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!
