Judy Vorfeld’s Office Support Services

A Fresh Look at Fetal Alcohol Spectrum Disorder
by Donnie Kanter Winokur

It’s going to last a lifetime. Everyone said “Don’t worry, she will outgrow that.” Your gut told you otherwise. Family members consoled you, “Oh, every boy acts like this at four!” That’s not what you thought.

Friends offered, “That’s nothing! You should see my son.” While said with good intent, you are left feeling dismissed and unheard. Invalidated. Still worried and no diagnosis in sight! What’s going on?

Babies exposed to alcohol while in their mother’s womb may be born with Fetal Alcohol Spectrum Disorder (FASD). Similar to the Autism Spectrum, FASDs range from mild to severe in their impact on an individual and family’s life. The effects may include physical, mental, behavioral, and or learning disabilities. Ninety percent of fetal alcohol-affected kids look just like your neighbor’s kids. Until you spend time with them.

FASDs are “hidden” disabilities. The prevalence of FASD is 1 out of 100 live births in the U.S. Yet this lifelong disability is greatly misdiagnosed and only rarely recognized for what it is. Accompanying organic brain damage from alcohol exposure means there are usually other disorders, such as:

• Attention Deficit Hyperactive Disorder (ADHD)
• Obsessive-Compulsive Disorder (OCD)
• Sensory Integration Disorder (SID)
• Oppositional Defiance Disorder (ODD)

Average or above I.Q. disguises impaired intellectual disability, creating false impressions of capability. Because FASD is so unfamiliar, many kids go undiagnosed when early intervention can be so helpful!

The cultural stigma attached to alcohol prevents many doctors from informing their patients about the risks of drinking while pregnant. There is no known safe amount, time, or kind of alcohol that can be consumed during pregnancy. And this disability is 100% preventable.

As a mom of a child with FASDs, I advocate for my son every day. Through him, every aspect of our life is shaped with unique questions. We struggle finding answers.

What helps? Some people think that labels signify worth or value, and don’t want one attached to their children. In my mind, as with clothes, a label or diagnosis of FASD tells others that my child needs to be “handled with care.” Without the appropriate label, our kids are given plenty of others:

• Lazy
• Defiant
• Dumb
• Difficult

Sharing the truth allows others to support my son and strengthen his self-esteem. You can only empower your children when you yourself are comfortable with your own reality.

There is never any shame in telling the truth. And that…lasts a lifetime.

As a direct result of obtaining the first FASD Assistance Dog in North America for her son in early 2008, Donnie Kanter Winokur has begun to present to national experts on the unique benefits of providing service dogs for children with FASDs. She has contracted to speak internationally at disability-related conferences within 2009-2010.

Donnie has been a unique presence in Atlanta’s communications arena for over 25 years, as a speaker, producer, creative director, and writer. She has now turned her focus to helping raise awareness and prevention of the devastating disorder that affects her son, her family, and every community. Read more about how FASD children can be helped by specially trained service dogs at 4 Paws for Ability, and see more photos of Iyal Winokur with his beloved service dog, Chancer.

This entry was posted on Thursday, January 29th, 2009 at 9:37 pm and is filed under Animals, Community Service, Disabilities. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.