09 September 2015


Today is International Fetal Alcohol Spectrum Disorder Awareness Day. Observed on the ninth day of the ninth month to represent the nine months of pregnancy, the day serves to raise awareness of the completely preventable dangers associated with consuming alcohol while pregnant.

Up until a few years ago, I didn't know this day was commemorated. My knowledge of FASD was limited to a very basic understanding, coupled with the information I gleaned from the very few books my local library had on the subject that I'd picked up out of sheer interest alone. I found it to be equal parts intriguing, terrifying, and devastating, but, for the most part, I didn't think of it often. I didn't have a need to.

Until I did.

This is the face of joy personified. This is the face of unconditional love. This is the girl who greets her baby brother with a hug and a kiss, then takes him by the hand to help him as he tries to walk. This is the girl who sneaks berries from the freezer for herself and her older sister, putting her sister's on the blue plate because she knows it's her favorite. Her laugh, her energy, her heart combine to make her into one of the most incredible people I've ever known.

She is a light in our family that radiates happiness, goodness, mercy, and immovable faith. To know her is to love her and she is so very loved.

Most do not know know she was exposed to alcohol in the womb. As a result of the brain damage sustained from this prenatal exposure, she falls on the fetal alcohol spectrum.

An individual's symptoms will vary, but those on the spectrum typically struggle with poor memory, sensory issues, impulsive behavior, poor judgement, delayed speech, delayed motor skills, and learning disabilities. Sometimes facial characteristics are present, but not always. Our daughter does not show any physical characteristics. Fetal alcohol spectrum disorder is an umbrella term, covering some of the most common birth defects, affecting at least 10 in 1,000 births. They are 100% preventable.

We haven't freely shared this for a few reasons. I've hesitated, in part, because I've not wanted judgement passed on her birth mother. The simple fact is, no woman would knowingly drink alcohol while pregnant in an attempt to harm their unborn child. Some women are unaware they are in the early stages of pregnancy. Some women are unaware of the effects drinking alcohol may have. There is no place for judgement or blame.

Secondly, it, quite frankly, isn't anyone's business. It is our reality, though. Her reality. And there is zero shame in it. That reason alone is enough to speak out.

While it in no way defines her, it is a part of her. The struggles and challenges that come with FASD are becoming more apparent as she gets older, even at almost two-years-old. It is, at times, heartbreaking. She deserves the support of those who will be compassionate and understanding towards her needs, especially when those needs aren't immediately noticeable.

Think for a moment how easy it is to identify a person with a physical disability. They might limp or use a wheelchair. They might be deaf or blind. You notice this and you help when you see a need arise.

It's different with invisible, neurological disabilities. Because my sweet child, and others affected, look typical on the outside, and are even of normal intelligence, it's more difficult to notice a need and help out. Often, they are thought to have a behavioral problem, or simply be acting out, when the truth of the matter is, their behavior is the result of a permanent brain injury and no more in their control than a paraplegic's inability to walk.

Those with FASD need things repeated. They need to be reminded several times because they often lack the ability to commit things to memory. They need patience because, although they might do something every day for ten days straight, they might not remember how to do it on the eleventh. Abstract concepts like time and money are difficult to grasp. Concrete language is critical.

Perhaps most important of all, is compassion. Depending on the severity, a person with FASD is completely aware that they aren't "getting something," though they can't quite place what it is. Imagine the intense frustration one would go through, daily, because things are simply harder for them and no one understands.

I plan to share more about this in the future: more research, strategies, and information. I plan to share our journey here and there as we live it: the struggles, challenges, and triumphs.

My goal in sharing this is to normalize FASD, for my daughter and for others. After all, it is our normal. My hope is that you would extend compassion to those who might seem different from you. We could all do with a little more understanding.

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