There are many lists going around now that give advice on what NOT to say to a special needs mom. For the most part, I get it. Things can be said that seem insensitive and sometimes downright mean. The problem I have with these lists is that it puts people in a place to be afraid of saying the wrong thing for fear of offending on any level.
My amazing son has an extrememly rare genetic condition called Cri du Chat (CdC) and very few people, including those in the medical community, have heard of the syndrome. I am committed to advocating for my son and getting the word out there that kids with rare syndromes are just like any other kid, they just happen to learn, communicate and move a little differently. These lists do not create space for people to feel comfortable about talking about a condition, let alone feel comfortable around a child with one. Unless people are using offensive language or being intentionally mean, I am going to believe that they are coming from a place of curiosity and consideration and have nothing but love for my child. What I would rather see is a list that helps people move into a place of understanding so that when they or their children see a family of a child with exceptionalities, they are able to feel confident to speak to and make friends with them instead of turning away in fear of offending. If they happen to use a word I feel off about, I am committed to letting them know in a kind way so that we can all become more educated, compassionate and caring.
Here is a list I have come up with, in no particular order:
Things to say to a family with a child with exceptionalities (and please do!!!):
1. "Hello there! What's your name?/How old are you?": Speaking right to the child includes them from the start and allows them to know you are interested in them as their own being. They may not look right at you or even seem to be listening, but believe me, they hear you. The family may step in and speak for the child but we know that you are acknowledging our loved one.
2. "How is he doing with his therapies?" Straight up, therapies are a normal part of life for us. Stating it outright acknowledges that normalcy and shows that you generally care about the well being of our child. (And he's kicking butt! Thanks for asking!!)
3. "Would you and your kids like to come over for a playdate?" Heck yes!! We are all social creatures and I truly believe the more kids hang out with all types of kids with all types of abilities, the better off our future will be! And what mama doesn't love taking a load off and watching their kids play around with other kids while sipping tea and chatting with another mama??
4. "Can you tell me more about the syndrome that Eli has?" Oh, you betcha!! While Eli's genetic condition doesn't define him, I am over the moon when people want to know more. Awareness leads to acceptance and that is definitely the direction we want to go.
5. "Do you want to drop over for a glass of wine after the kids are in bed?" While we are our children's number 1 advocate and we work tirelessly to provide them with the tools to reach their full potential, we also just want to leave our house, hang out, laugh and sip a beverage (or two) every now and then. We may have to say "no" a few times before we can say "Oh thank goodness, YES!" but, please don't stop asking!
Not so difficult, hey? I invite any and all people to please talk to us. Ask us questions and hang out with us. We are normal parents who have extreme pride in both of our kids and want to get the word out there about CdC so that we can all move into a place of acceptance.
Love and light,