There is Hope for Children with 
Fetal Alcohol Spectrum Disorder

My name is Jodee Kulp, I am the mother of Liz Kulp, (FAE, 16) who was diagnosed at 12.5 with Fetal Alcohol Effects (FAE) . Our journey with Liz has taken our family through foster care and adoption, attachment issues, years of night terrors, rages, and diagnosis of failure-to-thrive, light sensitivities, food sensitivities, sound sensitivities, SI, ADHD, ADD, central auditory processing disorder, visual processing disorder and finally FAE. In essence brain, sensory and metabolic issues due to prenatal alcohol exposure.

Liz makes the best of life. Her strong spirit, determination and perseverance offsets her compromised mind, senses and body. She and our family have worked hard to help her become the "best she can be."

Three points I would like to address:

1. DIAGNOSIS IS ESSENTIAL
2. NUTRITION IS VITAL
3. NEURODEVELOPMENT IS POSSIBLE.

There is hope for our children.

1. DIAGNOSIS IS ESSENTIAL: In my naiveté, I didn't want a diagnosis of Fetal Alcohol for my child. FAS/FAE is a diagnosis with stigma. In reality it was the diagnosis that provided the keys to help Liz become a more productive and manageable person. We need to build public relations to destigmatize FASD. It is not a "bad" person or a "bad" label. With knowledge and acceptance we can move forward for families and persons with FASD. Age 12.5 was too late for the amount of work needed to help my daughter. We needed more time to revisit therapies and build stronger neural connections. I believe with an earlier awareness her adult life would hold more opportunities. We need to encourage struggling families to seek help. Diagnosis is the first step of getting the support families need.

2. NUTRITION IS VITAL in helping persons with compromised metabolic systems. A professional athlete knows the importance of nutrition and activity for peak performance. Our children who lack performance abilities need access to all the tools a professional athlete or scholar uses to reach their peaks or hit their zone of performance. Each child needs a complete metabolic assessment. Does the child have chemical sensitivities, allergies, nutritional deficiencies, immune system issues or infections? Families need a clear understanding of deficiencies to support the health needs of their child and to help their child develop habits for later adult life.

3. NEURODEVELOPMENT IS POSSIBLE - Liz has brain damage no human being can repair. She is also a very alive, bright and sparkling teen with parts of her brain acting very creatively. At 14 she still had some of her infant reflexes engaged, she still did not know how to skip, one of her eyes was suppressed, she could not hear foreground from background, she read poorly and struggled in math regardless the training. A thorough neurodevelopment evaluation provided information we could begin to build on. We learned where her academic and emotional stages of development were. 

We discovered the answers to these questions.

1. Could she make sense of what she hears?

2. How did she experience her world - through her senses - balance, body space, touch?

3. Could she work with both sides of her body together and at different times?

4. What level of listening was she capable of?

5. Could she think silently or was everything she thought expressed?

6. What reflexes did she have? Did she understand time, sequencing or organization?

7. What level of short-term memory did she have with sounds or vision?

8. What happened when you mixed sounds and visual together?

9. Did she overload? How did she breath?

10. Could she understand what she saw?

11. Did different situations changes her ability to see?

12. Could she make mental pictures?

13. Could she coordinated seeing and doing or seeing and hearing or hearing and doing?

14. At what level?

These were the keys that allowed us to begin to build her neural highway. We found out just what she knew and didn't know. It was FAScinating to Karl (my husband) and I that she had to be taught so many things. We didn't know she needed to be taught to roll over at 14, to learn to breathe through her nose, to see with both eyes, to hear one thing at a time, or to accept loving touch. All these things were teachable. By teaching Liz things others learn independently she has become a more independent and happy person.

Karl and I believe this opportunity of growth is available for every person with FASD in different degrees. We cannot replace the areas of the brain that are missing or damaged, but we can build on the areas of the brain that are active, alive and alert. We can help our child control what she is capable and learn to manage her life with the least restrictions and most independence. 

Liz doesn't let Fetal Alcohol brain damage stop her from being her best. 

• At 12, Liz raged, could not read and struggled with high risk teen behaviors. 
  At 12.5 we finally knew why. Liz had prenatal brain damage from alcohol. 

• At 13, she wrote "The Best I Can Be Living with Fetal Alcohol Syndrome or Effects." Her book won honorary mention by Writer's Digest. When she began writing her book she could not write paragraphs, she could not rhe - so instead she wrote a book!

• At 14, Liz spoke on the Ricki Lake show and changed many people's thinking regarding drinking while pregnant. She was the Minnesota Adopted Child of the Year by MN Foster Care Association. She entered the Target Tiger Woods Start Something competition and completed all her goals by developing a singing and rapping group to make a difference.  She entered the contest not knowing what a goal was or how to make one - she accomplished all the goals she set out to make one tiny step at a time.

• At 15, she won the competition and used the money to begin producing a CD and pay for her book printing. She begin speaking nationally with her mother helping people understand fetal alcohol and the reality of living with it. She founded Mo'Angels and began writing her own lyrics and music. As a rapper Liz needed rhythm - like the other things she had to work for perseverance paid off - Liz raps to the beat in her own style.

• At 16, her poetry and lyrics change hearts. She is not afraid to speak deep truths - about alcohol, drugs, justice, sex. Liz's group Mo'Angels sings, raps and speaks out about FAS and how it affects individuals and society. Their message is TEENS HAVE THE POWER to make a difference. She and her group of teen friends believes that if enough teens know about the realities of FAS they will choose NOT to drink during pregnancy. They believe one generation can STOP Fetal Alcohol and it can be their generation. She just might accomplish this the most worthy of her goals. When Liz sets her mind to do something  - it happens!.

• Visit www.moangels.com

A NOTE FROM TONI HAGER, NDS 

Liz Kulp

I met Liz Kulp, diagnose FASE at 13 years old. At that point her short term memory was that of a three year old, her visual processing worked at an infant stages, she screamed and hit back when lovingly touched and ignored injuries that required stitches, the warm sun assaulted her and a breeze felt like a hurricane, lights of all types hurt her eyes. She did not hug or show affection to her family. She would fall to the floor enraged. She was angry, hurt, confused and scared. she felt she was ugly. she felt she was stupid.

Today Liz has left homeschool and is back in a small public sobriety high school. she is able to read and is maintaining A's and B's. At the rate she is going she may be able to graduate early and enter a post secondary option as an early graduate. she is still in special ed. support services. She is gaining academic ground. Her eyes are processing what she sees, her ears are processing what she hears. she can feel pain and she can hug her family. she is making good teen moral decision. Her short term memory is that of a seven year old and she can visualize and developing abstract and logical thinking.

As a person who was prenatally exposed to alcohol she still struggles with time, money and some abstractions, but she is learning to manage. Fetal alcohol is not her enemy. It has taught her that life is hard and through hard work and inner strength she can accomplish more that most teens.

Liz won the Tiger Woods $10,000 scholarship on her own to use to spread her message about fetal alcohol and what it does to the unborn child. She and 3 of her friends have formed a 'hip-hop' group "MoAngels" writing 24 songs about FASD and other teen issues; two years ago she couldn't even rhythm hat and cat! MoAngels are currently cutting a CD!

The work we started with Liz is being duplicated with 21 other Fetal Alcohol children. Each of these children are progressing. One step of advancement provides them opportunity for a different adult life. 

Toni Hager, NDS