Our guest blogger this week is Lexi Magnusson. She writes for the Scary Mommy Blog under the pen name “Lexi Sweatpants“. Her bio there describes her as, “a writer, wife and mother of four. Her middle son has autism, her daughter has Down syndrome. She has sleep deprivation and a deep passion for candy.” We love her authenticity and spice and we think you will, too.
People are awesome. Everywhere we go, my three year old daughter who has Down syndrome is a freaking ROCK STAR. People make a special point to come up to her and say ‘Hi’ and love on her a little bit. It’s really great.
Then there are times…well… that well-meaning, very nice people say things that just drive me bonkers. I know that they are just trying to be nice. But whether it’s because I hear these things all of the time, or because they just aren’t the reality of the world I live in, there are a few compliments that make me batty…
1. “Children with Down syndrome are a gift from God.”
This one is not untrue, and it doesn’t really bother me…I just hear it all of the time. A lot of the time, they tell me this while my other children are standing with me. I want to lean down to my boys and say, “Did you hear that, just kids without Down syndrome. Suckers.”
All kids are gifts from God. The other thing that gets me about this is that by saying this, I feel like children with Down syndrome are put on a pedestal. I shouldn’t be complaining about this, but that pedestal further separates her from her peers, and honestly, makes me feel like I can’t just say she’s being a bratty three year old from time to time. People act like I’m committing sacrilege when I talk about my daughter like any of my other kids when they were toddlers.
2. “She’s so happy and easy all of the time!”
My daughter is pretty happy. You know what? She’s about as happy as ANY of my other non-chromosomally enhanced kids are. Stereotypes do exist for a reason, and generally, it is seen that people with Down syndrome are happier in nature. This does not mean that they are happy or are easy all of the time. Abby is 2, and does what other kids her age do: throws tantrums, gets into things, colors on EVERYTHING, breaks stuff and freaks out. She has her own personality and can get mad as hell at you if you give her cause. One of my friends said something about her own child with Down syndrome that made me laugh: “She has Down syndrome, not a freaking lobotomy!”
3. “She hardly looks like she has Down syndrome!”
Uhm? Yeah she does. She has a mixture of mine and her father’s features, expressed with the presence of that extra chromosome. She has all of the “classic” features of Down syndrome: the almond shaped eyes, the low set ears, and the lack of bridge in her nose. Saying that she doesn’t look like she has Down syndrome actually stings a bit. It feels like you’re trying to say that she’s pretty in spite of her chromosomal makeup. I think she’s beautiful because of it.
There is a difference in saying she doesn’t look like she has Down syndrome and that you don’t notice her Down syndrome. I love it when people just see Abby. They just see my beautiful daughter.
4. “Just think! It will be like having a little kid living with you forever! Your child will never grow up!”
First off, this one just isn’t true. Adults with Down syndrome aren’t children trapped in bigger bodies. They have life experiences, they learn, they fall in love, they do just about everything other adults do. It doesn’t mean that she won’t need significant, ongoing care throughout her life. And, though being a parent is super rad…I’m not the kind of mom that gets all bent out of shape to think of her kids actually growing up. I want Abby to grow up. I want her to be independent. And she will be.
5. “I could never do what you do! You’re my hero!”
GROAN. This is one of the biggest loads of crap I hear. I mean, I know people think that’s what I want to hear. It’s not. First off, how do you know you couldn’t do this? Had I been told that I’d be a mother of four kids, 2 with special needs, I would have said, “Yeah, no. Not me,” and run screaming from the room. You don’t know what you can handle until you get there, and until handling it is your only choice. Telling me that I’m your hero puts me on an impossible pedestal, too, that I can’t and won’t live up to. I’m a regular mom in an irregular situation. But these are my children, and I love and fight for them just as much as any other mom does.
Like I said, people are great. I’d rather have people tell me these things than the litany of shitty stuff people have said about her Down syndrome. I understand that people don’t know what to say and are just trying to be nice. And I love them for that.
The worst thing you can say to a mother of a child with Down syndrome, by far though, is nothing at all.