While meandering through the grocery store here at the beach, hubby, baby, and I were stopped by a nice lady asking if we wanted to try her bbq salmon and mushroom/ corn succotash. Of course we did! I grabbed a plate and took a bite. It was delicious! Before I could even finish chewing to give her my raving review, the lady gazed at baby, looked at me and hubby, and said,
"You are blessed. You know that, right?"
"Really? I'm so happy you said that! I've been wondering, but now I'm convinced that our beautiful, sweet, intelligent child is in fact a blessing and not a curse."
Ok, that's not what I actually said. However, it sure was passing through my mind as I incredulously declared, "of course!"
I understand that this lady just didn't know what to say once she noticed the obvious detail of our child having Down Syndrome. I'm sure she had the best of intentions, as do all of the people who make uncomfortable comments to us. This is why I'm writing this post. I hope to help diffuse some of the "awkward" when interacting with families with special needs. Below is a list of comments to avoid.
1.Using words like blessed, lucky, etc.
You are correct! We ARE blessed to have such a sweet, loving, happy child. She would probably have these same characteristics had she not been born with Down Syndrome, however. So someone telling us that we are blessed just because she has an extra chromosome makes us feel weird. It's like she is put on a pedestal and while acceptance is wonderful, let's not take it to the other extreme, either. Yes, she enriches our lives so immensely; but so would a typical child. They all bless us, it's just in different ways. This also makes us feel like you are trying to convince us that this child is lovable, when we already love her as much as we possibly can. There is no more room in our hearts to love her any more than we already do!
2. "God must think you are strong because he gave you this child."
This is so deceiving, because it seems like a compliment on the outside, but it really just makes us revisit why were given this child and feel uneasy again. We have already been over and over why this happened to us and our baby. So, hearing that we "must" be strong only makes us wonder if we really are equipped to handle all that this life will throw at us. Also, just having our little star doesn't make us heroes. We are normal people who struggle with sleep deprivation and the demands of an independent, opinionated toddler. This does not make us any "stronger" than any other parent out there.
3. "I couldn't handle having a child with special needs."
You don't know that! We might have said the same thing 18 months ago, and to be honest, sometimes we struggle. But, we DO handle it and this is our life now. It only feels different when our days mix with those who don't deal with special needs. Those families have their struggles, too, though. So don't sell yourself short! You never know how you will react to a situation until you actually experience it. Who knows? You might be the most amazing parent to a child who needs extra care.
4. "Is she (insert developmental milestone)-ing yet?"
I think this actually applies to ALL children, but it especially does to those with special needs. It is heart-wrenching when, after answering the question of how old my daughter is, to have to say, "no, she's not doing that age-appropriate thing yet. We're working on it (so hard, every day), though." Instead, just ask how or what she is doing now. This leaves it open for us to gush about all of the amazing progress our precious baby has made and actually leaves us feeling proud instead of defeated!
5. Using the diagnosis to label the child
What I mean is saying, "the Down Syndrome child" instead of, "the child with Down Syndrome." It just sounds better when you put my child before her diagnosis. After all she is Layna, not Down Syndrome. She HAS a genetic disorder, just like she HAS blue eyes and brownish-blonde hair. What's something you were born with and you have to deal with every day, but doesn't DEFINE you? Skin color, for example? Yes, this might play a huge role in who you are as a person, but it doesn't make up you as a whole. I don't like describing people by their skin color or anything else that goes beyond the surface. It's too personal to label a person by something like that. So, when describing a child with special needs, put him/ her FIRST, followed by the disability (i.e. child with Down Syndrome/ Autism/ blindness/ in a wheelchair/ etc).
So, how do you go about interacting with a family that has special needs? It's easy! Just TALK to us! We are just like every other family, so treat us like you would anybody else you see meandering through the grocery store. If you want to say something, but just can't think of anything, tell us how pretty/ handsome our little one is. We love to hear that! MOST (and, I say most because I can't speak for everyone) of us love it when people come up and strike up conversations about the diagnosis we face. Advocating is a favorite past-time of us special needs parents, so if you have a question, ask! Maybe not, "what's wrong with her?" but you get the idea. And resist the urge to cLaM uP. Just remember, we are normal human beings who can handle any standard stranger-to-stranger conversation. If all you can muster is a, "hi," then you did great!
I hope all of this make sense and is somewhat helpful. Please don't hesitate to leave questions in the comments! Also, if you are a special needs parent and you have more to add, please do so!
Let's get rid of the awkward and get to know each other!
