Do you realize how many people, professionals included, say, “I’m sorry,” when delivering the news of a diagnosis like Down syndrome? Take it from me, as a parent, when you hear the words confirming the diagnosis, your heart is already breaking in a million pieces. It takes a bit to realize that you still got your blessing.
While it’s not anything that someone can make you understand DO NOT UNDER ANY CIRCUMSTANCES SAY I’M SORRY!!!!!
If you don’t know much about the diagnosis, instead say, “Let’s research this,” or say, “Every child is a blessing,” or say, “We will be there no matter what.” Don’t feel sorry for us. We will be dealing with enough of that on our own. Let the parent be sad him or herself and go through all the stages that we all go though. Just be there, and if you have to, fake it until you make it. I promise you will get there if you choose to stick around and learn. It will take us a lot longer then it will take you, but it will be so much easier if we have your support and not your pity. It took me over four years to get to this point where I really could start opening myself up to advocating.
There are those who have family members and friends who turn away in disgust or fear of the unknown. We are very lucky we just had love! Sadly, every parent of a child with Down syndrome has at least one story that hurt their heart. Luckily so far I have just two.
One of these stories leads to my second point: watch what you say. You never know who might be hurt by your moment of “fun.” I was with some coworkers one night and we were all hanging out, having a good time when one of them made a comment about how she was drunkenly splashing around, “Like a dolphin with Down syndrome.” Now, I’m far from a delicate flower or a big PC kind of person, but that was not OK. I waited a few minutes until I knew I could control my emotions and I pulled her aside and asked politely if she realized what she had said. She promptly apologized, but I showed her a few pictures just to make sure she got the point that what she had said was NOT acceptable.
I beg of you, don’t be that person. If you think a mama’s heart would hurt from a comment like that, can you even imagine what might happen if a young sibling overheard something like that? The things we say as adults get repeated by children. Remember that as well!