RJ Formanek and Jodee Kulp began #RedShoesRock Stop FASD in 2014 with a 30 day challenge beginning on August 10 – our dream was to stop the stigma and build visibility – That first event was successful with over 10,000 new viewers and families and children had fun sharing their shoes.
In 2015, we added 30 days by using that time to prepare for community grassroots events for International FASDay – September 9. We shared ideas and tips of what people could do big or small to make a difference. This marked the 16th celebration of FASDay to build awareness and we are grateful to Brian Philcox, Bonnie Buxton and Teresa Kellerman for being the brave souls who initiated this dream on 9.9.99 at 9:09.
This year we wanted to not just celebrate, create visibility and build a voice we wanted to share stories and empower persons who live with the challenges of FASD daily. We have had a great time. We have met incredible people. People from Australia, Germany, USA, Canada, UK, Italy and South Africa have already run…
Please encourage our runners – add kind comments – they were courageous to step out for Red Shoes Rock International Virtual Relay Race – meet everyone at realpeople.realmindz.com
I’ve been following and participating in the Red Shoes Rock awareness campaign for the last two years. This year, the third, a new awareness feature has been developed which has to be the best one yet.
The campaign started June 12, 2016 and runs until September 9, 2016 (which is International FASDay) as an International Virtual Relay Race on Facebook and other social media channels. Each day one person who is living with FASD is featured.
Red Shoes Rock International Relay Race is a collaborative effort by RealMindz, Better Endings New Beginnings, It’s Mackie’s World and Parenting Complex Children.
Check out the Real People Real Mindz website FASD IS REAL for profiles of each of the individuals featured.
I think at times it is really hard to realize that my world is different. I don’t know how it became that way really. I mean we wanted kids and all of our friends were having kids. We became different then as we didn’t. I guess that was the beginning. Then when we fostered to adopt that was different and the behaviors we dealt with were different. We were told to “give them back” so many times. Kind of like sneakers that didn’t fit right. Wow that really cut us off as well I don’t believe in throwing a kid away. It started out slow but all of a sudden we weren’t invited to events…then we weren’t even invited to family events. It started to show and it hurt but I tried to look at it as well not everyone can handle our brood but really no one tried.
MEET VICTORIA -Victoria was adopted from Russia when she was 2 1/2 years old and has FASD. Victoria’s special skill is making friends.With that great smile, she can walk into any situation and have a new best friend within minutes. She is also best friends and helper to her brother, who has autism in addition to FASD.
STRENGTHS – Friendly, helper, positive outlook on life.
STRUGGLES – Victoria’s biggest challenge is severe dyslexia. At 9 1/2 years old, she still struggles severely with reading and math.
WISH – Victoria really wishes she could read. And she wishes she was taller.
MEET KEN – Ken is a 31 year old husband and father of a toddler. In 2007, Ken had lived in group home environments, residential or foster care for 13 years. His dream was to become independent, get married and someday have a child. Today, Ken is an excellent dad and his son’s eyes light up when he walks into the room. He is the author of Makin’ It ! His story of his journey through many systems.
MY STORY – Ken was in foster care and adopted. He struggles with Tourette’s, autism, FASD, and many other of the little D’s but this does not stop him from living a happy life. Ken is a person of many firsts. Ken was the first person in the world to have a service dog for FASD to bridge his journey to independence. Limey is part of his story in Makin’ It. Ken and his wife have a loving home an impossible dream while he was still in residential care. And that’s another part of his story in his book.
STRENGTHS – Creative artist, hard working, dedicated, loyal, friendly, out going, kind, funny
STRUGGLES – Acting my shoe size instead of my age
WISH – My dream is to eventually create a gallery/coffee shop in a natural environment for persons with challenges to share the beautiful work they create to the public. A place where everyone can get to know persons with challenges for the beauty they share. A place where we can do art, cooking, craft and music classes together with people of all abilities and ages. A safe place that becomes a natural community care café.
I am available for presentations – message me at facebook
Excerpt from my book:
“Makin’ It” is written through the heart and mind of Kenneth G. Moore who was born with many intellectual and physical challenges. Read as Ken faces each of these challenges with strength and creativity. “Makin’ It” offers a rare opportunity into the reality of living with multiple life challenges like FASD, ADHD and Tourettes. Also learn how a service dog, Limey offered a new direction for Ken’s life.
As I am sharing my story I am realizing how exhausting pulling out my memories are. They are little pieces of my life and me, some of which I have left hidden and never shared. But as a grown man I really want to help young people and families to avoid some of what I lived through. And perhaps give understanding to adults and professionals who think they know what they know and miss out on some of our truth.
What people don’t realize is that when I am learning new skills my mind is already filled with information and it is busy trying to organize—one more piece can be overwhelming – and it can be SO tiny! OR at least it starts out tiny and then it explodes. Perhaps by understanding how I am thinking my life and am living my life, this book can help another person and family.
If you have challenges know that you are not alone in this. I hope you find my book easy to read, I have kept the typeface big to help in the reading for everyone.
Please realize I am just one person living with multiple disabilities. My life and experiences might or might not be true in some other’s eyes.
My life happened as I remember it, so, for the people that think it is true, they can actually think its true. But for the people that think it is not true, they can disagree with it and go on with the book. They can agree with it and understand it, or they cannot agree with it but still understand it. I say this so people can decide for themselves. It is the way I experienced living through my life and the challenges I live with every day.
Writing this book has come from my heart. I have merged my original two books I wrote when I was younger with my understanding I have now that I am older. For those books I started typing and words came out like a snap. Usually kids with the disabilities like I have don’t write a lot. But I love writing. Since I wrote my first book, The Boy Who Has a Good Life I have loved writing.
All of these disorders of mine make it hard for me to understand and live, but I’m writing this and I love it a lot even though at times I got frustrated and started getting dizzy just looking at it and I got overwhelmed. Still it’s fun and active. And if no one reads this, at least I’m doing something to occupy myself.
One time in my life I did not even know what support was but now I do. Support is anything that you can learn from mistakes. When I was a kid I got a lot of help from a lot of other people besides my mom and dad that helped me grow-up to the man I am now.
MEET VOLKER – I am a 59 years old piano teacher from Germany. I got my diagnosis at the age of 57. Every day successfully I am battling my way back into a quite normal life by doing lots of sport (jogging, workout), training my brain (piano playing, foreign languages), a special diet, Victorian discipline, that I am lucky to have a loving wife, who supports me? Even with FASD a quite normal life is possible, but that you have to fight for it with all your energy, which as a result makes you esteem life as such very high? Just as Andrew Peterson does, whom I admire?
STRUGGLES – I started drinking very young, at the age of 16 I was addicted, stopped drinking at 25. Have had some psychological problems, anxiety, depression, who wouldn’t?
STRENGTHS – I speak German and Dutch fluently, have learned English and French and a bit Russian at school. I have studied music on a conservatory. And I am going to do much more in order to make people aware of FASD and help others.
MY WISH – As this is an international problem for all people of all languages and all races I am trying to help create an international network.
I believe classical music can help to make people attend on FASD. Samples of my work
MEET ALEX – I’m 23 and love sports. I’m a hockey goalie and Captain of the Special Olympics basketball team. I like working with plants and have a good job at a big nursery. It’s hard to remember all the plant names! Plus I’m red/green colour blind so the dead leaves look the same almost as live ones. I want to get my drivers license and buy a pick up truck. One day I hope to get married and live in our own house.
MY STORY – From Mom: Alex has always known that he was adopted as an infant. Once we received his official FASD diagnosis, we talked to him about his struggles and how they related to the disease of his bio mom. He has never been angry towards her but continues to refuse any alcohol, doesn’t smoke or do drugs. With his his job. He has surpassed all our expectations, getting himself up, making his lunch and biking to work all on time!! He still lives at home and requires reminders and organizational assistance but has matured into a funny, thoughtful and responsible young man. We couldn’t be prouder.
P.S. This photo is Alex’s favorite after winning the silver medal for basketball at the 2016 Ontario Special Olympics Spring Games. As an athlete, he has been endorsed to compete nationally.
MEET GIANNA – This is Gianna, a very vibrant ten year old, who was diagnosed at 17 months old with full FAS. She plays drums, rides horses, and has tried many activities! Gianna is a kind little girl with a huge heart, who never gives up!!! She has overcome quite a few medical issues, and has many developmental delays. She needs help navigating and translating our world. She does best when she has supports in place and her environment calm without surprises.
WISH – Gianna wishes she had friends, that understood every brain is different, and accepted her as she is. (She actually asks for friends. It’s very sad that people see a meltdown and disappear forever)
MEET STEPHANIE – She loves English horseback riding and she is a lead vocalist and guitarist of the skylarjax band and as well as teaching special needs children to skate and supporting them in swimming for the last 8 years.
MY STORY – I was adopted at birth and lost my adoptive parents 7 years ago and found my bio family years later. I found out I have alcohol related neurological disorder at age 18. I have been supported with lots of family and friends and support workers along my life so far.
More talent and success to come and someday I hope to go even further. #FASD #Loveyouall #wesupport #eachother
MEET EVANN – She’s 18 years old, but loves the look of surprise when people learn that fact, as she’s blessed to look much younger! Evann has FAS and numerous related conditions, but is a real warrior! She considers FASD a “very unfair thing to do to a child.” However, she knows she has worth and value! Her favorite thing is the annual FASD Family Camp she attends with her family, where she gets to see her friends!
MY STORY – Evann was adopted at age 8 by her foster parents who could never let her go! Her early life was full of abuse and neglect, and it took her years to realize that it wasn’t her fault. She’s making strides in math and writing, and her Mom and Grandmother, both involved in her homeschooling, are excited. She has voluntarily held herself back twice, so is entering 10th grade. She’s very happy with that decision!
STRENGTHS – Evann is very athletic and has great enthusiasm for the success of others. She loves making little things for her family, especially her parents and 3 younger siblings, who are all her bio siblings adopted by the same folks! She loves and admires her 5 grown siblings, and the feeling is mutual.
STRUGGLES – Social situations are a huge struggle for Evann, and friendships are elusive. Academics have always been an issue, but she keeps learning!
WISH – She wants to grow up and live in a nice group home, be a massage therapist, and grow organic food. Maybe someday she will marry and adopt a child like herself.