Tonight I got out for a little while alone to get my eyebrows waxed. The girl doing the waxing started making small talk and the conversation came around to my kids. She asked me "do they go to school?" and whatnot. I told her yes, my son goes to a special ed preschool and likely my daughter will this fall. She inquired as to why and then I explained that Aaron and Scarlet are both on the autism spectrum. That my son goes to a special preschool to get the services he needs and loves it. I told her how he lights up when he sees his teacher. I smiled and spoke with excitement and happiness as I said this.
Then I got "I'm sorry'd." I've gotten it before many times and it bothers me. I know people don't know what to say and then say the wrong thing. I have put my foot in my mouth before. This girl took it to a whole new level:
"Oh my God! I am so sorry, Courtney. How awful is that! Do they even talk? Will they ever be normal? I cannot even imagine how awful that would be. Did you know when you were pregnant? Is your youngest child at least normal or does he have it too? Hopefully he will end up being healthy."
Stunned. Speechless. Dumbfounded. Why? I should be used to this by now. I explain how awesome they are and what a joy it is to be their mom. I try my best to answer questions in a way that helps educate her a little and let her know that I don't need pity. I tell her cute things they have done that cracked me up lately. Unabated, she continues, "I have a good friend who has a son with autism. I feel so sorry for you and for her. It's just awful." (Seriously? Do you say this stuff to her? Are you sure she's still your friend?)
Here's the thing, and let me be really clear:
I'M NOT SORRY.
I'm not sorry to be lucky enough to be Aaron, Scarlet and Owen's mother. It is my life's greatest gift and an honor. Full of challenges? Yes, but worth every moment.
There is no such thing as normal. Sorry to burst your bubble. We are all dealing with issues, maybe they don't all have a name or a diagnosis. Every single person, adult and child, struggles with something. Some have a diagnosis of some kind, some don't.
I don't need your sorrow or pity. Is it hard? Yes. Parenting is hard. Life is hard sometimes. Throw in special needs or medical issues and it gets even tougher. I do what we all do. I show up and I love my kids and do everything possible for them. I try to make things as comfortable for them as possible so they are not afraid or overwhelmed. I love them unconditionally.
My kids don't need your pity. They are amazing. They face challenges and fears every day. They are fun and silly and make me laugh and drive me crazy. Like any other kids. Whether or not they ever meet your definition of normal means NOTHING to me.
Pay attention to your audience. Notice that when I talk of my kids to you, I smile and beam. I do not lower my head in shame. That light in my eyes is PRIDE. That is LOVE. I am not sorry.
"How do you deal with it?" Don't we all deal with our own lives every day in the best way we know how? I just try to act from a place of love for my kids and hope my husband and I are making the best choices for them.
Autism is not a disease or an illness. It is a neurological disorder. It's a different way of experiencing the world. Autistic brains work differently. It makes things more challenging in many ways. It also makes every single word, milestone, funny moment, new food tried, smile and interaction that much more amazing and worthwhile.
You are truly missing out by writing off an entire group of individuals as sad, less than or worthy of pity.
If you want to learn more about what is helpful or hurtful to say to parents of special needs children, click here.
Here's the other thing:
Everyone is deserving of love and respect, not pity and condescension. Ideally, everyone should be respectful and think before talking. However, when your job depends on other people's generosity, tread lightly. If you work in customer service or off tips, be extra careful what you say. I did tip the girl tonight but I will not be going back there. I don't always say the right thing but when in doubt, keep it short and sweet. Don't apologize to me. You are ignorant if hearing that my children have autism is that shocking and horrifying to you. So go get educated, just a little. I mean, that is, if you want repeat business. If 1 in 50 kids have autism (according to parental reports), chances are their parents, aunts, grandparents and loved ones are some of your customers. I don't need your sympathy. Not one ounce of it. My kids definitely do not need your sympathy or pity. Not sure what to say? Ask me to see pictures of my kids and comment on how cute they are. (because they really are).
If you don't believe me, check them out. Do they look sorry to you?