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“It’s not just a phase.”
Written by Donnie Kanter Winokur
January 11, 2008
It’s going to last a lifetime. Everyone said “Don’t worry, he will outgrow that.” Your gut told you otherwise. Family members consoled you, “Oh every boy acts like this at 4!” 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 site! What’s going on?
When a baby is exposed to alcohol while in their mother’s womb, they 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. 90% of fetal alcohol affected kids look just like your neighbor’s. 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 or never recognized for what it is. Accompanying organic brain damage from alcohol exposure, are usually other disorders such as; Attention Deficit Hyperactive Disorder (ADHD), Obsessive-Compulsive Disorder (OCD), Sensory Integration Disorder (SID) or Oppositional Defiance Disorder (OCD). 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. 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 child. In my mind, as in 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 etc. 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.
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