supports in any ministry.  This Bill is our opportunity to state that the next government needs to make FASD a priority.

We know what kind of power a personal story has.  We got 26 million dollars over 4 years due to the power of the stories you shared with MPP Granville Anderson.  We need to share those stories again with Minister Hunter.

To this end, I would encourage you to use the following template and send a letter to the following MPP's.  Please complete the letter and send it to from MPP Kiwala's office

and your local MPP

Friday, 5 January 2018

Sky presents to the Ottawa FASD Group

This past Wed. night, my daughter Sky presented publicly for the first time ever to the entire Ottawa FASD Group.  They had helped sponsor her trip to the Royal Winter Fair and she shared with them her experience.  She spoke for 45 minutes, answered questions independently, demonstrated her knowledge about showing a cow, and handled herself extremely well despite some surprises involving the presentation.

To see the presentation, please go to,  I do apologize for the quality of the video, we needed to dim the lights for Sky to do this presentation.

For the entire presentation including my piece afterwards where I speak about strategies for managing anxiety and executive functioning challenges and my experience at Queen's Park on Dec. 14, please go to

Friday, 29 December 2017

Good IEP explanation

Hello all,
As promised, I finally recorded my presentation on what a good IEP looks like for a child impacted by FASD.

Please feel free to check it out at  and share with others.


Friday, 15 December 2017

Best Birthday Gift Ever! MPP Kiwala's motion and bill

I know we are all talking about what happened Thursday, Dec 14 and I think I finally have a grasp of everything I saw and heard.

There were fifteen of us in the reserved gallery where the MPP's can come and speak with us.  During the debate, we heard the motion and corresponding statement by Sophie Kiwala, MPP who spoke so graciously and eloquently and really showed the passion she has over this issue.  We were then shocked to hear so many others speak in favour of the motion.  As can be seen from the transcript, six other members spoke in favour of the bill, but more importantly, all three parties were represented from those six members.  As a result, the motion passed with unanimous assent.  This was a big test.  All the other motions of the day were contested because they are being used for political wrangling and election preparations.  However, FASD was treated different.  Certainly everyone present at the assembly wanted to see this happen.  This also included MCYS Minister Michael Coteau and Education Minister Mitzie Hunter based on the types of things they were doing on the floor while the debate was going on.
After the debate was finished at about 2:30, we had a long break because all motions needed to be debated first then the votes come.  So the vote was at 4:30.
During the break, though, Sophie joined the fifteen of us and we had some discussions about next steps and had some pictures taken.  If you go to her Facebook page, and click on the large group photo, you will see Education Minister Hunter joined us on the far left hand side.
Sophie then went on to tell us the bill FASD Bill also went through first reading.  However, it is important to note only 6% of private member bills have passed in the last 10 years in Queen's Park.  The reason is as follows:  MPP Kiwala, as a backbencher and not a Minister, only gets one day every 17 months to present motions and bills.  By the time she would get to present it for second reading, we will have an election and the bill will disappear and have to start all over again.  However, because she tabled it, any minister can pick it up now and present it.  But it is still a tight time frame.  The Assembly comes back on Feb. 20 and can start presenting bills again.  Sophie did tell us, though, she thinks an election may be called for June which means the writ is dropped in May where everything stops.  This bill must go through second and third reading between Feb 20 and May 1.  And the most likely person to do this is Education Minister Mitzie Hunter of Scarborough.  Sophie has had several conversations with her and MPP Hunter did show support, but she has a challenge as well.  Sophie did try to have the bill be done as a Education Policy/Procedural Memorandum which doesn't require assembly assent but was turned down.  The Ministry of Education is requiring it to be done as an amendment to the Education Act which is extremely ambitious.  As of right now, the second reading is not scheduled and there is no current discussion to schedule it.

So what can be done?  Because Len Whalen and I stayed right to the end for the actual vote and then by happenstance went home on the same train as Sophie, she gave us several pieces of advice on how to advocate now.

1) Be personal!  Sophie mentioned for her it was hearing the stories of three constituents at Kingston that got her started on this path for fighting for us.  She also went on to say the biggest highlight of the day for her was getting to meet Savanna and her dog Sasha from Hamilton.  Brian and Bonnie from Scarborough of FASworld has been fighting the good fight for a lot of years now and have done a great job educating their MPP, Education Minister Hunter.  I can not stress enough the impact twenty-five personal stories would have on her.

Everyone needs to be writing to MPP Hunter and specifically tell her how you know early intervention in the schools is so needed in order to make such a positive impact on those children impacted by FASD.  Be sure and send this same letter to your local MPP as well.

2) Sophie is working on getting us an advocacy day at Queen's Park.  At this day, every one of our organizations get a table where we want to be giving away a short pamphlet of information about FASD and a give-away like a pin or logo.  We will have an opportunity to make an impression on every single MPP in the assembly through this day if they are willing to come.  She is working on getting us a day around the April/May timeframe.

3) If you have influence on your local SEAC committee, encourage them to send a letter of support for the bill to Education Minister Hunter.  If she sees there is support for this bill from both parents and school boards, this will make a big impression on her.

4) Sophie also communicated how excited she was to find out that Vanessa Hrvatin is now writing for the National Post regarding FASD.  She also sees this as one more way to get the province talking about this issue.

This is the first time I have ever met Sophie and her staff face to face.  I was so impressed with Anna, her Legislative Assistant  She was such a great host and brought a lot of energy and enthusiasm to the proceedings.  It is very clear to me that Sophie is an amazing collaborator, has navigated in a very short timeframe through multiple obstacles, and has a clear strategy on how to champion our cause.  She did make it very clear she needs and wants us to continue advocating.  She has managed to open a door but it is up to us to push through it.  We do NOT have cabinet support yet.  It is clear the MCYS, the Attorney General, and the Education Minister do believe in what we are doing but there are still obstacles holding them back. 

Let me finish by saying a huge thank you to Sophie and her staff.  Sophie specifically told me she wants us to be talking to her through Anna.  She really has a heart for us and I'm pretty sure she was crying when I gave her the picture of the five of us on our first day as a family.  She truly does want to hear from us and loves the encouragement we are giving her.