Today we challenge you to find a pair of red shoes and walk together with us in celebration.
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I love my daughter’s ability to help me see the world from a different perspective, her ability of picking up on nuances of how one is feeling, her play on words: “egg-xactly” “egg-traordinary” and exclaiming “That is MY joke!” (Kathy)
My husband is loving, kind to us no matter what, has a great sense of humor, always tries to do better, can laugh at himself and tries to help with ALL the chores, not just the ones he likes (Peggy)
I challenged myself to come up with twenty things I love about my son (and it was fairly easy to do):
My son is over age 20! (Victoria)
1. his smile and laughter
2. his friendship
3. his ‘child whisperer’ abilities
4. his music and dancing
5. his ability to forgive
6. his ability to research the internet for ‘deals’, comparison shop and find the best deals before he makes a purchase
7. his ability to instantaneously work almost any electronic device
8. his wonderful compliance in taking supplements and NR exercises when mom asks/asked
9. his creativity and unusual/unique way of looking at the world; and opening my eyes to this uniqueness
10. his voracious appetite and his culinary expertise
11. his bravery….it takes this to live in a world that is often unkind to him
12. his eagerness to share….evident since he was very young
13. his brilliance at learning . . .all the things he is interested in.
14. his ability to sometimes know what he is not ready for (eg., not ready to drive)
15. his ability to recite movie dialogue and passages from books, like a savant (both wonderful and scary)
16. his realization that if he’s carrying cash, he will spend it but if it’s in the bank, he’s careful and willing to save it
17. his kindness
18. his love of animals
19. his love of jokes and plays on words
20. his artistic talents
I love my daughter’s view of the world, she provides me with a truth I would have never understood and people I would never have known. (Jodee)
Text above has been excerpted from
“Best I Can Be – Living with Fetal Alcohol Spectrum Disorders by Liz Kulp”
Well guess what folks we are not… There are many treasures locked inside persons living with the challenges and complications of fetal alcohol… as parents and caregivers and friends and the community we can make a difference.
We need you! Children with brain injury need nonjudgmental, loving friends and relatives who accept them as they are, encourage but not demand growth, and rejoice in strengths and accomplishments no matter how small.
What every child with FASD needs?
We need your help. It is exhausting to raise a child who has prenatal brain injury. Consider learning how to provide respite for us. Please understand this is a brain injury not an issue of ‘bad’ parenting and our child is not a ‘bad’ child.
Ways to help our child grow
Now put on your RED #CAR #SLIPPERS and get out and make some noise!
When you are born with a brain that works different from the rest of the world, it doesn’t take long before you start noticing – even when you are little that something is wrong – and maybe that wrong is with you… and you think… I try really really really hard to be good and do things like everyone else… but even when I try my best people think I am being rude, behaving badly, not measuring up… What if we could change the thinking of the neurotypicals – that means people who have brains like most of the world to see and understand us as we are. To love us for what we are able. To enhance our “Live Abilities” instead of talk about our disabilities… Together we can do it and what will happen? Well, we hope what will happen is that we, who live with FASd will carry less burden of fear, less burden of anxiety and less burden of sadness. And with hope, happiness and joy – you will see who we truly can be and become.
Sometimes we just need some Spiderman Red Slippers!
Who is Spiderman?
He is an ordinary person that somehow becomes extraordinary named Peter Parker. Peters is socially awkward, shy high schooler who gets bitten by a radioactive spider. Parker’s blood is affected by this bite, and he is suddenly stronger, very fast, and is able to shoot webs, climb buildings, and leap long distances. Peter is not always successful in resisting abuse of power, but part of his appeal is his constant struggle to be a better person, not just a more powerful superhero. And really for each of us, isn’t that important…. Here’s to each of us becoming the “Best We Can Be Living with FASD”
This was created by a 2009 high school graduate in a tiny rural KY county – he’s got real talent, and I’m so grateful to him for taking the time to do this. Please feel free to pass it on – I want Parker and his fabulous PSA to get a lot of views today!!
Happy FASD Awareness Day from Kentucky!
Everyone participating in FAS Day is invited to share in the “Minute of Reflection” 9:09 a.m. on September 9, as it goes around the world.
In this magical moment the ninth minute of the ninth hour of the ninth day of the ninth month we want to get out the message that in the nine months of pregnancy, while breastfeeding or planning to conceive, women should not drink alcohol.
In this minute, we also want the world to remember those millions of people around the world who are living with fetal alcohol disorders. If a large bell or carillon is not accessible or appropriate, participants can do many things to observe that special minute in accordance with their own cultural background or religious beliefs.
The Minute of Reflection symbolizes the worldwide circle of community which links all of us who care about FASD, all of us who are working towards prevention, all of us who are trying to help children and adults with fetal alcohol disorders reach their full potential. Here are nine more suggestions for observing the Minute of Reflection. If you have other ideas, please share them with us.
You may find 9:09 a.m. inconvenient and may prefer to mark the Minute of Reflection at 9:09 p.m., and light a candle to symbolize both the flame of your love for individuals living with FASD, and your burning desire to eradicate this preventable birth defect.
Simple silence. The kind of silence that has existed for centuries.
Each person with FASD is different, and those of us who love them respect their differences. Respecting each other while working together is what FASDay is about.
THEN STEP OUT AND MAKE SOME NOISE! RED SHOES ROCK!
International FASDay arrives on the 9th month on the 9th hour on the 9th minute as a moment of silence in thought of persons with fetal alcohol spectrum disorders or with a louder announcement of public awareness with one of these 60 great ideas to get you started for next year! All of the links are available each year but we update and switch to keep information current.
Have fun building fetal alcohol spectrum disorder (FASD) awareness! You Can Make a Difference. You Can Reach One!
Life is hard… but I won’t quit!
… It is the infant who is unable to suck and tolerates most infant formulas and is failure to thrive, does not sleep, cannot adjust to lighting or noises and is unable to sooth
… It is the two year old whose temper tantrum is MORE (a limbic system overload into never never land), does not sleep, cannot adjust to lighting or noises and is unable to sooth
… It is the preschooler who watches as friends skip across a playground and has the first realization she is different
… It is the elementary school student who loved being read to and discovers he can not read
… It is the middle school student who desires friends so badly he will do anything to attain one
… It is the high school student who helps a friend and ends up in juvenile detention – the friend has disappeared
… It is the transitioning adult who self-medicates to cope and tumbles into addictions
… It is the adult who learns to conquer his or her past and rise above it… the challenges are not gone nor are the brain or body issues. But they have survived – and they are now standing in knowledge for the next generation.
This campaign is for our people who walk daily with the challenges of FASD—as survivors of alcohol in the womb. We have seen when they expose their disability it has led to bullying, laughter and many misunderstandings and when they have tried their best to hide there issues the same thing has happened. It takes strong adult survivors to stand up and say “enough” we are invisible no more!
For caregivers and loved ones who understand this diagnosis intimately we have been bullied, laughed at and misunderstood also whether we share the diagnosis or not. FASD is not invisible. It seeps out of the cracks and crevices of our lives as we work, learn and play…
Thank you for stepping out in RED SHOES ROCK with our people!
Put on a pair of Red Shoes and walk, run, swim, work, shop or wheel ROCK out the invisibility of FASD for 9 Miles or 9 kilometers before International FASDay on September 9. This is a virtual challenge so you are on your own.
Include these hashtags in your tweets or your photos on instagram include:
Visit our hashtag sites to see what is being tweeted:
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Sharing from the Lighter Side of FASD!
The countdown to September 9, 2014 has started and Better Endings New Beginnings and Flying with Broken Wings decided we needed a quality kick off to up the momentum around the world.
So FASD Survivor Navigator RJ Formanek, Liz Kulp, Sam Guerrido and Jodee Kulp joined forces to begin a movement people can have fun and talk about FASD at the same time.
We’re challenging everyone to walk – wheel or run 9 miles in 30 days – that’s 3 blocks a day folks – we can all do that!
What we will provide …
What do we need from you…
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