Autism Saturday

Friday 10 February 2006

On the weekends, I spend a lot of time with my son Nat, who is autistic. In our division of labor, I do most of the outside activities with Nat, and Susan does most of the dealing with doctors, teachers, specialists, service providers and the like. Nat also participates in a number of Special Olympics sports (he's the only one of my three sons who likes sports, so as Susan quips, "At least one of my boys is normal!"), so there's a lot of time on weekends going to practices. Last Saturday was a bit unusual, though.

•    •    •

In the morning, Nat and I went to basketball practice. Nat has been going for a couple of months, and is beginning to get the hang of it. Not that he's very effective on the court, but he is at least familiar with the rhythms of the practice sessions. Lately, my criteria for success have been: 1) he's on the court, and 2) he's not hurting anyone. Even better is if he runs up and down to stay in the same half court as the ball.

The group Nat is in are the type who need help staying on the court. They'll stand stock still during the game, or wander away. When you give them the ball, you'll have to remind them to focus on where the basket is, and then how to shoot.

The practices are at Boston College, and usually there are a few student volunteers helping to coach the kids. These students mean well, but are not very effective, both because the head coach has not managed to deploy them very well, and because they are not experts in either basketball or special education.

This time, though, the student volunteers were six guys who were fabulous. They knew basketball inside out, and clearly loved the game, practicing perfectly executed swoops and dunks almost absentmindedly. I would have expected guys like this to be impatient with Nat and his teammates. But they were not at all what I expected. They had boundless energy for showing the kids moves, and running them through even the most basic drills.

So to see these basketball connoisseurs put so much energy into drilling these kids, and to do it with so much good spirit was really encouraging. And when the time came for a scrimmage, they stood on the sidelines coaching and cheering as if it were the NCAA finals.

Once the score got to 1-2, taunts of "they're running up the score, whatcha goin' do?" came out. When one of the kids finally sunk a basket, they shouted, "we got Shaq!". Their energy and enthusiasm made the entire experience a pleasure.

It was all the more uplifting because (I hate to admit it) I wouldn't have given them a second look as people who might be interested in helping special ed kids. But we worked together on the court, me with sped expertise, them with basketball expertise, and together we got my son's attention and showed him how to defend on the court. It was a really great coming together despite all our apparent differences.

And Nat did really well during the entire hour and a half, and earned a candy bar.

•    •    •

After lunch, I had to go to Home Depot. I brought Nat and Ben with me, because no one else was home to watch them, but I also like bringing my kids on errands. They didn't want to, but I told them we'd go to the video store afterwards. Also, Nat usually gets a soda at the Home Depot vending machine.

We got to the window shade counter, where I knew I would have to wait for a clerk to cut a window shade for me. I found the woman and let her know I need her help. She was helping another customer, and a little curtly let me know that I would have to wait. Nat was pacing up and down the aisle, talking to himself (we call it silly talk). I knew that he was fine, because silly talk is a good sign. When he isn't doing silly talk is when something might happen. Every time the clerk walked past us, she seemed to be eyeing Nat.

I've seen this plenty of times in the past, and I don't let it bother me. My ability to let strangers' reactions roll off my back is one of the reasons I am willing to take Nat with me on errands like this.

There were other people waiting for window shades, some of whom I think were there before me, but I wasn't sure. It looked like I'd be there a while, but Nat and Ben and I were all pretty relaxed about it, so I wasn't worried.

When the clerk finished with her customer she came over to me, and nodded toward Nat.

"He seems a little anxious," she said.

"No, he's fine, that's just what he does," I said.

"I worked in the DMR [Department of Mental Retardation, the state agency that provides services for many mental disabilities, including autism] for 30 years. Looks like you've got a little autism there."

I smiled. "Yes, we do."

She then asked if we had already gotten enrolled in the system. She explained that she had seen a lot of old couples who had cared for their disabled child until he was middle-aged and they couldn't do it anymore, but then couldn't get services because they were unknown to the agency. I assured her that we had been taking all the appropriate steps. She told me about the work she had done, and why she had gotten out.

She had been working in a residential home, dealing with a bipolar autistic woman, who as she put it, "tried to kill her all the time." She explained that after spending 30 years of her life looking after tough people like that, she needed a break.

I understood completely.

She cut my window shade, then gave both boys some left over pieces that had been trimmed from a honeycomb shade, like fabric Slinkies. The whole encounter had been a pleasant surprise in the usually sterile environment of the Home Depot. A woman who had originally seemed like a slightly hostile indifferent clerk turned out to be a caring and knowledgeable ally, even down to the detail of understanding that my kids were probably bored and could use a diversion.

•    •    •

On to the video store. The video store has a small parking lot, and Saturday afternoons are a busy time. I hesitated in looking for a parking space, trying to gauge if my car would fit into the gap between two carelessly parked behemoths.

Hesitating in the car drives Nat nuts. He flipped out and started pinching me and biting himself. I sternly told him to keep his hands to himself ("quiet hands"), and to calm down. I tried to talk him through it and reassure him that we'd be parking and going in the store. But he couldn't manage to do it, and kept trying to pinch me as I was parking. I told him that he'd have to stay in the car if he couldn't calm down, which didn't help him calm down.

I got out of the car, and told him to stay in the car, closing the door. He was agitated for a moment, but then seemed to calm down, so I let him come with us into the store, and he seemed fine.

Once in the store, we split up as we usually do, each to examine our own parts of the selection. Then I heard DVDs falling to the floor. I looked up to see Nat pulling DVDs off a shelf, glaring over at me to see my reaction. Clearly I had overestimated his calm. I walked quickly over to where Nat was. "Nat! Stop it! Sit down!" I sat him in the aisle of the store while I gathered my thoughts. I have no idea what the customers and staff thought. Remarkably, no one reacted enough for me to notice them. They must have seen and heard what Nat had done, but they were going about their movie-picking.

I told Nat to help me pick up the DVDs and put them back on the shelf. He helped me, but was clearly still agitated. I told him he wasn't getting a video. Ben came over to show me his choice. He clearly understood the situation, and was keeping an eye on Nat as we made our way to the front of the store. In situations like this, Ben is often a target for Nat's aggression, and Ben knew only too well how tenuous the situation was. I wanted to leave the store immediately, but I knew that Ben would be angry if he had to leave without his video, and Ben gets angry at Nat all too easily. I didn't want to be in that dynamic again, and I didn't want Ben to be punished for Nat's transgressions. I was determined to pay for Ben's video.

So we got in line. Nat was wild-eyed and looking for something to hurt. His hand reached out for the racks of candy and used videos that crowd the line. He grabbed some merchandise, and I took his hand and told him no. He did it again, and I angrily whispered, "Nat, sit down. Stop it!" and sat him in the aisle again, where he looked to see if he could reach anything. After 30 seconds, I told him to get up. The man ahead of me in line sheepishly turned around and said, "You can go ahead of me if you want." I gladly accepted the offer.

By now I had decided that the only way to prevent further aggression was to hold Nat's outside hand until we were out of the store. It was awkward, and meant fumbling with my wallet and paying with one hand, but it was better than letting Nat get out of control and having to shout some more.

Finally, we were outside. Ben had his video, and Nat hadn't actually destroyed anything. I was exhausted, but had managed to hold on to some principles. Once home, Nat seemed happy and peaceful. Maybe he hadn't really wanted to go to the video store in the first place. Who knows?

•    •    •

Last Saturday was not an ordinary day, in either the highs or the lows, but was not completely atypical. Autism has intensified my parenting experience in all directions. Helping Nat as he navigates this confusing world exposes me to all sorts of interactions that my typical kids don't have. With them, things go pretty much by the book. With Nat, who knows what'll happen next?

It's amazing and enheartening to see strangers help in whatever ways they can. The basketball guys and the window shade clerk were like unexpected angels. Even the customers in the video store pretending that nothing was wrong were doing what they could.

And this weekend, who knows what will happen? We'll have haircuts and snow today, and a basketball tournament tomorrow. Maybe we'll even go to the CVS...

Comments

[gravatar]
Bill Mill 8:39 AM on 11 Feb 2006

Excellent writing, I really feel for your situation, even if it's something I have no experience with.

Good luck maintaining those principles.

[gravatar]
xath 9:56 AM on 11 Feb 2006

Restores your faith in humankind to have strangers go out of their way to be kind. Thanks for the wonderful recounting of a day in your family's life.

[gravatar]
Andrew W 1:03 PM on 12 Feb 2006

Thanks for sharing your weekend. It's so inspiring on multiple levels!

[gravatar]
David 6:45 PM on 12 Feb 2006

I have an 18 year old with Down Syndrome, and can relate to your highs and lows.

We were at a basketball match and Sean played in a half time shoot out. He got one basket but of course didn't win. Later the winner, a boy of about 10, came up to us and said he wanted to give Sean the ball he had won, because Sean got one in. Such unexpected kindnesses are real highs.

On the other hand I get really upset sometimes when we get treated badly, but those times serve to highlight the good ones.

[gravatar]
Eleanor 11:14 PM on 13 Feb 2006

Very nice. Can you say "scrimmage" about basketball?

[gravatar]
John 3:34 AM on 14 Feb 2006

A great story... Honestly my biggest fear is that one of my boys will turn out to be Austistic. Of course my 4 yeard old is old enough to know that he's not but the 18month still makes me worry (not for any particular reason, I just worry about it.. I'll be very glad when he starts talking!)

Anyway it's stories like this with parents who are doing it day in and day out that give me strength that I could deal with it if it ever came to it.

I came for the coding goodness but I'm glad that you posted this article.

[gravatar]
Ned Batchelder 6:51 AM on 14 Feb 2006

Eleanor: the coach uses the word "scrimmage" to describe the mini-games the teams play against each other. Though when he first used the word, I thought, "They say 'scrimmage' in basketball?"

[gravatar]
Ned Batchelder 7:06 AM on 14 Feb 2006

John: My wife and I have a mantra: "It's amazing what you can get used to." Of course, she's written a whole book on the topic.

[gravatar]
Dave 11:18 PM on 23 Feb 2006

Ned: I'm also in my 40s and have been in software development since I entered a lunar-lander program into a HP programmable calculator about 30 years ago. Our nine-year-old son, Noah, has autism; he and I also like to get out of the house on weekends. The similarities make me wonder about the "geek connection" and autism.

I found your site from you wife's book. Tell her I give it two up. Noah's learning curve and abilities similar to the description of Nat's, but, like every child with autism, Noah has a unique combination of skills and deficits. Where the book really shines is in its description of your family and the way you and your wife have pulled together in a situation that can easily pull a family apart. I read somewhere that the divorce rate is 80% among families with a child who has a severe learning disability. Exhaustion is the forerunner of despair. Prosecuting our war on autism has nearly bankrupt our marriage--not to mention our finances. We have three other kids. Noah has an older brother (15) and sister (12) and a younger sister (6). I believe they are doing OK, but it may be another 20+ years before the full impact of all this can be seen. After almost seven years of intensive ABA, I'm tired of the war and ready to make peace with autism. However, I fear my wife is like Ahab in pursuit of Moby Dick. Still, it was good to read your wife's book and catch a glimpse of a land where there could be a kind of negotiated peace with autism.

Thanks.

Thanks,
Dave

[gravatar]
Dave 8:17 AM on 24 Feb 2006

Also, check out CNN's video clips menu for "J-Mac's Hoop Dreams". Video of a highschool boy with autism who was a team manager for the basketball team. His coach had him suit up for that last game and put him in for the last 4 minutes. He scored 20 points. What a thrill for him and his parents.

[gravatar]
Kartik Agaram 1:36 AM on 25 Feb 2006

Wow, I just saw that video and remembered this post.

Dave is talking about this:
http://reddit.com/info?id=27v9

[gravatar]
Don 8:40 AM on 28 Feb 2006

Today I was sent a link about the incredible story of an autistic boy's chance at playing in a basketball game, and I thought of you and Nat. But I see that Dave and Kartik already beat me to it.

Here's a link to the CBS coverage: http://tinyurl.com/mhrsz

[gravatar]
Jo 10:42 PM on 6 Mar 2006

I have had many Saturdays just like yours.
It is very nice to come across understanding people, although it does not happen as often as I would like.
Autism Awareness...
The word is spreading daily and respect for our children's autism gets closer each day.

I love coming across writings such as yours.
It makes me feel a little less alone.
Thanks!:-)

[gravatar]
Mrs. C 3:28 PM on 27 Oct 2006

I got this site list from your wife's book. I have three children , two of which have ASD.My oldest is 11 and was dx with aspergers and the 8 year old has a dx of PDDNOS. One more so than the other. I relate to alot of your writings as well as your wife's on Nat.
We are blessed in many special ways for every short coming and every excess.
I enjoy reading your blog, because it helps me to not feel so seperated.

Add a comment:

name
email
Ignore this:
not displayed and no spam.
Leave this empty:
www
not searched.
 
Name and either email or www are required.
Don't put anything here:
Leave this empty:
URLs auto-link and some tags are allowed: <a><b><i><p><br><pre>.