Saturday, July 18, 2015

To the Woman Who Rolled Her Eyes When My Daughter Asked a Tour Guide If She Would Speak More Slowly

To the Woman Who Rolled Her Eyes When My Daughter Asked a Tour Guide If She Would Speak More Slowly:

You know who you are. You're the one on the college tour with your handsome son and tall husband. You're the one with the perfect salon-blonde hair, the Louis Vuitton shoulder tote, and the 1.5 carat heart-shaped diamond earrings. I saw you. I took you in. I thought about you for so much longer than you ever thought about my girl. I carried you along with us. I could not leave you behind on the tour, though my girl seemed to not even notice you.

It happened in a micro-second – your disdain and dismissal of my girl.

All of us were on a college tour (yes, dear readers, we are going on college tours – more on that soon!)

We were in the long echoey hallway of a major university in our city and the student tour guide was showing us the university's library from the corridor just outside – not from the quiet zone just behind the glass doors. A custodial worker began pushing a noisy cart through the hallway – it echoed and rattled off the long tile and cinderblock walls of the hall.

As the tour guide described the two million volumes available to students, my girl said, "Excuse me, could you speak a little slower, I'm having trouble hearing." This was a polite request for an accommodation. She spoke softly, clearly, with good tone and no urgency (however urgent it may have felt to her). Trust me, we've worked on this.

And that's when it happened. You rolled your eyes and then you looked around to find someone with whom to share this moment of superiority and dismissal. But no one returned your look. It's possible no one even saw you except me. My girl didn't seem to see you, for which I'm grateful.

The student tour guide graciously adjusted her pace and we continued on the college tour.

But from that moment forward, I could not stop thinking of you. Honestly, I was furious with you. Who could you be? Who are you that you would dismiss my girl's calm and polite self-advocacy?

I tried (and failed) to be generous: Could you be terrified about the road ahead for the handsome young man you have raised? Could you be often considered stupid and slow yourself, as pretty blonde women generally are? Could you be scared and alone behind the branded bag and bobbles, next to the perfect-looking son and husband?

I couldn't take your side. No, I wanted to take you aside and ask you how you could do that? How could you roll your eyes at my girl's request for a little slower speech?

I wanted to tell you a thing or two about my girl. I wanted to tell you how she has worked harder than you have likely ever worked on anything just to learn to talk. I wanted to tell you that she was told that she'd never learn to read and is now passing her high school exams and looking at colleges. I wanted to tell her how she hard it is for her to process language, especially in noisy rooms or corridors like this one. I wanted to tell you that your contempt makes the world a smaller place for my girl, but for you as well, for you most of all.

But I didn't. I didn't take you aside because, well, I didn't want to upset my girl. She didn't seem to notice you and I didn't want her to. She's the point, you aren't.

But still, you were there, and you changed my day. You made me wince at the realization of how much farther we have to go. I thank you for that realization. I won't soon forget you in the heart-shaped diamond earrings. I hope that some day you'll have a heart that's made of something other than stones.

Yours in college searching,

m.

19 comments:

FlutistPride said...

Pretentiousness is everywhere. It's an ineffective and costly form of armor.

Kathryn said...

I have a hearing loss not autism but I have experienced similar reactions from both other people on college tours when asked the tour guide politely to talk louder. I hope this process goes smoothly as possible for your daughter. Will she be a senior in the fall?

Autisms Edges said...

I'm sorry you get that same eye-rolling response. It's just so thoughtless and wrong! And, yes, she'll be a senior this year, so we're in full-on transition planning mode and looking at colleges that have supportive services for students on the spectrum.

Kathryn said...

So will I. I saw in earlier posts, you live in NY. So do I. What colleges have you looked at so far?

Kyra said...

Jesus. That woman. BLERG! What a JERK! I would have felt EXACTLY as you did. In fact, I am currently feeling that way over here after reading.

But!!!! Looking at colleges! Wooooohoooooo! I am cheering!

Autisms Edges said...

Kyra!!! Hi there! Yes yes yes, college tours! Hard to believe that we could be on college tours for a girl who they said would not learn to read! So much for expert predictions! And so thrilled to see you blogging and coaching. I went to a Martha Beck seminar in Phoenix/Scottsdale back in 2008 . . . she was quite amazing! Looking forward to seeing your projects unfold! xxm.

Autisms Edges said...

Kathryn, We have focused on colleges that have supportive services for students with autism or other language-based learning disabilities, so Adelphi, Curry, and Landmark. We will be looking at BMCC and other CUNY schools that participate in CUNY Project REACH, at PACE's Oasis Program, and at Mercyhurst in Pennsylvania. We have also looked at Clark and Fordham, because we have friends working at both places, but these schools don't have autism support programs at the moment. I will be writing some posts about this soon because I know others are also looking to come up with plans for their kids who are moving along toward young adulthood!

audball said...

I can't believe the nerve of that woman. I would have been just as outraged as you and kudos to you for not calling her out on the spot ( I may not have the same restraint in a similar situation). My only thought is something my husband once said when we encountered an obnoxious old goat who did something similar with our girl. He said, "You are only seeing this person once, and she is unbearable in this moment. But imagine: she has to live with *herself* for the rest of her life." For some reason, having that perspective helped me - just a little.

On a different note, congratulations to Sweet M! Touring colleges and thinking about her future is such a major milestone. Please add me to the list of people who will be following your blog closely for what is in store. Hugs to you both! :)

Autisms Edges said...

Hi Audball! So happy to see your comment in my email box! You (and your husband) made me laugh with that excellent point about the fact that this woman will have to live with herself! Yes, we're on the college search now (actually, right now we're still working on one standardized test), but more on colleges ahead . . .

audball said...

How exciting! I just went to this site and saw Rutger's program looks pretty comprehensive.
http://collegeautismspectrum.com/collegeprograms.html

Autisms Edges said...

Wow! That's excellent. I didn't know about that one! I guess I have more research to do.

Did you see this program called My Circle of Girls? http://www.mycircleofgirls.com/ I just read a news story about it. A woman with a daughter on the spectrum started it. I wish we had a chapter in NYC, though it's a little late for my girl as she's really a young woman now.

Keep us posted on how your girl's doing!

audball said...

That sounds like a wonderful program! It would have been nice to have something organized like that for our girl when she was younger. A person on the Moms of Aspergirls Facebook page (good group, if you Facebook!) mentioned something called Circle of Friends. The caveat to this program is that it used "neurotypical" pre-teens/teens as companions. Unfortunately, there are some kids who "game the system" and use their relationships within the club to gain access to fun, sponsored events that they wouldn't have access to without an Aspie friend :( . I hate it when people take advantage of others!

E. is doing well.. last year of middle school! We are in a great art magnet school that has a Communication-Behavior Team (SpEd teacher that specializes in autism, 3 para-educators, school psych, school counselor, and school SLP). Instead of having 2 electives in art, E. has one art elective and one period for this Team CB class. In the class, kids learn organization skills, things that address working memory and executive function skills, and extra study time with teacher help. There's also a social piece with the SLP and school counselor. The idea is that we scaffold what we need to in 6th grade, remove some of the support in 7th, and finally, by 8th grade (hopefully!) navigate much of the work and social stuff as individuals. So far the program has been great and my daughter loves the art. She has taken weaving, painting, sculpture, and drawing. I wish all schools had a similar program. Unfortunately, many schools in our district lump all kids on the spectrum with SpEd teams; combining kids with learning disabilities, speech issues, and autism together :( . We're nervous for high school, but we read about your Sweet M and she (and your family) give us so much hope! Thank you for sharing your experiences... :)

audball said...

That sounds like a wonderful program! It would have been nice to have something organized like that for our girl when she was younger. A person on the Moms of Aspergirls Facebook page (good group, if you Facebook!) mentioned something called Circle of Friends. The caveat to this program is that it used "neurotypical" pre-teens/teens as companions. Unfortunately, there are some kids who "game the system" and use their relationships within the club to gain access to fun, sponsored events that they wouldn't have access to without an Aspie friend :( . I hate it when people take advantage of others!

E. is doing well.. last year of middle school! We are in a great art magnet school that has a Communication-Behavior Team (SpEd teacher that specializes in autism, 3 para-educators, school psych, school counselor, and school SLP). Instead of having 2 electives in art, E. has one art elective and one period for this Team CB class. In the class, kids learn organization skills, things that address working memory and executive function skills, and extra study time with teacher help. There's also a social piece with the SLP and school counselor. The idea is that we scaffold what we need to in 6th grade, remove some of the support in 7th, and finally, by 8th grade (hopefully!) navigate much of the work and social stuff as individuals. So far the program has been great and my daughter loves the art. She has taken weaving, painting, sculpture, and drawing. I wish all schools had a similar program. Unfortunately, many schools in our district lump all kids on the spectrum with SpEd teams; combining kids with learning disabilities, speech issues, and autism together :( . We're nervous for high school, but we read about your Sweet M and she (and your family) give us so much hope! Thank you for sharing your experiences... :)

Autisms Edges said...

Sorry, Audball, I seemed to have missed this comment until just now! We were away in California, but now I'm back in the swing of things!

E's school sounds fantastic. I wish there were more art at our girl's school. It's so intensely academic that I feel like there is not enough time for her to cultivate her gifts (that she is almost always working out of her areas of deficit).

We are back to school, but school has been super disrupted -- here in NYC the kids get the Jewish holidays off, the Muslim holiday off, and now they have Friday off because of the traffic disruption from the Pope's visit. So even though it's the third week of school, they still haven't had a full week of school. I have been joking that with all the religious holidays that it will be a miracle if we can get any work done this month!

Looking forward to hearing how things go for E in the year ahead!

audball said...

I'm glad you a good break before senior year. Hope things are continuing to go well. E's coursework is getting more comprehensive. Do you mind my asking how you managed M's anxiety about schoolwork? We're particularly stumped about how to explain to E that maybe trying your best is good enough and not getting an "A" is not the end of the world. Did you all have academic stress to contend with during high school too?

audball said...

I'm glad you a good break before senior year. Hope things are continuing to go well. E's coursework is getting more comprehensive. Do you mind my asking how you managed M's anxiety about schoolwork? We're particularly stumped about how to explain to E that maybe trying your best is good enough and not getting an "A" is not the end of the world. Did you all have academic stress to contend with during high school too?

Anonymous said...

I think if my child on the spectrum could even attend college I wouldn't care about someone else's eyerolls. I would be thankful they weren't going to be spending their life in a group home.

Autisms Edges said...

Hi Audball,

So sorry for the long delay in responding. Hectic time of cross-country eldercare and all else here at home. Our girl had some testing anxiety, but she did not seem obsessed about it. But M didn't ever routinely get A's, so she was used to getting Bs and Cs and then working her way up. She really has to work hard for her grades. It's so not easy for her. We've mostly been a "do your best" and if you want to re-do you can. (Except on the Regent's where her dad and I had epic battles over the re-do's.)

For your girl E it might be worth exploring what getting an A means for her. Does it mean she's able to be as successful or more successful than others without her neuro challenges? Does it mean she'll have a great future? Does it mean she's smart even if not other things valued in the NT world? There are lots of things getting an A can mean to person, and once you know what it means, that might lead you to what to do to quell her anxiety.

Or her anxiety may just be there, as it can be for our girl, and just looking for a place to hang its hat. In this case, the content of the anxiety isn't really relevant. In this case, mitigating the anxiety is . . .

Sending you all my best for a calm test-taker in your future (much as I abhor tests!)

m.

Autisms Edges said...

Hi Anonymous,

I understand -- my girl and her problems can look enviable when your own loved one has problems that our world thinks of as worse or more serious. And that may, indeed, be worse and more serious.

When my beloved colleague with a mostly non-verbal son on the spectrum who is my daughter's age and I are talking about our kids, there is a chasm between our problems. While I am trying to figure out how I'll ever afford college and the special support services our girl will need, he and his family are faced with finding a new group home when he turns 21.

We both have challenges with supporting our kids, but some people would say that mine are "better" or "easier" than his. Maybe they are. Maybe they aren't. I don't know. It's just that I know most intimately about our life with her, about her challenges and ours, so that is what I write about here.

In the case of the woman who rolled her eyes at my kid, my guess is that this woman would be the same person who you'd find staring at your kid, or rolling her eyes, or otherwise singling your loved one out as annoying, failed, an inconvenience, a drain on public resources, or even less than human.

So I think she needs to be called out. Because what you and I share, despite our differences in terms of the challenges that we face, is that our kids are too often treated as other, as less than, denied their basic human rights. Eye-rolling is a relatively minor offense, but it signals to others that it's okay to ridicule kids like mine, and kids like yours. And it's not. It's just never ever okay to do that. That was my point, but I can see where the relative privilege of having a so-called "high-functioning" kid of the spectrum would make it seem a thoughtless complaint. I'm sorry that you had a discomforting experience reading this at Autism's Edges.