Gabby Prieto is five years old. Her preschool teacher reports that she is one of the best-behaved kids in her class, and, true to big sister form (her little sister Lucy is three), she’s even started taking new children at school under her wing, showing them where things are and how things are done. Gabby also happens to have Down syndrome.

When Gabby was born, her mom, Heather, encountered a mass of outdated—and depressing—misinformation. But she overcame discouragement by educating herself and reaching out to other families affected by Down syndrome. Empowered by better information and encouraged by advances in genetics and neurology, and innovations in teaching and therapy techniques, Heather Prieto became the leader of her local support group, and in 2004, they founded the Down Syndrome Information Alliance (DSIA), helping countless other local families realize their childrens’ full potential.

After serving as the organization’s president for nearly three years, she recently became the DSIA’s first Executive Director. Heather also works for the Sacramento County Office of Education Infant Development Program as a Parent Leader. I asked this busy mom to share her story with us, and she found some time one night, between putting the kiddos to bed and getting back to work.

SP: How did the Down Syndrome Information Alliance get its start, and what inspired you to take such a leading role in its creation?

I had been the support group leader for about 2 years, holding meetings in my home. We had a new family join us from Ohio, where they came from a pretty organized and formal organization. I had wanted the same thing for our families here but had no idea how to get it going.....so along with other parents and grandparents, we organized the DSIA.

We provide resources and support to families and professionals who are affected by DS. We have a New Parent Guide and our book, Whispers of Hope, that we provide to all newly diagnosed parents and to professionals. It has current and positive information about Down syndrome. We also have our monthly family nights, where families can get to know each other and learn more from each other, and our quarterly education meetings, where we bring in speakers on various topics (educational issues, feeding, nutrition, behavior, etc.). We also make scholarships available for our families and professionals to attend the national conferences.

SP: So many people tend to define kids with special needs by just their special needs. In what ways is Gabby like any other preschooler?

She is more like others than she is not.....she participates in all activities at school (small group, large group, individual work time, outside time, etc)… She is independent, feisty, sneaky and is your typical five-year-old. Her biggest delay is speech....although her three year old sister knows everything that she says.

SP: As Gabby's mom, how do you strike that balance between striving to help her live up to her potential (with therapy sessions and high expectations, etc.) and allowing her the freedom and ease to have a happy childhood?

I think that comes from how I am as a parent. I have high expectations for both my kids....I expect them to be polite, mind adults, pay attention in school, etc…I am lucky in that Gabby adores all of her therapists and loves to spend time with them. She does not see it as work. When she was younger, she had a hard time with physical therapy (she would spend the whole hour crying and fighting the therapist). It was just not working for our family, so her case worker and I reviewed our options and got her into warm water therapy, which she LOVED! I do want her to look back on her childhood and have great memories. That is why instead of summer school, we spend our summers traveling and visiting family. I know she will learn just as much from those experiences as she would from school. But, each family is different. This is what works for us.

SP: The DSIA recently held a fundraiser, Celebration of Hope, at the UC Davis M.I.N.D. Institute. How did that go?

The Celebration of Hope went great! We raised roughly $10,000. This money will be spent on our New Parent Guides (we hand out about 100 per year at about $25 a binder), bringing out speakers for our families and professionals, and sending parents and professionals to national conferences.

We enjoy working with the M.I.N.D. Institute because they are doing important research into neurodevelopmental disorders and so much of what they do has the potential to impact people with Down syndrome in a positive way. Our medical advisor is a faculty member and the leadership at the M.I.N.D. Institute supports our activities by sponsoring events such as the Celebration of Hope and our quarterly educational meetings. We also work together to recruit people with Down syndrome for studies.

SP: What advice would you offer families who have a child with Down syndrome?

My advice would be to take your baby home, love them and treat them as you would your other children. Children with Down syndrome are capable of doing whatever you expect them to do if you give them the tools and support that they need.