Interpreting FASD diagnostic practices and treatments

On December 14, 2015, the Canadian Medical Association Journal published an article called "Fetal Alcohol Spectrum Disorder: A guideline for diagnosis across the lifespan" which was a revision by the same authors to an earlier article published in 2005.  While these guidelines are not necessarily required to be followed by medical practitioners, they are the most widely used and accepted.  These Canadian guidelines are a little different from other countries primarily because the medical community isn’t currently agreeing on the meaning of their vocabulary.

These new guidelines state that if a person has confirmation that the mother consumed alcohol during the pregnancy, and shows three impairments in the areas of brain development, motor skills or movement, cognition or general thinking, language, academics or school grades, memory, attention, executive functioning which is basically planning and organization skills, mental health and social ability, they can be diagnosed with FASD.  If the child shows from baby pictures they had narrow eyes, a flat ridge below their nose and a thin upper lip, they are diagnosed with FASD with sentinel features.  If they are missing one of those three physical features, then it is without sentinel features.  The new guidelines eliminated pFAS, FAS and ARND as diagnosis terms and it is simply called FASD now.  It also added mental health as a new impairment and eliminated growth rate.  It establishes that a psychologist, speech-language pathologist, and occupational therapist assessments are needed to determine if three of the ten domains exist.  It then requires a medical practitioner familiar with FASD characteristics to make the diagnosis.  It strongly encourages using the multi-disciplinary model to properly diagnosis and support the person impacted by FASD.

You should also be aware of practices to avoid.  Because these are only guidelines, any medical practitioner can diagnose. Within our current medical culture, there is controversy and disagreement as to how this condition should be diagnosed.  The DSM-5 which establishes the guidelines for psychologists also give them the ability to diagnose neurobehavioral disorder associated with prenatal alcohol exposure under which FASD does fall.  However, a recent study published by the same CMA Journal, shows the DSM-5 guidelines only captures about half of the FASD diagnoses these new guidelines diagnose. http://cmajopen.ca/content/5/1/E178.full  The importance of using a multi-disciplinary approach to diagnose is incredibly important.  Because multidisciplinary teams can be rare depending on where you are located, you may need to become your own team.  This situation existed for us.  When we suspected our children had FASD, we got the diagnosis and support as soon as possible.  First, we went to a pediatrician who understands what FASD is.  Next, we got any type of documentation that stated there was a strong possibility that the mother may have drank during the pregnancy.  In our case, it was a CAS social worker who gave us a letter making that statement and who gave us frontal head shot photos from age six months to 6 years.  At age 3-4, we got a speech-language assessment with occupational therapy recommended.  At age 4-5, we got the occupational therapy assessment with a sensory profile as well.  With this, we started working with the school and got a special education plan and keep copies of all their documentation.  In grade 3, we got a neuro psychological assessment.  A psychological educational assessment will also work.  With all this documentation, we went to our pediatrician and ask for the referral to an appropriate medical practitioner. 

While there isn’t any realistic cure for FASD right now, early intervention is important.  A common story today is people impacted by FASD getting diagnosed when things get bad.  This may include attempting suicide, getting arrested, employment challenges, gang participation or being in abusive relationships.  These are common outcomes when the individuals aren’t being provided the necessary supports with established routines.  When you have early intervention, you are no longer guessing why these individuals are behaving in the way they are.  You can start teaching coping strategies, discovering triggers, implementing supports, and establish relationships at a time when the child will be receptive to receiving them.  If you are trying to establish these things with an adult, you are now dealing with low self-esteem, distrust, depression and shame at the same time.

One exciting new development in this area was recently announced by UBC genetic researchers.  They have discovered that people impacted by FASD have DNA with unusual methylation. Basically, their DNA doesn’t work properly.  However, there are several conditions that can have this unusual type of DNA so they can’t use it yet for early detection.  Other researchers have been able to identify certain DNA patterns that normally means a likelihood to develop certain types of cancer.  It is the hope they will be able to do the same for FASD.  Research is also showing healthy living makes a huge impact as well.  Eating right, sleeping well, getting lots of exercise and having the right vitamins such as iron will enable the person to manage the other aspects of their lives much more effectively.

As to treatment, the objective is to manage the condition.  Because the condition is a spectrum disorder, each individual need supports particular to them.  While medication seems to have widely varying effects, proper counseling should certainly be used.  Cognitive Behaviour Therapy should be avoided, though, because it only increase shame.  Self-awareness is a powerful tool for the individual because most of the time they are aware of how they are coping.  They just can’t do anything about it on their own.  Knowing what they are good at, being able to advocate for themselves, understanding what their triggers are and how to cope with them, discovering what their best methods of learning are and realizing and accepting support in their areas of need are all necessary components for success.  They may need people like a financial trustee, a system navigator, a house cleaner, an understanding employer, a supportive church and a close group of friends watching out for them.  While it is currently rare to meet an adult impacted by FASD to have received early intervention and current supports, when you do meet one, you will see them living interdependent and fulfilling lives. 

You may hear people talk about potential treatments like neurogenesis treatments and neuroplasticity.  I would strongly caution you about these treatments.  The basis of these treatments is to take the brain back to an earlier state.  It works for stroke victims because they had a properly working brain earlier.  However, with FASD, there was never an earlier properly working brain. 

FASD is not to be feared.  I see daily that within my family and other local families that individuals impacted by FASD can be happy, successful and interdependent.  With awareness, advocacy, education, support, healthy living and faith, there is hope.

Using Constant Reflection to find success

One of the big questions around FASD is what can be done?  We know there isn’t any cure, there is disagreement about treatments and there is controversy about medication.  However, if we ask what is our biggest concern toward our children impacted by FASD, we tend to say coping.  In the research I have heard recently, I keep hearing what doesn’t work, but rarely hear what does work.  I have seen in numerous cases what does work is constant reflection on strategy effectiveness.

In laymen’s terms, it is basically using science methods to understand behaviour.  If we accept the premise that all behaviour is communication, then we use experimentation and constant reflection to determine what that communication is.  If I ask my son to turn the TV off and he yells at me, I document the event, time, place, circumstances, and language.  If this event keeps happening every time I ask, I will change something and see if it is any more effective.  If I run out of alternatives, then I am going to ask someone else such as a counselor for suggestions. 

Interestingly, this is not a new strategy for special education.  Back in 1994, when I was writing my Master’s thesis, I referred to the fact the most effective reading programs were the ones that continually used the scientific method to determine effectiveness.  My family also consistently reflect on our lives.  Any time we attempt something new, we will evaluate how well we did.  If I make cookies and they taste awful, I will go back to the recipe and try and figure out what I did wrong.  If I put an IKEA table together and have parts left over, I will go back and figure out why.  I am constantly thinking about the most efficient way to drive from one place to another.  When I break down these behaviours into each part, then experiment with different ways to discover the most efficient, I will eventually find successes.  I believe this is why my daughter Cassie loves the cooking shows because every chef I have seen is constantly using reflection to create the best possible dish.  Cassie, at some level, recognizes the familiarity of it.  Whenever Sky or Jacob can verbalize why they acted the way they did, they are using reflection to discover this.

However, the key is identifying the variables responsible through experimentation.  Rarely can our children verbally communicate these variables.  We know when Sky is short-tempered, Cassie is crying and Jacob is yelling, something is wrong.  We will start tracking their day to find out what has them out of sorts.  We know anxiety leads to bad decision making, too much talking overwhelms them, rapid changes make them confused, and boredom leads to impulsivity.  We know all of this because we have consistently used reflection to detect the pattern.  And through experimentation, we have discovered strategies that work for them in those situations.  It is also important to note that these five concepts will work through the lifespan, but the way we apply them changes with age or with particular situations.  It is also important to recognize a strategy may work once but then fail to work later due to a slight change in the situation.  Therefore, it is constant reflection.

1  1)   Discrete Trial Teaching is basically simplifying it.  Focus on one thing, accomplish it, then move onto the next thing.  My children don’t understand time so they just keep going step by step until it is done.

2  2) Naturalistic Teaching or Discovery Learning.  I love this one.  Basically, look at their strengths and use them as much as possible.  My son is great with his iPad so we use loads of apps to help him manage his emotions, watch videos, voice text his writing, use pictures to describe and listen to stories.

3  3)      Pivotal Response Therapy takes naturalistic learning a step further.  We deliberately tap into strengths to manage one specific identified behaviour from using reflection.  My daughter Sky really struggles with speaking to strangers.  But if an unknown fair judge asks her about her cow, she can be very articulate.

4  4)      Token Economy or Bribery – Yes, it works if you can find the right motivator.  If I tell Sky or Jacob I will let them have a favorite snack if they do what I ask, they will do it.

5  5)       Contingent Observation or Good modeling- We actively seek and encourage relationships with peers who provide good modeling for them.  And we are discovering if these friends are consistent in their relationship with our children, everyone tends to do well.

There are other strategies obviously, some of which will work and others that clearly do not.  For us, though, these five have proven to be very effective.  The key, though, is not to give up.  My old basketball coach used to say the only way we lose is if we quit.  Otherwise, we just didn’t have enough time.  So just don’t quit and you will find the solution.  You may use twenty different strategies before finally finding the one that works for your child.  But there is, most certainly, at least one that will work.

Remembering those who cannot speak

Spur Ottawa recently published an article about one of my books from a couple years ago.  While I speak for those impacted by disabilities who can't speak for themselves, I also speak for those who no longer have a voice.  http://www.spurottawa.com/helping-children-remember/

One of my other passions is the stories of those who served in WWI.  Two years ago, I wrote my flagship book about one such veteran named Henry Barrie.  As we remember our veterans specifically tomorrow and every time we stand for the national anthem, Henry is the one I remember.

If you can't attend a memorial service tomorrow, I invite you to go to http://henrybarrie.weebly.com/ to get a sense of this extraordinary human being.

Young ladies impacted by FASD shine

My daughter, Cassie, recently got mentioned in the St. Emily November newsletter.  This school supported a fundraiser for the Ruiter family who recently lost their farm and animals in a devastating fire.  The school participated in a bake sale to help raise funds and Cassie donated 8 dozen cookies to the effort.  https://docs.google.com/document/d/1_O9bCJ4BVCYxWY4MPtMZGO4RP8MGXrcJgow4GPcgU28/edit

Support to our Community

St. Emily School would like to thank its amazing staff for its contribution to the Ruiters Fundraiser with 30 dozen baked goods for the bake sale.  As we know, the Ruiters recently had a devastating fire at their farm and the St Emily community has responded to the call in a big way.  The St. Emily school community would also like to make a special mention of Cassie More who contributed 8 dozen cookies.  Cassie is a young lady impacted by FASD and currently has a Co-op placement at C'est Tout Bakery in Smiths Falls and a member of the Grenville 4H Baking Club.  When she heard the Ruiter family were having this bake sale, she wanted to help them and got in touch with St. Emily.  St. Emily School was thrilled to pass her cookies along for her.

My other daughter, Skylar, was also in the Royal Winter Fair this weekend competing against the top 100 competitors in the province.  In the first half of the competition, Sky did her best showing of the year maintaining composure and maturity despite an unexpected development.  In the second half of the competition, Sky finished second in the semifinals and ended up being one of the 18 finalists.  To accomplish this so early in her career is absolutely mind-boggling.  Her local club also communicated that Sky set the alltime record for them in fundraising.  Thank you to all for making this dream possible.

Daughter impacted by FASD wins invite to Provincial Fair

This past weekend, my daughter showed unbelievable character and resolve and finally achieved her goal of showing at the Royal Winter Fair in Toronto Nov.4-7.  After eight years of practice, development and determination, she finished second at the local fair, Grand Champion at the district fair and now fourth at the regional fair in Metcalfe.  While at the Metcalfe fair, she was surprised with an interview by the judge and misunderstood his question.  The judge proceeded to announce to the crowd he was placing her second to last because she didn't know anything about her cow as she was exiting the arena.  When she got back to the barn for the intermission, the cow beside her starting choking so she pulled it tongue to the side and removed the obstruction.  However, the cow then bit her finger causing it to bleed profusely.  She rushed to first aid, got it wrapped up, and then did her second showing.  She pulled it together so well the judge said the difference between the first place cow and hers in fourth place was very minimal.  Because of her resolve and determination, the Grenville 4H Beef Club extended an invitation to her to show at the Granddaddy of them all, the Royal Winter Fair where she will compete against the best across the province.  The show will be live streamed and the live stream
address will be posted here once it is live.

However, we now have to figure out how to get her cow, her mother and her transported to Toronto and stay overnight for three days in a month.  We are being told it will cost about $1000 to accomplish this as she is not able to navigate this on her own unlike the other participants.  The Grenville 4H Beef Club does post a sponsor board at the front gate for the 300,000+ attendees to see.  If you would like to bring some awareness to the general public from all over the province about your favorite organization, please consider making any size donation to the Go Fund Me page that Sky has created.  Help us help her realize this dream.


https://www.gofundme.com/showing-at-the-royal-toronto-fair

The 4H Pledge

                            I pledge

My head to clearer thinking

My heart to greater loyalty

My hands to larger service

And my health to better living

For my club

My community

My country

And my world 

Young Lady impacted by FASD in her element

My daughter and I spent this beautiful Saturday afternoon playing with her horses.  We created a video that has been added to her portfolio and thought you might enjoy seeing it.

Sky and Clipper doing Team Building

MCYS Initiative #1 One-Stop Hubs: What Does It Mean?

If you haven't seen the latest MCYS announcement regarding FASD, be sure and go to http://www.children.gov.on.ca/htdocs/English/specialneeds/fasd/letter-2017-09-08.aspx.  However, I have also been making weekly phone calls to Jacqueline Hamelin, MPP Kiwala's Executive Assistant to get clarification on how they are rolling out the 6 step, 26 million initiative announced in the last budget and received a reply yesterday.   https://drive.google.com/file/d/0B4G_PCr5fBe9b2RpNXNGZ19yOGpfXy1MaTVHeHZ4QUJVb3k4/view?usp=sharing

The first factor that stands out is the MCYS is separating the six initiatives as independent of each other.  They have also prioritized the six initiatives with the one stop internet hubs as number one, establishment of parent support groups as number two and research projects as number three.  The remaining three initiatives are being rolled out later including the Key Worker.  

The second factor is the fact they are accepting letters of expressions as the first step.  This means any organization/ NOT INDIVIDUALS can write a one page letter stating their desire to be considered for that particular initiative.  They will then send an organization the application form where the organization will state their objectives and how they will be implementing them.  

This has huge impact on how our FASD network and groups need to proceed.  The LLG FASD Work Group is currently establishing their communication policy and putting the final touches on their Internet hub.  We will then be taking that information to a third party webmaster and encouraging them to write the letter of expression using the information the LLG FASD Workgroup gives them.  

As a former teacher of high school media studies, I would like to pass along my vision of what this one stop hub should look like.  The website needs to have a Facebook page and Twitter account associated with it.  The website will have a home page, a mission page, an events page focusing on conferences and support group meetings, a community partners page including how to contact the Key Worker and community services, a resource page, a sharing page where people impacted by FASD can submit blogs, stories or videos and a contact page.  This website needs to be designed to read which device is opening the site because it will look different on a laptop versus tablet versus phone.  It is more of a static site to provide information which is why the Facebook and Twitter is important.  They allow interaction and will reach a larger public audience than a static website.  The best part of Facebook is once the account is setup, parent support groups or any other organization can live stream through their page any guest speaker or presentation and save it onto the site for future usage.  So the information isn't being presented to 50 people, it is going to 500 people.  Add in twitter feeds during the presentation and now you are getting 1000 people who will watch that presentation.  And you can download that Facebook link into a movie editor and upload it into a Youtube video to get an even larger audience.  To accomplish this, you need a smartphone or tablet with a $50 tripod stand to hold it and start recording.  Any professional webmaster can set all of this up in an hour.  If I was to ranked the current FASD websites right now, I really like the Halton FASD one.  The Niagara FASD Coalition and Chatham FASD sites also have the required elements but are in need of additional resources and funding.

What organizations need to be aware of, though, anyone can do this.  Any individual with the technical know-how can easily create a one-stop hub.  You register with the CRA as a publishing company, set up your ISBN account, partner up with a person in the FASD community and away you go.  And they will be controlling the message with no supervision as to what information is being disseminated.  

Our FASD community needs to be proactive like the LLG FASD WorkGroup and be involved in the application process for these one stop hubs.  Find a local webmaster organization and get them to write that letter of expression on your behalf.  I would include in the terms of agreement that they have to hire a local adult directly impacted by FASD as a consultant in site development and maintenance with input from the local FASD network.

My next blog will be on initiative number two - augmenting and supporting parent support groups.

MCYS announcement Parent Support Groups and Research

If you haven't seen the latest MCYS announcement regarding FASD, be sure and go to http://www.children.gov.on.ca/htdocs/English/specialneeds/fasd/letter-2017-09-08.aspx.  However, I have also been making weekly phone calls to Jacqueline Hamelin, MPP Kiwala's Executive Assistant to get clarification on how they are rolling out the 6 step, 26 million initiative announced in the last budget and received a reply yesterday.   https://drive.google.com/file/d/0B4G_PCr5fBe9b2RpNXNGZ19yOGpfXy1MaTVHeHZ4QUJVb3k4/view?usp=sharing

In my last post, we looked at the One-Stop Hub initiative and its impact.  In this post, we will look at initiative number two and number three: a program to augment the number of family/caregiver support networks and assist those already in existence; and a FASD research fund to learn more about FASD, and how to prevent it.

Again, the announcement states organizations will be invited to submit an expression of interest to request funding to develop a program which augments family/caregiver support networks and assist those in existence.  It is interesting they have separated this initiative from all others.  The Key Worker which we will look at later is not part of this funding.  Websites are not part of this funding.  Research is not part of this funding.  This money is devoted exclusively to parent support networks.  Augment means add or increase.  So they are likely looking for organizations which can receive provincial monies to create new parent support groups within this new program and assist those already in existence.  The LLG FASD Work Group would love to start a parent support group but currently needs funding for a location, child care and possibly guest speakers.  This announcement is extremely exciting and will allow us to get started.  However, it also means if there is a pocket of people anywhere in the province who want to start a FASD Parent Support Group, you only need to approach one of these organizations receiving this funding and get it started.  
It is due to our involvement in our local FASD network that we have learned about FASD and how we and our children can manage it.  I have said before and will state again it is our local pioneers from the last generation of people impacted by FASD that we know anything at all.  They had no support but still wanted to pass their experiences along to benefit us.  We are in a much better place today on their backs.  We need to continue building on this momentum and that leads to research.
I consider the third initiative of research funding to directly impact us as well.  While we will not be the organization applying for this funding, we need to be encouraging those individuals to do so.  In turn, they will need people impacted by FASD to be available for research purposes.  In an earlier post, I stated my wife and I are working with the Strongest Families Advisory Committee for a research project.  It is a very minor commitment of participating in a couple Skype sessions, and then give feedback on a website.  However, it will have a large impact on families impacted by FASD.  Seek out those opportunities and don't be afraid to give your opinion.  If you are like us, it is hard to believe that we are experts, but we truly are.  It doesn't take long to have a conversation with someone not impacted by FASD to realize we really do have a lot to share.
In the last post, we will look at the fourth initiative of the Key Worker.

MCYS announcement - Key Worker

If you haven't seen the latest MCYS announcement regarding FASD, be sure and go to http://www.children.gov.on.ca/htdocs/English/specialneeds/fasd/letter-2017-09-08.aspx.  However, I have also been making weekly phone calls to Jacqueline Hamelin, MPP Kiwala's Executive Assistant to get clarification on how they are rolling out the 6 step, 26 million initiative announced in the last budget and received a reply yesterday.   https://drive.google.com/file/d/0B4G_PCr5fBe9b2RpNXNGZ19yOGpfXy1MaTVHeHZ4QUJVb3k4/view?usp=sharing

Within the reply, MPP Kiwala's office also answered my direct inquiry of the Worker proposal.  It is not clear at this point if they will be using the same method of inviting expressions of interest from organizations to provide a Worker who focuses on system navigation for those directly impacted by FASD under the age of 18.  They have targeted 50 regions who will receive one Worker each.  I also know they have also completed their fifth initiative of establishing a consultation group for planning and prioritization.  It is this consultation group who are establishing the role of the worker with an emphasis on system navigation with current service providers.  It also appears this group will be instrumental in determining the recruitment and allocation of these workers.  The LLG FASD Work Group is planning on submitting a proposal on how that Worker will be allocated and recruited in our local area.  It is important to note MCYS is only providing the worker for children and youth.  Clearly, this is an area that will need to change going forward.  FASD is a permanent, lifetime disability and so the individual directly impacted by FASD needs lifetime support.
Finally, I also know MPP Kiwala is not finished.  She has been given the opportunity to present a motion to the floor of Queen's Park.  As a parliamentary assistant within the Ministry of Children and Youth Services, this is highly unusual and a reflection of how effective she has become as our advocate.  Her motion is currently under discussion within the Premier's office and if she receives assent, it is highly likely the motion will pass.  She recognizes FASD is beyond the Ministry of Children and Youth Services and so she is endeavoring to make it a provincial wide issue in other relevant ministries.  Stay tuned to when the motion will be read.  She has asked that once we get that date, we turn out en masse at the Queen's Park gallery to show our support.
I was initially concerned on how quickly the 26 million for four years would get used up, but it appears MCYS is doing a good job ensuring all initiatives will have the necessary funding to get started.  Obviously, funding will need to continue to increase but at least it gives us a start.

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.  https://ca.linkedin.com/in/barry-stanley-2-fasd-59479bb2  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. http://www.fasdontario.ca/cms/service-areas/diagnostic/diagnostic-services/

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 skiwala.mpp.co@liberal.ola.org 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.

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 Karen.Turner@iwk.nshealth.ca and ask to be signed up for the Strongest Families monthly newsletter.  You will not be disappointed.

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

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

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.

Sincerely,

LLG FASD WorkGroup

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 Superintendent of Special 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 Special Education Superintendent make this statement is a testimony to Dr. Hawes and the Catholic District School Board of Eastern Ontario.  She is to be commended for taking the lead on this and establishing the model others should be following.

Robotics??

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  http://www.orc.ieeeottawa.ca/en/.  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 8^th 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.

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

Media

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.

Sincerely,

Erin Bertrand, Chair FASO Working Group Lanark, Leeds & Grenville (613)345-1290  ebertrand@developmentalservices.com

Managing FASD - http://www.adopt4life.com/blog/ 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.