Life doesn’t get them down: The life of families with Down Syndrome children

December 10, 2018

“There is no greater disability in society, than the inability to see a person as more,” said spina bifida patient Robert M. Hensel.

 

Elijah “Eli” Keaton became apart of my family June 2, 2008 when he was born with Down’s Syndrome. Down Syndrome, a genetic disability within the 21st chromosome, causes distinct facial appearances and intellectual and developmental delays.

My family took a drastic turn when Eli became part of our 4 person family. We quickly adjusted to the new addition, but no one knew it would change our lives in so many amazing ways.

“When Eli came into our lives, I could just remember my daughter Isabella asking ‘different how?’ How do you explain to an eight year old that her new little brother has Down Syndrome. So, the only thing we could say to describe it was different,” Rebecca Keaton said.

It seemed like the only word I remembered was different. Different seemed as the only answer to my many questions.

The word different seemed to change in definition as Eli grew up. In literal terms, different means that “something is partially or totally unalike in nature” but, to me, different meant walking problems, talking problems, and social problems.

“Learning about Down’s Syndrome was really overwhelming for me, but everything started to fall into place when he came into our lives and basically lit us up. He makes this family whole and his disability has made us realize that there is so much more to life than being perfect,” Rebecca Keaton said.

Eli attends Big Shanty Intermediate school as a fourth grader and works on his pronunciation and enunciation as well as reading. While at school, his teachers work with him on his manners—something Eli currently struggles with.

When I played with Eli, I always struggled communicating with him. I could not understand him most of the time and it made both of us upset. He would scream, throw things, or even hit things, but nothing could compare to the confusing he was experiencing. Me and my family worked hard to help Eli as much as we possible could.

On an NPR interview, family practitioner Dr. Ranit Mishori says that her special needs sibling helped her “see the light or see things differently,” and, likewise, I thought Eli affected my views on everything. It made me realize life it more than a disability.

Isabella Keaton

Much like how Dr. Mishori shared—in her interview—how she struggled with her younger, disabled brother, I also found it difficult to grow up with a disabled brother. I did not know how to reply when friends asked about him since I did not really know myself. I found it most difficult when I did not know when to place the blame on myself, my parents, or even Eli. We struggled for years until Eli finally showed us the light at the end of the tunnel.

Isabella Keaton

HealthDay, a news website for healthier living, says that children with disabled siblings may face problems with personal relationships, psychological issues, school, and starting new activities than did kids without such siblings. Dr. Nicole Beurkens, a child psychologist, writes a personal blog for parents who see these struggles within their children and themselves. She gives parental advice as well as resources for treatments, both natural and medicinal.

Dr. Beurkens says that children with special needs siblings need information to understand the reality. Different, a broad term, did not give me enough information to know the situation. I did not learn until I grew up, but knowing all the facts made me realize why so many things changed.

While it remains difficult for some children to cope with what the situation truly entails, children often will understand more with what is really occurring within their sibling when they know all the information.

Further and extensive research on healthy children with a disabled siblings does not exist currently as some statements usually remain personal to each individual family.

Senior Marcus Perez also has a twin brother, Alex Perez, with Downs Syndrome. His relationship with his brother seems different from other families, but he cherishes the moments dearly.

“Having a special needs brother is definitely different from what other people have with siblings without special needs, but I think it is very special,” Marcus Perez said.

Alex’s personality shines in the Perez household and keeps everyone’s spirits up.

“It’s such a unique experience where they’re always happy. Every day I get to go home and talk to Alex and he’s always so positive and always gives me hugs,” Marcus Perez said.

Through his experience with a special needs brother, Marcus learned to accept many people. He knows not to judge a book by its cover and that the possibilities remain endless for his brother Alex.

“It has made me except more people for their differences and not assume what anyone can do. I know now that anyone can do anything,” Perez said.

While these situations affect families emotionally—in both positive and negative ways—parents and expecting parents also battle themselves when they discover their child will be born with a disability.  The National Down Syndrome Adoption Network (NDSAN) receives about 105 calls per year to place disabled children up for adoption.  Monthly, they recieve 14 calls from nervous women who admit they do not desire to or physically cannot care for a disabled child.

Many different adoption networks specifically for disabled children—such as Reece’s Rainbow—suffer due to the inability of parents to care for such children.

In a discussion thread on the popular pregnancy and parenting website Babycenter, user @kickingandscreaming asked the sensitive and controversial question about if parents would or should place their child up for adoption only because they found that he/she has a disability.

Responses ranged from negative—such as @cmaynerd commenting that it seems immoral for a person to admit he/she cannot handle a special needs child, but can handle a normal child—to positive—such as @MsVPhilli07 commenting that it seems reasonable if someone cannot financially , physically, or emotionally provide proper care for a disabled child.

Overall, the responses seemed to stem from the “ability” to care for a disabled child. Some parents cannot support a child regardless of he/she having a disability, but the question of morality while using a disability as a reason to leave a child seems to sway to one side.

When my mother and father found that their baby boy would be born with Down Syndrome, our family patterns changed drastically. My parents spent many late night discussing Eli and how it would change our lives.

My mother struggled with the news, but she never once doubted her ability to care for him. Everyone knew—and believed—Eli would change our lives for the better.

Even though I struggled with caring for my little brother, he changed my life in many ways. I learned how to accept what life gave me and that things could be much worse. From doctors appointments to therapists, I made Eli my number one priority.

Although the future remains uncertain for Eli and my family, we all know we could not function without our little touch of sunshine. Eli warms my heart as my family works together to keep our family moving. Life gives the gift of happiness and life gave it to me in the form of Elijah James Keaton.

 

“Some of the most wonderful people are the ones who don’t fit into boxes,” special needs parent Tori Amos said.

 
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