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Facing the Unknown


[caption id="attachment_976" align="alignleft" width="225" caption="At 7 months pregnant, I had no idea what the future would bring."][/caption]

I’m a mother of a child who has not been diagnosed with any special needs. And yet, I can relate in so many ways to the fathers featured in the forthcoming documentary, Autistic Like Me. Why I think everyone should help support this filmmaker’s outreach campaign:

When I was pregnant with my son I was 38 years old, 39 when I delivered. For most OB-GYN doctors these days, I was considered high risk due simply to my age. Fortunately I sought out an amazing doctor who answered all my questions directly and factually, and who respected all my decisions with regard to early testing. My doc did not consider me “high risk” because of my age—in fact, he said because I was in good health, active, ate a balanced diet, paid attention to prenatal care, and had no other risk factors, my pregnancy should be considered normal (for whatever that’s worth).

Every book and website out there touts the growing risk of miscarriage and genetic defects as women get older, specifically older than 35—that magic number known as “advanced age.” And many doctors, at least in the New York City area, will not take on a patient of this age without requiring certain tests, including an amniocentesis. I was dreadfully aware of the numbers. At the time, I could quote a myriad of them without referring to a book or an iPhone, for they were imprinted on my brain. I have forgotten them now, thank God, but to give

About kind face

• At age 25, 1 in 1,250
• At age 30, 1 in 1,000
• At age 35, 1 in 400
• At age 40, 1 in 100
• At 45, 1 in 30
• At 49, 1 in 10

That’s heady stuff. Friends and the P.A. in my doctor’s office would tell me that those are still stiff odds. But I knew it was all in the perspective—I mean, really, if someone told me I had a 1 in 100 chance of winning the lottery, I’d take those odds any day. So naturally I worried about genetic defects early on in my pregnancy.

Then I was faced with the prospect of genetic testing—the first trimester nuchal translucency screen, for example, which is a simple blood draw. It’s non-invasive, with no risk to the baby. The results are combined with other factors including age and ethnicity to provide an overall risk factor—essentially, giving you a more personal measure of your odds, and helping pregnant women decide if further, more invasive, tests are in order. I wouldn’t know for sure if my baby would be born with genetic abnormalities—I’d just have more or less of a reason to worry, as I saw it. The more I weighed the options, the more it became apparent to me that I didn’t want to worry at all. My husband and I talked and talked, and knew we would not abort the baby if we discovered anything health-related, so what was the point? I understood (and still understand) all the arguments for women who want to know more—to be prepared emotionally and armed with information should they need to parent a child with a genetic disorder. It’s a highly individual decision. And for me, I decided having faith that my baby would be healthy—balanced with realistic expectations that this might not be the case—was the best approach. I wanted to bask in the glow of my pregnancy (I loved every minute of those nine months, lucky was I!) and have that positive energy transferred to my fetus. Obviously, if I didn’t undergo the early screening, I had no intention of subjecting my unborn baby to the risk—however small—of miscarriage from either an amnio or CVS. My doctor encouraged me to follow that path when he understood my rationale.

 

3 Years Later

Jump now to about three years ahead. My son is a healthy 2-and-a-half, I’m back to work part-time, and all those thoughts of amnios and genetic risk factors seem far in the past. But no one’s ever out of the woods as a parent. Kids can get hurt, or diagnosed with a multitude of issues.



 

Inspired by Fathers in Film

When I first saw the above clip on the Autistic Like Me website, I was moved almost to tears. Not just because I felt so many things for the men speaking—sad, inspired, angry—but also because the transition to acceptance of any special need for our children is enormous. It is human.

In the film, fathers face down their fears and open themselves up, going to very honest and raw emotional places as they reflect on their experiences of dealing with their children’s diagnoses of autism. Filmmaker Charles Jones and one of the five fathers portrayed in the film, Anthony Merkerson of Queens, came to our NYMetroParents offices and discussed many of the topics dealt with in the movie, from how they relate to their children to how their relationships with their wives have been impacted. “I didn’t think my son would ever talk,” Jones said. “I didn’t think he would ever tell me he loves me.”

What resonates with me still, though? The overwhelming love these dads have for their kids, the way they are inspired by them, and proud. They want to make their children’s lives easier, but they love them for the unique individuals they are. “I love this little boy,” Jones says. “Everything he is makes him who he is…I’m in love with him, man. I can’t change that.”

One of the fathers in the video clips says: “Every day is a challenge.” And yet…

 

And Yet…Acceptance Is Key to Moving Forward

In the months I have been editing our newest publication, Special Parent, I have been fortunate enough to speak with many parents of children with special needs. Every one of them inspires me in a different way. And I relate to every one of them in a different way. Like I said, my son has not been diagnosed with special needs. But I recognize what it’s like to face the unknown…to want—desperately—the best for your child…to worry about what may or may not be…to accept, no matter what.

 

Learn More

Special Screening of Autistic Like Me in NYC on April 25

Outreach Campaign Support for Autistic Like Me

Super Duper Perks (more in an upcoming post about the amazing products from Super Duper Inc.!)

Autism Awareness Month News from the April issue of Special Parent

Subscribe to Special Parent

Find activities and events for your child with special needs

The Father Factor: Learn how fathers can better cope with a learning disability diagnosis in their children, courtesy of Smart Kids with Learning Disabilities

 

Dawn M. Roode

Author:

Dawn M. Roode was formerly editorial director of NYMetroParents, where she launched the award-winning semi-annual magazine Special Parent. She was managing editor at Parenting, BabyTalk, Child, Harper's Bazaar, and Latina magazines. She is a strategic content specialist and currently writes and edits parenting, health, travel, and special needs features for various media outlets. Roode is mom to one son and recently relocated from Brooklyn to the suburbs of New York City. Follow her on Twitter @DawnRoode.

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