We've all crossed paths with a child in a wheelchair, with a walker or with Down syndrome and, without thinking, gave them our "I'm so sorry" look. The look that we think shows understanding but in reality is nothing more than a reflex showing our discomfort with the situation.
We've all chatted with someone in line and asked about the kids attempting to escape their buggy. Our response, "oh they are so big" "she is so small for her age" "goodness he is going to be tall" "well, you're a little chunk now aren't you".
I'm guilty. I have done it all. In an attempt to show compassion and understanding I actually offended parents and caused discomfort. It wasn't intentional, I was truly trying to be nice but our "nice" comments have a completely different meaning to a special needs parent. It wasn't until we entered the world of being parents to a special needs child that I realized how my friendly comments were taken.
When Ainsley first became sick I felt as though I had to defend her to everyone. My response to every comment was she is sick. I was constantly met with "she is so small" "she is so big" "that's a strange rash, you should have that checked" "someone didn't want to go shopping today" and I always felt that I had to explain why she was so small, big, red and having a meltdown. I always noticed the looks of pity and judgement. And then one day I woke up. I suddenly realized that I wasn't the one with a problem..the problem was actually all of the criticism masked by the "nice" comments. And that was the day I stopped justifying every decision and action.
Ainsley has special needs but honestly every child has special needs. Ainsley is different than the average child but that doesn't mean she is a burden or that she wants pity from anyone. Why should anyone pity her? She is a very happy child and we wouldn't lover her any more if she were "normal". She isn't less of a person because she has challenges that other children don't. Consider the positive side. This child is fierce. She has fought since the day she was born and she has overcome everything thrown at her. She has more strength than many adults. She may take a different path but she always reaches the finish line.
My days of sugar coating and justifying are over. If my child makes you uncomfortable that is your problem..not our's. So, in response to your "kind" words:
Oh my she is so big - Really? I hadn't noticed. I wonder if that has anything to do with the backache I have had for 2 years now.
She is only 2? - No, she is 6, I just said 2 to screw with you.
Someone is not happy to be here - Was it the endless screaming, the overturned buggy or the phone that she threw at your head that tipped you off?
You should really control your child - You should really control your mouth.
What is that weird rash? - Contagious..it's very contagious. I suggest you step away.
Oh, she isn't talking yet? - Do you hear her saying words??
You should take her to the doctor for that - You think so? That thought never crossed my mind.
Will she be normal when she is older? - Are you normal because if that is what normal sounds like then no, she will never be normal.
Keep in mind that we look at our child the same way that you look at your's...like they are perfect little angels. We don't want or need your pity, we simply want you to understand that all children are different and special. No matter what struggles they face their accomplishments will always outshine their set backs. We are a group of parents that simply want our children to be happy and healthy
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