"You need to get the face," she said.
We were talking at the break in the lecture day and she'd approached me sitting quietly at the lecture table. Often people come with questions and while I normally don't mind, I was tired and therefore pleased that she'd just come to chat.
"The face?"
"Yes, the face," she said. "When you were telling about that guy who came to talk to you about 'the cosmos' and 'positive vibrations' and 'being healed' I realized that you probably had never been told about The Face."
"OK, I'm curious, what's The Face?"
"I'm a member of a parents group, we've all got kids with Down Syndrome. A couple of years ago we started talking about 'the face'. We each discovered that we'd learned to put on 'the face' when we went out with our kids. It's a face that says 'I love my kid. I'm out with my kid. Don't you dare mess with me and my kid.' We've all discovered that you've got to have 'the face' if you are going to stay sane.'
I asked her to show me the face. She laughed and said ok, she turned around away from me and then turned back. She was definately wearing 'the face'. It was fearsome, it was proud and it was defiant. Then her face dissolved into laughter and then she demanded that I try. So I did. She laughed and said, 'No, that's just an angry face, you'll get people saying, 'you all right bud?' I laughed and told her that people do say that to me all the time. The break flew by as we just chatted and I tried on different faces, never quite getting it.
I've got the day off today and we're going to the movies and to the mall, I'm going to try 'The Face' and see if I can get it right. And I'm going to watch for other parents of kids with disabilities and see if they wear 'the face'.
I'm curious, if you are reading this and have a kid with a disability - do you wear 'the face'? If you have a disability or go out with those with disabilities, do you wear 'the face'?
What a great idea. There should be a handbook given out to those in the disability world ... How To Get The Face.
Love this idea! It's a pity you didn't have a camera with you to post a picture so we get the exact 'Face".
ReplyDeleteIn our Support Group all our kids have DS. We celebrate all our kids achievement by adding 'sure you got the kid with the MILD version of DS!' or 'what do you expect when he has the MILD version of DS!
We all just roll around laughing at that one!
I guess we all find ways of coping!
I'm off to practice in the mirror! I'm sure I have to get into the correct mood inside myself before I master this one!
I'm a grandmother of a child with DS and I never really thought about the "the face." I guess my face reflects nothing but pride and I'm not just being sappy here. He overcame so many health issues and is so much more than I ever could have imagined that YES it's definately a face filled with pride, respect, and admiration and probly says "Don't mess with me or my grandson!"
ReplyDeleteOh yea, I'm a pro with 'the face'. It says "Mess with my kid, and your day will be ruined". It's especially handy for meetings at my daughter's school!
ReplyDeleteHmmm... I will have to think about whether I have one or not. I know I have the serious mom face when my kids realize I am through with their shenanigans. I have a 'why don't you people just read through his medical history' face when I've been to appointments and then I zip through medical terms and dates in record time with a monotone voice just to emphasize my irritation.
ReplyDeleteMost of the time I have a 'happy, loving my life and family' face.
Oh yeah, I do have "The Face" alright. It says exactly as that parent described: "I am right here, I'm a proud mama bear and if you do not treat me and mine with respect you will have me to answer to!" And you know what, it helps. It helps to keep stares away, it helps to keep silly remarks away and it helps for the others to see what is expected of them. I believe that people take clues from us as to how to treat our children. By setting an example, we show them that this is the standard we set for our children and we will not settle for anything less.
ReplyDeleteRegards
Guen
Mum to Robert 13 y.o. w/DS
I think my Face is more of a "I've got a wonderful secret" face. I feel my eyes dance when I speak of my daughter, I have a superhero shield that allows me to bounce negative energy right off us when anyone dares throw it our way.
ReplyDeleteIf only those who look at us with pity knew how very joyously we live!!
If I could bottle that into a tonic, I'd be rich!
All I have managed so far, is a reaction (to received crap) of raised eyebrows.
ReplyDeleteNow, if only I had the energy to keep my eyebrows up all the time, maybe I would have the face and not have to face the crap. ?
I need a tutorial, with pictures, please. A sort of before, during and after type tutorial. Please.
I found that there is a different face-- "The I'm OK., ity is not the end of the world to have a child/ teen with DS"
ReplyDeleteThis serves two purposes:
1 It is an aid in getting the community to look at those with DS more possitively
2 It is a way to avoid all those stupid palatitudes
I don't have "a face". I do usually avoid eye contact when I'm out with my kid. I focus on him and try not to be worried about other people. If I made eye contact I might be distracted by what I see there.
ReplyDeleteOh I absolutely do have a special 'face' on when I'm out with my children, and with my autistic son especially. He looks like any typical child but acts differently, sometimes it might look like he's badly behaved to others. I just do what I need to do to help him have fun, stay safe and enjoy time out with his family. My face is saying, 'we're fine here and I love this boy'. Sometimes when I've helped him deal with a little 'grump', I'll just smile briefly and say hello to any onlookers we may have had as we move on.
ReplyDeleteI've got the face, the stance, and the gait required for public outings with my son, who has profound CP.
ReplyDeleteThe face looks mildly amused and includes lots of eye contact -- like, "I dare you to throw pity our way."
The stance is showing my boy off to his best advantage, and making sure that he is included in all the action, and the gait is a spring in the step, even when I feel like dragging.
And even beyond that I have a bunch of handy one liner responses to the frequently heard stupid stranger comments.
Years of practice . . .
RST
I went out with Moo this afternoon in his chair (we use the double stroller a lot in public instead of the chair as we have a baby too) and I spent time reflecting on how my attitude changes when we have the chair and not the stroller.
ReplyDeleteI found it really confronting the first time I took him out in the chair. Though I definitely have the face now as I was using it this arvo.
Just as a sidenote, Moo has problems using two hands on his chair so he does a lot of circles. I saw a young lady in the coolest wheelchair approaching at lightening speed in the shopping centre this arvo and pointed her out to Moo and how she was using two hands (you know, not many role models around to show him how to do it). She saw me and looked mildly annoyed that someone had picked her out of the crowd. That was until her eyes hit Moo, and she gave him the biggest smile. Made my day and I think it made Moo's too.
Jacqui
I think I probably have a different "face" when I take out my kids,cause they don't biologically belong to me, but they still feel like mine. It's a face that says " I am having the time of my life right now, and if you don't get it, I feel sorry for you." It's a face that says "I have the best job in the world." And I really do.
ReplyDeleteLisa
Ok - this is great. I definitely have the face sometimes. But it could be better. I like her description of it - will have to work on it!
ReplyDeleteGreat post.
I have a 10 year old daughter with down syndrome and for the last two years I have been fighting cancer, with a lot of complications and additional health problems. Every now and then I land in a wheel chair or need a walker. That doesn't keep me inside though. I am out and about and the looks I get are a very colorful mixture - everything from pity, to disdain, to aggression, etc. I used to try "the face" but that uses up way to much energy and creates negative feelings. I find a "you don't even exist" variation of "the face" much more usefull. People who can't see me or my daughter as normal people don't get acknowledgement of any kind from me. THey just don't exist anymore.
ReplyDeleteIt's funny I had the face years ago when I was a child and people would stare at my sister who has Down Syndrome and was also trached. I remember getting my face up close to whoever was ataring and I would always ask 'whatcha staring at?'. Now tables are turned and my daugher is who people stare at and make ignorant comments about (she is 2 and has Cerebral Palsy), instead of the "face" I just hang my head and carry on.
ReplyDeleteI guess I have a bit of work to do in rekindling my youth.
I was quite excited to see your blog, years ago I attended many of your lectures bought many of your books and then got busy with life. You must have inspired my as I now help run some groups for youth with Developmental Disabilities regarding sexualtiy.
Look forward to reading your many posts.
Yeah, I think I have Betsy's "I've got a wonderful secret" face -- as in "ha! maybe you have no idea how cool this kid is, but I do, and we're enjoying ourselves, so don't bother us with any nonsense." I remember promising him when he was a newborn that we'd have fun together. So that's my priority. And that's my "Face."
ReplyDelete