Down syndrome: Why It Matters?

It matters....

Even if it doesn't affect you directly.

It matters....

Even if you've never met someone with the condition or even heard of it.

It matters....

Even if it doesn't peak your interests.

Why?

Here's why....

Because in the event that you do stumble upon it, you know it is not the end of the world...nor the life you pictured and highly anticipated for yourself or your loved one has inevitably changed for the worse; that the fear of the unknown would not lead to any misguided, life-altering decisions. No, on the contrary, it's just the beginning of endless possibilities; that, like most things, the outcome is very unpredictable.

Because a little knowledge won't hurt and life has its way of catching you off-guard.

With understanding of this medical condition, you know exactly how to respond to the couple who got the news or what to say to parents whose kid has the condition or say to the person who has ir; that pity, prejudice and bewildered stares will no longer be warranted; and the ignorance that comes with casually using the term "retard" will take on an entirely new meaning. Most of all, therein, comes the recognition and acceptance of individuals with Down syndrome as part of society and as an individual all its own treated equally without the stigma and stereotyping that occurs with unfamiliarity. No longer shall it be reckoned that they are any different from you or me but that the difference would be as though they were just of a different race or color, religion, upbringing, socio-economic status, background, etc. Considering that most of us have our own limitations and strengths.

An understanding of Down syndrome allows someone to say, "Hi, my child is three, too. They seem to be getting along pretty well, maybe we could do a playdate?" Or "I'd like to know you." Even better, "Can we be friends?" Or "I understand certain things takes you some time to learn, I'm here to help," You'd know that what they need is encouragement, not for someone to feel sorry for them and then celebrating with them for every achievement made, even the simplest of things. You'd also have the knowledge that they are not 'always happy' or 'smiling'. They also go through roller coasters of emotions and feelings of hurt, pain and unacceptance.

Because behind the seemingly uniform features individuals with Down syndrome share, like everyone else, they all vary in their personalities, preferences, abilities and strengths. It is very important to know, understand and realize that Down syndrome is not a one-size-fits-all medical condition; that the physical and intellectual delays range from mild to moderate. People with Down syndrome have great potential if given opportunities.* Many are thriving and holding onto jobs and have succesful interpersonal relationships.

And mainly because they are PEOPLE like everybody else who are just like you and me going through the same hurdles in life, heartaches and pains of growing up as well as joys and successes. Every milestone or benchmark attained is twice the triumph - overcoming a limitation and doing it with twice as much hardwork than is required. Yes, they may look different, may be delayed in some aspects, needed more help than usual but overall they are first and foremost a PERSON who has every right to a normal existence, be treated as equals and who are not to be disregarded because they have Down syndrome.





*Statement taken from DSG Facts About Down Syndrome

A Wonderful Gift

When I was a kid, (this was in the early 80's) there was this boy who visited our neighborhood. He was nice but very quiet. His features do stand out. The other kids called him 'M'. I never really knew what that meant nor did I even gave it a second thought. All I knew was that here's a kid who just watches quietly while other kids play. I'm sure he wanted to play. I felt sad for the kid because others called him names. I probably should have done something about it. I vaguely remember the rest of what happened. I was just a kid still learning reason back then. I didn't know what Down Syndrome was nor did anyone knew for that matter. He was just visiting.

Years after, little did I know I was going to have a kid with Ds. This memory came to me this week while thinking of what to share on my blog. Interestingly enough, the thought of Ds didn't occur to me 'til we decided it was time to have sweet little angels in our lives. In doing my research prior to pregnancy, discussions about risks came up and age being a factor.

I'm not claiming to be an expert on Down Syndrome. I'm still learning new things about it myself but here's what I know: Before much was known, children with Ds had been deduced into a certain stereotype. Parents were told of what they won't be able to do or what they will never achieve. But guess what? These kids are little miracles who continue to amaze and delight and go beyond expectations. Like any typical kid, each child with Ds is an individual. There may be lots of similarities among them but they all grow and follow a developmental pattern all on their own. At least that is what I'm seeing with my own Olivia. As a parent we worry about when our kid will walk, talk or crawl. Although, certain worries are legitimate, these major milestones, in my opinion are predetermined at birth,

The point being is that children with Ds are individuals and should not be stereotyped. They are much like any typical kid growing - their own personality, likes, dislikes, interests and uniqueness. Like a gift, there is always that element of surprise. And like any typical baby, you know you have a baby but you don't know exactly how they would turn out to be. You can mold them, teach them, guide them, love them,.... in the end they are their own person.

One can rummage the internet and find amazing stories of triumph and achievement of kids with Down Syndrome. DSG of Greater Kansas City was nice enough to give me permission to share this on my blog.

https://vimeo.com/60657246

I'm a parent of a kid with Down Dyndrome and I hope for the best for my Olivia. We want her to achieve the best of what she possibly can. What parent doesn't? It's great to know that others have done well; even greater and that is inspiring and it gives hope - that it's not just black and white for a kid with Ds, there's a gray area of wonderful possibilities.

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Please do checkout dsdaytoday blog. It a good source of info. Thanks!

My thoughts on Down syndrome

Hi, my name is Linda Mackey. I'm a mother of two and a stay-at-home mom. When we heard the news that our second child might have a chromosomal abnormality, we were devastated. It wasn't for sure what it was until the pregnancy progressed. Every symptom pointed towards Down Syndrome. It was a 50/50 chance. We held on to that 50% chance for the longest time. I, for one, held on to it even after my second child was born. It wasn't until the test results came back positive. Honestly, even then, it took me a while to accept it. But as our child grew, it became apparent to me that she is no different than my older child. In fact, they have so much similarities I can now look past her diagnosis. This isn't to say that there aren't any challenges along the way, I mean, which one of us doesn't have any? We all have our own limitations, our own weaknesses and our own challenges in life. We deal with them and when we can we try to overcome them!

Parenting a child with Down syndrome isn't significantly different than parenting any child, in my opinion. Then again, I haven't gone through the bigger hurdles yet that parents with older Ds kids had gone through. So this will be a very interesting journey for me and my family. But you know, my thoughts are these: that it's not so much on how different they are but on how similar they are to any typical child. And for those families less familiar with the condition, I'd like for them to have the opportunity to understand it or even ask questions about it without being intimidated. There's quite a lot of blogs about Ds and kids with Ds. I can name one on top of my head. The great thing about all these is the sharing aspect of information. We're all in this together.

This blog is not to tell my daughter's story (well, I guess in some ways I would) but more so, to share my insights and thoughts about Down syndrome. I would like to invite everyone who stumbles upon this blog to do the same by leaving comments after reading my blogs. You also don't have to have a child with Ds to share your thoughts or know someone with Ds to leave a comment. Everyone is welcome and invited to share! Pass it on!