Regaining her strength

Alex Coolman

* EDITOR’S NOTE: The following is the first in a four-part series

focusing on the struggles and triumphs of the disabled, their families

and those who live and work with them.

Her first reaction was not one of joy.

When Sandi Ames realized that her newborn daughter, Shanel, had Down

syndrome, a host of other emotions flooded her mind, crowding out any

simple reaction to the birth.

There was confusion and guilt. There was sorrow. And there was fear

about the future.

What there wasn’t -- at least, not initially -- was the kind of

delight that inspires a parent to plan for the future. The pain of those

first moments wounded Ames’ ability to hope.

When you talk to the 41-year-old Costa Mesa resident today, however,

it’s apparent that Ames has regained her strength. And when you watch her

interact with Shanel, who is a vivacious, slightly mischievous

7-year-old, there is a love so fierce that it seems like a physical thing

in the room.

Going from that initial reaction of fear to a position of strength,

Ames said, was not something she could have done alone. She drew on the

experience of another parent who had a daughter with Down syndrome,

finding encouragement and support in her story.

“It helped me open up my doors of understanding to what the

possibilities were,” she said.

WATCHING A MIRACLE

On a recent afternoon at the city’s Downtown Community Center, Ames

watched as Shanel walked gingerly across a balance beam. An instructor

held her hand at times, and at other times she balanced alone.

Like many others with Down syndrome, Shanel has low muscle tone, which

can affect her health and motor skills. But she has kept up in the

gymnastics class, which is not geared specifically toward students with

disabilities.

Ames said this kind of scene -- watching her daughter move with grace

and pleasure through complex physical tasks -- was not something she

thought about before she began to speak with other parents.

It was only through their encouragement that Ames realized that her

ideas about having a disabled child were darker than they needed to be.

“I got a chance to see how my image of the development of Down

syndrome was maybe not a reality,” Ames said.

Not only were there possibilities for Shanel to have a happy life,

Ames decided, but many of those possibilities depended on the attitude

that Ames took toward pushing her daughter to grow and learn.

The sorrow often felt by parents of disabled children can be crippling

at a crucial time in their child’s development, said Linda Smith,

director of Family Support Network, a Santa Ana-based organization that

aids Orange County families.

“These are parents who thought they were going to have a beautiful,

gorgeous baby, and something happened,” Smith said. “They’re grieving,

they’re scared, their dreams have been shattered. It’s a very rough

time.”

A SOURCE OF STRENGTH

What the Family Support Network and other organizations like it try to

emphasize is that parents of special-needs children can learn from each

other, draw strength from each other and help their kids to develop as

much as possible.

“A lot of times, the best support you can provide is just to have

somebody listen,” Smith said.

Ames compares the experience of raising the special-needs child to a

poem, “Going to Holland,” familiar to parents in her situation.

It’s as though you had planned for months and months to travel to

Italy, she said. You read book after book, you learn a little bit about

the language, you buy all the right clothes for the journey.

Then the plane lands, and the captain says “Welcome to Holland.”

“At that point,” Ames said. “You have no other choice but to get used

to it.”

But that doesn’t mean Ames and other parents have to do it alone. Like

the woman who helped her, Ames now serves as a counselor. She volunteers

with a group called Parent Connection to assist other parents of children

with disabilities.

And it doesn’t mean that the experience of parenting has to be any

less joyful than it should be.

Ames couldn’t help laughing at the antics of Shanel in her gymnastics

class, and at her daughter’s tendency to ham it up in the presence of an

audience.

“She’s a little girl with a long ponytail, with a zest for life and a

big smile and an ability to get in trouble,” Ames said, watching Shanel

stepping across the beam. “And oh yeah, by the way, she has Down

syndrome.”

FYI

Here are some places that can help:

Parent Connection, (888) 372-2229

Family Support Network, (714) 543-7600Comfort Connection, (714)

748-7491

TASK (Team of Advocates for Special Kids), (714) 533-8275

Regional Center Family Support Services, (714) 796-5299