Saturday, March 10, 2007

Helping Latin families

Down syndrome group aimed at Spanish speakers
By Loni Nannini

SPECIAL TO THE ARIZONA DAILY STAR

Six years ago, Charo Boggian's son, Zoe, was born with Down syndrome.

The new mother felt that no one really understood when she wanted to express her feelings at a support group several months later. She was right: Boggian, a native of Argentina, spoke no English.

"The most important thing when you have a special-needs child you didn't expect to have is to be able to talk about it," said Boggian, who now is fluent in English.

She knew there must be other Spanish-speaking parents, however, who shared her feelings of sadness, guilt and difficulty in accepting her baby. "If you don't speak English in this country, you can't express yourself, and that was very bad for me."

She didn't have far to look. After approaching a nurse at University Medical Center about starting a support group for Latin families of babies with Down syndrome, Crecer Con Amor - Growing Up With Love - was born immediately.

"When we met for the first time, we were three moms and it was amazing," said Boggian, now 33. "I started to speak about my feelings, and one mom said, 'I feel the same way, but I never wanted to say this because people would think I am crazy or don't love my baby, and I do.'

"It was amazing to talk about our feelings and not feel guilty and be afraid people would think we were bad moms. It is positive to have a group where you can speak in your language and tell others about these feelings," she added.

Crecer Con Amor also acts as a link to resources in the community, assisting families in finding available therapies, services and schools for their children. Boggian said that speech, physical and occupational therapies are particularly crucial to children with Down syndrome to aid development in the first years of life.

Boggian said that many Latin parents are unfamiliar with the chromosomal disorder and have no idea how to proceed, primarily because of cultural differences. In their native countries, special-needs children are often taboo: Many don't attend school, and they may not even be allowed in public.

Boggian is determined to educate families about the many local opportunities available for children with Down syndrome and to make parents aware that they play the principal role in their child's therapy and learning.

"When I meet with Spanish families, the first thing I tell them in the hospital is that here things are different," she said. "It is not like our country. Down syndrome children go to school, they take the bus, they work and they even have the possibility to access college. . . . I tell them that if you as a parent make them confident, they can learn. You can't try one time to teach them something. You must try two times, four times, whatever, but they will learn to do it, and that is a very important message."

To reinforce that message, Crecer Con Amor has published a book by the same title. Written in Spanish, "Crecer Con Amor" shares the stories, pictures and experiences of 22 families as well as medical and developmental information. The color book is distributed free through local hospitals.

Haide Lopez said the book offered her and her husband, Ramon Beltran, information and hope when her twins, Yahir and Arath Beltran-Lopez, were born three years ago. Arath has Down syndrome.

"When my child was born, we felt very sad that first week," she said. "We thought we were the only people having this kind of child, and when Charo visited us and we knew about this group, we knew weren't alone."

Lopez said the emotional support can be particularly helpful early on, since many Down syndrome children suffer from heart or lung conditions or other medical problems. She said that the social experiences have also been wonderful: The families meet monthly and have celebrations during the holidays.

Boggian, who was a lawyer in Argentina and is completing a paralegal course at Pima Community College, now considers Crecer Con Amor her "little mission." With aspirations to obtain a degree in women's studies and eventually law at the University of Arizona, she plans to apply the same perseverance to her studies that she applies to her crusade to educate families about Down syndrome. She has come to believe that God gives Down syndrome babies to people who are special, and she loves watching the transformation process as parents recognize the gifts a special-needs child brings into their lives.

"Our children can have a regular life," Boggian said. "Maybe they need more patience and more support, but they can do it. It is great when parents start to believe that. If they believe it, their children will do it."

How you can help

Crecer Con Amor seeks sponsors for various activities for Latin children with Down syndrome, including dolphin therapy. To make a donation or for more information, contact Charo Boggian by e-mail at ajolote26@hotmail.com or (520) 327-3902.

The support group also needs volunteers to assist with the Buddy Walk Oct. 15 at Reid Park. All proceeds will benefit Crecer Con Amor, Down Syndrome Connection and the Southern Arizona Network for Down Syndrome. For registration or more information, visit www.sandsaz.org online or call 520-791-0344.

3 comments:

jennifer said...

What a terrific story of how important one woman's efforts can be!

Thank you!

ajolote26 said...

Thank you Jennifer!

Cheer!

Charo
www.crecerconamor.com

nancyiannone said...

Great job Charo! Do you know of this cite?

http://www.down21.org
(in Spanish)

It's on my research thread on BC - someone provided it. I don't speak Spanish, so I don't know how good it is.