2012 Alberta FASD Conference

(This post may contain affiliate links. For more information, see my disclosure policy.)

Last year, I had the privilege of attending the Alberta FASD Conference in Calgary. It was incredibly informative, interesting and exhausting. I left with some answers, new questions, strategies, and hope. There were a variety of topics covered both by the main speakers and in breakout sessions throughout the conference.

This year’s conference is being held in Edmonton and takes place October 22 & 23, 2012. The keynote speakers include Patch Adams, Michael Ungar and Samantha Nutt. In addition to the speakers and many sessions offered, there will be a community showcase and a caregiver support session. For more information or to register, you can check out their website.

I am really looking forward to this year’s conference. I hope to see some of you there!

FASD and Service Dogs – Connor and Lexi’s Story

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author: Elizabeth Baker

 

When Connor becomes over-stimulated, it tends to end in very angry outbursts.  He knows this is happening, but has no ability to stop as it progresses towards outward violence and very destructive behaviour.  To confront or even try to restrain him during an outburst can result in injury to the person attempting to control him or even to Connor himself.  Connor was diagnosed with FASD and Oppositional Defiance Disorder, among other ingredients to his final diagnosis.

When I met Connor, I had been asked to come into his therapy program and introduce him to the world of dogs.  Connor already had a yellow Labrador retriever named Lexi and although she was pretty uncontrolled, the bond between them was already evident.  Connor and I hit it off immediately as I understood his diagnosis from a personal perspective; I too have FASD.

Although Connor wasn’t aware of this fact (I had not shared this with anyone other than close family), we had a lot of fun together with me teaching him how to train his own dog.  Connor’s mother Wendy and I chatted at length and finally I suggested that we work with Lexi towards making her a service dog for Connor.  Wendy thought this was a good idea and Connor and I began working together more often to turn Lexi into the companion he needed.

Initially I worked with Lexi alone, teaching her everything she would need to know to assist Connor to the best of her ability.  Then we graduated to public access training so she could accompany Connor in public.  Finally, I worked with Connor and Lexi together to teach Connor how to handle his dog and the biggest problem I had was slowing them both down!  They were so eager to work together and get going, we all breezed through the training with no problems.  When Connor and Lexi passed their Public Access Certification Test, I also made Connor a junior trainer.  He is so very proud of his accomplishments and Lexi has become his best friend, anger management coordinator and early warning system.  She will take Connor to his room when she sees he is becoming upset and they will lay together until he calms down.

Connor’s mother Wendy says there has been no damages to their home since Lexi came into Connor’s life; before, they were constantly repairing walls and doors.  She also says that Lexi can often tell long before she can when Connor is ‘off’ and will take him to his room.  Other times, Connor will seek out Lexi for assistance and Lexi has even gone to his school to rescue him from a difficult situation.  Connor has been able to express his deep love and affection for Lexi and quite honestly you only need to look at them to understand how powerful the connection is!

 

 

 

 

 

 

Elizabeth Baker is an adult adoptee who is thriving despite, or perhaps because of, living with FASD.  She is the owner of Thames Centre Service Dogs.  Elizabeth is also an accomplished speaker, a published author, and has appeared on television on radio.  For more information about Elizabeth, service dogs, or therapy dogs, please visit Thames Centre Service Dogs.

 

 

A Secret Life

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author: Elizabeth Baker

I have lived with my secret for almost 47 years, developed a business and respect in my field, without anyone knowing.  My secret is based on a ‘don’t tell’ attitude in society that suggests having people know would diminish my standing in the community.  In other words, I would not be taken seriously.  My secret is far from being of my own doing, it was in fact done to me.  But this does not seem to lessen the stigma associated with it being made known.  I have wrestled for years whether it was wise to make my secret public knowledge and the decision was still not easily arrived at.  I involved my family in the decision, knowing it would affect their lives as well, but they have offered me nothing but support.  I know I could lose acquaintances and perhaps even some friends based upon this secret becoming public knowledge and I am prepared to accept this loss.

I don’t look any different, in fact I am perceived as attractive, intelligent and very professional.  I am considered by some as ‘disabled’, but consider myself simply ‘differently-abled’.  Yes, I am challenged on a daily basis, however I have learned coping strategies to manage the variety of challenges.  My memory is affected, but I have taught myself simple ‘cheats’ or I can say I had a momentary lapse and laugh it off.   My health issues can be disguised as ‘getting older’ or having pulled a muscle during a recent work-out.  No one ever looks closely enough to notice subtle differences, quirks or behaviours I might have.  The societal attitude of ‘not too close’ most definitely works in my favour.

I digested my diagnosis long ago and have gone through the prescribed stages of grief, without it progressing my understanding whatsoever.  I have spent years being enraged but it has not assisted in my daily living one bit.    Society is not prepared to handle my diagnosis, let alone comprehend all the symptomology linked with it.  Behaviours associated with it are minimally understood and generally undervalued, seen simply as excuses when in reality they are far from it.  Those of us in the world with this diagnosis genuinely wish for better understanding.  We are given morbid prognoses, leaning towards institutionalization at some point in our lives, whether from drug addiction, psychiatric illness or legal misdeeds.  We are subject to significantly higher incidence of addiction, suicide and violence with little or no hope given in comfort.  Statistics are spewed out in what seem random convulsions, with no personal link to ourselves, and we are left to wonder ‘so whose projected outcome should I follow today?’  Our futures are bleak, so ‘they’ say and again I wonder who ‘they’ are and why have they decided this for me?  What about what I want?  I want to say perhaps I’ll be a Doctor or a Lawyer, but I know the statistics, so I decide it’s best not to try.  I could be a famous musician, but I am prone to addiction, so perhaps this is not a good choice.  Maybe a rocket scientist, but I have multiple learning disabilities.

I have come from a difficult background and have been in the care of the Children’s Aid Society.  I have no medical history to my growing file on my physician’s desk and am met with the response of ‘Oh, I see’ when asked.  My parents who adopted their pretty little girl had been given very little warning of the difficulties they would face.  Parents are given the diagnosis, symptoms and statistics, leaving them wondering what on earth they have gotten themselves into.  The worst case scenario is always in the foreground of every discussion and the black hole of diagnosis just keeps getting deeper.  Parents who do adopt must be very special indeed and most certainly require extreme patience, patience and more patience!  As adoptees, we are a challenge unlike most others that when adoption at a later age is included into the mix, it is made so much more difficult.  Then we have baggage that can range from mild to extreme.  This baggage could include neglect, abuse, witnessing violence or even abandonment.  With our diagnosis, emotions are difficult enough, but then to add these lovely additions to the still growing list, it’s a wonder we survive at all.  Some of us don’t.

I sometimes have great difficulty in organizing my thoughts, let alone my sock drawer.  But when one appears ‘normal’, others expect you to be and this places more pressure on an already delicate anxiety level.  I can snap an unwarranted retort just as well as the next person on a bad day, but I back it up with additional resentment and confusion.  Often I know I am being unreasonable, but simply can’t stop the anger in the moment.  I fight with emotional turmoil every day and I am full of insecurity and a fear of rejection.  I am 47 years old and still fear my parents giving up on me and yet, they are still here, supporting and loving me.  I have decided my partner in life is a saint, though I’m quite sure the church won’t accept him.  His miraculous deed is simply living with me day after day, yet to me it is miraculous.  I love my children and know they love me too.  There is nothing they could ever do that would cause me to stop loving them, I am fiercely sure of this.

So what is the end result of my secret, you might ask and what have I done with it?  How has it affected who I am today?

My name is Elizabeth Baker and I am the owner of Thames Centre Service Dogs, a training facility for service dogs and special needs children.  I am also a recognized authority in training procedures and protocols, a consultant with many organizations, published author and public speaker.

And by the way, I also have Fetal Alcohol Spectrum Disorder.

 Elizabeth Baker is an adult adoptee who is thriving despite, or perhaps because of, living with FASD.  She is the owner of Thames Centre Service Dogs.  Elizabeth is also an accomplished speaker, a published author, and has appeared on television on radio.  For more information about Elizabeth, service dogs, or therapy dogs, please visit Thames Centre Service Dogs.

 

FASD Conference Wrap-Up Day One

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I returned last night from Calgary, Alberta, where a friend and I had attended the FASD Conference.  I was hoping to be able to provide an overview of the information I learned, but don’t know how I could possibly do it justice!  It was an amazing conference with so much information jam packed into two days.  As I cannot hope to pass along all that I learned, I will try to provide you in the coming days with as many resources as I can, whether it be book recommendations, websites, or community services.

What most struck me about what I heard at the conference was how much I can apply most of the information to all of my kids including the neuro-typical ones.  If I had to choose a favourite speaker, it would be Dr. Martin Brokenleg.  His gift for storytelling is unprecedented and he shares from the heart.  When I first saw in the program that he was going to be speaking for two and a half hours, I was worried about boredom, but after he began speaking, I could have listened for two and a half days!  Dr. Brokenleg spoke about his Circle of Courage model.  It was fascinating, encouraging, and inspiring.  You can read more here or in his book entitled, “Reclaiming Youth at Risk: Our Hope for the Future”.  I encourage everyone to take the time to do so, as what I learned from Dr. Brokenleg has changed the way I think about parenting when it comes to all of my kids and his work is not specific to kids with FASD.

The session I attended entitled “Sensorimotor Deficits in FASD – Functional Implications, Therapeutic Interventions” was the least informative for me of the various sessions mostly because I am already applying sensory interventions with my kids and understand sensory issues quite well, however, I feel that the information is invaluable for those newer along this journey.  For me, there was no new information in the session and it was geared more towards professionals working with kids with FASD and their caregivers.  However, it was encouraging for me to hear that I am on the right track and that the time I spend making a new sensory bin every week is worth every second!

Here are some sensory related resources spoken of during the presentation:

Alert Program (How Does Your Engine Run?)
Flaghouse (they spoke especially highly of the gel lap pads available here)
Tools for Kids
Healthcare Solutions
The Incredible Years Program

Some of the key points were related to the importance of attuned parenting, putting together a sensory kit or using sensory centres or bins, teaching self-regulation (such as using the Alert Program), and the impact of the environment and genetics on brain architecture.

The session “Functional Behaviour Assessment and Positive Behaviour Support” taught by Karmen Krahn Schulties was extremely interesting, but hard to follow due to there being about three times the amount of information than there was available time!  I really would have liked to have been able to hear the information expanded upon and for there to have been time for questions, but the presenter did the best she could with the enormous amount of material and the short time allotted.  I liked the optimism that Karmen displayed and her positive behaviour support approach.  An example of something she mentioned that stuck with me is in re-terming “stealing” as “unexplained possession”.  When it comes to kids with FASD, “unexplained possession” tends to be a common issue, but in re-terming it, the child doesn’t have to feel like they are “bad”.  She also told a rather shocking story about just how intense the need for sensory stimulation can be, which illustrated to me that it is important to get to the root or cause of a behaviour and not just make assumptions and also how important sensory work is.

Other points I took down during this presentation:

-children with FASD require repetition, specialized teaching techniques and more positive reinforcement in less distracting environments
-environmental adaptations need to be done alongside coping and tolerance training
-positive behaviour support is any plan that is 75% positive reinforcement and 25% crisis management
-there were a lot of other points, but not developed enough for me to be able to understand well enough to have confidence in passing along!

In the evening of the first day, I attended a demonstration of how a support group for parents of FASD works.  The group we watched was a support group for men.  It was obvious just how successful the group has been by witnessing their level of comfort and vulnerability with each other.  For myself personally, watching and listening as an outsider felt voyeuristic and uncomfortable, but I think the intent was to demonstrate a model of how an effective support group works.

Take It From Me: Have An Alcohol-Free Pregnancy

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author: Linda

Every year, 3000 children in Canada are born with Fetal Alcohol Spectrum Disorder (FASD).  FASD affects over 300,000 Canadians at an estimated cost of $2 million dollars per person over the lifetime.

FASD is an umbrella term used to describe the range of disabilities caused ONLY by the use of alcohol during a pregnancy. The most serious disability is brain damage.  My son, adopted at birth, was diagnosed with FASD at age six, and yes, he’s brain damaged.
FASD is irreversible. It’s a lifelong disability. There is no cure, but it IS preventable.
That’s the message a group of parents and professionals, including myself, were spreading (this morning) to honour international FASD Awareness day. Around the world, people like us were doing the same, as we’ll do every year on September 9, the ninth day of the ninth month.
Dozens of us assembled in the Great Hall of Toronto’s Union Station to greet commuters on their way to work. Looking a little silly with our t-shirts stuffed with balloons to emulate pregnant women, we passed out brochures, rang bells and gave speeches to reach the hordes of incoming commuters rushing through the train station.
At 9:09, we stood in silence for a pregnant pause. During my silence, I could feel tears well up, thinking about my son and the hardships his disability have brought both him and our family. Our son’s brain damage affects his ability to learn, concentrate, remember things, interact socially, and understand cause and effect. He has a sweet and kind spirit, but dropped out of school and is unable to hold a job. At 24, we’re still helping him find his place in the world.
This is not what you  want this for your child. Or anyone’s child. Trust me.
There is no known safe level of alcohol use during pregnancy, and there is NO safe time to drink. Many people think that it’s okay to have a drink or two after a few months when the baby’s brain has stopped growing. Not true. A baby’s brain is developing throughout pregnancy, so the safest choice is no alcohol at all.
One kind of alcohol is no different from another. All alcohol harms, whether it’s beer, coolers, wine or spirits.
Many women understandably worry about the few drinks they may have had before they knew they were pregnant. Having a small amount of alcohol before you knew is not likely to harm your baby, but it’s essential to stop drinking as soon as you know.
My son’s birthmother was a binge drinker. We didn’t know, though, until he was diagnosed with FASD and we went back to her with the diagnosis. She then admitted her drinking habits. This is not an uncommon story. Few people ever heard of FASD when my son was born 24 years ago, and most people, including doctors, didn’t have a clue how dangerous it was to drink during pregnancy.
But now we DO KNOW. The message is clear. Don’t drink while pregnant.
So pass on this recipe for a  tasty ‘mocktail’ to any pregnant woman you might know:
                                   Backyard Caesar Mocktail
  1. Rim a tall glass with fresh lime and celery salt
  2. Fill the glas with ice and add 2 tp spicy BBQ sauce, ¼ oz. lime juice and 4 oz. Clamato.
  3. Stir to mix. Garnish with a beef pepperette

For more non-alcoholic recipes:  www.lcbo.com/socialresponsibility/mocktails.shtml

    To learn more about FASD, ask questions or share concerns, call:
    Motherisk 1-877-FAS-INFO (I-877-327-4636
    Your healthcare provider
    Your local health unit
    Telehealth Ontario 1-866-797-0000
    For more information:
    www.alcoholfreepregnancy.ca
    I am a writer and editor, wife and mother, living in a charming, carless community on an island off the “coast” of Toronto, called Toronto Island. I was born in Detroit, went to school in Washington, D.C., and came to Canada during the War in Vietnam.       
    I am a gardener, birdwatcher and baker, walked a Catholic pilgrimage route in Spain, started playing the viola in my 50s, took my family to Guyana on a humanitarian aid project, ocean kayaked off the coast of British Columbia and have exhibited my hand-painted black-and- white photographs in a local gallery. I love disco, Motown, roses, and a really great hamburger. I wish I could get more sleep.
    My life took a major turn when my adopted-at-birth son was diagnosed with Fetal Alcohol Syndrome (FAS) at the age of six. According to statistics at the time, his diagnosis was a sentence for failure: he’d drop out of school; he’d be incapable of holding a job; he’d live on welfare, on the street or worse. The brain damage, they said, was irreversible.
    With all the love, devotion, hope and medical knowledge I could accumulate, I set out to change the predicted course of events, illustrating the expectations that those of us raised on the activism of the 1960s brought to bear on our lives and families. Michael is now 24 and the struggle to help him find his place in the world continues.
    I have recently written a memoir. In the book, I bring together the disparate threads of my life, weaving a story about raising our two adopted children, keeping my marriage intact and living with a modicum of joy while struggling to beat my son’s odds. Though my story is at once achingly unique, I believe the themes are universal to every family grappling with life, love and the struggle to accept the reality of what is. 
    I have written for major Canadian periodicals and won a National Magazine Award. My book, The Essential Toronto Island Guidewas published in 2008.
    I continued to work in both print, tv and film after my son’s diagnosis, but also became part of an extensive network of professionals, families, organizations and online forums interested in FAS, children with special needs including Asperger’s Syndrome and ADD, and adoption. Excerpts from my manuscript were published in The Globe and Mail, and Canadian Living magazine. I recently met with the Lieutenant Governor of Ontario to advocate for improved social service for families with FAS children.
    I live with my two children and husband, a tv producer with the Canadian Broadcasting Corporation, CBC.