Two weeks after Adelia was born, a genetic test showed that she had Down syndrome. Her mother, Renee, felt fear of the unknown, of what lay ahead for her daughter.
“I had no idea what a child with Down syndrome could accomplish,” Renee said.
Despite living outside of Houston, the fourth most populous city in the United States, Renee said there weren’t many people in her close community to whom she could reach out to for the questions she had. Her sole source of information on Down syndrome was the Internet, but what she found didn’t ease her worry.
After searching for answers, she decided to reach out to Easter Seals. Then everything changed.
After being referred to Easter Seals Greater Houston by both the local Down Syndrome Association and the hospital where Adelia was born, Renee decided to schedule an evaluation.
When Easter Seals visited her home, which made the experience so much more comfortable and easy for the new mom, she found what she was looking for – hope.
“The [staff] took their time and explained everything about what the services were,” said Renee. “It made me feel a lot better. At first you have no clue; it’s such a learning curve. You have a child with special needs and it’s nice to have someone to help you out and point you in the right direction.”
Adelia has been coming to Easter Seals since since she was 2 months old. From the very beginning, her therapies have been dynamic and tailored to her needs exactly. And she has made such significant progress.
She met her physical therapy goals – sitting up, rolling over, and walking for short distances. While her endurance doesn’t allow her to walk for lengths at a time, Adelia loves to climb, slide, and play along with her siblings. Like so many toddlers, she loves bouncing around in her ball pit.
She is also partially deaf and has tongue-tie (a condition where the frenulum of the tongue is short or extends too far, affecting oral motor skills like speech and eating) so she needs speech therapy and is learning to sign. About a year ago, she could sign around 20 words. Now she can sign up to 50, including 2 and 3 word combinations, making asking for more milk and expressing ‘I love you’ so much easier.
In addition to Down syndrome, Renee said Adelia may have a dual diagnosis of Autism Spectrum Disorder, though it’s difficult to know as many of the behaviors associated with Down syndrome and ASD are similar. She hopes to have a full evaluation for Adelia when she transfers to public school to know for certain, and Easter Seals has been able to answer questions about the connections along the way.
On the horizon are many goals Adelia will begin working towards (and no doubt achieving). One such goal is learning the Picture Exchange Communication System (PECS), a form of speech therapy that allows children to develop communication skills through the exchanging of picture symbols with a partner to express desires.
“We’re on her time, that’s for sure,” said Renee.
The staff at Easter Seals work hand-in-hand with Adelia’s big, loving family to ensure she has the happiest, healthiest start to life.
An especially exciting time for Adelia is during the summer, when her siblings are home from school.
From playing around in the water to stay cool, to going to parks, Adelia is able to be surrounded by her brothers and sister who spoil her and help her hit her milestones by simply playing with her.
“They all help in their own ways,” Renee said. “They help teach [Adelia] how to walk and are trying to work on feeding exercises and play. I don’t know what I’d do without having all the kiddos around that’s for sure.”
When the summer winds down, Adelia will attend a Preschool Program for People with Disabilities, where she’ll get to socialize with her peers.
Though Renee said it will be a bittersweet transition, she knows that her Easter Seals case manager, Lauren, will make the transition easy.
Looking beyond the immediate future, Renee just hopes her daughter will live a happy life.
“The same as any other parent, special needs or not, the only thing you want for your kids is to be happy. That’s all you can wish for.”
Thank you to national for writing this story, Easter Seals Greater Houston is proud to have served Adelia and her loving family.