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Is It Safe to Share the Truth About My Special Needs Child?

By Carissa Garabedian, Editor and Publisher, Macaroni Kid Richmond August 23, 2017

An interesting thing happened to me this week. I was preparing for Marky’s IEP, which always causes me such anxiety. I decided to call a friend to vent and share some of my feelings. She asked, “How is he doing in school?”. To which I replied, “Great, he never complains, he goes with the flow and is so easy.” She replied, “You are so lucky!”​


I got to thinking, why do I say "great"? Why do I say he never complains ? Why does she think I am lucky!?

Then I realized, the quality I dislike most in people - lying - is just what I did, and do.

What could I have said in response that would have been the truth? Here it is, “Marky doesn’t yet have the ability to tell us how he is doing. He has all of his work modified and we never really know if he grasps half of what he has coming at him.” ( Even adding YET there is a stretch). I could go on with, “We fight for him because he cannot and we aren’t willing to say he can’t reach certain goals. We would love and welcome his feelings on this, but he doesn’t know how.” LUCKY? NO, we are NOT lucky. He is NOT lucky, and this is not a way you would want someone you care about to live.

I know it was not my friend’s intent to trigger this response, I also know sometimes we say things to try to make someone we care about feel comforted. I appreciate that all, but the truth is that I am scared, so I “lie” to myself, and to all of you, because I don’t know how else to do it all. I don’t only “lie” to keep it easier for those of you who do not live it every day, but I “lie” because the truth and the fears are bigger than I am able to grasp.

Maybe it’s easier, but is it better? I don’t know.

So for today, I feel better knowing I did not “lie” here and I promise to keep trying everything I can for this guy who needs me in ways many do not understand.

____

Carissa Garabedian is the publisher of Richmond Macaroni Kid and founder of KNOWDifferent.net. She is a mom to 3 great kids, including her youngest who is on the spectrum and teaches her so much about life. She's married to her best friend and loves to cook, loves to run, and loves to make people smile!