The most common response I received from others after finding out Austin had Down syndrome was “I’m sorry.” It’s a natural response, I suppose. However, I didn’t need anyone to be or feel sorry. I wasn’t grieving. My child was (for the most part) healthy. I found solace in talking to other parents on the Down Syndrome Message Board on Babycenter.com. It was there that I was congratulated on the birth of my son, rather than pitied. It’s important for people to understand that regardless of any diagnosis, we still have the title of “Mommy.” I was a new mom. My son’s birth wasn’t some unfortunate event that I look back on with sadness. It was the happiest day of my life. I didn’t know if he had Down syndrome or not when he was first born, but it didn’t matter. When I held Austin for the first time, nothing else mattered and I immediately fell in love with him. He was what God meant for me to have.
There are several emotions and thoughts that consume your mind upon finding out that your child has Down syndrome. You will probably have the urge to google everything about Down syndrome. I would discourage new parents from doing that. A lot of the information on the internet is outdated, negative and flat out ridiculous. There are some websites that are helpful(*see the bottom of this post for a list of helpful websites), but sadly, a lot of them refer to Down syndrome as an illness or something that our children “suffer” from. Perhaps the people who write stuff like that “suffer” from stupidity? No one can tell you what to expect, what your child will or won’t do. NO ONE! Individuals with Down syndrome are unique. They are not “all the same.” One child with Down syndrome may struggle with gross motor skills, while another will not. One child may eat anything you put in front of him/her and another may struggle. One child may not struggle with Speech, while the other will require a lot of Speech Therapy. We can’t predict the future for a typical child, so why do that to a child with Down syndrome?
It’s important to remember “people first” language when you’re talking about a child with Down syndrome. What does that mean? In a nut shell, don’t use Down syndrome to define the child. Here are some examples:
Incorrect: I saw a Down syndrome baby at the mall.
Correct: I saw a baby with Down syndrome at the mall.
It’s also important to not put a child with Down syndrome in a “group” or stereotype him/her.
Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings, just like you and I. In other words, if something is bothering them, they may appear to be sad or even angry. The number of chromosomes we are born with doesn’t dictate our ability to experience different emotions.
That’s all for today…more tomorrow.