Yesterday I wrote a post entitled “3 Things I Wish You Would Do”.
I wrote it because I recognize that there are many of you who have not had any previous exposure to the world of disabilities, and may be unsure of what to say, what not to say, or how to act around our family.
Today is a continuation from yesterday, aptly entitled:
3 THINGS I WISH YOU WOULDN’T DO:
Feel sorry for us / pity us
A couple of weeks ago, I had an ultrasound to check on the baby. The baby was being really stubborn and wouldn’t move into the correct position for the ultrasound technician to take the correct measurements. While we were waiting, Curtis and I were chatting with her, and the subject of our kiddos came up. I told her that we have a 1 year old, and a 2 year old with Down syndrome. She then proceeded to make a noise. It sounded like “awwww”. It sounded like pity. It sounded like she felt sorry for us. It sounded hurtful.
Please don’t feel sorry for us. Please don’t pity us. We have a fantastic life with our two little guys and another baby on the way. We love our life. We cherish our sons. Does our life look a little different? Yes, of course. We have some added challenges. But honestly, we wouldn’t have it any other way.
Treat Jake differently
Being 100%, completely open and honest right now, I have to confess that there are times that I treat Jake differently. There are times I “cater to the Down syndrome” so-to-speak, and let Jake get away with attitudes and behaviors that I shouldn’t. This point, then, is written as much to me as it is to you!
I want Jake to know that he is held to the same standard as Cole. To the same standard as his typical peers. I want him to learn respect, to learn manners, to learn sharing, to be polite. I desire to instill in him the same values, morals, beliefs, and attitudes that I teach to my other children. I want him to know that there are consequences for his actions. The timeline for him learning those things may look different. But please help me in ultimately holding Jake to the same standard as anyone else, keeping in mind that the timing may be varied.
Use the “r-word”
I know I’ve talked about this in previous posts. In fact, as an explanation, I will give you an excerpt from one of my posts, since I believe it sums up my feelings very well (you can look here for the full version, and here for the “r-word” website). Please, if you can join me in abolishing this word from your vocabulary, it would mean the world to me. To Jake.
“Before I had Jake, I used it as a part of my vocabulary all the time. To the point where my husband actually asked me to stop using it, because it bothered him. At that point in my life, I couldn’t imagine what the big deal was. I never intentionally used it in a derogatory way, I never used it when I was talking about individual people, and I never associated it with actual disabilities. It was just one of those words that seemed to fit in certain situations (I have now replaced it with the word “ridiculous”).
After I had Jake, though, I immediately stopped using it. The word took on a whole new meaning for me, as I came to realize that once upon a time, not too long ago, that is the word that many would have used to describe Jake. My precious son, my perfect little baby boy, my pride and joy. In an instant, after recognizing the impact of the word as it took on a whole new meaning for my context, I was disgusted with myself for ever having deemed it an appropriate word to use in every day vocabulary.”
I hope these suggestions have been at least somewhat helpful. I hope they’ve opened a dialogue that can continue in the days, weeks, and months to come. If you have any suggestions, comments, questions, etc… know that I’d love to hear them!