#9 Days To FASDay – Speak Out on Fetal Alcohol

Prepare to give a speech

This is the first time Liz and I stepped out years ago at the 1st International FASDay –

You can do it too!

Here is my speech – feel free to use mine and adapt to your community.

Today is a day… International FAS Awareness Day — 9.9.99 @ 9:09
Jodee Kulp, Parent Keynote, Federal Courthouse Plaza, 12:30 pm — Minneapolis, Minnesota

Thank you for being part of International FAS Awareness Day 9 9 99.
The Bells have rung out in Minnesota and are continuing their journey around the globe. We were the 18th time zone in the International Bell Concordance and didn’t they sound beautiful! Thank you to the citizens of Minnesota and all those involved with prenatal exposure for the mighty effort they put out to make this day happen.

It is my privilege to speak on behalf of all the parents who love and live with children exposed to alcohol before birth. It is my privilege to speak for those who live daily with the primary and secondary issues erupting from this exposure.

Today is a day of awareness.
We have stripped back the dark covering and let the sun shine in. We have come together as a world family, united in the cause of making a difference and hope this first “One Magic Moment” will begin to change lives.

Today is a day of awareness.
Alcohol is devastating, and most devastating to the weakest and most vulnerable in our society — the unborn child. Alcohol exposure is the leading known cause of mental retardation in the western world – US, Canada, Europe and Australia.

In the United States 10,657 babies are born daily (1999 US numbers are listed below)

  • . . . 3 will have Muscular Dystrophy
  • . . . 4 will have Cystic Fibrosis
  • . . . 4 will have Spina Bifida
  • . . . 4 will be infected with HIV
  • . . . 10 of these babies will have Downs Syndrome.

Researcher and fund-raisers are working for these children.

But — are you ready for the figures —

  • . . . 20 babies will be born with FAS
  • . . . these children will have visible facial and other physical deformities
  • . . . they are the lucky ones

People will see with the eyes, understand and help will be provided. These physical manifestations are not caused by MORE drinking but simply because of the day in gestation the pregnant mother chose to drink.

Today is a day of awareness.
NOW — are you really ready for the tough issue

  • . . . 100 babies will be born with Fetal Alcohol Effects
  • . . . these children’s deformities will be hidden within their bodies, in their brains and organs.
  • Most will go undiagnosed.
  • Most will live a life with little help with behaviors misjudged and struggling with learning and emotional issues.

Today is a day of knowledge.
Brain damage is non-reversible and a permanent condition that an individual must live with for the rest of their life. The person with prenatal alcohol exposure does not have the choice of NOT being impaired, yet has the responsibility of learning to live and to fit into a society that neither tolerates nor understands their impulsive behaviors.

Today is a day of knowledge.
Any one of us could become the parent of a prenatally exposed infant. FAS is no respector of persons or culture. It crosses economic and racial lines. The results of a very recent survey of over 100,000 women discovered that women in households of greater than $50,000 income, women who are college educated, unmarried women and female students have a higher than average incidence of drinking during pregnancy. I ask that no fingers be pointed at any person for this affliction. I ask for forgiveness from the past. I ask for a resolution of personal responsibility from this day forward for even one child to be saved.

Today is a day of knowledge.
A can of beer, a glass of wine, a shot of liquor and a wine cooler all contain about 1/2 oz. of absolute alcohol. If a woman consumes 2 drinks in one hour, her baby could have a blood alcohol content higher than the mother could. FAS is 100% preventable. If a woman becomes pregnant, she shouldn’t drink. It’s that simple. There is no known safe amount of alcohol for a pregnant woman. When a woman drinks, her baby drinks, because alcohol passes directly through the placenta to the baby.

Today is a day of hope.
When we join together we can achieve a better tomorrow. The knowledge each of us holds can provide the tiny pieces of a large puzzle to help contribute to the success and happiness of those afflicted. Together we can provide knowledge, wisdom, support and encouragement to women who are planning to conceive, pregnant or breastfeeding a child. This we can all do with love.

Today is a day of hope.
Solutions require us to work together. Doctors, researchers and nutritionists around the world can share their discoveries and treatments that are already making a difference. Mental health professionals, educators and parents can join as a team to reach, teach and train these young people, sharing ideas from around the globe.

Today is a day of hope.
We must open our eyes and our ears. We must shift our focus and understand the inner world of living with prenatal exposure. We must begin to see these children differently, and begin to build the bridge of understanding. Diane Malbin a tireless advocate provides the clues by changing from:

  • “Won’t to can’t”
  • “Bad to frustrated”
  • “Lazy to tries hard”
  • “Refuses to sit still to overstimulated”
  • ‘”Fussy and demanding to oversensitive”
  • “Trying to make me mad to can’t remember”
  • “Resisting to doesn’t get it”
  • “Doesn’t try to tired of failing.”
  • “Doesn’t get the obvious to needs many reteachings.”

Yes it is hard to be the parent of an FAS child.
Yes it is hard to be the teacher of an FAS child.
But have you tried to be the FAS child!

Our adopted daughter Liz exhibits Fetal Alcohol Effects. Our family has grown deeply because of it. The primary issues of hypersensitivity, overstimulation, night terrors and learning disabilities have challenged us.
We have struggled with impulsivity, low self-esteem, anger and frustration.
We are determined to prevent the secondary issues from occurring – violence, suicide, alcohol abuse, poverty, homelessness, delinquency, incarceration, and early pregnancy.
We have discovered that proper nutrition, added nutrients and sleep make an incredible difference and allow Liz to function very well.
We have discovered she is happiest when provided clear boundaries and concrete communication.
We have discovered her learning styles and teach everything in multiple modalities….see it, hear it, do it. With a strong emphasis on doing it.

I am proud Liz is my daughter and she is doing wonderfully. This growth did not come easily for her. She is a fighter and has climbed many mountains. In a quiet one-on-one teaching arrangement she has been able to gain 5 years in reading, 7 years in spelling and is currently at age level in mathematics. Learning any new material has been very difficult for her. We have been building one very tiny step at a time, without moving on until mastery has taken place and then often reteaching areas a number of times.
Though her brain still works compartmentally we are beginning to see transfer of some information and together we are learning how to teach and how to learn. She and I are on the same team. By “compartmentally” I mean, for example, that when are doing spelling she can spell at the 9th grade level and when we are learning to write she can spell at the 6th grade level. The transfer of information is very difficult for her.
Two weeks ago, my daughter Liz and I bought a peck of cucumbers to make into pickles. Our science classes are very hands on and we were going to study sterilization and Louis Pasteur. We washed and carefully brushed each cucumber so they were perfectly clean – they were beautiful. Then we soaked the cucumbers overnight in a 5% salt solution. In the morning the cucumbers looked the same, but no longer tasted the same. We cut up garlic and dill and red peppers, and boiled vinegar, salt and water with pickling spices. We packed sterilized jars tightly with our beautiful bright green cucumbers and poured on the brine. Then we sealed the jars and boiled them 20 minutes in a hot water bath. When we lifted the jars out of the water a dull green pickle had replaced the bright green cucumbers…
And I thought THIS IS WHAT we have done to these children.

Today is a day of advancement. Growing up with FAS is a community process and it takes a united community to raise these children. It took one dream and two people to create the vision for today — Bonnie Buxton and Teressa Kellerman.
They believed:
‘The oscillation of butterfly wings in Brazil may set off storms in Texas.’
And what a storm they set off. They mobilized and motivated individuals from around the globe. From New Zealand to Alaska people have united. The Internet has connected a previously silent world of creative, intelligent and hardworking individuals willing to lay down differences for a common cause of helping children and adults living with FAS
Where do we go from here?…
These children are teachable, lovable, creative and energetic but they do not learn like other children. They need to be taught things other children just seem to simply know. We need to discover the resources already available and we have powerful resources in our backyards — birth parents, adoptive parents and foster parents who are living, loving and growing together 24 hours a day with prenatal exposure. These families have been creative in developing processes that work to help their children succeed and find happiness in a world they struggle in.

I challenge each of you to make a difference.

  • Tell people this is an important issue.
  • Join with NOFAS www.nofas.org and share ideas and information.
  • Visit our website at http://www.betterendings.org/
  • Email your successful ideas to us. We will publish them.
  • Encourage women to remain alcohol and drug free during pregnancy.
  • Write to your congressman, senators, schools, community leaders and medical professionals and let them know “We’re Tired of Our Children Being Pickled.”

Today is the day to make a difference.
My words on this 1st hopefully of many future International FASDays are dedicated to my wonderful Liz. May we begin this difference in changing this world for others together.

Speak Out in Your Community and open the minds of others to Help Raise the Standard to Build Better Baby Brains
Join the International Virtual Million Mind March

If we want to create an “REAL” Economic Stimulus Package – now is the time to begin promoting “Building Better Baby Brains” by Raising the Standard for the Future – Alcohol and Babies don’t mix and add to the future cost of education, medical, community and judicial services.
  • Join our virtual Million Mind March to give One Million Babies in the next year the opportunity to develop healthy minds
Participate in a Local Radio Show and Get Your Events Talked About
Call your local radio show and see if you can get on a program to talk about FASD during the next 60 days. You may just open up some minds and save a few baby brain cells.
Visit:
Step out, speak out, get out and make some friendly noise to build awareness of FASD – fetal alcohol spectrum disorders.
Tomorrow I will share the first speech I fearfully spoke on 09.09.99 at the 1st Annual FASDay – sadly the same message still needs to be heard.
Enjoy coming up with GREAT ideas – we’d love to hear from you!

#46 Days To FASDay – Join or create an easy survey

Conduct a Simple Survey or Quiz
Easy to do…

Invite the general public to the 

Million Mind March FASD Awareness 
Link the quiz and invite friends to answer

Teen Survey –

  • At your high school
  • At the local mall
  • At your sports events

Conduct a FASD Teen Survey in your community. Just find one teen who knows 20 other teens, and you will be participating in a nation-wide survey. All this takes is a $5 donation to the teen who conducts the survey to pay for 20 mini candy bars.

The survey can be downloaded here.

#56 Days To FASDay – Pick a project

Pick a Project for 
Fetal Alcohol Awareness!

Are you bookmarking everything? Using Pinterest?
Keeping notes on file in your computer?
Good!

Set up a meeting (in person, by email, or on the phone) with the other contacts in your area. Think about what a difference YOUR part will make in preventing future cases of FASD or helping children and adults already affected! Don’t forget to include at least one parent, one service provider (teacher, doctor, judge), and one government leader (legislator, head of local department of mental health or developmental disabilities or corrections).

This will help you to bridge the information gap in your community!

Now pick one (or more) of the following events to turn into a news story:

  1. Ring some bells. Plan your own Bell Concordance. Ask a church to ring their bells. I choose to deal with the Catholic church, because the bishop of the diocese can ask all the churches in the city to participate. In fact, the photo is our cathedral here in Tucson. Here is the letter I wrote to our diocese today. It has a sort of pro-life twist, because I know that will appeal to the Bishop. If you know a local church that has bells, write a letter and call and make an appointment to talk to whoever is in charge. Take along a few brochures. If you can’t find any bells to ring, you can simply have a Moment of Reflection.
  2. Host a “BreakFASD” (after the bell ceremony perhaps?). You can ask the church if their is a community service group that might like to provide donuts and coffee in the church hall. Or invite everyone to bring a potluck dish to a nearby park, or a facility provided by a local disabilities agency. This is a good opportunity to partner up with other organizations who might like to collaborate in future projects and grant opportunities. With an informal gathering of families and community leaders, the folks who formulate local policy will get to meet the children for are impacted by how those policies are implemented. It might also provide an opportunity to start a local support group for parents and families.
  3. Start a support group. It only takes two of you to begin with. After the news story, families will reach out to you and you will meet the folks who will do all this work for you next year! Call your local library and reserve a meeting room. Set a date and time that is convenient for you. We are going to meet the day after FASD Awareness DAY this year. The library is a good place, because they usually have computers and Internet access (you might want to reserve an hour, if necessary), and you can show local folks all the cool Internet sights. Some fun and interesting web sites will be provided to you later.
  4. Plan a “Walk-Along” – round up your city’s disability groups (like The Arc). Even if you only get a dozen people together and at least one special walker (someone you know with FAS/FAE), you will have a crowd worthy of media attention. This is kind of like a Walk-a-thon but not exactly. It’s called a “Walk-Along” to remind everyone that kids with Fetal Alcohol Spectrum Disorders will need someone to “walk along” with them for the rest of their life, because they are at risk of failing if they try to go through life on their own. Instead of pledging dollars per mile, people can make straight donations to support the walker. Donations can be made to an umbrella organization, like your local Arc chapter. Inform your local Arc chapter that the National Arc has made funds available just for FASD Prevention. Our Arc recognizes the need for preventing secondary disabilities as well as preventing FASD itself, and awareness about secondary disabilities is included in Arc awareness events here. More about the “Walk-Along” later. Just find a public place like a park or a lake or a mountain trail that you can use as a meeting place (and media interview place). Look at what Minnesota did!
  5. Plan a public Information Table. Call the manager of your local shopping mall. Ask if you can have a table for your FASD Support Group (even if it is only you and your family) to distribute information on Fetal Alcohol Spectrum Disorders.

NEED MATERIALS?
They are only one click away!

  • You can print FASD handouts and get them copied at a local disability agency or parent to parent organization or your local Arc. These Think Before You Drink brochures from the Arc are nice.
  • You can download and print these FASD fact sheets.
  • Buy several bags of Snickers mini bars and pass them out with one of these FASD cards. (Use card stock or standard business card forms.) Your local March of Dimes (look in the phone book) might contribute bulk brochures.
  • Oh yes – here’s a basic info sheet, very simple, and a documented FASD Fact Sheet, just print and copy.
  • Make some FAS Knots. Or just order them here.
Online Manual – www.fasday.com
Seminar – Or try our easy, effective, exciting 1½ hour program that walks you
 through the morning of Sept.9: http://www.come-over.to/FASDAY/ABCDEFG/ 
(material from 2002 has excellent ideas)


Follow us through the next 60 days and plan your local or personal project to build awareness of fetal alcohol spectrum disorder – Each One Can Reach One!

Need family support visit www.toolboxparent.com
Need ideas for adults living with challenges of FASD visit www.braidedcord.net
Need information on fetal alcohol spectrum disorders visit www.betterendings.org
Interested in service dog for FASD visit www.thechancerchronicles.com

#60 Days To FASDay – FASDay International

International Fetal Alcohol Awareness Event September 9, 2012 
Join the Virtual Million Minds March to Build Better Baby Brains

Want to get on the FASDAY Train?
Want to bring others on board?

Subscribe to the FASDay mail list.

VISIT

INTERNATIONAL FAS DAY –
IN ONE MAGIC MINUTE, WE CAN CHANGE THE WORLD:

9 /9 9:09 a.m.In late February, 1999, a small group of burned-out parents, most of whom had never met face-to-face, began to change the world. Since then, hundreds of communities around the world have joined us to honour International FAS Awareness Day (FASDay).
We are parents of children with Fetal Alcohol Syndrome or ARND (Alcohol-Related Neurodevelopmental Disorder), the most common and damaging birth defect in the world, and the one which could be totally prevented. The full range of disorders caused by maternal drinking in pregnancy are now generally known as FASD (Fetal Alcohol Spectrum Disorder), and it affects about 1 in 100 people in North America, about 4 times in incidence of AIDS/HIV. (There are about 3 million people with FASD in the U.S., and 300,000 in Canada, the majority undiagnosed.)
In South Africa, Eastern Europe and the countries of the former Soviet Union, the rate of undiagnosed FAS is even higher.
Our original volunteers were mainly adoptive and foster parents, plus a small but committed number of mothers in recovery, who have been working hard to inform and support other women with substance abuse problems. All of us lived daily with children whose prenatal damage caused mental retardation or learning disabilities, plus severe acting-out behaviour that disrupted our lives and their classrooms, and often physical problems requiring much medical attention.

Click map to visit FASD Center of Excellence to learn
more about what each country accomplished

For most of us, life revolved around our children’s crises: most mothers had been forced to abandon any thought of full-time career. Frustrated by the lack of public awareness of FAS by both public and professionals, we had communicated on line internationally for more than two years.
And on that February day, Bonnie Buxton, and Brian Philcox working in collaboration with Teresa Kellerman, began to wonder:
“What if, on the ninth minute of the ninth hour of the ninth day of the ninth month of the year one thousand, nine hundred and ninety-nine, we asked the world to remember that during the nine months of pregnancy, a woman should not drink alcohol? And, what if we also asked the world to remember those millions of people who will struggle all of their lives, because of prenatal alcohol? “At this magic minute in history, could we begin to change the world?”
And we began to work together, helped only by the Internet. Our group grew to include more than 70 volunteer coordinators in eight countries. Our northernmost volunteers were in Alaska, Yukon and the new Canadian territory, Nunavut, our southernmost in New Zealand.

Online Manual – www.fasday.com
Seminar – Or try our easy, effective, exciting 1½ hour program that walks you
 through the morning of Sept.9: http://www.come-over.to/FASDAY/ABCDEFG/ 
(material from 2002 has excellent ideas)
Follow us through the next 60 days and plan your local or personal project to build awareness of fetal alcohol spectrum disorder – Each One Can Reach One!

Need family support visit www.toolboxparent.com
Need ideas for adults living with challenges of FASD visit www.braidedcord.net
Need information on fetal alcohol spectrum disorders visit www.betterendings.org
Interested in service dog for FASD visit www.thechancerchronicles.com
<A HREF=”http://ws.amazon.com/widgets/q?rt=tf_cw&ServiceVersion=20070822&MarketPlace=US&ID=V20070822%2FUS%2Fbetterendings-20%2F8010%2Fdc4ffe7a-6a04-45f0-815b-6cbf10d6416d&Operation=NoScript”>Amazon.com Widgets</A>

Let My Yes, Be Yes and My No, Be No

After almost 30 years of parenting an array of complex children who have grown into now adults I learned that Yes, my no must mean no. It has to. A ‘no-boundary’ must be clear and visible.

Working with tough kids you could spend all day using NO and sorry to say a NO used to often blows through one ear and out the other never stopping to allow a thought.

I have learned that one must use that NO frugally because it is a precious word of great power. For atypical children/adults, especially those with brain injury it sends them to the end of a cliff in a free-fall without answers. The word NO becomes a set up for defensive behaviors.

My friend and I were comparing notes and we have both come to the same conclusion – we use YES most often, whenever we can. So NO sticks when it is needed, and we can be strong enough the stand still without bending.

  • How can we do that with tough kids who look like they are defying or challenging us?
  • How do we keep control while giving them a path of acceptance?
  • How do we use YES, so we create boundaries and don’t become a doormat?

When I am asked to do something

  • I do not have time to do,
  • I don’t want to do,
  • I don’t know how to do.

I use the following statements:

If it is something I also want to do and it is a good idea, I make an appointment

  • Yes, we can go to the park tomorrow after you eat your lunch or after your nap. Then I remind them in the morning – Remember after your nap we get to go to the park.Yes, we can deliver those job applications, after you bring them back to me filled out. If you need help filling them out I am available right after dinner.

I provide abilities to accomplish the idea

If it is something I can’t do I say so.

  • I can’t do that because it is (describe behavior – cheating, lying) and I like to look at my face in the morning and say smiling “Good morning, Jodee, this will be another grand and glorious day.)

My moral standards need to stand firm.

If it is something I don’t know how to do I say so.

  • I don’t know how to do that, can you find out how to do that for me or maybe we can find out how to do that.

Together we can make this happen.

Share your ideas so that when a NO has to happen it can stick.