Changes and Challenges

We arrived at Kai’s boxing class on Saturday afternoon and found some changes. They had set up for a birthday party for the son of the founder of the organization that puts on these classes.

Outdoors, next to the gym, were two large inflatables where kids could bounce and slide. Tables were set up for pizza and soft drinks. It looked like it would be a fun time.

Kai was not happy.

I had received an email the evening before letting us know that there would be a birthday party after the boxing class. I didn’t realize that it would, in reality, supplant the boxing class. I hadn’t told Kai about this change in routine and he was not happy.

He wanted to box.

For a little while, the instructor grabbed a pair of boxing gloves and had some kids work on their punches. But it was apparent that most kids just wanted to get on with the party.

I was chatting with another parent but made my way over to Kai when I saw that he maintained his angry face.

I told him he could have some pizza. He refused, saying that he wanted to destroy the party.

I tried to stay positive, talking about how the inflatables looked fun. Eventually, the lure of the pizza was too much and he said he would have a piece. One volunteer girl came over and gently teased Kai, “I thought you were going to poison all the pizza.” He said he did but then he un-poisoned it. He asked me to get him a second piece.

And then went on the inflatables. He spent most of his time on the one where you climbed up from one side, slide down the other, and then walk around to do it all over again. He was laughing and laughing, pausing occasionally only to ask the time. His soccer game was later in the afternoon and he did not want to miss it.

His boxing instructor came over when he saw Kai laughing. He asked Kai if he was having a good time, and when Kai said he was, the instructor laughed and said “I knew it!” as Kai is often prone to starting off grumpy before ending up enjoying himself there.

The birthday cake came out just when it was time to leave for the soccer game. I offered to let Kai stay and have cake, but told him that we would be late for soccer if we did. The cake looked scrumptious, but he opted to leave.

When we arrived at his special needs soccer game, we found the coach was not there. Usually this coach divides up the players with the special needs kids on one team, and some of the volunteer kids serving as the opposition team ala the Washington Generals (of Harlem Globetrotters fame). Kai likes this setup because his team scores almost all of the goals and wins every game.

This week, though, with the coach not there, another parent took charge. She divided the teams differently, with the special needs kids separated onto two teams, assisted by the volunteer kids. The special needs kids would thus play against each other.

This had been the setup in years past, but not since the current coach took over last fall. Having the special needs kids split up worked out okay before when the kids’ abilities spanned a broad spectrum. But since last fall, Kai’s abilities have stood out, as other kids of his ability dropped out, leaving only the kids requiring assistance from the volunteer kids.

How that played out this week was that Kai got upset as the other team scored goals. He particularly got angry when the parent serving as his team’s goalie made no effort to block shots from the opposing team. He came over to the sideline, dumped out his water bottle and refused to play any longer. He said he wished he stayed for the birthday cake and said he never wanted to play soccer again.

I went over to talk to him. And while I understood how he felt, I didn’t like how he handled his frustration. But then again, perhaps I didn’t handle my own frustration too well, either.

When encouraging him to go back in and play did not work, I got stern with him. I told him that he wouldn’t be able to use the iPad if he did not go back out on the field and make an effort. He finally went, but mainly to yell at the parent who was the goalie. When I yelled at him that we would go, he said that he would play nicely.

He ran after the ball, and took it away from an opposing special needs child who needs a lot of help to kick the ball. Kai dribbled all the way down the field and scored, then looked for my approval as he had played hard as I had demanded.

I was frustrated, with him, the situation, but mostly myself.

This group is really great for the other kids, but I don’t think it is right for Kai any longer. I can’t ask him to go out there and try hard, but then have the result be that he dominates the game and doesn’t give the other kids a chance to kick the ball and score. What do I tell him, play hard only if the ball happens to come your way?

Finding a special needs activity that is right for your child can be difficult. Just because an activity has a ‘special needs’ label doesn’t make it right for every child with that label.

And so I think we will stop going to this activity. I hate to end on such a sour note. But I think that will be best, both for Kai as well as the other kids.

Noting Progress on a Fall Day

Saturday morning I drove Kai to his first ice skating class of the season. When we got out of the car, I noticed that one of the tires was a bit low.

Kai did very well in his class. His skating really improved last year and he picked right up where he left off. But more than that, I was glad to see that he was very happy to be back on the ice and skated with enthusiasm.

When class was over, it was time for our weekly trip to the library. But on the way, I wanted to stop at a gas station and fill the one tire with air.

The first two stations I went to did not have a working air pump. And when I finally found one that did, the tire was very low. I filled it with as much air as I could, and then decided to see if I could make it to a tire shop without having to change the tire.

Kai was not happy with the sudden change in plans. He really wanted to go to the library.

But his reaction was so much milder than we have seen in the past under similar circumstances.

I tried to call my wife to meet us at the shop and to pick us up. I did not want to wait there for long, fearing Kai would explode with impatience.

Unfortunately, my cell phone wasn’t working right, and I could not make that call until we had already arrived at the tire shop. We would have to wait there for a while.

Kai enjoyed looking at all the tires on display, particularly taking in the numbers that rated performance for each on things like traction and comfort, as well as the expected mileage. He was in remarkably good spirits.

By the time my wife got there, we knew that our tire had a nail in it and would need to be replaced. And, in fact, all four tires were worn and ought to be replaced anyway.

My wife’s car was also due for the tires to be changed. With Kai being so well behaved, we decided to have them take a look at her car as well, and ended up deciding to go ahead and replace them on the spot.

The shop worked quickly. But we still waited nearly an hour all together. And Kai never made a fuss.

Once one car was ready to go, we drove up to Wisconsin. The library would have to wait until the next day as Kai was looking forward to trying a new miniature golf course that he and my wife had seen on his last doctor’s visit.

But first, it was time for lunch at the Brat Stop, where the specialty is brats, of course. Kai enjoyed his, and then waited nicely while my wife and I finished eating. This is still a work in process, but we definitely don’t feel quite as rushed over meals as we used to.

And then it was on to the mini golf course.

It was a chilly day, and we were very glad we had gone camping last weekend instead of this.

The course was a wild west theme.

There was a canyon.

And a mining cart.

We were having a nice time.

Until about the seventh hole.

With the chilly weather, it was not crowded. But at the sixth or seventh hole, there was a stackup of people and we had to wait. It turns out that there were a group of six adults that were three groups ahead of us.

Kai found a sign that said that groups should have no more than four players. He grumbled a bit that the group was not playing by the rules.

But overall, he maintained his patience quite well. Much better than me, actually.

It was bad enough that the group had too many players, but they really took their time while playing. Seeing so many groups waiting behind them, they could have tried to play faster, or let the others go ahead of them so they could maintain their leisurely pace. But they did not, so we all had to wait at every hole.

One of the other groups ahead of us left, not being able to wait any longer. Another group skipped a couple holes to jump ahead. I knew Kai would want to play every hole in order so we waited it out.

My impatience with the six adults was surpassed by my pleasure at seeing Kai behave so well.

When we finished our round, we had to hustle to get back home as Kai had a soccer game later in the afternoon.

When Kai started playing soccer two years ago, he rarely went after the ball. I had to constantly encourage him to run and try to kick the ball, and often he just got frustrated and wanted to quit instead.

But now, he played with verve. He ran up and down the field. He went after the ball and tried to score. And he was constantly chatting and laughing.

And even when another boy got frustrated and pushed Kai, he maintained his positive disposition.

Other parents noticed.

Several commented to me how well Kai was doing.

I don’t think they were just being polite or encouraging. I, too, saw how much he had changed from before.

During this one day, we had witnessed so many things where Kai showed so much improvement.

Gotta love it.

“My Dad Always Tells Me Never to Quit”

Over the past several weeks, my son has wanted to quit soccer, karate, and his piano lessons, among other things. Going back further, you could throw swim lessons in there, too.

When he wants to quit, it is not like Kai comes to us and calmly tells us that he is getting tired of the activity or that he’d rather do something else. No, instead he makes a public spectacle, throwing himself on the ground and screaming at us in front of other parents. He will shout that he hates soccer (or whatever) and that he is never doing it again.

On the occasions that I am with him when he does this, I tell him that he can take a break to calm down, but that he is not going to quit. I try to empathize with him about whatever struggles he is having on that particular day, and explain that if he quits, he will never overcome his difficulties. I remind him of other activities that he wanted to quit, such as swimming, that he really hated at first, but grew to not only become competent at, but also truly enjoy. I repeat that he will not quit, and tell him that if he becomes a quitter, he will never get anywhere in life.

Usually my words seem to have no impact on him as the spectacle continues for quite awhile. He almost never continues the activity nicely on that day. I’ve often wondered if my words had any effect on him at all.

It is not easy to deal with Kai when he is like this, and, at times, it gets to be too much for my wife. She has become frustrated and at various times said that we should stop the piano lessons, karate, and swim lessons. Each time I’ve implored her to continue, at least for a while. If we are to stop an activity, I want it to be on our terms, not because Kai raised a huge ruckus and said he was quitting.

This past Friday, Kai played piano nicely for his teacher. Then, Saturday morning, with my father-in-law in the stands watching for the first time, he did his best ice-skating ever as his skating class has started up again. He followed that up with a really good effort at his karate class. Then, in the afternoon, he had his best soccer game. Kai scored four or five goals, but what I was happy about was that he played with enthusiasm and ran up and down the field throughout the whole game.

Driving home from the game, with my father-in-law sitting next to me in the front seat, I heard him talking with Mom in the back seat. My wife mentioned how another boy did not participate much this week because he had gotten upset about something, much like Kai had a few weeks ago.

Kai then said, “My dad always tells me never to quit.”

I could hardly believe my ears. I actually had to confirm it with my wife later to make sure that I heard that correctly. But, yes, that is what he said.

What a revelation. Though I did not know it, I guess he sometimes listens to me after all.

A New Day

Last weekend, my son threw a fit and did not play in his soccer game. Then, during the week, he had an awful session at his karate class where he refused to do many of the activities. (I’ll have more about all that in this week’s Patch column that should be posted tomorrow).

So, this weekend, we had trepidations about those two activities.

On Saturday morning, I spoke to Kai at breakfast and set my expectations for him. I said that I knew he could do a good job at karate because he had done so before. I told him that I wanted him to listen to Sensei and set a good example for the class. I also said that I wanted him to play soccer without complaining. I was positive, but also added that if he did not do the activities nicely, he would lose his computer and video privileges.

As the karate class started, I was tense as I sat in the stands. I didn’t relax even when Kai got off to a good start. He was doing all of the warm-up exercises nicely, but it was early. With Kai, I’ve learned that you never know when he might get upset about something and start acting out.

As the group went on to doing karate, Kai looked very serious. Frankly, I was surprised how well he was doing. His form is often not crisp, but on this day he seemed very focused and his movements were unusually sharp.

Toward the end of class, each student had to perform kata (karate movements) individually in front of the entire class. Kai performed well, and, at the end of the class, earned high praise from Sensei. “Kai, that’s the best karate you’ve ever done.”

One activity down, one more to go.

In the afternoon, we went to his soccer game. Kai played. He ran. He kicked. He did not complain. It was a complete change from the week before.

Later, we heard from the mom of another child at the game. She said that she congratulated Kai for his play and he responded to her, “I always knew I could do it.”

I am not sure why he did so well this week or why he had so much trouble last week. I can only hope that the positive behavior will carry over to school, another area that has been a challenge of late.

It’s a new day. It’s a new week. Hopefully, it is a new beginning.

Weekend Ups and Downs

My son had his first soccer game of the season this weekend. Well, there was a game all right, but Kai hardly played.

It was a beautiful sunny day, seemingly perfect for soccer. Kai’s grandmother was in town and happy to get a chance to see Kai play. We got to the field and were pleasantly surprised to find that Kai’s best friend from school had decided to play after originally saying he did not want to. They had fun chasing each other around before the game. So, all looked fine.

Then the game started.

Kai’s friend had to go to the bathroom, and apparently took all of Kai’s energy with him when he left. As the other kids were running up and down the field, Kai was mostly just standing around.

A short while later, he came to the sidelines complaining that he was hot. He is really sensitive to heat. But it wasn’t like it was a 90-degree day. And he was hardly running enough to work up a sweat anyway.

I gave him water and let him take a break. And then I told him that I wanted him to go back out and play.

But then he complained that his new soccer jersey was uncomfortable. Was it itchy? I couldn’t make out the reason for his complaints. Still, everyone has to wear the jersey so I tried to get him to persevere. Yeah, that didn’t work.

As Kai’s team was running low on players, the coach said it was okay if Kai didn’t wear his soccer jersey so I had him change into a regular t-shirt. By then, though, he was yelling that he hated soccer and wanted to go home.

I was mad – no other kids were causing any problems; why was Kai being so difficult? I was embarrassed – my son was the only one making a scene in front of all the parents and I was proving to be an ineffective parent. I was frustrated – why couldn’t I be more patient and understanding with him? Or, maybe I was too patient with him? Whatever! Why can’t I get him to go back out and play?

I ended up threatening to take away his Pokemon cards. I told him that he wouldn’t be able to use the computer for the rest of the weekend. His grandmother and I told him that we weren’t going to leave until the game ended regardless of whether he played or not.

He didn’t.

When we got home I took away him Pokemon cards. He lost his computer privileges for the weekend.

But, later that day, we visited relatives and he played nicely with his cousins. And that was more meaningful than a soccer game.

Frustrations and triumphs. The weekend was a microcosm of our life.

Weekend Is Nothing Special, Just Especially Good

We didn’t do anything too special this weekend, but it was pretty special nonetheless. Here are five things that made it so.

1. Our son had his second soccer game on Saturday. After our tough time last weekend, we made sure to set expectations that he would try hard, play the entire game nicely, and not whine or complain. Kai seemed very receptive to our talks, but we still held our breaths a bit when we arrived at the soccer field. He enthusiastically ran onto the field for the warm-ups. A good start, but would it last more than a few minutes? To our delight, he enjoyed playing the entire game. We were happy, and proud of him.
2. With Kai playing nicely, we did not have to give him as much attention as we did last week or rush out afterward. It allowed us to chat with a few more parents and, not surprisingly, found that they are a good group. It was great to make some new friends.
3. My wife took Kai to an event at a public library where he and other kids with autism could interact with specially-trained therapy dogs. My wife loves dogs, and would like it if we had one. But, Kai has at times been afraid of dogs. On Saturday, he really enjoyed spending time with Cooper, and asked to walk with him ten times. Now, if only we could find a dog as gentle as Cooper to bring home with us.
4. When you have large oak trees like we do, this is the time of year that you hear them falling on your roof at all hours of the night. Our yard is pretty much covered with them. Kai loves picking them up and collected a large bucketful of acorns. He wanted to make an acorn necklace so I got an ice pick, tried to poke a hole in one acorn, and ended up stabbing my thumb instead. On to Plan B. I googled “acorn craft ideas” and came up with a kids’ project to paint acorns and make them look like mini jack-o-lanterns. He ended up painting ghosts, witches, and cats in addition to the pumpkins. It was a bit messy, but less bloody than working with ice picks. My wife put them into a glass candle holder and now they make a nice holiday decoration on our kitchen table.
5. After her recent triumph with the Lemon Ginger Chicken, my wife is on a tear finding and trying new recipes. This weekend, she had success with new recipes every day. On Friday night, she made cinnamon-apricot-flavored pork tenderloin from a recipe that Kai’s grandmother Dell sent us. It was moist and oh so delicious! On Saturday night, using extra apricot jam that she had gotten for the pork recipe, my wife made apricot, soy sauce, and brown sugar seasoned chicken wings. Another success! Sunday lunch was pizza muffins, which are like mini deep-dish pizzas, made using muffin pans with rice cheese in place of regular cheese. As a bonus, she also made mini peach pies with the same gluten-free homemade crust. The mini pizzas will now be part of Kai’s rotation for lunches at school. And, Sunday dinner capped off the weekend with a one-pot meal of chicken, Italian sausage, potatoes, celery, and onions. All of the new recipes were gluten-free, casein-free (GFCF) so we all ate the same thing. And, it was nice that Kai enjoyed everything as much as I did.  

 Yes, like it says on the t-shirt I'm wearing, life is good.

Soccer Game Not A Kick

For many families, going to your child’s soccer games is not just a weekend activity, it is a way of life. But, when your child has autism, you cannot take even the most routine of activities for granted.

Soccer is popular with families, at least in part because it is a great sport for involving young kids. They can run around and kick the ball, and, at that level, don’t have to have great hand-to-eye coordination or use anything other than their feet and legs to be able to play and have fun.

We thought about getting Kai involved in soccer before, but didn’t think that he would fit in with typical kids. He doesn’t always pay attention and loses focus easily. So, my wife and I were thrilled when we found out that there was a nearby soccer program for kids with special needs.

American Youth Soccer Organization (AYSO), the group that runs soccer programs across the country, has what they call a VIP program, which provides a soccer experience for kids and adults whose physical and mental disabilities make it difficult to successfully participate on mainstream teams.

We eagerly signed our son up, and Saturday was his first game. It was a beautiful day as the morning rain ended and the sun came out. We arrived at the soccer field to find an array of friendly, enthusiastic adult and youth volunteers. The coach and other adults organizing the program introduced themselves and welcomed us, and handed Kai his new neon yellow uniform.

He put on the uniform and looked pretty darn cute. As a guy who loved playing sports as a kid, I was excited that my son would get this chance to be like a “normal” kid.

But, the rest of the afternoon did not go the way we hoped.

When the uniforms were handed out, Kai got caught up with the numbers on the back of the jerseys. He was number six, matching his age, but he was more curious to know what numbers the other kids got. He did not want to leave the area where they were handing out the uniforms until he saw everyone’s number, and, when some kids did not come this first week, it upset him that their uniforms stayed in the bag, the numbers to remain a mystery for at least another week.

Once he got on the field, he started kicking a ball. He had not shown much affinity for sports, so we were happy that he was able to kick the ball at all and seemed happy about being out there. But, when the game did not start right away, he grew impatient.

Kai has a clock in his head that runs on its own schedule. And, when events do not start when he thinks they should, he acts as if an alarm has gone off in his head. He yelled and whined and complained and said he wanted to go home. I started thinking, ‘Oh man, we are not even going to make it to the start of the game.”

But, we did make it, and Kai had fun. For a few minutes. One thing he does like to do is run, and, at the beginning of the game, he enjoyed running up and down the field. He even got his foot on the ball a couple of times.

After a little while, though, he got tired of playing. He said he was hot. We gave him water. He said he didn’t want to play anymore. We told him to keep trying. He complained. We told him to told him to be happy. When he fell down, he got even more upset. The coach let Kai kick the ball to start play after a couple goals, but that didn’t make him any happier about playing.

I’m not sure if we did the right thing in pushing him out there on the field to keep playing, but letting him quit after only a few minutes did not seem like the answer either. I think there may be some secret to good parenting that involves finding the right combination of patience versus persistence, encouraging versus compelling. But, we did not find it that afternoon.

When halftime arrived, Kai thought the game was over and he could leave. He was upset to learn that he had to play more. My wife promised him that if he played nicely in the second half, he would get a popsicle from the ice cream truck that he had been eyeing over in the parking lot.

For the rest of the game, the most enthusiasm he showed was when the coach yelled out how much time was remaining to be played. “Three minutes!” Kai repeated with glee. “Two minutes!” he shouted joyfully. “One minute!” he said happily. “Game over!”

We got him to participate in the handshakes with the opposing team. But, he didn’t want the snacks that were handed out so we quickly left the field and headed over to the ice cream truck while the other kids and their parents hung out together for a little while. I debated to myself whether he should have a popsicle, and gave in only after he agreed to try harder and play more nicely next week.

Is it wrong to feel embarrassed about your child’s behavior? Somehow, I feel worse than if this had happened at a game for typical kids. Here, with all of the other special needs kids really trying hard and happy to be playing, and with all the volunteers giving their time so that the kids would have fun, it felt disrespectful that my son was the only one who was not playing nicely.

Next Saturday is week two. I will talk to him ahead of time and try to set expectations better. Perhaps soccer is just not his thing and we should not force him to participate. But, I don’t want him to give up too easily. Hopefully, I can find that secret to good parenting by next weekend.