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My Personal Experience with Fetal Alcohol Spectrum Disorders

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My Personal Experience with Fetal Alcohol Spectrum Disorders (FASD)

My writing experience was inspired by my adopted son, Joshua.  He was a tenacious young boy with an amazing story of survival.  In the beginning I wanted to write a simple story of our meeting, and give it, as a gift, to Joshua.  Soon, however, I realized that I wanted to share our love story with other adopted children.

The original target audience was young children ages 5-8 years old.  The initial story was simply one brief chapter from Joshua's life.  Reliving this tender experience and putting it down on paper quickly drown me in a whirlpool of mixed emotions and memories.  Then it blasted me into another creative universe of writing.  My idea for a children's book exploded into a trilogy with a mission and a message written for pre-teens, teenagers, and young adults.

I chose to fictionalize Joshua's story to protect his privacy.  I've changed the names of most of the characters.  Some of what happened to the main character, Joshua, actually happened to my son.  Only he and I know which parts of the books are real and which parts are totally from my imagination.  I've read and reread these books so many times that these separations are beginning to blurr...

Josh has an invisible disability called Fetal Alcohol Spectrum Disorders or FASD.  Fetal Alcohol Spectrum Disorders is an umbrella term used to describe the many physical, mental, emotional, learning and behavioral challenges, which individuals who were prenatally exposed to alcohol, may exhibit.  The alcohol caused permanent brain damage to the developing fetus.

My son looks normal and has a normal IQ.  Yet because of his prenatal exposure to alcohol, he has permanent brain damage.  As a result, Josh struggles with risky behaviors that often put him in dangerous situations.

Josh is a difficult child to parent.  He isn't like other kids.  He has poor impulse control and a poor memory.  He cannot learn from his mistakes nor can he connect cause and effect.  He has difficulty managing money and time, and has the emotional maturity of someone much younger than he.

I wanted to promote healthy, alcohol and drug free babies, and to raise awareness of FASD.  I wanted to reach impressionable pre-teens, teenagers, and young adults through a fictionalized story of a child living with Fetal Alcohol Spectrum Disorders.  I felt that the story needed to be told from Josh's point of view.

Another goal was to encourage individuals with FASD to read books.  I wanted to give them hope by creating a hero with whom they could identify.

Many young people with FASD have low reading abilities, so I wrote the books at a low reading level.  My books are categorized as "High-Low" meaning the reader has a high interest in the subject matter, but low reading skills.  The actual reading level for the series is about that of a middle school student.  It is interesting to me that I've had several adults comment that "the books are the perfect reading level for me."

The series is divided into three time frames.  Book one, "9 Lives, I Will Survive," covers Joshua's birth up through our adoption.  Through these pages, I wanted the reader to fall in love with the fictional Josh, much like I did with the real one.  This is a story of an interracial adoption, of an older, special needs child, into a family with two committed and loving white mothers.

The second book, "9 Lives, Cat Tales," tells of Josh's experiences during his elementary and middle school years.  In this book, I wanted the reader to see Josh as a boy with promise and an appetite for life.  It was time for his behavioral issues to begin  to surface.  The reader should start to wonder about and question the source of Joshua's behaviors, much like I did.

The final book, "9 Lives, Full Circle," covers the most difficult times for young Josh, and for us as a family.  It is about his turbulent teenage years.  Through these chapters Joshua, like many teenagers, questions his identity.  He gets into trouble and experiences the juvenile justice system.

Josh comes full circle, and reunites with a member of his biological family.  Through this reconnection, he learns about his birth mother's alcohol consumption during her pregnancy with him.  Finally, he has an explanation for his behavioral problems.  Now, he must understand and accept his invisible disability, and learn to embrace a full circle of support, to better manage his life and accomplish his goals.
 
A developing fetus, exposed to even a small amount of alcohol, can suffer permanent, invisible brain damage.  Statistics show that 1 out of every 100 babies born in North America is born to a mother who has consumed alcohol during the pregnancy.

Sixty percent of all women, of child bearing age, consume alcohol.  Fifty percent of all pregnancies are not planned.  Many women drink alcohol for several weeks, before they realize they are pregnant.  By the time they learn of the pregnancy and stop drinking alcohol, the brain damage may already have been done.  No amount of alcohol is safe to drink when a woman is pregnant.

Thousands of the young people in our foster care system, attending special education classes, and living in our juvenile detention facilities have undiagnosed FASD.  According to a U.S. government report from 2000, it costs taxpayers $1.2 billion dollars annually to fund these special education classes and juvenile justice programs.  Many of the young people wandering homeless on our streets and locked up in our federal prisons also have undiagnosed Fetal Alcohol Spectrum Disorders. 

There is no cure for FASD.  Our hope comes from prevention by creating awareness and educating our preteens, teenagers, and young women of child bearing age, about the dangers of mixing alcohol and pregnancy. 

We must inform and train our educators, social workers, and those working in the juvenile justice system about FASD.  We need to educate our lawmakers and provide programs that support the special needs of these disabled individuals and their families.

Thank you for taking the time to visit our website.  We hope that you will read our story and spread the word about FASD.

Thank you!
Jan & Joshua Crossen

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