Susan's Blog

Sunday, November 7, 2010

The Dignity of Risk

I went alone with Nat to Orlando this past Friday, just for one night.  Of course I was a little nervous, because I had never done anything like that — with any of my sons, actually — but mostly because Nat has a history of difficult behavior, from tantrums in public to happily waving his arms while talking to himself.  The tantrums have nearly disappeared in the last 3 years, but still I act like it could happen any minute!

I was sick of that, sick of the fear that kept me from fully enjoying Nat as much as I wanted to.  So, with Nat’s 21st birthday nearly here, I decided I would take him with me to a conference in Orlando (the 60th Anniversary of the ARC of the US) where I would be giving a short presentation on an authors’ panel.  The hotel was located right in Disneyworld, extremely convenient to the parks, and it seemed like maybe we could do it.

Of course we could do it.  Nat’s traveled on long plane rides so many times by now.  He’s proven himself over and over to be a guy who is up for many things, and also very forgiving, despite his own anxieties about the uncertain.  I’ve written so many times about how he’s surprised me with his ability to try something new, or something that was not always easy for him.  I am therefore not surprised that the trip was completely smooth.  Security was easy, they were lovely to Nat; the planes were on time; the weather was high sixties and sunny; our room was comfortable; the presentation went perfectly.

We obtained the “Special Needs Pass” at Guest Relations at Disney, no questions asked and so we had no lines to wait in.

We found that we liked doing the same things.  Once Nat became familiar with the scary-thrilling intent of rides, he was into it.  With Nat, most things are about conveying the overall concept to him, and then familiarity breeds interest.  By the time we were at Splash Mountain, Nat not only got it, he remembered Splash Mountain from when he was a boy of 8.  I could just tell, because of the excited way he walked towards it and the way he kept repeating, “Splash Mountain, Splash Mountain.”

How perfect was it?  We didn’t even get very wet on that flume.  We walked and walked (very fast, which is the way we both prefer it), and eventually the sun was setting.  I really had to pee.  I figured Nat did, too.  We didn’t want to go home yet.  And here we hit our first snag:  there were only large public bathrooms, no individual disability-friendly ones. We stood there outside the men’s room and I went over the risks in my head:  1) a creepy guy talks to Nat.  2) Nat inadvertently shows private parts.  3) Nat can’t figure something out, like the hand-motion towel dispensers and freaks out.  4) a creepy guy talks to Nat.

Then I allowed myself to consider these problems rationally.  1) Even if a creepy guy talked to Nat, Nat would not answer him.  It often takes a lot of prompting to get an answer if Nat doesn’t know the person.  Plus, why would someone single out Nat, a tall man not making any trouble?  Chances seemed slim.  2) Nat is not all that aware of what counts as public nudity, although he doesn’t intentionally do anything inappropriate in public.  It’s only about open doors.  So, I could tell him to close the stall door.  Most of them stay closed, even if you don’t lock them.  Then at least he would get credit for trying to be private.  3) Nat could probably figure out an automatic towel dispenser or drier.  He is pretty good figuring stuff out.  4)  Again, why would someone talk to Nat, other than the fact that he’s very cute, and why would it be a problem?  Most likely there would not be a creepy guy in this family-oriented place.

This is what I’ve come to think of as “the dignity of risk.”  If Nat is to become as independent a man as possible, he must be allowed to do what he needs to do, even if it is a little scary, not completely predictable.  I told him to go quickly and to close the door.

Just a few minutes passed and I then heard the sounds of very zealous towel-dispensing and crumpling.  Nat came striding out, looking the same as ever:  ready for the next thing.  Now it was my turn, but I have done that before.  I just tell him to sit down and wait for me, and not to go anywhere.  I know he will do as I’ve asked because even if he got up to walk around, he always ends up looking around for me.

We’re together, after all.  


What a wonderful trip. Congratulations on the restroom use! i always wonder how this will ever work. Actually I’m still just praying they get toilet trained!

— added by Alice on Sunday, November 7, 2010 at 6:55 pm

🙂 I’m so glad the trip went well!

— added by KWombles on Sunday, November 7, 2010 at 7:18 pm

So glad you had a great trip. I love your concept of the dignity of risk!

— added by Melissa on Sunday, November 7, 2010 at 7:24 pm

Great job Susan! My daughter will be thirty soon and I still have to keep my fears in check. (I almost called them irrational fears, but they’re really not irrational at all) There is some kind of disconnect that happens in my brain when I worry about danger in regard to my daughter; it’s as though she is still a little girl. I always have to check myself and step back and look at her as the adult that she is, and how the rest of the world sees her.

— added by Mary on Sunday, November 7, 2010 at 8:14 pm

What a wonderful trip for the both of you. The dignity of risk indeed, the dignity of just traveling with your son, the dignity of love. Beautiful Susan!

— added by Penny on Sunday, November 7, 2010 at 8:22 pm

Yes. Important concept, the dignity of risk.
Congratulations to both of you on a great trip!

The reference to “happily waving his arms while talking to himself” got me thinking. It is a God-given right of every one of us, autistic or not, to be harmlessly weird. (Says so, right in the Declaration of Independence: “the pursuit of happiness”. Thomas Jefferson, who wrote that, is about as close as our kind has gotten to being well-represented in US government.)

The problem lies with *others* with any sort of power over us (whether legal or social) who either fear, or attempt to take advantage of, such choices. Along a spectrum of increasing-legitimate-authority-to-wield-power, that can include bullies (at the lower end), and inadequately-trained law enforcement officers (towards the higher end). Some, like the bully, belong to a very-high-incidence diagnostic category that should be in the DSM but isn’t (yet): A-NOS – a$$hole, not otherwise specified. Others, like the cop, mainly need to be better informed and better trained.

It’s very much a question of teaching our kids how to *recognize* such power dynamics, and how to *respond* to them. The catalogue of possible responses needs to include learning how to *minimize* acting different when it is truly dangerous to do so. So if one’s child hasn’t mastered recognizing such contexts and successfully suppressing behavior that will call unwanted and possibly dangerous attention to them, it’s a legitimate worry.

On the other hand, most parents (particularly parents who haven’t, in the course of growing up, had to suck it in and suppress being themselves in environments in which power without moral legitimacy is being wielded to make it dangerous or punitive to do so) don’t do enough to teach our kids to recognize those circumstances where they *are* empowered to (safely) assert their right to be different (including to be harmlessly weird), nor to teach them the skills for effectively doing so (and possibly changing minds and creating teachable moments for others in the process).

That needs to change.

One might argue that fluent expressive speech is required to be able to do that, so this is irrelevant to parents of autistic children with no or limited expressive speech. I totally disagree.

I think that Nat, by virtue of the parenting he’s received, and by virtue of the hard work he’s done to make sense of the world as he’s grown up, will be able (eventually, if not already) to create such teachable moments.

Sometimes doing so with few words is even more powerful than the opposite. I’ve seen too many nonspeaking peers, in the AutCom community and elsewhere, engage in effective advocacy of that kind, to think otherwise.

Sorry for the extensive tangent :-), but it just struck me strongly that way.

Congratulations to both of you, and glad you had so much fun together!

— Phil

— added by Phil Schwarz on Sunday, November 7, 2010 at 8:41 pm

Susan- If I were in your position vis a vis bathrooms or locker rooms ( I’m a guy and can go in), I think it makes a lot of sense to either arrange an escort from the facility in advance or buttonhole a stranger with a good vibe…has little kids with him, etc. Your fears are very valid and the risks are real. I have bailed out tons of moms by intervening to help avoid misunderstandings in locker rooms over the years (bathroom and shower protocol is a bigger problem than many realize) . Moms waiting right outside the door doesn’t matter. I think you were and may continue to be lucky…until you aren’t. Our kids are the perfect victims. Add on top of that the risk of a young man with autism violating social mores by staring or pointing or saying something that is easily misinterpreted and it’s game set match. If you want to hear what the cops say about their experiences, I’m happy to put them in touch with you. There is no margin for error here.

— added by Dadvocate on Sunday, November 7, 2010 at 8:45 pm

Dadvocate, I hear you and it was just this that was going through my head as I waited out there. I know I was — Nat was — lucky, and that is why I called it “risk,” because risk does not always turn out well. I don’t think there is a simple answer, you’re right. I guess I could try to find someone to look out for him, but then again, if that is who I see going in to the bathroom again and again, then why not assume that those in the bathroom are just as trustworthy — or not — as the friendly-looking guy going in?

I have plenty of cop friends and I think your advice is sound; I will ask them myself what is best here. I bet I won’t get one single similar answer. That is what it has been like for me parenting Nat all along: there is no one who has The Answer. In the end it is just Nat, Ned, and me who decide the next steps. We think, we assess, we work hard, and then we make the best decision moment by moment. Doing what I did could and will lead to Nat being more independent. There is never a guarantee that there is no risk in something. But this is how he learned to ride a bike and to go for walks in the city, neither of which are risk-free.

— added by Susan Senator on Sunday, November 7, 2010 at 10:08 pm

This is different, Susan. I think all your Police Officer friends will all give you the SAME answer. It’s hugely risky whether it’s predators and/or legal misunderstandings. These are big problems. I’ve spent years working on safety issues. Please do speak with your friends who are sworn Officers. You may be surprised at the lack of flexibility or judgement calls that they can exercise in any given situation. It’s appalling and shocking how little they can legally adapt rules for people with disabilities.

I know way too much, on and off the record, and think many in our community do not understand and/or underestimate these risks. They are demonstrably large. Leaps of faith are ill advised in my opinion.

Again, I can direct you to real cases if you wish but I can assure you that you don’t want to go there.

— added by Dadvocate on Sunday, November 7, 2010 at 10:38 pm

I understand the point you’re making, Gene, and as I said, I would look into it. But I stand by what I’ve said here. No situations for any of our children are 100% predictable and risk-free and parents have to assess situations based on their knowledge and experience of the world and of their children. I am not going to keep Nat from the world — that is how he learned how to go to sleepaway camp, ride a bike, and now, to live (successfully) in a group home. That was all way beyond our comfort zone, but he did it. My husband is the one who takes Nat into men’s bathrooms, and he will continue to do so, and to teach him what to do, but I made the best decision I could at the time and we are okay. Presented with the same decision in the future, I would probably look for a Ned or Dadvocate type of guy to help out, and then pray that he was indeed whom he looked like.

— added by Susan Senator on Monday, November 8, 2010 at 6:25 am

FYI, Disney World parks do have disability-friendly individual restrooms. They usually are located in the vicinity of the others but sometimes take a bit of looking to notice. They are identified with the male-female-wheelchair symbol on the park maps. For example, there are ones near Space Mountain and Splash Mountain in the Magic Kingdom. My 18-year-old non-verbal, at times very aggressive, son loves to go to Disney World, but it is at times a stomach-churning experience for me fighting anxiety when I see situations that can trigger behavior. It’s hard to not ride that wave of fear when you know better than anyone what can happen. My son is getting a little better at handling things without melting down, but still not dependably. Interestingly, on several Disney visits, I’ve had a number of parents there with older kids (now adults)go out of their way to tell me it got easier once their kids got past their early 20s. Here’s hoping!

— added by Julie Campbell on Monday, November 8, 2010 at 8:26 am

Love that last pic of the two of you! A mom and her son having a great time together!

— added by Suzette on Monday, November 8, 2010 at 9:34 am

What a wonderful experience for both of you. Thanks for including the “toilet vignette”. I’m wondering how many more years I can get away with bringing my boy into the bathroom with me, this gives me hope that maybe someday I won’t have to! Thanks for sharing!

— added by kim mccafferty on Monday, November 8, 2010 at 10:40 am

Hip Hip Hooray!!!! Susan that is wonderful, what an adventure for you both! I think this is going to be our year for Disney, and I’m just as excited as the boys. Hooty hoo – Space Mountain!! Lisa

— added by lisa on Monday, November 8, 2010 at 4:00 pm

Lisa, also be sure to check out “Soarin'” at Epcot. It is the best ride I’ve ever been on.

— added by Susan Senator on Monday, November 8, 2010 at 4:01 pm

Sue, how wonderful on so many levels that you did this! And yes, Soarin’ is incredible.

— added by Melinda Coppola on Monday, November 8, 2010 at 7:17 pm

I’m so glad the trip went well, and that you had the chance to be together just you two.

— added by kristen spina on Monday, November 8, 2010 at 7:19 pm

Every time I read your blog I am filled with so much hope for my son’s future.
Thank you!

— added by Debbie T. on Tuesday, November 9, 2010 at 2:22 pm

I know this isn’t the point of this blog – but I am stuck on his tantrums have almost gone away . Wow! My son is 9 and I dream of a day…. thanks for sharing some hopeful thoughts.

— added by Diana on Wednesday, November 10, 2010 at 7:22 pm

I was there with Jake the same day! We had a blast too…. often wonder why he does better in Disneyworld than home! You would think sensory overload but nope…. just pure love! Glad you had a wonderful time! : )

— added by Jake's Mom on Friday, November 12, 2010 at 8:40 pm

You are clearly a very special lady and your son is a lucky man! Delighted to hear your holiday was such a success!
I’ve got 2 special needs sons … 19 & 17 years old. The 19 year old is doing great but the 17 year old is really struggling. Every day feels like a challenge but we are not without hope that he will gain the strength he needs to manage his special needs!

— added by Karyn Climans on Wednesday, November 17, 2010 at 12:38 pm

We have two children with autism and live in Northern California…I grew up going to Disneyland almost once a year. But we have not taken our children (ages 4, 6, and 8) yet because just the thought of it gives me an ulcer! Our 4yo has high functioning autism but she is an eloper right now and terrifies me in crowded places. My 8yo has more severe autism and I just worry about meltdowns and rigidity about how things would “have” to be done. I have heard some wonderful stories about going from other families with children on the spectrum and so I am hopeful. But I think we’ll wait until the little one has passed her “boy it’s so fun to run away from you in this crowd of people!!” phase. I am glad you were able to take what sounds like a very special trip with Nat. I love that last picture of you two!

— added by Tamie on Saturday, March 24, 2012 at 3:40 am