The reason I am writing about this is because this past weekend, I met a few new moms at a birthday party for my son’s classmate. I always find it interesting how blunt people can be and not always in a mean way, they simply don’t take the time to think before they speak. Since this is not the first time this has happened, I have learned to let these types of situations go. For those of you who are new to the autism (or any other disability) world, I wanted to share this with you. Do not hold onto the words and situations that will inevitably happen to you, it’s not worth it.
I love that people want to share their assumptions or stories that, while some are genuinely coming from a good place, it’s not always things you want to hear or need to hear. That said, here are a few things I have heard over the past few years that may or may not be the best things to say to parents of a child with disabilities.
One of my favorites is when you tell someone your child is autistic and they ask you what is their super power. Yes, people assume that because your child is on the spectrum, they have some great ability or power elsewhere. Not always true. Some children who are higher functioning on the spectrum, may be super smart or artistic, but not all children on the spectrum have these skills. My son’s super power is being lovable. And yes, that’s how I answer that question. People don’t usually know where to go from there and that’s all I can say about that.
The next one and the question I got this weekend is, “Do you think your child is autistic because of the fertility drugs you took?” Let me say this. First, yes, I did use fertility meds, it took me three and half years to get pregnant. Second, I never once mentioned my fertility issues to this person, I never met her before that day. Therefore, for her to assume this after hearing I had twins was very annoying. So, the answer to this question is, I have no idea why my son is autistic and neither does anyone else. The only thing I can focus on now is learning how to help my son and providing him with the resources and help that will give him the best future possible.
Here are a few comments that can be hurtful.
“Your child looks normal, I would have never known.”
“I’m so sorry, I feel sorry for all of you.”
I’ve also heard some nightmare stories from parents who have had therapists share their thoughts with them as well. A parent of a non-verbal child once shared with me that the first day her son’s therapist was at their home, one of the first things she said to them was, “I thank God every day my children are not like yours.” Needless to say, they asked her leave.
I also want to say, there are many who are so uncomfortable they don’t know what to say to you. That’s okay too. I get it. Before I had children, I wouldn’t have had a clue either. I think in my heart, I can imagine me wanting to say, I’m so sorry, but I realize this isn’t the most appropriate thing to say. I can tell you now that saying your sorry isn’t what I need or want to hear. And yes, positive comments, such as “Don’t worry, he will be alright, you’ll see,” while coming from a good place and is appreciated, sometimes it’s just as difficult to hear. Truth is, we don’t know. Yes, staying positive is the best thing we all can do, so I do always answer thank you.
Words can hurt more than actions, so it’s important to think before we speak. I also hope you understand, I am not trying to come across as angry, I simply want to share what it feels like to be on the other side of the comments and questions said to special needs parents. I know full heartily, there are people who really care about us and like I’ve said in previous post, you really must find your tribe. These are the people who know what you need and how to help.