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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.
A Mother’s Love for Her Family
By: Butch Bouchard
Krista Bouchard considers herself to be a typical wife and mother. Krista has been happily married to her husband Butch for 17 years and they have two, wonderful children, Travis a 13-year old Cornerstone Academy student and Macy an 11-year old at Crossroads School. Krista is a wonderful mother, but describing Krista as a wife and mother does not begin to describe her. Krista is a smart, capable and compassionate woman who is driven to help others. Krista is a tireless volunteer, an advocate for children with disabilities, an unofficial counselor to other moms of children with disabilities and a friend and confidante to many.
After receiving a BBA from University of Texas and an MBA from the University of Houston, Krista traveled the world working as a management information systems consultant. When their 2nd child was born, Krista retired from her career as a consultant and dedicated herself to learning as much as she could about Macy’s disabilities and how to help Macy reach her full potential. During the course of learning about the resources and options available to Macy, Krista quickly discovered that there were many disabled children and families with limited resources and unmet needs that did not know where they could turn for help.
Krista began her disability volunteer efforts by helping other parents advocate for their educational rights at school and helped start a moms group for parents of kids with special needs in West Houston. After determining that public school was not able to meet Macy’s needs, Krista homeschooled Macy learning and experimenting with the educational resources available for special needs children. Krista also served on the Board of the Family to Family Network and attended their disability leadership networking program. Because of her strong sense of empathy, Krista has always been a resource and counselor for other moms. Most recently Krista served as the chair of Easter Seals Walk With Me. In addition, Krista volunteers at Cornerstone Academy, Crossroads School and Memorial Drive UMC and with the Girl Scouts and Boy Scouts.
Meet Kira - Easter Seals Greater Houston's first service dog
Kira was born on 9/11/2014 and was auctioned at Easter Seals' annual Halloween ball, The Bash: A Halloween Happening, to help raise funds for its Veterans Services. Through this program, Easter Seals Greater Houston and MyServiceDog.com are working together to train and place service dogs with disabled veterans.
Kira was Easter Seals' first puppy to train and place with a veteran. Chris Robertson, a former helicopter engineer and disabled veteran, is the proud owner of Kira. Chris is a single dad with a 13-year-old son. In his spare time, he loves to fish and hunt, which Kira will be helping him with once she is fully trained.
Special thanks to John Eagle Honda for their continued support! John Eagle Hondas 2014 Holiday Campaign was a huge success, raising $22,250 to help support Easter Seals Veterans Services.
"Easter Seals therapistst are truly our biggest support system."
January 21, 2015
By: Ashley (Eli’s Mom)
ECI has been a part of our family since before our first child was born. After a long fertility battle and a pregnancy against the odds, we discovered that our unborn son would come to buy prednisone pack online. Eli was born 5 weeks early but perfect and healthy. We were immediately put in contact with ECI and they have been in our home since our son was 3 weeks old. They are an essential part of our family and we couldn't imagine life without them. Our therapists are truly our biggest support system- offering encouragement, innovative ideas, and genuine love for our family. I had originally imagined ECI being an inconvenience and a strain on our family, but it has been one of the best things we could have done for Eli. They are a collaborative team and have become part of our family.
Eli is now 3 years old and will be going into PPCD soon. It brings me to tears that we have aged out of the program and won't be seeing the people that have become part of our lives anymore.
Our district evaluators are so impressed with Eli- he's worked hard and achieved so much in 3 years. His easy transition wouldn't be possible without our ECI therapists. Eli is one smart cookie and we wouldn't have unlocked his full potential without Easter seals!