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Sunday, February 17, 2013

A room full of strangers

William had an overnight at a college that will remain nameless on Friday night, a program for admitted students and an interview for a great scholarship.  We drove up to pick him up on Saturday.  Usually, in a situation like that, Tony would go and I'd stay home with Janey.  It's just easier.  It's impossible to know how she'll react to new situations, and we like times like that to focus on the boys, not on her.  But I've been feeling left out of the college process, and I really wanted to see the college and to get out of the house a little.  So we took Janey with us.

Overall, it went well.  She enjoyed the ride, until the end (she seems to have a 90 minute per day limit on car rides---as soon as you pass that, she freaks out), she loved walking around the campus and she especially seemed to like the big room in the admissions office where we waited for William to be ready to go home.  It was a spacious room, with big chairs and with lots of windows, and for a long time, she just sat there in delight.  She was smiling her huge smile, and to my eyes, not being very noticable.  But still, we got stares.  I tried to tell myself that is was because she was 8, at a college, and beautiful.  But there were other young kids there, and they were not getting stares.  No, it was because at this point, she just looks different.  She doesn't act as you expect a child her age to act, even when she is not making a sound.  And then, occasionally, she makes her happy sound---the long "AHHHHHH" sound.  We barely notice that sound, but other people do.  I sat there trying to feel like an anthropologist, just observing the stares.  They weren't especially friendly stares.  They were pretty confused looking, or at times, a little annoyed.  This was a big day for a lot of these parents---their special high school seniors going to a big college event.  It was not a place they expected to see a little autistic girl.  It wasn't like there was any speech or event she was interrupting---it was just a waiting room.  But still, she wasn't part of their expected background.  At one point, she got very excited and jumped up and ran toward the door.  We did our usual thing---the very firmly and loudly spoken "STOP!" and ran after her.  That got the whole room looking.

So---what is the take-home message here?  I don't know.  I'm not going to keep Janey out of the public eye.  This was not a case where she was truly interfering with or disturbing anyone.  And my attitude I should have is---who cares?  Let them stare!  And I am usually fairly okay with that.  But somehow it bothered me more yesterday.  It felt like I couldn't do a normal rite of passage---visit a college my son was interested in.  Of course those starers were not stopping me, but their looks said a lot.  One woman especially, at the desk, just did not take her eyes off Janey.  At one point, she was going around the room talking to parents, and giving them little bracelet flash drives.  She avoided us.  She walked right past us.  That got my dander up a little.  Finally, I'd had enough of being in there, and took Janey to the car.  She was at the door.  I got passive-aggressive and said "What are those?" as she was holding a bunch of the bracelets.  She said "They are flash drives.  For ADMITTED STUDENTS"  Well, she'd been giving them to a lot of parents.  But I guess she assumed if we had a child like Janey, we certainly wouldn't have any child up for their big special scholarship.  Which we do.  Which I wanted to point out to her, but I didn't.

I guess I want to say---we are out there---those families with a special needs child.  We are everywhere.  Get used to us.  We aren't trying to interfere with your lives.  We are exquisitely sensitive to any situation where we might be disturbing you.  But you might still have to see us---in waiting rooms, in stores, at parks.  We aren't going to hide our kids away.  We don't bite.  Give us a friendly smile.  Talk to us.  You might find out our kids are pretty darn interesting and cool people.

Here's a picture of Janey enjoying the campus, just because..;.


Sophie's Trains said...

This hits so close to home. I know which looks you mean exactly because Sophie has been getting them already. The long, unashamed, the "yup, I'm staring at your kid" look. Like social norms no longer apply when there is a intellectually disabled person involved.

You shouldn't feel ashamed. Of course you had a right to be there just like anybody else. Its unfortunate that people at a university had so little class and common sense. And it sounds like Janey behaved like a little angel, so you own that! She can handle being out in the world. Its the world that needs an attitude adjustment.

Sakurafleur said...

Janey has every right to see her brother at his college - they are just going to have to deal with it.

The other day Olivia let out a blood curdling scream - out of the blue - in the supermarket. Everything came to a halt... all eyes were on us. As we walked out of the doors, a guy was just staring and staring, so I said in a very loud voice 'Yes! She has Autism!'. Then I cried all the way home because of the stress and because it pisses me off that we have to feel like this.

But good for you for taking her. OTHER people are going to have to get used to this! If there are 1 in 88 kids out there with Autism, then the world is going to have to shape up and I'm not going to apologise for Olivia or hide from society.

audball said...

That's so exciting about William - belated congratulations are in order. How proud all of you must be of him!

Regarding Janey's visit, I too used to feel uncomfortable when bringing my girl to places where the expectation was perfectly mannered children. I was almost pro-actively in a state of anxiety about these types of situations in advance.

But I came to realize a couple of things:

One, the majority of the time, things go so much better than I expected. As you found, Janey had a lot of fun and delighted in this new environment. How awesome is it that she was experiencing something new and enjoyed it so much? I can remember with my daughter, anything new was met with tantrums or tears. It's lovely Janey was so happy.

Second, there are always, *always* going to be people who don't "get it". People who stare and gawk and don't understand how long (and how much!) it took to get our children to the point where we could take them out in public and not have to worry about them running away/having a melt-down/shrieking in fear. I cannot let these types of people get me, my daughter, or my family down. As long as we are behaving within "acceptable" norms, who cares if my daughter sings when she's happy? What does it matter if she spins more often than other kids her age?

I just look those strangers right in the eye, go up to my girl and spin right on with her! I model appropriate "neurotypical" behavior of being kind, happy, and compassionate. Maybe if they see me playing along with her, engaging with her, they would have an inkling of understanding of what she is like; what her world is like. Those strangers are the losers in my opinion because they are probably not the ones who would even try to get to know a child like mine. And a lot of the time, our kids are pretty awesome, creative, and sweet.

We are living in a world where neurodiversity is going to have to be more widely accepted. I foresee successful young adults having to navigate a world where the "norm" is changing; 1 in 88 kids are affected with autism? Our schools, our workforce, and our society will be reflecting that change soon.
If these parents of high-school aged children are not willing to open their eyes to this change and challenge themselves to learn how to get along, perhaps their children will be willing.

Suzanne said...

I love that thought---remembering that Janey was having a good time and that is something to celebrate, whether the people around get it or not. And it's completely true what you all say---the world needs to get used to kids like Janey. And if they do, I think they will be pleasantly surprised. Compared to a lot of things we need to get used to in today's world, autistic kids are one of the better ones!

I could so relate to getting the car and crying after Olivia's scream and that rude guy. Sometimes right after jerks are rude like that, I have the courage to say what I should to them, but then when I am alone, I fall apart. I am the kind of person that truly would like to almost never be noticed by strangers. Maybe it's a lesson to be learned from Janey---don't always try to blend in. But I don't think my personality is going to change at this point in my life!

People who would stare at a 2 year old like Sophie need a very major update to their manners training! It should be a big part of any child's manner lessons---don't stare. If you see someone interesting, smile at them and start up a conversation, if you want. Or if you are too shy to do that, just smile. I know it's sometimes hard not to look at people acting in an unusual way, but staring is not acceptable! You are so right---people think social norms don't apply to people with intellectual disabilities. I guess I'm lucky Janey doesn't and probably never will notice the staring. I wish I could do that!

Elena said...

I found your blog linked to in a NYTimes comment, and I was surprised to see the picture in this post because it was taken directly across the street from where I live! As a senior at the college that was the subject of this post, I am very sorry about your experience here. I have found that the vast majority of the staff and students at this college are genuinely tolerant of all of the diversity of humankind (it's not just a marketing tactic from admissions!). I hope that you do not take your experience here as representative of the attitudes of the entire school, because it's a very welcoming place.

Suzanne said...

Thanks for your comment, Elena! I did find Clark to be overall a very welcoming place, and so did my son---he's currently deciding about going there, and although I think he's going to go with Brandeis, it's been a tough decision. It was mainly other parents that day that made it a tough time, and I can understand what they were feeling in a way. The whole college selection process is extremely stressful, and Janey was not what they expected to see. Part of my reaction was my own frustration at being unable to do a "normal" thing without standing out, as we did. I appreciate you reading the blog entry!