Two Boys, One Name, New Friends

Sometimes when you are the parent of a child with autism, it is hard to make new friends. So it’s nice when fate seems to step in with a helping hand.

That’s what this week’s column in the Patch is all about. Click here to read more about our new friendship.

Weekend: Down and Up

My son has had a lot of incidents at school lately, and he’s been quick to anger at home, too.

On Saturday morning, Kai woke up angry. He seemed to be mad about everything. And he did not want to eat his breakfast.

A lot of times that will frustrate me, but this time I kept my emotions in check and rode out the storm.

When Kai finally decided he wanted to eat, he complained that his eggs were cold. I quietly told him that’s what happens when he doesn’t eat right away, but offered to heat up the eggs for him if he would calm down and eat nicely. After that, he settled down and was in much better spirits, and even finished his breakfast.

At karate class, though, he did not do well. He did not listen to Sensei and mouthed off to him. I have the distinct impression that Sensei has had enough of Kai’s bad attitude. Afterward, one of the younger kids in the class kept repeating what Sensei had said to Kai, “You did a bad job today, Kai.” Perhaps it is time to stop karate. Though I’d like to see if Kai will return to doing a better job if we can ever get his meds right.

After that poor start to the weekend, I was thinking it would be a long one. But things got better.

Kai accepted his punishment for his poor attitude at karate.

And he was really happy the rest of the time.

On Sunday, his mentors from school reported that he had a fun time playing at the pool on their outing to the YMCA.

And that evening, he wanted to help Mom make sukiyaki.

When he’s happy, you wonder why he can’t be like that all the time. And hope that perhaps we’ve turned a corner.

I doubt that anything regarding his anger has really changed. But, that doesn’t mean I’m not enjoying the good times when they occur.

I Think I Prefer the Torn Clothing

My son had two more major incidents at school yesterday. So far, the new medication does not appear to be effective.

Later in the day, as Kai was changing into his karate gi (uniform), my wife noticed a large bite mark on his arm. He had apparently bitten his arm at school during one of the incidents.

This photo is from this morning, and it doesn’t look as red as it did yesterday, but you can still see the teeth marks.

Usually, when Kai has incidents like this, he bites his shirts, sometimes to the point of totally tearing them apart. I don’t know why this time he chewed on his arm instead.

Shirts can be replaced. Injuries to his body can be more serious. I hope this isn’t the start of a trend.

I Know I Said I Did Not Want My Son Eating So Much, but…

After all the concern I expressed about our son’s dramatically increased appetite while he was on Risperidone, it feels odd to complain about the fact that Kai now does not want to eat very much.

We are back to how things were before Risperidone, when we had to constantly harangue Kai to eat his meals.

The other day, he was in a bad mood in the morning and complained about the breakfast he was served. I told him that we were not going to make him anything else and that he could go hungry if he did not like that. He chose not to eat his breakfast. I thought for sure that he would devour his lunch that day, but when he came home from school, we opened his backpack and saw that he barely had touched it.

This never would have happened while he was on Risperidone. Then, he would have happily eaten all of his breakfast, asked for more, eaten all of his lunch, and then come home from school demanding a snack.

In my mind, this change provides definitive evidence that his increased appetite at the time was the result of a side effect of the medication he had been taking rather than a natural growth spurt.

And so, I don’t think it was a bad decision to take him off Risperidone and try to see if something else might work without the side effects.

But, I do miss being able to eat my meals in peace, not having to fight to get my son to eat something.

Sigh.

I guess some people are never satisfied.

Like me. ;)

He WAS in a Good Mood...

Ever since we last changed medications, Kai had been more agitated in the mornings. But this morning he was in good spirits. And even when his taxi was running late, he remained in a good mood.

He played in the front yard as we waited. He had fun climbing on the mound of snow next to our driveway. He enjoyed picking up pieces of ice.

He held up one piece and said, “It’s a right triangle.” And it was.

I was surprised at how amiable he was, as he usually gets very anxious when the cab is late.

Unfortunately, the cab was really late – eventually coming about a half hour later than usual. And by the time it finally arrived, Kai’s good mood had dissipated.

He was mad, and said that the cab driver was a bad driver and that he hated her. He had not liked this driver ever since she took over the route a few weeks ago, as she never talks with him. But her being this late was unforgivable in his mind. I had to almost literally drag him out to the cab.

I asked the driver why she was so late. She had been late a few times before, too. I tried to explain that my son has a hard time with waiting and that a phone call would be appreciated under these circumstances.

When she responded by giving me attitude, I began to think that Kai was right about her (though not right in the way he expressed it).

Hopefully we can arrange with the school to get our old driver back, the one who is friendly and knows how to talk to kids like Kai.

In the meantime, our son got off to a bad start to the school day, on a rare day when he had been in good spirits.

And that puts me in a bad mood, too.

Bad Parenting?

Is there anything that frosts parents of children with autism more than when people assume that they are bad parents because their kids appear to be spoiled brats?

This week’s column in the Patch tries to educate those who are not personally familiar with autism, and calls for more understanding.

Click here to read the whole story.

Another Kai

A woman emailed me a couple of weeks ago. She had just discovered my Patch articles. She said that she and her family had recently moved to my town. She has twin boys, about a year older than my son. And one of her boys is named Kai. And her Kai also has autism.

Now that is what I call a remarkable coincidence. And you can’t just let coincidences like that pass.

And so, my wife and I met the woman and her husband for coffee one morning. It turns out that Atsuko is, like my wife, a native of Japan. And her husband Mike is, like me, originally from the Chicago area. It was as if we were meant to be together.

Yesterday, we had them over for dinner. It was the first time our boys would meet. Two Kai’s in the same house. What would that be like?

Our Kai was happy to have company over. And both of the twins seemed happy to be here.

Our Kai immediately took charge. He wanted the boys to play the Mario Kart game he had received for Hanukkah. The game had sat idle for much of the past month since we received it, but Kai suddenly took an interest in it this weekend. And he was thrilled to have some new players to watch.

Mind you, Kai did not want to play the game himself. He just wanted to watch the boys play.

New Kai is less verbal than our Kai. But he was able to communicate his wishes pretty well with his one or two word phrases. He wanted to be Luigi. His brother Aidan chose Mario.

Aidan is neurotypical, and you couldn’t find a better brother for a child with autism. Aidan is compassionate, patient, and understanding with his brother. And he showed those qualities with our Kai as well.

It was interesting watching the three of them interact. Our Kai was acting like the supervisor, telling the boys which course he wanted them to race. And the twins cooperated for the most part, and enjoyed the races our Kai had them do.

When Aidan wanted to play a different Wii game, I helped negotiate a compromise with our Kai. But for the most part, the boys played by themselves. And they played together longer than perhaps any play date we’ve ever set up for Kai.

It allowed us grownups to have a surprisingly relaxed time to get to know each other, a time that we enjoyed very much.

New friends + happy kids = a wonderful evening.

All thanks to our two Kai’s.

Question of the Day

We saw Kai’s grandfather at the play this past weekend. He mentioned that his birthday was coming up in a few days. He told Kai that he would be turning 39.

Kai usually does not understand when people are joking or kidding around with him or being sarcastic.

He almost always takes things literally.

He had a confused look on his face.

But he didn’t just stay silent. He addressed his confusion with his grandfather.

“Then how come you have gray hair?”

Ha! Good question!

Happy Birthday, Papa!

Medication Update: “Weighing” the Good Versus Bad

My son has been on Risperidone for a couple months, with the dosage bumped up for the past month or so.

During that time, we saw his aggression decrease. His spirits soared. He was sleeping better.

By all these measures, the medication has been effective.

This week, we made the decision to stop it.

The potential side effect of Risperidone is an increase in appetite and excessive weight gain. We noticed an increased appetite with Kai almost immediately after we started. And lately, we clearly saw that his belly was getting quite large.

When we put him on my wife’s scale that measures body fat content, it confirmed our suspicions. Our son was obese.

We have tried to increase Kai’s exercise – it is our New Year resolution after all. But on some days, with all of Kai’s after-school therapy and other activities, we are pressed for time just to get his homework done before he has dinner, bath, plays piano and goes to bed.

We already had him on a healthy diet, but have become even more rigorous in monitoring it.

And I suppose we could try to give him less to eat, but that is very difficult when he is almost constantly whining that he is hungry and can’t wait until the next meal.

And so, we decided that a drug that had this effect was not healthy for him.

It was a tough decision to put him on the medication, and it was a tough call to stop it when it had many benefits.

To replace Risperidone, the doctor recommended a similar drug, Seroquel. The risk of weight gain is also present with this new drug, so we will carefully monitor its effects.

This morning, Kai did not eat much of his breakfast. So it looks like his appetite has decreased already.

But he also got angry and aggressive with me. Maybe it was just a coincidence. Perhaps it will take a few days for the new drug to take effect.

We shall see.

Snowshoes

With our first real accumulation of snow, this past weekend we finally had a chance to use the snowshoes we received for Christmas.

We bundled up before we went out to the local nature center. My wife had gotten Kai some new winter gear to keep him warm on our outdoor adventures.

The complaints started as soon as we got out of the car.

I DON’T LIKE THIS HAT! I CAN’T TALK!

I took off the new ski mask that covered parts of Kai’s face.

I’M ITCHY!

I took off the new gloves that extended all the way up his arms.

When we started trying to walk with the snowshoes, the complaints resumed.

I HATE THIS THING!

Kai had fallen down. The snowshoes are longer and wider than boots so it takes a bit of getting used to so you don’t step on yourself. The walking motion is also different, more of a march where you lift your leg instead of dragging your feet along.

He couldn’t seem to get a handle on how to use the poles. It didn’t seem hard to me at all, but Kai was uncoordinated and the poles got in his way rather than helped him stay up.

My wife offered to carry his poles.

I WANT TO GO HOME!

I was getting impatient. I yelled at him to keep trying.

This was not looking good.

But at some point he started to get the hang of it. We all did.

And we made it to our goal: the frozen pond.

He enjoyed the walk. We all got exercise. And we got to get out on a sunny day.

I’ll put this in the ‘win’ column.

How Do You Explain Autism to Your Son?

Are you ready for “The Talk?”

Today’s Patch column recounts recent events that have me preparing to discuss autism with my son. Click here to read.

It’s a Hard Knock Life - When You Can’t See the Play

So, what happens when you take your son with autism to a play, and it turns out that he can’t see much of it or understand what it is about?

Kai’s 10-year old cousin Lucy was making her acting debut this weekend in a kids’ production of the musical Annie, with all roles played by elementary school students. Lucy was playing one of the orphans.

Lucy is an awesome kid. She’s sweet, smart, and talented. And she’s rather patient and big sisterly with Kai on the occasions they are together, and Kai likes her a lot.

So of course we wanted to see her perform.

We had taken Kai to a few plays before. It is hard to get him to sit still, and he isn’t always as quiet as he should be, but he likes music and will generally sit through a play nicely enough if it has a fun story and good songs.

And I thought that Annie would qualify in that regard. (I know that I have to turn in my man card as I admit that I loved Annie when I saw a touring company perform it years ago.)

So, on Saturday afternoon, we went to the church where the play was held.

The play was performed at the front of the church, on ground level, the same level as the audience. This church, like most, does not have theater seating. So, even though we were only in the ninth row (Kai counted, of course), we could not see a whole lot of the young, small performers. Instead, we mostly saw the back of the heads of the people in the rows in front of us. If we craned our heads, we would see glimpses of some of the performers.

Besides not being able to see much of the play, it was difficult to follow the dialogue. That was to be expected – after all, these are kids, most of who were acting for the first time, and not exactly like professionals when it came to projecting their voices. In addition, with children playing both the kids and adult roles, it was sometimes difficult to distinguish the characters. If you weren’t already familiar with the story, I think it would have been really tough to follow the plot.

Put it all together and it was not a conducive environment for Kai.

He fidgeted throughout. He talked quite a bit, except during the songs. My wife shushed him. I tried to hold him close and keep him quiet.

At nearly 8 years old and 65 pounds, he is long past the time when he should be sitting on his parents’ laps. But I had him on mine, mostly so I could keep him close and under control as much as possible.

I was somewhat thankful that his grandfather, rather than strangers, was sitting in front of us. I was afraid to turn around to see who was in back of us.

We almost left several different times, but each time Kai quieted down for the moment, saying he wanted to see the whole play. I think he liked the songs, and his cousin.

And so we stayed.

From what I was able to see, Lucy was awesome.

At the end Kai joined in the big round of applause for the young cast.

As we were walking out, we passed a table where we could write messages for cast members. My wife and I wrote notes to Lucy telling her what a great job she did. Kai simply wrote, “You’re cute. Love, Kai.”

When I later thought of how hard it was for Kai to understand what was going on during the play, I thought that it was actually remarkable that he wasn’t even more restless. So, though it was really difficult, it wasn’t a complete disaster either.

When I look at it like that, I might be inclined to agree that the sun really will come out tomorrow.

Winter Arrives, Finally

Now this is more like it. It is winter, after all. And we live in the Midwest.

We have had the mildest start to winter in my life. The string of 50-degree days felt nice, but very strange.

Of course, we had to get the mild weather this winter, the year that we got snowshoes for Christmas that we have yet to try. And the year that my wife got ice skates for all of us, which we’ve used only once.

But last night it finally snowed. Not counting the mirage of a snowfall we had last month, this is our first real snow of the season.

And Kai loved it.

He and I went out and played in it as it started falling yesterday. We had a snowball fight, and what is noteworthy is that he seems to finally be able to make his own snowballs this year.

This morning he wanted to help me shovel the driveway. Well, he helped for about two minutes until he realized what a pain it is, literally. And then he just wanted to throw more snowballs. He was in great spirits!

Unfortunately, the onset of winter weather wasn’t all good.

Kai’s taxi failed to show up this morning, presumably because of the weather. By the time I drove Kai to school, all of his joy over playing in the snow had long dissipated and he was extremely upset over being late, and for the disruption from his usual schedule. It was especially unfortunate, as he had been having a great week, with no incidents since he tore off the ends of his sleeves last week.

And now, as I sit here typing, I realize how much my back is aching from all the shoveling I did.

Okay, so I change my mind about the winter weather. Can we have 50 degrees again?

Campaign for Presents Continues

With my son ramping up his campaign to get more presents, it is interesting to what he is excited about.

One of presents he always looks forward to getting on his birthday is Ugly Dolls. He has already amassed quite a collection. The company that makes them is constantly putting out new dolls so there is no end to how many Kai can get. Ahead of Christmas and Hanukkah, and now once again ahead of his birthday, Kai goes on the Ugly Dolls website every day to look at the entire inventory. Though there are now over a hundred dolls, he has memorized the names of all of them, as well as the year each came out. He also knows what new dolls are due out later this year.

What I find interesting is that the anticipation of getting a new doll seems to far outweigh the joy of actually having one. These days he rarely plays with the dolls he has. And, anyway, it’s not like he would do much of the imaginative play with these dolls that typical kids would. So the thrill for him seems to be all in the chase, and once he has a new doll, he starts looking forward to the next one. I’m not sure if that is an autism thing, a guy thing, a collector thing, or just a Kai thing.

Another thing that he is obsessing over these days is one of his favorite gifts from Christmas 2010. Electronic Snap Circuits is a toy that teaches kids the basics about electronics. The set that Kai received enables kids to “build over 300 exciting projects.” Back when he received it, Kai was really into it for several weeks, doing several projects a day.

But lately he hadn’t played with it in months. Now though, thinking of his upcoming birthday, he’s taken interest in it once again. He declared that he wanted the upgrade set that would allow him to do 500 projects. He Googled it and looks at the product’s website every day, being sure to show it to me. When I mentioned that he hadn’t yet finished his first 300 projects, he started to work on them once again. At least with this toy, I know that he will likely play with it after he gets it, and it is educational so it will be good for him.

Legos is another toy that had been idle for months. He had a few sets from his last birthday that had been unopened. But after our recent trip to Legoland, Kai has taken a renewed interest. He wanted to get more sets. When I pointed out that he still had several that he hadn’t worked on, he set to work on them. Now he’s just about caught up and wants more RIGHT NOW.

In seeing all of this activity over presents, I wonder if the use of rewards from all the ABA therapy he’s had has made it harder for Kai to wait for things. In ABA, positive reinforcement is often used to motivate a child to do something that is difficult for him. In many cases, the rewards were given immediately. He rarely had to wait for weeks to collect on something. And for a child who has always had a lot of difficulty waiting for even 5 minutes, the notion of waiting 5 more weeks is very difficult.

For those of you with younger kids, I encourage you to try to stretch out the rewards with your kids while they are still young. It likely won’t be very easy. But it doesn’t get easier as they get older.

Greed, Patience, and a Teaching ‘Opportunity’

My son’s birthday is still over a month away, but he’s already getting excited about it. Or rather, he’s excited about the prospect of getting more presents.

You would think that with all the great gifts he just received on Christmas and Hanukkah, that there wouldn’t be anything he could possibly want for his birthday. Ah, but that would be an incorrect assumption.

His wish list is long. Basically he wants more of everything he already has, like Legos and Ugly Dolls, plus a few things he doesn’t yet have, like a molecular model set.

Frankly, the way he presents his wish list is more like a set of demands.

And so, I realize that this is an opportunity to teach him about not being greedy, appreciating the things he already has, and being patient about getting the things he wants. And when I say ‘opportunity,’ I mean endless parental frustration, of course.

I guess I shouldn’t expect that a child his age will truly understand that he will be better off in the long run for not getting everything he wants. And that waiting for good things can increase the joy when he finally does receive it. Heck, I know a bunch of adults who don’t understand those things. But I’d like my son to have some notion of being grateful for the many blessings in his life.

It’s not going to be an easy lesson to teach.

When I mention that he will not get everything that he wants, he replies, “YOU ARE SO MEAN!”

And when I tell him that the thing he so wants RIGHT NOW might come on his birthday, but not before, he will protest, “I CAN’T WAIT THAT LONG!”

Perhaps some things can’t be easily taught just by a dad’s preaching. Some things may have to be learned the hard way, through experience over time.

And that is how I will approach this.

I am anticipating a long, loud month.

When Torn Clothing Is Not a Fashion Statement

When my son came home from school the other day, he was not wearing the shirt he had on when he left for school in the morning. He was wearing only his undershirt. When we opened his backpack, we discovered why…

Click here to read the rest of this week’s column in the Patch.

Wii Like This Game

Our public library has a pretty good selection of Wii games, and we try to get one each week.

I’m glad that we have this opportunity to try these games at no cost. We have found that a lot of games look good on the shelf, but are not that much fun to play. There are a lot of mediocre Wii games out there, and I’m glad we did not have to pay to find that out.

That makes it all the more enjoyable when we do find a good game that we all like to play. And this week’s selection is one of the most best we have found in a while.

Big Brain Academy: Wii Degree is a game that tests mental agility in five different categories: Visualize, Identify, Memorize, Compute, and Analyze. Players take tests, with scores based on speed and accuracy. The difficulty adjusts with the questions getting harder as the player does well, and easier if the player makes mistakes. At the end of each quiz, the player gets a score and can see their strengths and weaknesses.

My wife and I have found the game to be addictive, as we want to play it again and again to improve our scores and out-do each other. And Kai enjoys it, too.

After you complete the quiz, the game assigns an occupation that matches your skillset. Kai was deemed a mathematician. Hah, good match!

It’s no surprise that he does best in the Compute section. But I like that he gets practice in the other areas, too.

I don’t know how much this game will truly improve my son’s skillset in these areas, but it seems like a way to sharpen his brain. And that is better than a lot of other video games.

I think there was something else I wanted to write, but I’ve forgotten. You see, my weakest area is Memorize.

Favorite App: BrainPOP

My son has really been enjoying the iPad that he received for Christmas. His new favorite app is BrainPOP.

BrainPOP is an educational app that features a new animated movie every day. It covers a wide range of subjects including science, math, social studies, English, arts & music, health, and engineering & tech.

Now, movies about science and math may not sound like something most seven-year old would enjoy, but BrainPOP makes each topic really fun.

Each movie features the characters Tim and Moby. Tim is human, and explains the topic. Moby is an orange robot who makes beeping noises and provides a lot of humor as he drives Tim crazy.

The movies are only a few minutes long, so they don’t go into a lot of depth. But they do a great job of giving an introduction to someone who is not familiar. Some of the topics are a bit too advanced for my son right now, but he seems to be interested in most of them.

We also like that the movies are subtitled.

After watching each movie, users can take a quiz. It’s a nice way to see how much your child learned.

Kai looks forward to checking out the new movie every day, and he almost always goes on to watch others on related topics. Of course, he is particularly interested in the science and math ones.

The featured movie of the day is free, but for $6.99 a month, you can access the entire library of past movies. If you are not sure your child is ready for this, I’d let them view the free movies for a few days and then decide if it will be worth subscribing to.

For those of you without an iPad, you can also check out the material online at http://www.brainpop.com/.

Rough Day

My son came home from school today in a bad mood. It was readily apparent that he had had a bad day. His Point Sheet from school verified it.

Then, we opened up his backpack and found the shirt he had worn to school. Kai had chewed off the end of both sleeves.

It wasn’t the first time he had destroyed his shirt. The last time it happened was just before the break, at the holiday concert at school.

Now we are awaiting the email from his teacher to find out what happened.

In the meantime, anyone know where we can get chew-proof clothing?

Dad’s New Year Resolution

Did you make any New Year’s resolutions? Have you broken them yet?

One of the most common resolutions is to exercise more and lose weight. And I am among those who have made that resolution. Except that I did not make it for myself.

I made it for my son…

Read the full article in the Patch. Click here.

New Year’s Tradition

In Japan, New Year’s is the most important holiday, one that is celebrated for days, with many special foods and rituals. Growing up in Japan, my wife enjoyed all of that of course.

But even though I was born and raised in the U.S., I got a taste of the festivities as my aunt and mother prepared a lot of the traditional Oshogatsu dishes every New Year’s.

Now we are grown up, and my wife and I don’t prepare all of the Oshagatsu dishes. But my wife does make ozoni, which is a Japanese soup containing mochi rice cake.

And this year, Kai helped with the preparation.

And then it was time to eat. The mochi doesn’t have much flavor of its own. It is very sticky and chewy. So, I wasn’t sure Kai would like it.

But, he ate all of it and asked for more.

In the big scheme of things, this is not exactly a major milestone. But sometimes it is the little things – like seeing our son enjoying a family tradition – that bring the nicest feelings of contentment.

This post is part of the ‘LITTLE things are a BIG deal’ meme hosted by Autism Wonderland. Click here and check out the other great posts.

Our New Year’s Eve

We had one last family outing to wrap up 2011. We drove to a nearby community to enjoy their Winter Wonderland, a drive-through holiday lights spectacular.

I had shown Kai a YouTube video of it and he said that he wanted to go.

When we got there, there was a line of cars. Every car was proceeding very slowly as everyone was undoubtedly were taking in all the sights and snapping a lot of pictures.

We saw every cartoon character you can think of.

And the lights were impressive.

In addition to the lights and displays, signs advised us to tune in to a local radio station that played Christmas music. So, we tuned our car radio to 107.1.

But the sounds we heard were not Jingle Bells. No, what we heard was:

I WANT TO GO HOME!

HOW MUCH LONGER IS THIS?

GO FASTER!

WE’RE GOING ZERO MILES PER HOUR!

THIS ISN’T A WINTER WONDERLAND; IT’S A STUPID WONDERLAND!!!!!

It took us nearly an hour to drive through the area, though it seemed to last a lot longer.

But the one good thing about it was that the time we spent at the Stupid Wonderland did help to pass the time. By the time we got home, had our Video Night (The Hunchback of Notre Dame II), and turned on the television to watch the ball drop on Times Square, time seemed to pass quickly and we were able to stay up until midnight without too much trouble.

Kai was excited as we made our Happy New Year 2012 sign.

And when it was time to count down, he was boisterously happy.

I can’t wait to see what this new year brings.

Hope you are having a happy start to 2012!