Today’s tip is a great one, isn’t it? It can be easy to focus on the negative and forget the small or big successes that do happen.
What does the Looking After Each Other project have to say?
The public understands that people with FASD have challenges. A continual focus on this creates a belief that these challenges are the main attributes of people with FASD.
I get this. We want people to hear us, how difficult it is to parent a child with FASD, but what will that accomplish? If we want to stop the stigma. I can’t really speak for the maiden, or the FASD community, I am only one mom who writes about her experience, and I’m no means an expert, but I hear we have to share the good stories. Before our 99 day journey is done, we will be sharing some positive stories.
According to Myles, interviewed for an article in the Terrace Standard : he doesn’t spend time focusing on the negatives, he focuses on his strengths and says society needs to think this way too. What he wants people to know is what they can do to understand a person with FASD.
Instead of seeing their behaviours as bad, instead ask ‘where does this behaviour come from?’
FASD is a brain injury, similar to what people sometimes get in a car accident and the problem is it’s an invisible disability. If someone is in a wheelchair, people would likely hold the door open for them; if you see someone wearing a hearing aid, you will speak louder.
In other words, when people see someone with a disability, they will accommodate that person but when they don’t see a disability, they think it’s the person’s behaviour that’s at fault.
It’s best to ask yourself how you can have more patience or understanding with the person or ask that person what works for him or her; how can we change to support the individual.
Myles was interviewed about growing up with FASD for CBC Radio White Coat Black Art show in 2019: You’re weird, you’re different and nobody wants to be your friend’: the loneliness of FASD
“I use the acronym FASD not just as fetal alcohol spectrum disorder, but as a way that I choose to live my life. And that is: F is for Faith; A is for ability; S is for strength; and D is for determination,” he said.
“And I feel if you can live your life through that, you’ll find where you fit in this world. You’ll find your purpose, because everybody has a purpose.”
It’s a great article with others interviewed: Laurie Whyte, right, and her son Richie and Dr. Ana Hanlon-Dearman, medical director at the Manitoba FASD centre and network in Winnipeg.
So let’s accommodate and focus on the positive. Accept what is, plan and move on.
Speaking of moving on, today’s tip seems to be a great time to introduce a movement. In case you haven’t heard, it’s called Red Shoes Rock.
In 2018, we marked its 5th Anniversary
The main goal of Red Shoes Rock is to discover ways to have fun while building awareness of Fetal Alcohol Spectrum Disorder leading up to FASDay, celebrated on September 9th (founded by Bonnie Buxton, Brian Philcox and Teresa Kellerman in 1999).
According to the Real Families Real Mindz website:
R.J. Formanek began the red shoes movement in 2013 to bring visibility to the invisible lifetime disability of fetal alcohol spectrum disorder.
In 2014 Better Endings New Beginnings (Jodee Kulp) and LiveAbilities Good Fruit Camp Productions (Sam Guerrido) joined RJ to help build awareness leading up to International FASDay on September 9 – we gave it a go for 30 days having fun gaining almost 1000 followers. We continued it in 2015 for 60 days.
In 2016 we joined forces with the Tiny Titan Team and Ann Yurcek, Sasha with Savanna Pietrantonio (and Mark) and Johan Wiklander of RealMindz plus loads of friends from over 40 countries — Over a 90 day campaign to create awareness with 90 Real People. Real Lives we reached 150,000 views.
In 2017 the campaign Real Families. Real Lives. was created to highlight families and caregivers. Our Sacred Breath also joined the team with the creation of 99 Days to FASDay by creating infographics sharing a tip, fact, research or history of FASD once a day between June 1 – September 9.
The campaign promotes local FASD awareness initiatives all around the world, linking them together at an international level. The focus in 2018 was highlighting pioneers in the FASD movement.
To date, these pioneers have been acknowledged and celebrated:
- Bonnie Buxton(FASDay, FASWorld)
- Brian Philcox (FASDay, FASWorld)
- Teresa Kellerman (Best of FASD)
- Bruce Richie (FASlink)
- Val Surbey (FASlink)
- Ann Streissguth (Research Washington)
- Jocies DeVries (FASTimes/Iceberg)
- Vicky McKinney (FASTimes/IceBerg)
- Linda LeFever (FASTimes/IceBerg)
- Ann Waller (FASTimes/IceBerg)
- Delinda McCann (FASTimes/IceBerg)
- Patti Munter (Founder, NOFAS)
- Kathy Mitchell (NOFAS)
- Deb Evensen (FAS Alaska)
- Susan Rose (New York City – FASSN)
- Kee Warner (WhiteCrow Village)
- Audrey Salahub (Asante Center)
- Jan Lutke (FASD Connections)
- Hon. Susan Carlson (founder, Mofas)
- Pi Nian Chang (FASD Clinic University of Minnesota)
- Kenneth Lyons Jones (Better Beginnings)
- Robin LaDue (Journey Through the Healing Circle)
- Dr. Paul Lemoine (Discovery)
- Dr. Christy Ulleland (Discovery)
- Dr. David Smith (Discovery)
- Elizabeth “Anne” Russell (Australia family support)
- Peggy Oba (FASIN – Fetal Alcohol Syndrome Information Network)
Visit the Red Shoes Rock website (or links above) for all those highlighted to date. Their website also has cool graphics to download and use!
Some hashtags you can use or search on Social Media:
In 2019, the Ask Me tagline was used.
In 2020, we are asking people to Be FASD Aware.
Why? Because 1 in 25 people have FASD in the United States.
CanFASD estimates 1 in 20 have FASD in Canada.
Yet, it remains invisible, misunderstood or misdiagnosed. With COVID-19 and the likelihood there will not be many in person events, in 2020 the Red Shoes Rock team is asking people all around the world to paint and hide red shoe rocks for awareness! Check out their website for more information.
So grab some rocks, a pair of red shoes, red socks, red laces or paint your toenails red and join us in spreading awareness and positivity!
Check back tomorrow for Day 27!