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Maternal, Child and Adolescent Health Division

Publish Date (Revised)

December 27, 2019

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“...I’ve seen her not only face these challenges, but take them head on and be the best mom that she can be for Brooklyn.”

— Home Visitor Stacey Souza

Monique’s Story: From Mother to Special Needs Advocate

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Two-year-old Brooklyn scampers around the room, smiling from ear-to-ear and stopping more than once to give her mom Monique a hug. The youngster exudes warmth and happiness, and it’s contagious to those around her.

The popular toddler has many fans, including 900+ followers on her Facebook page, "Love Doesn't Count Chromosomes." The posts promote support, resources, positivity and acceptance of children and adults with special needs.

Monique started the page when Brooklyn was born and diagnosed with Down syndrome. Sharing their story and showing her daughter's progress allows this mom to spread messages of hope and love to those who find themselves in similar situations.

This first-time mother found her own support through the voluntary Solano County Nurse-Family Partnership, one of 24 California Home Visiting Program sites, which she joined when she was just a few months pregnant. She was paired with Stacey Souza, a home visitor who quickly became her "rock" and someone she "could talk to about anything."

"Finding out that Brooklyn had Down syndrome was hard for me," says Monique. "I didn't know who I could reach out to, where I could go. Thankfully, I had Stacey and she was able to help me through the process (of accessing services), which was really good."

Turns out, Stacey was a perfect fit for this family, having raised a special needs child of her own. She provided Monique with the information and coaching all home visitors give to their clients, plus referrals and resources to access the services that would benefit Brooklyn's physical, emotional and cognitive progress. While the home visitor and client bond is typically strong, there was an even ​deeper connection between these two women.

What Stacey understood, but is often hard for families and friends to grasp, is that having a special needs child includes an array of specialists and appointments; physical, speech and occupational therapies; and constant watchfulness for safety and related health conditions.

"She was doing a wonderful job, but being an advocate is emotionally and physically exhausting and I would validate that to her, telling her, ‘You've got to take care of yourself because you are her advocate,’" Stacey says.

"How Brooklyn handles her situation when learning has given me a better outlook, so I decided to go back to school," Monique says, explaining that she is majoring in child development with the ultimate goal of starting a business that supports individuals with special needs.

"Monique is unbelievably resilient," Stacey says. "She's had a lot in her life that has been challenging, and I've seen her not only face these challenges, but take them head on and be the best mom that she can be for Brooklyn."

Having Brooklyn has made her a better person, Monique says. "I really opened up to the person I know I can be because she is so outgoing. I watch her and I'm like, 'If she can do it, I can do it.' She's really taken me to a whole other place in my life."

Monique shrugs off "I’m sorry" comments from strangers on the street when they notice Brooklyn has Down syndrome. There is nothing this mother is sorry about. "Brooklyn is definitely my inspiration. Sometimes I watch her and I just cry; I can’t even believe that this is my daughter. I still think it’s a dream. I love her to pieces."

Early Start: Intervention and Support Services

The California Department of Developmental Services (DDS) supports individuals with developmental disabilities. Services are provided through 21 nonprofit regional centers, such as the one Monique and Brooklyn were referred to by their home visitor, Stacey.

"When there is a developmental concern, a referral to the local regional center is the first step in having the child evaluated for eligibility and assessed for Early Start services," says Elise Parnes, R.N., M.S.N., a nurse consultant with DDS.

Early Start is a family-centered program for infants and toddlers where teams of service coordinators, health care specialists, parent resource specialists and other medical and social care experts collaborate to provide appropriate early intervention and support services.

Parnes adds, "With a timely referral, the child and family will have a greater opportunity to benefit from early intervention services and the possibility to improve the child’s developmental trajectory."

What is Home Visiting?

Home visiting is a voluntary program that pairs pregnant and newly parenting families with a nurse or trained professional who makes regular visits in the participant’s home to provide guidance, coaching and access to prenatal care and other health and social services. Home visiting is preventive intervention focused on promoting positive parenting and child development, with the ultimate goal of strengthening families and communities.

For more information about home visiting, visit California Home Visiting Program.

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