A Mother's Story of Raising Her Child with Down Syndrome

One mother's journey, bumpy for certain, but ends with acceptance and Seeing Beyond Disability.

As a 30-something living in New York City, Gina LeVeque had an exciting career in journalism, a passport with stamps from Italy, and a long-term boyfriend. To an outsider— and even to LeVeque at the time— her life looked picture-perfect.

When LeVeque learned she was pregnant in the fall of 2007, she and her boyfriend celebrated. They talked about getting married and building a family.

But during a doctor’s visit that October, LeVeque— like hundreds of other expectant moms in the United States today— received news that would shake her seemingly idealistic world: Her child, which she had been carrying for about 14 weeks, had Down syndrome.

Aging Parents Fear the Future

Jessica Funkhouser’s specialty is putting together small clamps that attach conduits to the wall, but she has big dreams. At 28, she likes dragons and dinosaurs, heavy metal music and history. She wants to be a writer.

Tom Funkhouser and his wife,
Patti, right, with their daughters
Lori, 24, in pink, and Jessica, 28.

At Pride Industries’ Auburn workshop in California — where her father, 61-year-old Tom Funkhouser, a Navy veteran and Hewlett Packard retiree, works as a production trainer across the floor from Jessica’s work table — she puts on her turquoise earphones and deals with the clamps.“I usually just do clamp, clamp, clamp," she said.But she’s working, and she likes that.When she was born with a rare genetic disorder causing developmental disabilities and physical challenges, doctors told Tom and Patti Funkhouser that their tiny, dark-haired daughter would never walk or talk. She probably wouldn’t even survive childhood, doctors said.

Meditation Can Provide Perspective to Parents of Children with Special Needs

From Huffington Post's Eden Kozlowski, Founder and CEO of Just Be Meditation.

I am the mother of a child with special needs. My daughter is 11 and was born with her brain's prefrontal lobe not fully developed. The condition is called pachygyria. If you Google it (which is the first thing I did when we were given our official diagnosis), you will be presented with a stifling litany of sites professing the medical challenges and potentially dire possibilities.

The current reality for my daughter: She is physically agile but has fairly extensive learning delays and mood highs/lows... and, at this point, we are seizure-free.

Now, on the other side of my life, I am a long-term practitioner and teacher of meditation and mindfulness. With all of the challenges presented with my daughter, I can honestly say that this practice has been my saving grace. I've had periods of anger and deep frustration but never to the point of sheer depression or hopelessness. Every time I felt like I was at a point of no return, it always pulled me forward with new direction, hope and perspective.

Virginia Families Fear Future Without Institutions for Their Chidlren

Adam Bertman at the Northern
Virginia Training Center in Fairfax.

On his bad days, Adam Bertman would crush light bulbs with his bare hands. He once launched the heavy lid of a toilet tank down the stairs, striking a caregiver.One of his worst days came in fall 1998, when Bertman, who has autism and brain disease, became upset while out for a supervised walk. He started throwing rocks at cars and was so out of control by the time police officers arrived that they pulled their guns.
That was Bertman’s life before he entered the Northern Virginia Training Center in Fairfax, one of the commonwealth’s five state-run institutions for the developmentally disabled. It was before he developed relationships with the center’s staff members, who have learned to read his body language for signs that he is becoming agitated.

But now, as the state prepares to close four of the five centers and move their residents to community-based group homes, his mother, Judith Korf, worries that Bertman, 41, will end up in the same situation again.