Saturday, my friend Sharon called. She’s an old friend from college, we talk a couple of times a year. She and her family are coming to our area Easter Sunday weekend, and she was going to stay at our house. When I spoke with her last week, she thought that maybe our family and hers (she has two teens) could do something in New York together. I said I’d have to figure out an activity that would work for all of us, as Max didn’t like anything too noisy or crowded and sometimes wigs out.
So, she called back Saturday to say that she was probably going to stay in a hotel, and then we could maybe do an activity near our home. “You have enough stress already, you don’t need us at your house,” she said. Then she told me she’d been reading my blog, and she loved a recent video I put up with my little girl singing on our porch swing, Max sitting beside her. “He looks so happy!” she said, her voice full of pity. “You can tell he’s such a happy little boy!”
Those words make me cringe.
I know she means well, obviously. And Max is a cheerful kid (even when he’s getting OT, as he is in this photo). But whenever anyone says “He looks so happy!”—and people say it all the time—to me it’s like they’re basically saying, “It’s a good thing he’s happy because look at how much is wrong with him.”
Sometimes, I’ll catch people staring when Max drools. That’s when I get the Pity Stare. Which can make me feel even worse than the Pity Comment.
I know exactly what my problem with pity is. It makes me hyper-aware that Max has special needs, and that I am not like other moms out there. And I just don’t need to be reminded of that.
Have you experienced the same?
Ellen blogs daily over at To The Max.
I have not had that kind of experience. I think for a few reasons. My boys, they don’t look like they have special needs. So I get the nasty stares from people. Like, why is that mom not doing anything about that kid. I get rude comments..like..” that kid is an animal” (that came from some one who works at the grocery store) “you’re a bad boy”.. ” Oh my, he’s a handful” i think was the kindest thing I’ve heard. And once…at a meeting for my youngest little guy, I was talking to the resource teacher for the school board..and I was saying I dont’ want Damien in the special needs class when he gets to be 6, as I already have a son at GD school in that class. She said..”oh I must know him..what’s his name”…I said his name and she just looked at me and said.” Oh….God bless you” now I know she meant well..and I certainly do want God to bless me..but its times like that when I know..I really really know..that ..he is a very unique kid and he will continue to get bigger and more stronger..any how..i’ve rambled too much
hugs
My daughter’s about a year behind developmentally and just started walking. We were at her cousin’s birthday (who is a month younger than her) the other day. There was a mutual friend there who we haven’t seen for quite some time. She commented that my daughter was “doing so well.” I know she was being nice, but it almost felt insulting or pitying. She may as well have said, “she’s doing so well for her.” Made me wonder what she’d expected to see. I wanted to say, “no she’s not! look at her!” as all the other kids her age ran circles around her, but I didn’t because I’m too nice and because my daughter really is doing so well (from where we’ve come).
What I wish is that friends and family would admit that they don’t know what to say or how to feel. Then we could be honest and not have to worry about reading in between the lines.
One of the most common comments from people when they find out you have a kid with Down’s Syndrome, is “Oh, they’re such happy, loving children” at which point I want to punch them.
Quite apart from the chaos in the house this morning when my “happy, loving child” absolutely refused to get ready for school and was virtually throwing a tantrum, the biggest problem is it means people are still seeing the condition and not the person.
Yes she’s happy, and miserable, and crabbit, and grouchy, and loving, and helpful, and unhelpful, and stubborn, and beautiful, and a complete pain in the arse. Just like any kid.
Get to know our children as people, and realise they are complex human beings, not some simplified condition.
Yes, I know that look. I just didn’t know how to describe it. It feels like people give me strange looks just because I look so bad. I want to yell at them, “I look like this because I’m a mommy on a mission and you should have seen us before therapy”.
Lisa, I’m sorry for what you’ve had to deal with, clearly it’s hard, too, when your child doesn’t seem apparently disabled. Amanda, “Doing so well” is yet another line that bothers me, too! I’d forgotten about that one. Heidi, I agree, sometimes it would be fine if people said nothing at all and/or admitted that. Kim, you are SO right. Max the same as Meg—sometimes he’s crabby, stubborn, frustrating. I love what you said about our children being complex beings, not some simplified condition. And Territory (um, can I call you that?)!), maybe you should say that sometime!
My daughter is “atypically delayed” (as in will never catch up) and has Down syndrome and Autism. My own mother, who is from another country and in her 70s, actually said to me “Oh, it’s a good thing those kids are happy. Because their parents’ aren’t.” Excuse me???? Don’t pity me, folks, cause I’m happy and love my kids. Our lives might not be like YOUR lives, but it’s just a different normal.
Oh, do I! The looks just never end. I think part of it is because seeing someone so different makes people uncomfortable. But I wish they would just look away. I do not need your googly eyes.
That is why there are days I just take Noah to Target and leave Addison at home with Daddy. Because some days I just can’t handle another pity look.
I get it all the time and it drives me nuts! It gets so that I hate even telling anyone about Evan’s heart defect and stroke because then things are immediately turned to “aww how awful, poor you and poor Evan”. I don’t like pity and I try not to give it to others in worse situations than me, I try to now give understanding instead. I am not living this life with a special needs child because I want to, it is because I have to and I would do nothing less than the best for all of my kids. I would like to think that any parent would do the same in my shoes.
I just finished reading all the comments. Wow.
I like the “I”m a mom on a mission, you should have seen us before therapy”
I have a fantastic book actually called. ” A Different Kind of Perfect” It has writings by parents on raising kids with Special Needs..
Another one of my favs is called. ” A Special Kind of Love” by Susan Titus Osborn and Janet Lynn Mitchell.
Totally agreeing with Kim on this too and the kids with Ds are so happy.
Drives. Me. Nuts.
I think sometimes pity is confused with compassion. I don’t have a child with special needs but I do have compassion for those that do. I also have compassion for a mother of twins or triplets etc. Because I know how hard it must be sometimes. An old neighbor has an autistic child who spoke very rarely to anyone. However he would tell me everything. He knew he wqs welcome in my home anytime and used to call me Honey…..He would waltz in and say, “Honey I’m home.” and go straight for my pantry and the cookies I keep there. His mom didn’t believe that he talked to me a lot til the day she found out she was pregnant with her second child and I knew before she told hubby. As the only other person she’d told was Kyle I coninced her that the only way I could know is Kyle told me. Kyle knew that I always listened just as sometimes I had to get him to really look at me and listen when I needed him to calm down or tell him something very important……I miss them as neighbors very much.
Sorry my typing was so bad, I’m on some strong meds this week
I have not gotten a lot of those types of comments…I have one son that has had a stroke, and one son that has severe hearing losses bilaterally. I don’t get the pity comments. At least if I have, I haven’t taken them that way. I think what I get more of are the “shhh, don’t talk about him” kind of things. I’d much rather have a person ask a question than shush about it.
Honestly, I think people don’t have a clue what to say. they don’t know how to react, and they get nervous. They don’t know what it’s like.
I have a 17 month old with CP. She was invited to her first birthday party recently. We were excited & had a great time. After I found out that the birthday boy’s mom said “I am so glad they came because she cannot do things the other kids can”. The excitement of the party invitation quickly wore off & I felt pitied.
I feel very defensive when someone in my family calls me a couple days after a family gathering & says, “I thought Teddy did very well on Saturday, don’t you?” I want to say, “You mean when he fell in the pond again, chased his cousin with a stick, & melted down when we left, all while you were inside chatting & drinking wine?” I feel like other people can take a snapshot, Kodak moment & use that against me when I try to talk to them about some of Teddy’s challenges. I’ve given up trying to get understanding–I just smile & nod.
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