16 May 2009

Congrats to Dani for winning my Streams in the Desert contest! Just send me a quick email with your address and I'll get it sent out to you. Thank you to those who entered! Rebecca- I have to tell you... You posted the second post. When I went over to random.org to generate a winner, the first two times I did it, post number 2 came up. But I was already planning on giving you one anyway! So, I'll get one to you shortly too!

And thanks for all the replies about my encounter with stupid comments from well meaning strangers.

The whole point in my post was not too say that Down's was a horrible diagnosis. I think most of you understood that. I always denied it every time they wanted to test my unborn babies for Down's because it wouldn't have made a difference to me. My child would be loved and appreciated no matter how God chose to line up their DNA.

My point in it all was that Liam doesn't have a gene disorder, doesn't look like he has one and doesn't need some stranger saddling him with a diagnosis after spending 5 seconds with him. It's impolite. It's inappropriate. It hurts people's feelings. And it was as discriminatory as it could be!

My struggles with Liam's daily life are brought to new lows when the ignorance of others is set right in front of me. I don't expect everyone to understand that Liam has a brain injury due to being born 4 months early and that it effects his muscle tone. I don't expect people to look at him and know that he has overcome so many things in his short life to get to where he is today. And I don't expect people to understand that we are so proud of him because he has to fight so much harder than anyone you probably know to get to do what comes so easily to everyone else.

And I don't expect everyone to look at him and not think he has something going on that challenges him. But, really, to meet someone and ask such a rude question is beyond my grasp. It's people like that that make me want to stay home and never come out. It's people like that that prompted my post here before.

Whatever happens with Liam, he is not the only kid out there with a disability and he can't be the only one that is going to prompt questions and looks of wonder. My point was that people need to learn some manners and proper etiquette. I wouldn't have minded the question if it had come from the innocence of a child's mind. Children are very curious and naturally want to understand the differences they see. But an adult should know better. Please think about what you are saying, measure your words carefully and consider what the other person may feel by your remarks.

  • Ask before you touch someone else's child. Even a typical child may have just overcome their umpteenth cold this season and the last thing their parent wants is another one. Germs live for hours on surfaces. You may have unwittingly grabbed a hold of the virus and are passing it right on to someone's sweet little babe.
  • Don't ask "What's wrong with him/her?", "Do they have _______ (insert your diagnosis here)?"
  • Don't feel sorry for people who are disabled. They bring a unique view of the world into the lives of the people they encounter and they enrich our world for the better. We don't want our kids feeling sorry for themselves.
  • Don't stare.
  • Don't talk about the family/child while they are near. Often times, we can hear you.
  • When the family mentions the child's disability or challenges, don't test the child as if what the parent said isn't true. Example- I once told someone that Liam doesn't see faces well. They bobbed back and forth in front of him trying to get him to look when I had just told her he couldn't see.

This isn't an exhaustive list. It's just some suggestions that will go a long way in helping children and their families live life a little easier without the negative attention that can come with challenges. If you haven't walked in our shoes, you have no idea how hurtful comments can be.

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Sassy said...

Great post Jennifer! Very well written!

Only the Sheppards said...

Well said :)

And just because I think you'll appreciate it, I was talking to a friend with a kid with DS, and told her about the situation. She was not offended, and said were she in your shoes (and she did say she had been in a similar situation before), but with her son with DS instead of CP, and the lady asked if he had CP, that she would be irritated because, again, it's just not a polite thing to ask.

Hope you have a great week!

Anonymous said...

Well said. I have a special place in my heart for people who live with Downs (a beloved family member has it), but there is no need to label people. Period. Liam is a miracle child who brings his own special perspective to the world. That's all anyone needs to know about him.