social life
Happy Halloween
My good friends at Texas Parent-to-Parent sent out their fall newsletter with some tips to help kids with disabilities, and particularly those with autism, Aspergers and sensory dysfunction to make the most of Halloween.
I asked Sam tonight if he remembers when it got easier for him to wear Halloween costumes. He stopped eating his Blue Bell Christmas Cookie ice cream long enough to say “high school.”
So, long past the trick-or-treating days.
Here’s a tip sheet for costumes and activities.
And here’s a tip sheet for the rest of us to help make Halloween special for all the kids.
Remember what Lucy Van Pelt said: Never jump into a pile of leaves with a wet sucker.
Southern Impolite Meets a Yankee Can of Whoop-Ass
(Note to readers: This is not one of my best moments. I’m exploring events from our lives for the next book, in hopes that there are lessons and wisdom in these experiences. Or, at minimum, a good chuckle. Let’s see what happens with this one.)
At the end of Sam’s second-grade year, the kids and I went with Mark to Shreveport for a year-end concert with the Shreveport Symphony Orchestra.
It was a great opportunity for the kids to see their dad perform as the tubist in the orchestra. Most concert settings are so formal, even I had hard time behaving.
The Shreveport Symphony had always held their year-end concert in the convention center. They put out round tables and lots of kitschy decorations around the room. Some people decorated their tables, too, and of course the food and wine flowed as the symphony played a pops program.
The acoustics were horrible — there was a level of background noise in the room that I’m sure made it a real challenge for the guys on the mixing board. But a great time was always had by all.
The kids and I sat in the back with some other symphony friends at our table and at tables around us. Given how young the kids were — Sam was 8, Michael was 5 and Paige not quite 3 — I was thrilled how well they behaved. Especially Sam. He didn’t get up and run around the tables. He wiggled and fidgeted some in his seat. Sometimes he would slip down and stand up next to his chair, but at his size, he wasn’t tall enough to block the view for any one around us.
This was a huge accomplishment for him. We had worked hard during second grade to help Sam learn to stay in his seat and pay attention. He had such trouble with it at the beginning of the year that his teacher had begun to send him out to the hallway with his aide when he couldn’t sit still. While I could see her point that he was a distraction for the other kids in the class, the aide noticed that sending him out in the hallway was reinforcing the problem. She got worried. I called Kevin Callahan, a special education professor at the University of North Texas at the time. He came to observe and designed a little intervention that helped Sam teach himself to stay in his seat and pay attention. It was brilliant and it worked.
But Sam’s behavior wasn’t perfect, and even though his little brother and sister wiggled and fidgeted, too, Sam’s wiggles got the attention of one woman a table or two away. She would watch Sam. She would whisper to the people at her table. It was hard not for me to notice I was being judged, too.
I did my best to ignore the Chinese water torture of her judgment. We were making some good memories and I didn’t want to give her the power to spoil it.
After the concert ended, people began packing up their tables. Sam, Michael and Paige rushed to the stage to hug their dad and meet the other musicians. I stayed behind to pack up our things. I looked up to see the woman was approaching me.
She began to tell me what she thought was wrong with Sam.
I listened patiently for her to get to her stopping point. I told her that actually I was quite proud of my son because he has autism and his dad was performing and this was about the best he had sat still and paid attention this whole year.
Then she smiled this treacly smile and said, “Well, I am a teacher of the emotionally disturbed and in my experience …”
I lost it.
I leaned forward and yelled, “Get out of my face.”
She looked stunned. But she didn’t move.
“Get out of my face!” I yelled again.
She took a step back.
“I said, get out of my face!”
Rule of three, she finally went back to her friends.
I was ashamed of myself for losing my cool. And a little grateful that the room was full of ambient noise, enough that only the woman and her friends knew what had happened between us. Maybe another table, but that was about it. The kids and Mark never heard it.
I walked very deliberately towards the stage. I could feel the woman and her friends watching me. I told Mark what had happened and turned and pointed to the woman. He studied her. She and her friends finished packing up and left.
“Do I need to go over there and do something?” he asked.
“Nah,” I said. “I don’t think she’ll bother another autism parent again in her life.”
See Sam Fly
Sam hopped on a plane and flew to Salt Lake City to stay with my sister and her family.
Within minutes after his arrival, he sent me a text about how beautiful the weather was.
(Yeah, just rub that one in there, buddy.)
This is Sam’s second trip to Utah and about his sixth or seventh time to fly on his own. I don’t need to accompany him to the gate anymore, nor does anyone need to meet him there like we did when he first flew on his own.
I did not do a single thing to help him pack, not a prompt about the web check-in or anything. When we got to the airport, I asked him, “do you want to hop out at the curb or do you need me to come in?”
He asked me to come in and stay until he was got in the security line.
But he thought about it for a minute. He really did.
JoC’s Strawberry Punch, freely interpreted
For Sam’s graduation party, I put out a devil’s food cake (from Rosso and Lukins’ New Basics Cookbook), chili-lime peanuts (from epicurious), butter mints (from Albertsons) and a double-batch of strawberry punch, based on the recipe from Joy of Cooking.
A few people asked for the recipe. The original is good just the way it is and I’ve made it that way many times, but Sam doesn’t like carbonated beverages, so I had to fake it a little bit.
The Original
Boil for 5 minutes:
4 cups water
4 cups sugar
Cool the syrup. Combine:
2 quarts hulled strawberries
1 cup slice canned or fresh pineapple
1 cup mixed fruit juice — pineapple, apricot, raspberry, etc.
Juice of 5 large oranges
Juice of 5 large lemons
(3 sliced bananas)
Add the syrup, or as much of it as is palatable. Chill these ingredients. Immediately before serving, add:
2 quarts carbonated water
3 cups or more of crushed ice.
The basic mix is concentrated, to offset the dilution that happens with the icing. Water can be added, as desired.
JoC Strawberry Punch, Sam Style
Boil for 5 minutes
4 cups water
4 cups sugar
As the syrup is cooling, hull and slice the strawberries into the syrup (helps the infusion)
When ready to mix, I added one bottle of TexSun Orange-Pineapple Juice (a favorite from his childhood) and 1 1/2 cups of lemon juice, and a small can of pineapple slices, drained.
Chill.
To serve, I added three trays of ice cubes.
Emotional IQ
Sam and I had the most amazing exchange this morning, one that belongs in some kind of magazine about how mature people should deal with powerful emotions.
First, you’ve got to set a stage for two people completely, utterly and totally misunderstanding each other. We’d both just gotten up — and neither of us are morning people. Plus, I had had only a sip or two of the morning joe, so that’s two strikes against me.
Sam was opening a vitamin jar to get a tablet out and suddenly it just flew from his hand and rolled on the floor. I didn’t see any of this. I just heard him yell “OH!” so loud adrenaline rushed to my nerve endings, so full and fast that it hurt my fingertips.
I thought my reaction was amazingly calm, considering. I turned around, puzzled that nothing seemed to be wrong, and said, “Don’t yell so loud in the house.”
That upset Sam terribly. He left the room.
A few minutes later, he told me that my comment made him feel like a little kid again and brought back bad childhood memories. That brought tears to my eyes. I tried to apologize for the comment, but Sam said we shouldn’t talk about it anymore, since it was about to make me cry.
I told him no, please, I welcomed the chance to say I’m sorry not only for hurting his feelings today, but also for any bad childhood memories and we could talk a little more if he wanted.
Sam said he remembered misbehaving, and it was in the past and it could stay in the past. I told him I thought that was very mature.
Then I said, you know, I didn’t know why you yelled so loud. I thought I needed to call 911 or something. He explained what happened, I told him I understood now why he yelled, and then he said he understood why I felt like I needed to say something about the yelling.
What Sam brought to the conversation that was so amazing was believing me when I said I loved him and never wanted to hurt him. That was part of my apology. I told him that it’s important to me to stick up for myself, and I’ve noticed that when someone sticks up for themselves, it can be hard to do without hurting the other person sometimes.
The whole conversation took all of 10 minutes and brought me such a sense of wonderment. I’m still trying to figure out where this supposed lack of social understanding comes from in people with autism. Sam is so clear-eyed and clear-headed. His father and I could not have had such a conversation early in our marriage. Even later in our marriage, it would take two hours to wade through all the emotional thicket to get to the same place.
I think it’s the opposite. I think the rest of us lack emotional intelligence. We play stupid mental games with each other, and we don’t trust each other.
When Sam doesn’t trust someone, he just doesn’t deal with them at all. How smart is that?
Any girl would be lucky to have him.
The “Empathy Deficit” fallacy
At the risk of falling to the theory of self-reference, I’ve always been skeptical that people with autism lack empathy. I’ve just never seen that deficit in Sam, nor in any other people with autism or Asperger’s that I’ve met.
I got to thinking about that after reading this piece in the Boston Globe, which goes to some length to describe how our kids apparently are lacking it.
Empathy, by definition, means some kind of emotional response to the pain or suffering of another. Babies and children don’t always demonstrate their empathy the way adults do — that’s part of our socialization — but they feel it just the same.
My guess is that some of us not on the spectrum look for empathy to be demonstrated in a tangible way. Then when we don’t see it, we say “a-ha, that person with autism lacks empathy.”
The Boston Globe article even spelled that out with a list of tasks an empathetic person is more likely to do. Most of them, I could imagine Sam doing, but not always for purely empathetic reasons.
For example, “return incorrect change to a cashier” could also be following the rules and keeping things correct.
The next two, “let someone else ahead of them in line” and “carry a stranger’s belongings” requires a person to break a social rule about getting into another person’s personal space. Sam does this all the time at Albertsons because he is a courtesy clerk and it’s expected of him. I’ve seen it generalize.
“Give money to a homeless person,” “volunteer,” “donate to a charity,” check, check and check. In fact, we talk about picking our charitable causes with purpose.
“Look after a friend’s pet or plant,” been there, done that.
“Live on a vegetarian die.” Sorry, we’re in Texas and he’s meat-eater. But butchering day comes with much reverence. We all know where our food comes from.
Sometimes I think we overreact to perceived deficits.
Sam doesn’t hug me. I don’t ask for it. Here’s why. The few times we do hug, there is so much human connection, I can almost feel the nuclear fission begin. Better not to disturb the universe like that.
Billy Bob’s
Last year, Michael discovered that he could get into Billy Bob’s, Fort Worth’s famous honky tonk, on Thursday nights for free.
He and Sam went together this Thursday, sort of an end-of-summer celebration. Both start classes this week. They were lucky this time, Michael reports, because the cover band kept playing. At one point, they played a family favorite, Stevie Ray Vaughan’s Texas Flood.
Sam reports that he had fun and would like to go again soon. “People always have fun at Billy Bob’s,” he said. It took a while to figure out what was going on, he said. He danced with one girl.
Michael danced with the same girl.
Considering neoteny
Do you want to be my friend?
Those who’ve read See Sam Run may remember the passage that alludes to Eric Carle’s book, “Do You Want to Be My Friend?” Classic children’s books were a big part of fostering Sam’s language development as a preschooler. That little mouse was persistent, and Sam liked the repetitive language.
Companionship
A child enters your home and makes so much noise you can hardly stand it–then departs, leaving the house so quiet you think you’ll go mad. – Dr. J.A. Holmes
Call it “empty nest,” or as one girlfriend wrote recently, “going out of the parenting business,” most parents look to the day their child moves out with a mix of excitement and dread.
Make no mistake about it, Mark and I all but counted the days we thought/hoped/prayed we’d have our three children launched and we’d have the house back to ourselves.
Mark was killed in a traffic accident two-and-half years ago — so much for that plan.
For a long time after his death, I kept my focus on prepping that launch pad for Sam. Mark and I had learned that it’s often traumatic for adults with disabilities to get to age 40 or 50, having lived with their parents all that time, only to confront their deaths. Not only must those adults with disabilities cope with the loss, they also must learn new life skills in middle age. It’s tough stuff, or so we’d always been told.
About six months ago, though, I began to reflect on exactly what we were still shooting for. Sam moves into an apartment by himself, and I live in this house by myself, and we’re both alone for the next 20 years.
All so that he wouldn’t be hit with a double-whammy when it’s my time to go.
I asked the smartest person I knew whether I was being selfish in re-thinking this, or was my question a fair one — what do Sam and I really get by trading out 20 years of companionship?
Not much, she agreed, as long as I’m mindful that he still needs those skills.
It’s a funny place to be. Sam is taking college classes and working part-time. He manages his own finances. He drives. He helps out a lot around the house and farm. I do wish he cooked more, but we’ll get there. Although far less than what his brother has as a freshman at TCU, Sam has his own social life. (I will blog about this topic soon.)
I’ve been trying to ease us towards a “roommate” way of getting along, at my wise friend’s encouragement. We have a good life where we are right now.
As far as Sam’s launch pad, it’s still there if, for example, he got his dream job (computers at the National Weather Service) and got serious about that apartment he thinks about from time to time (mostly that he’ll have cable TV and high-speed internet, unlike now).
I haven’t lost track of the support he’d need to get out the door, if that’s his heart’s desire. It’s not much different, really, than what his brother and sister would need, just a little more of it.