Day 7 – #Redshoesrock Visibility for #FASD – #Treasures from FASD Think Tank

redshoesheart-HashtagTreasures from the FASD Think Tank

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”

Day 6 – #Redshoesrock Visibility for #FASD – We’re spreading #GoodNews

IMG_7278That’s right “Good News” about #FASD…
You got to be kidding.

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?

  • Unconditional love.
  • Acceptance.
  • Attention.
  • Supervision.
  • Patience and understanding.
  • Wisdom.
  • Structure / environmental controls.
  • Redirection.
  • Help to slow down when getting out of control (deceleration).
  • Someone who believes they are capable.

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

  1. Praise their strengths.
    2. Acknowledge their expression of frustration.
    3. Respect their fears and difficulty with change.
    4. Understand that behaviors may be a can’t do it not a won’t do it.
    5. Talk to them as a person – not someone who is unable to understand or do something. Work together to break a task into smaller steps.
    6. Keep from comparing them with others.
    7. Keep from joking, teasing or putting them down.
    8. Keep yourself from telling them, “you will grow out of this.”
    9. Get involved in their interests.
    10. Find out what they are trying to learn and think of fun ways to join.

Now put on your RED #CAR #SLIPPERS and get out and make some noise!

Day 5 – #Redshoesrock Visibility for #FASD – Sometimes we need #Spiderman Slippers!

IMG_7279When 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”

Day 4 – #Redshoesrock Visibility for #FASD – September is #FetalAlcohol Awareness Month

Write a PSA!
Or use one that already exists –

September is Fetal Alcohol Awareness Month – so share this wonderful PSA with friends – or take a look at some of the other great PSA’s online – most of the people working with FASD Awareness willingly share –

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!
Laura Nagel

http://www.youtube.com/watch?v=k_USXRi8zt8

Day 3 – #Redshoesrock Visibility for #FASD – It will take a world of change

RedShoesRock-91 There is still time to get a plan together for 9.9 at 9:09 or simply step with us up to International FASDay. 

Bells Ring at 9:00 – and then a Minute of Reflection at 9:09 am

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.

  • Alone or with others, sit outside quietly and listen to the birds, or the wind blowing through the trees, or water lapping against the shore of a river or lake. You may want to focus on the wonderful gifts and strengths of the person(s) with FASD in your life.
  • Say a prayer or recite a poem appropriate to your beliefs or culture.
  • Sing a song or hymn.
  • Listen to an excerpt of your favorite music. (Any suggestions?)
  • Play a musical instrument, alone, or with fellow musicians, or ring tiny bells and “triangles” as the children of Queen of Apostles School, Toledo, OH did at 9:09 a.m. on September 9, 1999.
  • Sit in a circle and share some pure spring water with people you care about.
  • Place a long-distance phone call to a special friend who is equally committed to the FASD issue: you could even make it a three-way or teleconference call.

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!

Day 2 – #Redshoesrock Visibility for #FASD – 60 FREE Ideas to Create a #FASDay Event

60 FASDay Ideas for Mac’s Sake

MacShoes

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.

Get Your Friends Together and Make a Difference in Real Lives and Real Futures!

Have fun building fetal alcohol spectrum disorder (FASD) awareness!  You Can Make a Difference.  You Can Reach One!

 

Happy Independence Day – Possibilities for FASD

 

Join our 60 Days To FASDay – What is FASDay?

Day 1 – #RedShoesRock for #FASD Visibility

Welcome to all who are participating in this first ever “Let’s Get Visible” campaign.

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Life is hard… but I won’t quit!

What does it mean to be a person living with fetal alcohol spectrum disorders?

… 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!

 

Welcome to Red Shoes Rock where Visibility Stops FASD

 

walkinmyshoes9 for 9.9
Red Shoe Rock Challenge

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.

Description
  1. 9 Day Challenge – September 1-9  Make some forward motion of 9 Miles or 9 Kilometers in 9 Days
  2. 31 Day Challenge – August 9-September 9 – 350 people committed to make some forward motion of 9 Miles or 9 Kilometers in 31 Days
When someone comments on your shoes -TELL THEM ABOUT FASD! And why you are wearing them.
OK everyone – Time to Run – Walk or Wheel. Let’s get our MOVE ON!!
WE CHALLENGE YOU TO ROCK OUT FASD!
– Rock out invisibility
– Rock out stigma
– Share an important message
– Have some fun!
We believe we can Rock Out FASD – so put on a pair of RED SHOES and share your Rock Out photos for the next 30 days on our FACEBOOK page -LIKE our page and SHARE our page – Let’s get some movement going – Get your Red Shoe Rock On!

LEARN MORE ABOUT FASD

Include these hashtags in your tweets or your photos on instagram include:

  • #redshoesrock
  • #fasd
  • #049
  • #fetal alcohol
  • #liveabilities

Visit our hashtag sites to see what is being tweeted:

SIGN UP FOR OUR NEWSLETTER BELOW – JOIN THE MOVEMENT

embraced-redshoesrock-merged
Visit us at www.embracedmovement.org to learn more about the 90-minute documentary. Join us is sharing the Red Shoes Rock FASD Aware information at www.facebook.com/RedShoesRock/

Kicking off “RED SHOES ROCK – STOP #FASD” Campaign Today

Sharing from the Lighter Side of FASD!

FASD WITH HOPE

RedShow-GravatarThe 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 …

  1. The development of a world community meeting in one place to make a difference to build awareness of FASD. 
  2. Fun ideas and silly photos.
  3. A Facebook page where everyone can meet up and chat
     goo.gl/WkoXd8

What do we need from you…

  1. Action – get some red shoes and have fun in them
  2. Photos –…

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