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posted: 4/10/2014 4:29 PM

A grandparent's voice

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By Sherry Manschot

"I am a proud grandmother!" bursts Maria Pierotti of Oswego. Maria has seven grandchildren, one great grandchild and another one due to arrive in May. While certainly proud of all her grandchildren, she was excited to talk about one grandchild in particular, Julia, who lives in Bartlett.

Julia is 19 years old and has Down syndrome. "She is just marvelous. She is a beautiful human being; always patient, happy, and helpful," continues Maria. "Julia is such a joy!"

One day 19 years ago, Maria got the phone call from her daughter, Linda. Doctors had just told Linda that Julia had Down syndrome. "It was such a shock. My daughter was a new mother, just 22 years old. This was her first child. We didn't know anything about Down syndrome," remembers Maria. "Thankfully, Julia was healthy and alert."

Carla Stough of Glen Ellyn, grandmother of 22-year-old Anna, who lives in Wheaton, also remembers getting that same call from her son-in-law. "It's hard when you first find out," says Carla. "You don't know what the future looks like and you worry for your child (the parents) and grandchild."

Whether it's your first or your ninth grandchild, being a grandparent is one of the truly exciting moments of life. It comes with nine months of hopes, dreams, and plans for the future of the newest member of the family.

When you learn that your grandchild has Down syndrome it can be a shock. A whole host of new feelings, ones that you were not prepared for, emerge and so do questions. Like the new parents, there are so many questions about what happens next and what life will be like.

So where does a grandparent turn? In Maria's case, she credits Linda for getting involved right away and getting her involved too. It was especially important for them to get involved with other families who were experiencing the same situations and dealing with some of the same emotions. So wherever Linda and Julia went, Maria went along.

Maria remembers that at first it was difficult not knowing anything about Down syndrome. One of the groups Linda and Maria found themselves involved with was the National Association for Down Syndrome (NADS). According to Ann Garcia, NADS Family Support Coordinator, "we are here to provide resources, information, make referrals and give people connections. We are even here when they just need a sympathetic ear,"

NADS offers parents and grandparents hope and encouragement. They encourage you to remember that a child with Down syndrome is a child like any other and that they will enjoy the same love and attention as a typical child. As your child grows, NADS is there to offer information, support, resources and advocacy about Down syndrome. "We understand that this can be a scary time for grandparents as well as parents. We want to reassure them about what to expect with accurate information," says Garcia. They have a book about Down syndrome that is available for everyone and even have a packet of information tailored to grandparents.

As a grandparent there is an extra layer of concern that surrounds how to support your own children, the parents. Maria says she is grateful to have been able to be there for her daughter, son-in-law, Julia and Julia's two sisters. She was able to go to doctors' visits, be there when they needed someone to listen, cry with them, laugh with them, and help whenever or wherever they needed it.

Carla supports her daughter Beth in similar ways. When Anna was younger Carla would accompany her to doctor's visits, watch Anna while Beth worked and offer respite whenever she could. She also knew how important it was for Beth to spend quality time with her son, Anna's older brother.

Over Julia's 19 years, the family support has never stopped. But it did take a surprising turn. While you might think that it would be the parents and grandparents who are constantly teaching the child with Down syndrome, according to Maria, it is the other way around. "We learn so much from Julia every day," says Maria. "She accomplishes everything she sets out to do. What comes easy for other people just takes a little more effort and commitment on her part. But she gets there."

"Because of Julia, we look at life in such a different way. We know it is going to be beautiful and rewarding", says Maria.

As for Anna, "raising Anna has been a team effort," says Carla. "She goes everywhere and does everything with the family. She is a happy, loving and positive person." Her advice for other grandparents, "just love your children and grandchildren."

You can find more information about all the services offered through NADS at www.nads.org.

• Sherry Manschot is the marketing/public relations manager at Western DuPage Special Recreation Association. She leads a parent network of special needs families at WDSRA. Manschot can be contacted at sherrym@wdsra.com. More information about WDSRA can be found at wdsra.com.

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