Seriously?

So, I'm on my way to visit the family in Wisconsin for a few days. At the moment, I'm sitting in the airport in Minneapolis, waiting for a connection. On the way here, I had an aisle seat. The woman in the middle seat was one of THOSE travelers...constantly fidgeting, going to her bag, re-situating her things...spread out her paper to read...in heavy turbulence, she asked for a hot coffee (with predictable results, and YES, I went and got a stack of napkins for her)...

...But what really threw me, what sticks with me to this moment, was when she asked the flight attendant for a Fresca. A FRESCA.

Do they still make those? Last time I heard someone mention a Fresca, it was Judge Smails.

Ramblin'

I've been doing a little running around...

First, on the aforementioned trip to Coney Island, my first. I was actually recruited to go - Dora's parents were taking her, and I'm one who will go on the rides with her (OK, seriously, when they presented her with the idea, I understand she said "Dora and Russ go to Coney Island" or something like that. The point is, I served an important role.)

On the way, I was thoroughly indoctrinated to the idea that this was a very, very special place. We arrived, Dora grabbed my hand, and we charged up the ramp to the boardwalk, leaving the folks behind. As it turns out, my role as "official ride goer-onner" was unnecessary - she saw the beach and the ocean, and that's where we stayed the rest of the visit (or at least, until we made our way to the original Nathan's.). We sat in the sand and made sand castles - like her Mom, Dora has a real affinity for the ocean. Which brings me to...

Montauk. Oh, man, Montauk. Again, my first visit - another trip for Dora, during the interim between school programs. They've taken her before, and based on past experience, it was determined another pair of hands may be useful. I was invited, I couldn't make it for the full trip, but mid-last week, I hopped on the train for the three hour trip to the last stop on Long Island.

I arrived in a pouring rain - concerning, to say the least. They picked me up, and we headed for a restaurant on the docks. It all started good - I took Dora for a walk down a dock, holding her hand, and she did great with the wobbly surface. We took her inside, and here's where things broke down - get this. The doors were open, it was 11:30 a.m., and we walked in. Dora settled into a booth, when a kid waiter walked up to us to say the restaurant was closed until noon. He said we had to leave until then. Dora's folks talked to him, then to an older (apparently more responsible) waitress, explaining Dora was special needs, and she would have difficulty transitioning out of the restaurant. They said it was the "owner's policy," and directed us out to some dirty rickety chairs. Just as we expected, Dora cried, she tantrumed, she had a very difficult time. We got her to the car, and went to a different restaurant, where (thankfully) she had a much better time.

This was a concerning start, but things got much better. The rain cleared up, and we took Dora out onto the beach in the evening. The next few days were clear, and we took Dora to the pool each of the next few mornings. Dora's aunt and uncle came to stay as well, and we had a good time. So much so, I may be joining another trip at the end of the summer again. Hope it works out.

Sunday at Coney Island

Wow. Crazy Day.

Priorities

I've spent notably little time in the Blogosphere this month, evidenced by the small number of posts in June. This is not by accident - June is, by far, the busiest time in my annual work cycle, and this year has been no exception. Then, when there is some time, there are things that take precedence over sitting around on the computer - those who know me will know, one item at the top of that list is making time for my little friend, "Dora."

I've been to her place a couple times this past week to give her Mami a much-needed rest - she has been taking to getting up 2, 3, 4 in the morning lately, and the first thing she wants to do is wake Mami for some company. So, on a rainy Sunday afternoon I hung out with Dora while her Mami slept in the next room. We worked on a book, one of her favorite activities. She makes her own books - sometimes she draws them herself, sometimes she tells me what to draw and I do whatever she asks. There are scores of these books, stapled-together stacks of paper, around the apartment; at one point I set up a stack of plastic filing baskets to try to get some order to her collection, but they quickly overflowed the capacity. You can't throw these away, because months later she will look for her work - this is what happened this week, as she tracked down a book made months ago, "10 Little Mice," so we could make some new pages to add. Every page had ten little mice in some activity - in the desert, running in the door at Barnes and Noble, running up the escalator at Barnes and Noble (poor Mami - one of those early mornings, she had to do her best to draw the pictures for her. Mami did pretty good with the "10 Mice on an Airplane" and 10 Mice on a Bus" pages, but some of the others, well...Mami never fails to point out to me that I set kind of a high standard.)

Last night, Mami was crashing hard, and she asked if I would come over again. On my way there, she tells me that Dora now wants to go to Barnes and Noble. It had been a rough day, with several tantrums - but, after being sent to her room for one such outburst, she came out, shortly after, having dressed herself, and asked "can we go to Barnes and Noble?" She was now behaving well, so Mami was OK with this. Because I was on my way, Mami asked Dora if they could wait for me first; she said "yes" and sat down and waited patiently for me to arrive - she wouldn't turn on the TV, she just wanted to wait for me.

I arrived, I said hi to her, and she beamed, grinning ear to ear when she saw me. Mami asked me if I'd take her myself - she was very tired, and she still had to do laundry. I agreed, and Dora and I headed to their SUV. We were off, Dora was doing great...in fact, the whole trip was fine. I kinda hated giving Mami the updates, knowing what a rough day they had had earlier with her:

- "yeah, it's raining, and we had to run in the rain in and out of Barnes and Noble, but she didn't have a problem with that."

- "She grabbed a bunch of stuff, and I had to tell her to put a few items back. She resisted a little, but then put back the items, no complaint. She ended up buying some bath toys - some ducks, some little pigs, some dolphins."

- "The line at the checkout was a little long, but she waited, no problems at all. One good guy ahead of us in line could see that she had Autism and let me cut in front of him."

- "We stopped for gas, and I had to turn off her DVD player. I was worried she'd get upset, but in fact she was fine. I was pumping gas, and I looked through the tinted windows at her. She was playing with her toys perfectly fine. She saw me, she grinned, I waved, she waved back and then blew me a kiss."

- "She asked to go to Wendy's. On the way back, she asked for her french fries. I wanted to focus on the road with the rain falling, so I told her she would have to wait until we stopped. She waited, no fuss at all."

At this point, Dora's Mami didn't know what she wanted more - to strangle me or to canonize me as a saint. Like any kid, Dora takes her parents for granted, but I'm not around all the time, so I get special treatment, I guess. We joke about it being very frustrating for her to watch, but in truth, Dora's Mami knows it is incredibly positive that Dora has bonded with me and works with me so well. I've made myself a valuable tool in treating her Autism, and I'm extremely proud of this - for all of this, not to mention that I just like the kid, she has become a priority for me.

Then, when we were hanging out (I stuck around to haul the laundry up and down the stairs), we heard Dora's little voice from the bathroom: "Russ, can I have the pigs please?"

Mami, what can I say. I swear, I'm not doing this to you on purpose.

He and Johnny will be Putting On Quite a Show in Heaven

...I'm showing my age, but, I miss these guys.

Someone Please Explain To Me Why People Are Still Drinking and Driving

From the Autism Society of America's web site: Autism Community Mourns Passing of Dr. Ted Carr

The autism community lost a great leader this weekend, Dr. Edward Carr, who was killed by a drunk driver the afternoon of June 20. Dr. Carr, the Leading Professor in the Department of Psychology at the State University of New York at Stony Brook, was a top advisor to the Autism Society. We are deeply saddened by the loss of our friend and colleague and his wife, Ilene Wasserman, who was also killed in the crash, and we send our thoughts and prayers to their family.

Dr. Carr was recognized internationally for his research on new treatments for autism and related disabilities. He co-developed Functional Behavioral Assessment and Positive Behavior Support, a strategy for dealing with learning and behavior issues endorsed by the Individuals with Disabilities Education Act (IDEA).

For the full article, click here.

Dora's Mami met Dr. Carr a few times at some events for Autism. She tells me he was a kind, warm man; they spoke of travel in Greece. He also helped develop the Autism Program Quality Indicators, a tool we keep going back to in our efforts to negotiate and cajole Dora's school to provide her with the attention she really needs. It was coincidence that, as Dora's Mami mourned learning of this loss, she was called by Dora's aide, who wanted to tell her of Dora's great progress and independence she was showing at school this year. It's no exaggeration to say that, because of what Dr. Carr contributed to this field, he can take some sliver of credit for her progress.

What keeps coming back to me is, the drunk driver (of course) came out of this accident with far less serious injuries. He'll be charged, he'll be convicted, but his penalty will be dwarfed by the enormity what he took away from society.