On The Meaning of Down Syndrome

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Upside Down is a blog that looks at life through two different lenses, one from the perspective of a person who has Down syndrome, and another from the perspective of a person who does not have Down syndrome. That said, I believe it important to introduce the blog with an extremely brief overview of what Down syndrome is.

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Down syndrome: According to Leah

When I was a baby I don’t know the words and meaning about Down syndrome. My parents tell me about it when I get older and my parents bring me over to talk me all about it the meaning of Down syndrome.

While the baby was born they have to get information and packets of important papers and read and study and learn about everything about Down syndrome. They need to know that when the baby is born I need help with walk, talk, read, and write, and she also not understand her surrounding.

My parents get me a teacher to help me to learn a lot of things I need to know and also go on with my life becoming a wonderful person when I grow up and to know a lot of things in my life and to be a really good role model to everyone and everybody.

There is a lot of types of Down syndrome out there with other people. There is when they are outgoing and some other people not as outgoing and that is okay. We can still do a lot of thing with either and both.

If your own child is born with Down syndrome it is a lot of responsibilities to know all about Down syndrome and a lot of supportive you need. To have a baby that born with Down syndrome is a lot of things to learn about and it also gives a lot of dedication.

When your baby is all growing up it hard to explain the meaning of Down syndrome to talk about it. Not only for one person in the family it also a lot for others and everybody goes through that too. You will go through hard times too.

Down syndrome it means is that is something I was born with and it means it takes me longer to learn things and I have a hard time of understanding things with telling time and also counting money.

 Also sometimes it difficult to me understanding what I am saying too and I have a speech teacher at school to help me to learn to speak clearly and I have a hard time to telling to my family something and I think about it before I say. When I talk to my family and to other people too they are not able to understood what I am talk about too. And I also have feelings too like everyone else too.

Down syndrome is very common.

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SO…what is Down syndrome?

At its core, it’s about genes. Down syndrome typically occurs when an individual has an extra (third) copy of chromosome 21. This is why the medical term for this congenital disorder is trisomy-21. The result of this genetic occurrence is impairment both physically and intellectually. Mild to moderate impairment varies from person-to-person.

Down syndrome is a permanent disorder, however, individuals with Down syndrome are able to live full, healthy, and active lives with proper support and affection.

BRIEF OVERVIEW*:

Potential Physical Attributes:

• Facial features: flat face, slanted/oval eyes, small mouth, large tongue, small ears (which may lead to problems)
• Short arms and legs, small feet, and a short neck
• Low muscle tone
• Heart defects
• Hearing loss
• Celiac disease and Hypothyroidism
• Difficulty with intestinal and respiratory systems
• Behaviors associated with ADHD or Autism

Potential Intellectual Deficits:

• Mild to moderate intellectual disability based on IQ and difficulty learning
• Communication and language
• In severe cases, self-care

* http://www.webmd.com/children/tc/down-syndrome-topic-overview

For more information on the medical meaning of Down syndrome, I’ve included additional websites below.

On a personal level, this post brings me back to first grade at Hitchcock Elementary, when I presented to my entire school, one grade at a time, what it meant to have Down syndrome. I gave a speech, shared pictures, and then brought Leah up to introduce herself to each class. At the end of the presentation, I asked the audience each time if they had any questions. The one moment that I recall is a question that came from a girl in my own class, who happens to be one of my best friends to this day, Alex. Alex raised her hand. I was excited to see someone had something to ask.

“Yes, Alex?”

“So…umm…what exactly is Down syndrome?”

My heart sank. I remember the feeling of disappointment and frustration that rushed through my 6-year-old body. I had just spoken for A LONG TIME (it felt like days for a first grader) in an attempt to explain that exact question.

Bottom line, it’s complicated. But isn’t that the case for most beautiful things in this life?

With a brief description of what Down syndrome is, the next few posts will be on the moments when my parents learned they were having a child with special needs and about raising a child in the 1980’s who has Down syndrome.

Here’s to turning our minds Upside Down.

*Additional Information on Down syndrome:

http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

http://kidshealth.org/en/parents/down-syndrome.html

http://www.mayoclinic.org/diseases-conditions/down-syndrome/basics/causes/con-20020948

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