Brittany Allred’s brother with Down syndrome piqued her interest in Down syndrome adoption and led to her welcoming her son Matteo through NDSAN.
Lisa Montoya adopted her two-year-old son Crew with Down syndrome after adopting two other children through foster care. “As a child, I remember begging my parents to adopt a sister or brother with Down syndrome,” she explained. “I’ve always had a heart for special needs.”
For both Allred and Montoya, Down syndrome adoption has proven to be a joy-filled and special process, but one not without hurdles and heartache.
Here are some insights that these families have learned from their adoption process and advice they would give to others:
Do Your Research
Many children with Down syndrome have other health conditions like sleep apnea, vision problems, hearing problems or heart issues, so initial research can provide exposure to the child’s potential lifelong medical needs.
“Solely because of his diagnosis, there are a lot more people in the medical profession who want to follow our son’s condition. For example, at his six-month wellness visit, they scheduled Crew for a visit to oncology because he has a higher risk of leukemia,” said Montoya. “We tried to prepare as much as possible but also go in with an open mind and a willingness to learn.”
“At NDSAN, we counsel people considering adoption to get involved in their local Down syndrome community and participate in events like the Special Olympics, ahead of time,” said Thompson. “The whole family can get involved in learning about Down syndrome.” She has seen entire families undertake 5K or buddy walks to raise money and awareness for Down syndrome, which simultaneously excites their other children about adopting a sibling with Down syndrome and opens space for dialogue about Down syndrome.
Prepare Your Family
“When we started to adopt, some people weren’t supportive right away. Their main concern was our bandwidth,” said Montoya, who already had four other children at the time. “Once we brought Crew home, that dispelled many of their concerns. Our friends and families couldn’t love him more, and it’s made our kids compassionate to others like Crew.”
Allred said that the biggest challenge of adopting and parenting Matteo was watching him in his first few weeks of life face severe health conditions that threatened his survival. “It was hard for my children because they didn’t meet him for the first three months. My youngest who was three at the time, felt like this baby was taking Mom away,” Allred explained. “But once we brought him home, our children were enamoured with him and wanted to play with and love him. We never treated Matteo any differently from the rest of our children.” Allred continued, “Adoption is now part of our regular vocabulary. The hardest part has been working with my children on their fears for Matteo’s safety due to his health conditions and frequent trips to the hospital.” She mentioned that one of her children attended therapy to process the emotions regarding Matteo’s health risks.
Find Your Support System
Whether navigating medical complications, family dynamics or school systems, Down syndrome adoption can present many new questions for families to consider.
“Parents of Down syndrome adoptees form a tight-knit community,” said Montoya. She enjoys the closed Facebook group run by NDSAN, which allows parents to connect with fellow adoptive families.
“It's helpful to have a sounding board where you can ask if other people are experiencing the same thing,” Allred said. Allred also articulated the value of local community support and connections with the Down Syndrome Association of Houston. “We had a lot of people supporting us,” Allred said. “I had a woman in my neighborhood who offered to pick up and drop off my daughter from preschool. Some people said, ‘Teach me how to do his feeding tubes, so you can get a night away,’ since we couldn’t hire a typical babysitter.”
“Our local Down syndrome network was helpful, too, for getting on lists for waivers to support him as an adult,” continued Allred. “It was easy to find resources whether they be mom retreats or fundraisers that were in our area.”
Seek Out Financial Support
Private special needs adoption is not cheap and may range from no cost (for example, in the State of New York) to upwards of $25,000. In addition, children with Down syndrome may need supplemental therapies, treatments, and educational accommodations. “We do try to help families afford the adoption process,” said Thompson. “Many agencies reduce their fees for Down syndrome adoption, and several grants may cover a good portion of the fees."
Families can access Adoption Assistance Programs (AAPs) through their state and may simultaneously be able to explore employer assistance programs and fundraising options.
“Matteo qualifies for Medicaid, a monthly subsidy, and free junior college through the State of Texas because he is considered a special needs adoption,” explained Allred, who also received a grant from Glad Adoption.
Enjoy Precious Family Moments
For these families who have adopted children with Down syndrome, it has been easy to integrate their new little ones into daily rhythms. “We’ve made adjustments as a family. For example, we’ve made therapy schedules to align with when our other kids are at school,” said Montoya, “but overall, we don’t feel like we’ve had to sacrifice anything since Crew joined our family.”
Montoya and Allred both have open adoptions and keep in touch with Crew and Matteo’s birth families. “I have a Google album that I use for sharing photos, and we do yearly visits,” Allred said. “We share videos of special moments, like when Matteo started walking, and we maintain open communication.”
Montoya concluded, “Adoption hasn’t always been easy and timelines in the process have sometimes been unpredictable. But gaining our son is the greatest blessing, and we’ve seen the character of our whole family grow as a result.”
ABOUT THE AUTHOR:
Leah Sutterlin works for the National Council For Adoption and specializes in issues facing adoptees and adoptive families. She graduated from the University of Pennsylvania and currently lives with her husband and daughter in Cupertino, California.
Read the article here.