Thursday, June 27, 2013

Lost, Mistimed, and Melty.

This just happened, so it is a quick vignette which I wanted to put here as I believe it will fit in to the theme perfectly.

There are difficulties and sometimes they are very difficult. I actually do talk about them on tinygracenotes fairly often but since it is in the context of relating to what someone else is asking, perhaps that does not stand out the way it needs to. In this blog, we want to have our stories show that things are sometimes difficult and sometimes very difficult, and yet we live lives.

Yesterday.  No, the day before yesterday.

It had been a day of difficulties at the airport.  The flight changed gates three times (gratitude shout-out to the airline professionals who walked me through all this!) and they said they were sorry it was an hour late.  In the second leg of the flight, someone sat in the middle seat and kept touching me softly even though I was scunching into the windowwall so hard my muscles were crampling into shaky things. At least they didn't have time to randomly change any more stuff.

I arrived at the hotel at a little after six.  My watch, which I look at a lot, but not always helpfully, has alarms and special markers.  I have time agnosia.  The conference was starting at six and the ending of when you could register was at seven, something like that.  I checked into the room (where also others would join me, but I felt kind of responsible for them, so I couldn't flee straight there to make up the time without checking in).

That was a good thing, because the conference area was very far away from the area where you sleep, which took me a long time to find even though the lovely registration fellow deliberately gave me a room that is easy to find.  Not sure if getting lost all the time is a Thing, but I have that too.

It took me even longer to find the conference area, despite the signage.  I do not know how long, because my impression of time passing by is not accurate.  But it was long enough that I was aware it was possible I would miss out on conference registration.  I was getting very stressed out, panic alert.

Finally, I found the right place.  There were some signs on the various rooms for the conference, Society for Disability Studies, but it was like a ghost town.  Had I really been that late?  I walked around trying to find the room people were in for the reception.

Also, I melted down.


Couldn't find anyone.

Then I think I started walking around saying "Help? Help?" rather quietly and probably forlornly, not knowing what else to do.

The manager of the conference space, a very kind man, found me, and somehow worked out that I was here for the disabilities conference rather than the business conference he was also orchestrating.  He took me into his office and showed me that he was making more signs.

With great kindness and delicacy, he let me know the conference didn't begin that day, but the following day.

My calendar reading skills, just as lacking in excellence as my clock reading skills (coupled with my intense anxiety knowing precisely how liable I am to miss things or hurt people's feelings because of these problems) had apparently gotten me there a day early.

Great thanks to the kind facilities manager, who did not make me feel more foolish than I made my own self feel.  However, I was not able to articulate my great thanks very articulately, of course, having only just then become unmolten.  I think I said, "You are very good."  But he understood, and seemed pleased, and I made my way back to the sleeping part of the hotel (getting lost a bit, as I do).

After having finally managed back to my room I melted down again thinking about it.  I am a professor at a conference and if your child is Autistic you may be able to imagine this scenario with some accuracy, because I am like your child.

Here is the next part:

My beloved Layenie popped up in chat on the computer.  I miss her very much when we are apart.  She read my typing about this horrendous story and concluded that even though it was by accident, it was clever to get to the conference early because now I knew where the action was going to be and I no longer had to worry about that.  I could spend the morning doing what I liked instead of stressing out. She was right. The next day which I think was yesterday turned out much better and a lot of fun.

We do have impairments, and when we say we also have strengths and are happy to be ourselves and live our lives we do not mean to say that isn't so.  But I have to say for me, having unconditional love and support sure does make it easier to "deal with issues" that may come up, such as repeated gate-changing panic, not knowing what day it even is, and melting down in public.  Argh.

Thanks for listening,
Ib (aka tinygracenotes)


  1. I get lost in new places too. But once I've traveled any route once, it's permanently etched in my mind, my mental map. It's a constantly growing beast. I can imagine my response to all you've mentioned above being much the same. It's hard. It sucks. It's sometimes really embarrassing. But we get through it. Thank you for sharing. Because that is also really hard. The act of getting it all into words and also the putting a story of a vulnerable experience into the world. I try to do it; I admire those who do it so well. Thank you.

  2. (((Ibby))))...sorry I couldn't be there to help! But, how excellent that you were early! Yay!

  3. You always tell your stories in such a beautiful, gentle, gracious way. Because that is who you are. <3

  4. So much do I relate to all of this! When in hotels I often call the front desk to ask questions like, what time is it, what day is it, what town am I in, etc. It used to embarrass me, but one time when checking in I asked one of these questions to a real person and then apologized and he laughed it off in a kind way and said he was always happy when he was asked a question that he knew the answer. Ever since then I ask "Where am I?" whenever I need to know.

    I also have started asking a new thing of people in hotels. When they tell me multi step directions how to get somewhere - anything more than one step - I ask if they might walk me there. So far only one time has someone said no. Mostly they are accommodating, even when it is obvious they aren't too happy about it. I just am extra kind to the unhappy campers and hope it helps them.

    But, at the end of the day, even though autism is hard and it takes continual energy to outsmart the obstacles I can and then live with what I can't I am glad to be me and wouldn't want to be anyone else. If it weren't for being autistic I would not have all the wonderful friends I have come to love and my life would be much smaller - maybe easier - but smaller and not quite as rich and full as it is today.

  5. Always listening...always learning...thank you, Ibby. xo

  6. I love you so very much Ibby. This post is beautiful, which of course it would be, because so are you! Putting it on my blog roll!! YAY!

  7. Another autistic adult here. I related to a lot of this. Your story reminded me of a conference I was a headlining guest at last year. It was held as part of WorldPride in London, the day after the march. I opened the conference with an hour long history talk.

    The actual conference and my talk both went extremely well. I'd arranged to stay with a trusted local friend who made sure I found the venue and attended the conference with me. My talk was well received and I found several write ups online afterwards that were very complimentary. I seemed to make a good impression on people meeting me that day and lots of people wanted to talk to me at the pub afterwards.

    The people who had met me on the march the day before had a different first impression of me. Despite planning carefully, I had missed my train and arrived far too late to make it to the assembly point to meet the conference organisers and join the marching group in advance of the march.

    I'd gone to the end of the march but they weren't there. The organiser then phoned my mobile and told me to come back to the start as quickly as I could because there'd been a huge delay and they hadn't set off yet. By the time I made it across the London Underground, running up several escalators, my legs were tired. When I left the station and phoned the organiser back, I was told that they'd now left and I should walk quickly along the march route.

    By the time I caught up with the marching group, I didn't know who anyone was, my legs were fatigued, I had a heavy weekend bag and it was noisy due to being a typical Pride march. The organiser eventually worked out who I was and said hello and gave me a t-shirt, but I was already feeling overwhelmed and overloaded and couldn't really socialise. However, I helped with giving out leaflets along the march route and tried to be friendly with everyone.

    I was proud of myself to keeping composed and making it to the end, despite being tired and my hypotonic muscles very fatigued. But after barely sitting for 15 minutes we were told that we were going to, unexpectedly, walk further across London to a busy world food market to find something to eat. Halfway there my legs gave up on me and by the time I actually made it to the market, I was in floods of tears and couldn't explain what the problem was.

    Eventually the friend I was staying with saw my messages and came to meet up with me, by which time some nice people had looked after me and helped me to regain some composure.

    I very much doubt that the people who met me being so confident, prepared and articulate at the conference would have believed that I'd been so vulnerable, overwhelmed and overloaded the day before. This shows how things going to plan, and there actually being a clear plan, is hugely important to me.

    Every conference since then I've arranged to arrive a day early and made sure I knew exactly what was scheduled and that someone on staff knew I might need more help.

  8. This poem was on our study wall when I was growing up. It was there fr so long that it became part of my memories, even though I never tried to learn it.

    "When things go wrong as they sometimes will,
    When the road you're treading seems all up hill,
    When the funds are low and the debts are high
    And you want to smile, but you have to sigh,
    When care is pressing you down a bit,
    Rest if you must, but don't you quit.
    Life is queer with its twists and turns,
    As every one of us sometimes learns,
    And many a failure turns about
    When he might have won had he stuck it out;
    Don't give up though the pace seems slow--
    You may succeed with another blow,
    Success is failure turned inside out--
    The silver tint of the clouds of doubt,
    And you never can tell how close you are,
    It may be near when it seems so far;
    So stick to the fight when you're hardest hit--
    It's when things seem worst that you must not quit."
    -Edgar A. Guest

    And if that fails, remember that your calm and collected, never ruffled, super-organized, sensible, witty, incredibly smart wife... is the one who locked one of your twin sons in the car and had to get a random stranger to call the police to break the little fellow back out again. ;)

    I love you!

  9. Thank you Ib - such powerful writing and such important "testifying". Blessings to you always! So looking forward to meeting you in a few weeks!

  10. Yes, you are like my child!! He would do much the same as you, getting lost and needing help. And he would call or text me and I would point out the good things about what happened, and then he would calm down and have a good time. :-) I am glad there are people who are good and who help. I am also glad there is you. Thank you for telling this story.

  11. I'm loving these posts. Thank you so lovely to read

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  13. Thank you. Thank you for this blog, like, more than I can coherently say right now. You are appreciated,so much, by me.

  14. You mean this happens to other people too?

  15. I can relate to some of this, being severely ADHD. I've missed weddings and funerals of people I cared about because of my deficits. I've been known to max out the annual limit on the number of times AAA will send someone to my rescue (8, I believe) when I've left my lights on or locked myself out of my car. I've been lost and exhausted, on the verge of tears, and in need of a stranger's help more times than I like to remember. I'm a college graduate with a responsible job, and I'm learning to tell people up front that I have no sense of direction and no memory to speak of, instead of trying to hide it all the time. Bless you for sharing this post.

  16. These replies make me feel so good. It's like a smiling sea of solidarity. Long live the Internet! You are all so awesome! Thank you!!!!

  17. I so relate to this. I can't tell left from right, the words 'metre' 'kilometre' and so on have absolutely no meaning to me, and unless it's on a google map where there's. dot telling me where I am, I just can't read maps. They're fascinating, but how on earth do you know where you are? However, I can memorise entire maps, and could probably draw a map of most of south east Melbourne (which is where I live), or at least the parts I've been before. Yet I couldn't follow that map... such is autism, I suppose.