When Heather Haskin delivered her second child in the hospital, she was told that her baby boy had Down syndrome and, furthermore, he would need an operation to repair a hole in his heart. Heather was grief-stricken. Not only was she worried for her baby’s survival, but nine months’ worth of daydreams about who this child might be and what he might accomplish seemed to suddenly collapse. “You think all you’d hoped for, all those dreams—of your child maybe becoming a doctor or a football star, or whatever—are gone, but,” she soon realized, “all those things we hope for aren’t real.” Her son was real. And, more than anything, she wanted to know that he would be okay and that her family life would go on, as happy and hectic and wonderful as it had ever been. Instead, a doctor told her, “You don’t have to take him home if you don’t want to,” and she was given a book, ten years out-of-date, cataloguing all the health problems her son might suffer and all the ways his abilities would be limited.

Heather, who holds a BA in Child Development from CSUS and had over twelve years of experience working in Special Needs before becoming a mom, describes the information she received that day as “outdated” and “not balanced.” As a former Early Intervention Specialist, she knew a lot more could be done to help children with Down syndrome if their parents were encouraged to demand more of health care and educational professionals and taught to expect more from their children.

Where was the information about nutrition therapy or the importance of building self-esteem in children with Down syndrome? Where was the news about recent advances in educational and therapeutic techniques? What about these kids’ “huge memorization capacity,” as Heather describes it, or their aptitude for visual learning? Furthermore, where was the encouragement, the hope, the support for parents? Where were the inspiring stories of individuals with Down syndrome who have shattered stereotypes and defied statistical averages by living lives that are way beyond most people’s expectations and far above average? And where was the joy, the celebration, for the fact of this new little person who had come into their lives, despite the fact that doctors once told Heather she would never carry a pregnancy to term?

In October of 2005, just seven months after Malachi’s birth, Heather founded the National Down Syndrome Coalition in order to educate, support and inspire families touched by Down syndrome in all the ways she wished someone had done it for her family. Because of her experience, NDSC’s New Parent Program is particularly close to Heather’s heart. “We consult with families when they receive the diagnosis of Down syndrome, prenatally or postnatally. We offer them positive and encouraging support, information, and resources (which we are currently translating into Spanish).”

With her first child, Justus, she remembers how the hospital room overflowed with flowers and cards and well-wishers. Not so when Malachi was born. “It took us five days before we even got a ‘Congratulations.’” And while she understands that many of her friends and family were simply unsure how they should respond, their silence stung her at the time. Heather says she understands the pain new parents feel when first faced with the diagnosis. “I want these families to know it is perfectly natural to grieve, but that their child can and will achieve many great things in their life.”

With this in mind, Heather purposefully makes her visits with the families as joyful and celebratory as possible. “We give them a Congratulations Basket filled with baby products, a few homemade items [like a quilted baby blanket or crocheted booties], a New Parent resource folder, our Highlights DVD [with pictures from the NDSC’s last year full of family outings and events]... Our main focus is to encourage and inspire families in knowing that they have been given the biggest blessing of all in having a child with Down syndrome. Their [family’s] newest member will change and transform their lives for the better!”

Heather is passionate on this point: “These children were made for greatness,” she says. “With any child, if you set them up for failure, then they’ll fail, and if you set them up for success, they’ll succeed.” Today, at 2½, Malachi is as mischievous, curious and energetic as any toddler. A scar across his little chest tells the story of his heart operation early in life, but far more noticeable are his great big blue eyes, and the way he keeps his mama on her toes exploring everything he can possibly get his little hands on. “I feel blessed,” she says, “God found me worthy enough to be the one, he found me worthy enough to be Malachi’s mama!”

Heather describes her leadership role and her community service with the National Down Syndrome Coaliton (NDSC) as a calling. It’s “what I was meant to do,” she says. “Parents need to demand more for their children… We haven’t believed in them enough. I think we’ve set them up for failure.” She tells me the story of a little girl with Down syndrome whom she used to work with, and how that child’s ability to express herself lay trapped insider her, without the kind of intensive speech therapy she needed. “I see it in her eyes… I see her potential…” She wipes tears from her eyes, holds her hands to her heart. “It makes me cry just thinking of how we’ve failed these children… I get really upset with parents who just give up.”

The NDSC is based in Roseville, but its mission statement reflects its commitment to helping families across the country through its website and by encouraging grassroots chapters to grow in other regions. Looking at all the programs Heather supervises and organizes (including bi-monthly “Mommy and Me” playgroups, monthly “Let’s Get Together” socials, quarterly Educational Seminars for parents, and the New Parent Support program), I wasn’t surprised to learn that Heather was recently chosen to receive an award from Exceptional Parent Magazine. The award ceremony took place on Disability Awareness Night at Raley Field in Sacramento.

I asked Heather what the award meant to her, if it gave her any encouragement to keep doing the work she does. “I’m just humbled,” she says. “I’ve never been awarded anything… It does give me a little encouragement. It gives me a little boost on those nights when I wonder, ‘Am I really making a difference?’” But as she launches into a description of the camping trip for families she organized this year, and how much fun everyone had, and how they’ll definitely repeat that event next year, and as she describes all the plans she has to expand services through the Coalition with Sibling Social Events, more guest speakers and new activities, I realize that while Heather Haskin certainly deserves every boost she can possibly get, she really doesn’t need one. That’s because her a passion and enthusiasm are inexhaustible. I realize too just how lucky she really is to be Malachi’s mama. I realize how lucky Malachi and Justus are to be her children. And I realize how lucky I am to live so close to them.

The National Down Syndrome Coalition provides resources, support and smiles to families in Sacramento touched by Down syndrome. To find out more, call 916-532-4773 or visit www.NDSCoalition.org.

NDSC’s 3rd Annual Buddy Walk Takes Place October 6th
The Buddy Walk helps raise awareness and promote inclusion for individuals with Down syndrome. It also provides support to local families. Whether you walk as an individual or form a team, you’ll have fun and feel inspired at this community event. Volunteers are still needed and welcome. The Buddy Walk begins at 10:30am, with festivities following from 11am to 3pm, at Regional Park in Auburn.