Beginning to Explain Autism

About a month ago, I wrote how Kai asked if he had autism, and how I felt that I gave an inadequate response. My wife talked about it with our son’s school therapist, and the therapist thought it would be helpful if she worked with Kai at school about it.

So she just started having one-on-one sessions with Kai, using Catherine Faherty’s autism self-awareness workbook, Autism: What Does It Mean to Me?: A Workbook Explaining Self Awareness and Life Lessons to the Child or Youth with High Functioning Autism or Aspergers. The workbook guides a child through self-discovery exercises, while also providing a structure for teachers or parents to help the child learn more about autism.

The first chapter begins with several pages that guide the child through exercises that help them think about themself. For instance, the page below prompts a child to highlight their strengths and talents.

The workbook goes on that autism is another characteristic of the child, and explains what autism is.

In subsequent chapters, I believe that the workbook will explore topics in more depth, allowing the child to become more self aware, and to learn about what autism means and how it impacts them.

The therapist said that she would send home each chapter after they have completed it, allowing my wife and I to be aware of the concepts they are discussing. This may serve as a springboard for us to have further discussions with Kai about his autism.

I am grateful to get the assistance from Kai’s school on this. Kai is ready to learn about his autism. It is good to know that such a helpful tool as this workbook exists.

Budding Artist?

My son has always enjoyed drawing things, but he seems to be developing his craft a little more these days.

Here are a couple drawings of classmates at school:

I thought these had a bit of a Picasso flavor to them.

Kai also has taken to drawing at home as well. Here is his latest effort – a series of comics.

I asked Kai to explain them to me.

He said the one at the beginning of the third row are two people playing dodge ball. You can see the “Ohh!” before the character is flattened in the next panel.

The following one is about someone jumping to escape the Beatles. (Not sure why he has to escape the Beatles). You can see the guy yelling “Geronimo” and the elation of ‘flying’ before he splatters on the ground.

I wonder if Charles Schulz started out like this.

My Dad’s First Excursion Out of Assisted Living

When I was a kid growing up in the city of Chicago, we lived next door to a parking lot of a Kentucky Fried Chicken (as it was still called back then). As such, our back yard was visible from afar.

My dad loved gardening and had one of the nicest small city gardens back then. When his roses or wisteria were in full bloom, his garden always attracted admirers who would come over and view it from the parking lot.

And so we thought it was appropriate that his first trip outside of his new home in assisted living be a visit to the Chicago Botanic Garden. The Garden is having an orchid exhibit, which is a great floral show in this extended winter.

As we went to pick him up yesterday, I worried, just a bit, about how my dad would do leaving the facility where he has settled in nicely. Would it trigger thoughts that he wants to go home? Would he perseverate over wondering what ever happened to his wallet and credit cards?

I called my dad an hour ahead of the time we would pick him up. But when we got there he proclaimed that it was “a big surprise” that we were there.

He was excited to go with us, though.

And when we got there we saw a very large display of orchids.

My dad had a nice time. And it is nice that Kai also enjoys going to the Botanic Garden. The two took their time looking at all of the plants in the greenhouses.

After that, we went out to lunch. And then it was time to drop Kai off at his Sunday physical fitness group.

My wife and I took my dad back to the assisted living facility. My worries had been for naught. Everything went very smoothly the entire day.

I don’t know how much he will remember of the day. I’m guessing that he forgot most of it even before we took him back.

But that doesn’t change that he had a nice day. And that we had a day that we will remember for a long time.

My Dad’s Alzheimer’s: Making the Tough Choice

From the time my dad was officially diagnosed with Alzheimer’s, we knew that it was only a matter of time before he would not be able to continue living on his own.

We wanted to wait as long as we could because my dad loved the country home he had retired to in rural Michigan, a place where he had put so much work into in designing the house, planting more than a thousand trees, and working the land with his tractor and other equipment. It was nirvana to him that he could watch deer and geese and turkeys and other wildlife to his heart’s content.

It grew more difficult for us to let him continue to live there as his house increasingly became a mess, with garbage thrown out only when my sister or I went over and did it ourselves. My dad never seemed to notice the condition, and got offended when anyone said that it was a mess.

His hygiene deteriorated as he never seemed to shower except when he was with us and we insisted. He never did laundry; if we didn’t do it for him, he would keep wearing the same stinky clothes day after day.

His behavior grew odd in other ways, too. He wore many layers of shirts and pants, even on hot summer days. He collected things he did not need, and never got rid of anything.

The thing of it was that he never acknowledged any of it. He could easily talk about how there was no problem and he was so articulate that you could almost believe him if you didn’t see the reality of the situation yourself.

More recently it became apparent that his memory, which had been bad for some time now, had deteriorated even further. On the trip back from my sister’s house at Thanksgiving, we stayed overnight at a motel. We went out for dinner and when we returned to the motel, my dad had no idea where we were or what we were doing there even though we had checked in and used the swimming pool before going out for dinner.

As far as I was concerned, that was the last straw. That, along with the fact that my dad did not seem to be enjoying his rural home like he used to. Even before winter, it was becoming apparent that he did not go outside much. He did not work the land any more. He seemed to be staying inside with the television on all day.

But we knew it would be impossible to persuade him to leave.

He had previously resisted even minor suggestions like having someone come in once a week to clean, or to have meals delivered to him. Everything was fine, he said. He didn’t need any help.

But we knew things weren’t fine. And so we began looking for a place for him to live. Living with one of us was not an option. We would not be able to give him the level of attention that he needed, and it would put an incredible stress and strain on our family if we tried.

So we began looking for a place where my dad could be professionally cared for 24 hours, and where he would have an opportunity to socialize with staff and other residents. We especially wanted to find a place that had the ability to care for people with Alzheimer’s.

We found several places relatively near our home.

Kai went with us on three of the visits, and took great interest in finding a good place for Ojiichan.

Once our visits were complete, we made our decision, choosing a place that specializes in memory care. We were particularly swayed that the executive director there seemed to best understand how difficult it would be to get my dad to leave his home.

And that was our challenge.

How would we get him to agree to move?

The answer, we came to realize, is that we were not going to get him to agree. But we would have to move him nonetheless.

I called him and told him that I would pick him up and bring him back to our house the weekend we would be celebrating Kai’s birthday (the first time).

He was very happy to come.

He played the harmonica.

He played with Kai.

He went to Kai’s piano recital.

And celebrated Kai’s birthday.

But the next day it was time to take my dad over to the assisted living facility where he would live.

We told him that we were going out to lunch, which was true. We did not tell him that he would stay there.

As we arrived, my dad did not notice the signs that clearly noted that this was a place for assisted living, not a restaurant. As we walked in, he did not notice that the place really did not look like a restaurant at all.

The arrangements had all been planned out ahead of time. The staff took us back to a room where we would have lunch together.

My dad enjoyed the meal.

And when we were all done, one of the staff came back and told my dad that he would be staying there. The rest of us got up, quickly said our goodbyes and left before my dad could hardly realize what was happening.

It sounds harsh, doesn’t it?

But I firmly believe that in our case, there wasn’t any other way.

The thing that is hard to understand, it certainly took us a while to realize it ourselves, is that with Alzheimer’s, you have to look after your loved one's best interests even as they cannot see it for themselves. There is no reasoning with the person. They think that everything is fine. You can spend countless hours discussing and trying to persuade, and the only result will be frustration for all.

Once we finally understood that, we acted. For his own good.

Later in the afternoon, we got a call from the executive director. She told us that my dad was adjusting surprisingly well. I think that the severity of his condition actually helped make the transition easier.

Just after we had left, they had the nurse measure his blood pressure and other vitals. He told her, “This is great! I’ve never been to a restaurant that did all this before.”

We did not visit him right away to give him time to adjust to his new environment. But we got updates from the executive director every day. My dad was actually enjoying being there.

While that was surprising given our concerns that he would not want to live anywhere away from his own home, it was also understandable. He was getting a lot of attention from the nice staff members whereas previously he had very little social interactions. He had all of his meals prepared and served for him, and all of his clothes laundered. And he had a very appreciative and enthusiastic audience for when he played the harmonica.

A week after we dropped him off, my sister, brother-in-law, and I paid our first visit. (Kai felt sick just as we were to leave our house so he and my wife did not come that time.) My dad was happy to see us. He was not angry about being there. In fact, he showed us around, introduced us to everyone there, and told us how well taken care of he was.

From the following week, Kai has joined my wife and I on our weekly visits. We can now see my dad much more often than when he was living so far away.

My dad is always happy to see us.

We usually take with us the one game, Suspend, that we know my dad is capable of playing.

And we have lunch together – my wife prepares a Japanese meal that she knows my dad would enjoy. In the picture below we brought tonkatsu (a Japanese fried pork) and norimaki (rice ball).

And so all has been good.

In our case, the transition went as well as we ever hoped it would. We are relieved that my dad is in a place where he is getting the attention and care he needs. We are happy that he is happy there, and that we can see him more often.

There will be difficult days ahead as his condition worsens.

But there is also comfort in knowing that we did what we needed to do for him.

ISAT Anxiety

In Illinois, this is the week that 3rd – 5th graders take the ISAT, the standardized test that measures school performance.

Even children with special needs are required to take the test, and though it means more to the school than to the individual students, it still causes anxiety among those taking the test.

Last year was the first time that Kai took the test, and he did as expected, excelling in math but lagging in reading. His math score was above average, but would have been even higher except that he got a zero for the part of the test where you have to explain your answer.

This year, I got a couple prep books from the library and had him take a few practice tests over the weekend. I could see why he will probably get a zero again on the “explain” portion of the test. When asked to draw a graph and then explain how he did it, he drew the graph nicely. But his explanation was rather rudimentary.

“I looked at the numbers. Then I drew the bars.”

The answer booklet gave a much more detailed response, describing how the data was in multiples of 5 and so that was the increments on the y-axis, and how the title of the graph was taken from the title of the table, and so on. Yeah, my son is not going to describe all that. Not this year anyway.

Yesterday morning was to be the first day of the test. Kai said he was nervous, but otherwise seemed fine.

So I was surprised when my wife texted me later to say that the school nurse had called and asked her to pick him up and take him home as he was sick.

My wife said that Kai did take a nap when he got home, but by the time I got home from work, Kai was his usual energetic self, showing absolutely no sign of any illness.

This was not the first time that Kai had gone to the school nurse’s office complaining of not feeling well. It seems to coincide with stressful events. Usually the nurse will take his temperature, tell him he is fine, and send him back to the classroom. Yesterday, though, the regular nurse was not there and the substitute nurse erred on the side of caution.

So this morning we will try again. He seemed perfectly fine at home. Again.

Let’s see how he does at school.

A Tough Morning; A Fun Weekend

Kai’s attempt to raise his average above the minimum required to earn back his Level 4 privileges at school fell short last week. Though he was partially a victim of circumstances.

It came down to his performance at school on Friday. If he could have a good day, he would regain his lost privileges.

Unfortunately, he never really had a chance.

One of the boys that Kai shares a taxi with in the morning threw up in the cab. The driver turned around to take the boy home. Between the change in the route, the delay in getting to school, and the odor of the vomit, Kai was overwhelmed.

He had an emotional meltdown in the cab and was in no shape to go to his classroom when he arrived at school. The staff took him to the nurse’s office as he was screaming that he was sick and wanted to go home. Eventually he calmed down, and when they took his temperature and he saw that it was normal, he agreed that he was not sick. He went on to have a decent day, but the zero for first period was too much to overcome.

But he will have a chance to raise his average again this week. Though we are worried about how he will do today. Yesterday as we talked about school, he expressed anger at the poor boy who threw up and at the cab driver. He still has trouble feeling empathy, even though he himself threw up in a cab not all that long ago.

Oh well, here’s hoping it goes okay this morning.

* * * * *

When Kai was very young (two or three years old), he was afraid of dogs, especially those that were more active and came near him. So it was amazing to see him with Riley this weekend.

We have known Riley since she was just a few weeks old, and now at a year and a half, she still has the energy and playfulness of a puppy. Except now she is the size of a small bear.

She jumps all over me and Kai whenever she comes over. It can be a little much to have an excited bear all over you, but Kai doesn’t mind at all. He laughs and laughs and loves to grab her toy and run around and have Riley chase him.

And they didn’t just play chase inside the house. They had a lot of fun running around in the backyard as well.

We don’t get too many chances to see Kai interacting with other kids. But if his interactions with Riley are any indication, he is coming along just fine.

Losing His Level 4 Privileges

Kai’s performance at school recently has been mediocre at best. It is not so bad like in the old days when he had major incidents a few times a week, but we’re not seeing very many high scores on his daily Point Sheet either. The feedback from staff has been that Kai has been excessively silly and hyperactive.

At his therapeutic school, students earn extra privileges as they advance on the Level system. When Kai reached Level 4 last spring, he gained the privilege of moving about the school independently and using the Level 4/5 Lounge. I believe the lounge has special games and activities that students can play during breaks. When we visited the school, we saw Kai’s photo among those on the door of the lounge.

In order to maintain their Level 4 privileges, students must maintain at least an 85% average on their Point Sheet. This week, Kai’s average dropped below that.

The good news is that he seems motivated to get his average back up.

Yesterday, he had his highest score in a long time. Though it didn’t seem so high when my wife pulled the Point Sheet out of his backpack. It said 85%.

Kai immediately protested and said it was a mistake. He said he had a great day. And when my wife added up the scores from each period, she saw that the total was wrong. It should have been 93%.

Kai’s reaction?

“The teacher’s stupid!”

My wife did not agree with that comment but she did email the teacher to let her know to correct the score. Kai will need every point to earn back his privileges.

We shall see if he can raise his score back up over the threshold, and then maintain it. We are wondering whether a change in his medication might be contributing to his behavior, and are contemplating what to do about it.

Well, let’s see what happens the rest of this week.

Missing the Big Event

Kai is not much of a sports fan, certainly not like I was as a kid, but he does look forward to big sporting events.

He has enjoyed watching the Super Bowl the last few years, not so much for the game, but more just the event of the Super Bowl (like a lot of casual fans).

He also wanted to watch the Winter Olympics with us the past two weeks, though much of the time he was working on a Lego model or on his iPad instead of actually watching what was happening on the television.

Yesterday was another big event, the kickoff of the NASCAR season with its most prestigious race, the Daytona 500.

Kai and I have been watching the Daytona 500 together for the past two or three years. I wish he were as interested in watching a Chicago Bears football game together, but I’ll take my father-and-son bonding moments whenever I can get them.

I let him skip out of his usual Sunday afternoon special needs workout group, and we got his math work done in the morning. So we were all set as the race started at 12:30.

Kai has developed a rooting interest in NASCAR. His favorite driver is Jimmie Johnson – I think my son is a bit of a front-runner as Jimmie won the Chase last year. His second choice is anyone other than Brad Keselowski, who is his PE teacher’s favorite.

We watched the race for about an hour when a storm hit Daytona and the race was stopped.

We waited for the race to resume, but after awhile it became evident that it would not be a short delay. We went on to other things.

We made it over to the sledding hill.

With a brief warm-up earlier in the week, some of our snow had melted, and the resumption of the cold weather later in the week put a coating of ice over much of the hill.

It was great conditions for going fast. And with all of the sledding we’ve done this winter, Kai had no trepidations about the speed.

It was a fun time.

When we got back home, the race was still delayed. We told him that at this point, even if the race resumed, it would not end until after his bedtime and that Mom and Dad wanted to watch the Closing Ceremony of the Olympics.

Kai said that his PE teacher would watch the race until the end. Ha, well when he gets to be his PE teacher’s age, he can stay up late, too.

All in all, though, he handled his disappointment about not seeing the race very well.

This morning, the first thing he asked when he woke up was who won the race. He didn’t mind that his driver finished fifth, but he wasn’t happy to hear that his PE teacher’s guy had finished ahead in third place. In the past, some good-natured kidding from his PE teacher caused Kai to become angry. Let’s see if he can manage his frustration at school today as well as he handled his disappointment yesterday.

Drawings His Notes

A few weeks ago, I wrote about how my son has been doing poorly on the quizzes he takes after watching short BrainPop videos. I had him start taking notes in an attempt to improve his scores. But instead of writing down only the most important thoughts, he wrote down nearly everything that was said. And so, it took him 30-40 minutes to watch a 4-minute video.

My blog friend Shiroi commented at the time that Kai would get tired of writing too much and will start learning to shorten it.

Well, that has come to pass.

Though I don’t think it is quite in the way that Shiroi had in mind.

Instead of writing sentences or phrases, Kai has started drawing pictures for his notes.

Here’s one sheet of drawings he made while watching the video on the Civil Rights Movement:

If you look closely at the above, you will see images that reflect segregation, the landmark Brown versus Board of Education ruling by the Supreme Court, the time when Rosa Parks refused to give up her seat on the bus, Martin Luther King’s “I have a dream” speech, and the passage of the Civil Rights Act in 1964, among others.

The following is the sheet of drawings he made while watching the video on Galileo Galilei:

I did not watch this video with him so I don’t know what all the drawings are about. And that is where my concern comes in.

It doesn't particularly matter if I don't understand his notes, but I wonder whether Kai will remember what these images represent?

I like that he enjoys drawing these pictures and has much more fun than when he was writing out long sentences.

But I do wonder whether, after time passes, he would remember what each image represents. At some point, I would think that he would need to learn proper note taking.

But I also know that some people are more visual learners. And if this helps Kai stay motivated, then I suppose it is a good thing, for now anyway.

By the way, he got 100% on the quiz on the Civil Rights Movement and 90% on the one on Galileo. So that is good.

Though he only got 60% the following day on a quiz on Abraham Lincoln. So the jury is still out on this.

Absolutely Mad

My son is definitely getting more mature but that doesn’t mean that he still doesn’t get extremely upset at times.

When Kai is in the car, he regularly listens to the Kids Place Live channel on SiriusXM Satellite Radio. One of the regular features on the station is to announce kids’ birthdays.

My wife thought that Kai would get a kick out of hearing his favorite personality on the station, Absolutely Mindy, announce his birthday, and so she completed the online request.

Last week, on the day she had requested, she went to pick up Kai at school and waited with the car radio tuned in to the station. But before Kai came out of the building, Absolutely Mindy’s show started and she read the birthday announcements.

When Kai got to the car, my wife told him that Absolutely Mindy had announced his birthday on the air.

He was not happy. Not at all.

Apparently he was loud and angry the whole drive over to his therapist.

“I AM NEVER GOING TO LISTEN TO ABSOLUTELY MINDY EVER AGAIN!”

Never mind that it wasn’t her fault. It wasn’t anyone’s fault, really. You just cannot schedule the announcements for a specific time.

I didn’t find out about this whole thing until the next day. And when my wife started telling me about it, Kai was still mad.

“DON’T SAY ANYTHING, MOM!”

He didn’t want to talk about it, but my wife explained the whole thing to me anyway.

I tried to explain to Kai that it wasn’t Mindy’s fault that he missed the announcement, but he would hear nothing of it.

So, at ten years of age, he has matured quite a bit.

But he still has a ways to go on the whole misplaced anger thing.

Birthday Celebration, Part III

This weekend, we had our third and final birthday celebration for Kai, this time to coincide with his actual birthday.

In the morning he received phone calls and voice messages from grandparents who all sang “Happy Birthday” to him.

In the afternoon, at his boxing class, he told the instructor that it was his birthday, and at the end the whole class sang “Happy Birthday” to him.

In the evening, we Skyped with his grandparents in Japan and had a multi-continent singing of “Happy Birthday.”

His grandparents had a good view as he blew out the candles.

And they got to watch as he opened his presents.

Amidst all of the singing and celebration, it has not been forgotten that our boy is now double-digits in age.

He is truly growing up fast, and not just in size. While still child-like in his innocence and enthusiasm, Kia’s maturity is emerging in many ways. He is able to tolerate things better than ever. He seems to be more understanding of things that were beyond his comprehension before.

To a child, birthdays are about cake and candles and presents and having “Happy Birthday” sung to him. But to us parents, it is a marking of a milestone, a measuring of progress, and a reminder that the little boy won’t be little all that much longer.

Happy birthday to you, Kai.

Birthday Celebration, Part II

Our birthday palooza series of celebrations for Kai continued this past weekend.

This time, his grandparents and a cousin came over.

His cousin arrived with a gift for Kai in hand. But his grandparents had Kai’s present delivered to our house earlier, though we hadn’t shown it to him yet. As some of us went to the kitchen, Kai went up to his grandfather who was settling in in the living room. “Papa, did you forget something?” My wife rushed to explain to Kai that his grandparents had, indeed, gotten a gift for him.

And that brought the smile back to Kai’s face.

The only tense moment came when I asked Kai not to use his iPad at dinner. After protesting for a brief moment, he engaged in conversation the rest of the time. He even volunteered to play the piano for his guests without anyone prompting him to, saying that he knew they liked to see him play.

Soon it was time to open presents…

blow out the candles…

and have cake and play.

He received a couple of great Lego sets, and started on one right away.

It was a nice evening. Perhaps the most noteworthy thing about it was that there wasn’t anything particularly noteworthy. There were no meltdowns, no stress. Just good times.

Nice.

Birthday Celebration, Part I

We have been pretty busy here. Not the least of which was due to two birthday celebrations for Kai in the past week and a half.

And it’s not even his birthday yet.

The first celebration was the weekend before last. We had my sister, brother-in-law and father over so it was a perfect time to have our first early birthday celebration.

We had a rib roast for his birthday dinner, but for Kai, the only thing that really mattered is birthday cake and presents.

Here he is blowing out the candles on his cake.

And then it was time to open presents. My sister’s dog wanted to see what Kai got.

It was a balloon game from his grandfather.

Kai was really absorbed in two science experiment kits he got from his aunt and uncle.

Kai wanted to start doing some experiments right away, but we convinced him to play the balloon game with everyone. The object of the game is to take turns pushing the rods in a little at a time until the balloon pops. Kai was nervous in anticipation of the pop.

But when it finally did pop, he laughed along with everyone else.

The next morning, he started on his first experiment.

And every evening for the rest of the week we did science experiments instead of our usual evening game.

And so it was on that first week of celebrating Kai’s birthday. But this year, his birthday celebration will be a nearly month-long event. There will be more to come.

“Do I Have Autism?”

As the Super Bowl turned into a rout, I lost interest in the game. I got my laptop and began browsing a couple of my favorite blogs.

Kai came over next to me to see what I was looking at. I was on my friend Betsy’s blog and she has a photo in the sidebar of a person’s hand holding the autism puzzle piece.

“Do I have autism?”

The question took me by surprise.

We have a magnet of the autism ribbon on the back of our car. Over the years we have had numerous autism books and publications in the house. My wife and I have had conversations about autism while Kai was sitting at the kitchen table with us. Not once had he ever asked about autism.

I told him that, yes, he does have autism.

“Is it a bad thing?”

Oh boy, is that a loaded question. I know that many grownups get upset about how people answer this question. I was just concerned about saying something that might make Kai feel inferior.

I told him that it wasn’t a matter of it being a good thing or a bad thing; it just is.

The moment I said it, I knew it wasn’t a particularly good answer. It surely wasn’t going to satisfy him.

He asked the question again, but I couldn’t think of a better response. In my head I started cursing the Seattle Seahawks. It’s their fault for putting me in this position.

Kai then mentioned a boy in one of his special needs activities.

“A___ has autism and he can’t talk. He just grunts.”

“But I can talk really good.”

Yes, autism is a wide spectrum, I explained. It affects people differently.

He mentioned another boy.

“C______ sometimes gets too close and violates my personal space. He doesn’t talk either.”

He then had me click on the puzzle piece which took us to the Autism Speaks website. I pointed out the stat that said that autism affects1 in 54 boys.

“That means that if you had 54 boys, I would be the one with autism!” he said enthusiastically.

I was trying to think of what to say, but before I could come out with something Kai said he had to go to the bathroom. When he came back his mind was on something else.

So I totally failed to take advantage of the opportunity to have “the talk” with him.

But it is good to know that he now has an awareness of his autism. It opens up the opportunity to talk to him about it more. Hopefully I will be better prepared to have that conversation the next time.

Right now I kind of feel like Peyton Manning. I didn't take advantage of my big moment.

I’m not sure if Peyton will get back to the Super Bowl. But I’m pretty sure I’ll have another chance to have a talk about autism with my son.

I better start preparing.

Kai’s Second Piano Recital

A year ago, Kai performed his first piano recital. Ahead of the big event, my wife and I were very nervous. Not so much about how well Kai would play, but whether he would be able to play at all. We were stressed over whether he would get irritated about something and have some type of public meltdown.

As it turned out, he did not have any issues, and ended up playing beautifully, too.

I suppose it is a sign of progress that this year we were far less concerned about the potential for any behavior issues.

However we were concerned about the quality of his play.

He would perform two songs this year. And in the days leading up to the recital, Kai could not seem to get either one right. He has been more silly and hyper than usual recently, something his school noticed as well, and his piano practices suffered from his lack of seriousness and concentration.

At the recital, he made a mistake right at the outset. But he knew to keep going. He made a few more errors. It wasn’t his best performance. But he played better on his second song than on his first. He was one of the few students who remembered to take a bow at the end. All in all, it was not too bad.



Though it’s not always top-of-mind with us, the reality is that Kai has raised the bar with us, not just in his piano skills, but in his ability to cope and get through life.

And when I see it like that, this performance, though flawed, was a triumph nonetheless.

Good job, Kai.

Taking Note of Note Taking

My plan to have Kai work on his comprehension skills through the short videos on the BrainPop app hit a snag when he stopped watching the movies. With him often losing points because he did not score well on the quizzes given after the movie, he decided that there were other apps he’d rather play with.

And so I restructured the incentive plan. He would only gain points for doing well on the tests given at the end of each video, but would not lose any if he did not do well. However, he would have to try; on weekends, he would not be able to use the iPad for anything else if he did not do the BrainPop first.

While that new plan got him to watch the video of the day, he still did not perform well on the quizzes. Too often he scored around 50%.

I thought it would help him if he took notes while he watched the movie.

I instructed him to write down the things that were most important. I tried to educate him that good note taking was not about writing every fact, but rather taking note of the most relevant items and writing only things that he would not know or remember otherwise.

Kai proceeded to pause the movie every five seconds and write down everything he heard.

The first time he took notes it took him about forty minutes for him to get through a four minute video.

On the positive side, he scored 100%. I think the act of writing everything down got him to pay attention much more than he had been.

Since then I’ve kept harping on him to not write everything down. As he watches the video, I try to coach him on what he should write and what he can let pass.

Usually he doesn’t do as I say.

Though this weekend he got through a video in about a half hour, so that is some progress.

I think one of the most frustrating aspects of being a parent for me is when my son doesn’t follow all of my great advice.

Do you have any suggestions? I’ll be taking notes.

Kai’s Laughter

My son’s laughter is definitely one of his most notable qualities.

From the time he was very young and his personality was just starting to peek through, it was evident that Kai was a very exuberant child. I recall that at his early IEP sessions, we started out the meetings by going around the table with everyone telling what qualities of Kai they particularly enjoyed. Almost everyone mentioned his smile, personality, or laughter.

Yesterday, he and I took advantage of some fresh snow to go sledding once again. And though the conditions were not as icy fast as the week before, we still had plenty of fast runs down the hill.

On one particular run, one of Kai’s snow boots fell off halfway down the hill. Kai thought it was the funniest thing. I was irritated that I had to go back to retrieve it, and told him to make sure he kept them on his feet from now on.

A few runs later, I told him that I would take a video. He said something about losing his shoe. I told him to not to lose it again. Little did I know that he was planning to deliberately kick off his shoes (snow boots) on this run.

You can see the video of it here. (Apologies that you will have to turn your head to the right to see it properly. I haven’t figured out how to shoot video from my Android phone.)



You can hear on the video that I was a little irked that he deliberately lost his shoes, while he thought it was the funniest thing in the world.

After we got home, he could not wait to see the video and then to show Mom.



He ended up watching the video several more times after this, laughing just as hysterically each time.

And you know what? By that time, he had me smiling, too.

Silly kid.

Sweet kid.

Not Being Able to Distinguish A Deliberate Act From an Accident

Kai is doing much better overall when it comes to his anger and aggression.

But it is still not perfect.

About a month ago, Kai visited and helped out at a food bank along with other kids from school. While there, another boy accidentally dropped a can of food on Kai’s foot.

Kai is still mad about it.

We keep telling him that it was an accident. From what the school told us, the boy did not deliberately do it. But Kai has difficulty distinguishing between the two. In his mind, all that matters is that he suffered pain and so that boy is his enemy.

One further complication is that this boy and Kai share a cab to school. We understand that shortly after the “can incident,” Kai raised a ruckus in the cab when this boy sat next to him. Since then, the school has instructed the taxi driver to seat them in separate rows. And all has been calm.

But earlier this week, a new driver came to pick up Kai. We found out later that she either had not been told or had forgot about the seating arrangement.

She went to the boy’s house after picking up Kai and she seated them in the same row. Kai ended up hitting the boy with his backpack and then had trouble calming down even after he arrived at school.

It is frustrating.

1. The other boy did not intend to drop the can.
2. It happened weeks ago. Why can’t he get over it by now?
3. The taxi is a wide van; it is not like they are sitting directly next to each other. There is a space between them.
4. Kai should not react so angrily regardless.

We spoke to Kai about this. The school had already made him apologize to the boy but we had him do so again. He also apologized to the driver for the trouble he caused.

But I don’t think we have seen the last of him getting angry over an unintentional action of another.

In fact, just yesterday, he had another major incident. We didn’t get the details from school, but from Kai said, it sounds like he over-reacted when another student may have accidentally damaged a project Kai was working on during break time.

So, we will need to continue to work on this.

Sledding Failure is a Big Success

This past weekend, Kai and I got in one more time sledding before the warm weather melted all the snow. When we went, there was actually very little snow on the hill – because it had all turned to ice.

Conditions were very fast to say the least. And not only did we fly down the hill, we kept sliding well past the bottom of the hill where it flattened out.

We made several record-setting runs, and then it happened.

We crashed.



As Kai put it, it was an “absolute failure, waa, waa, waa, waa.”

And yet, our failure on the sled was a huge success.

In years past, a crash like this would have terrified Kai and caused him to never want to go sledding again. But this time, he laughed it off and could not wait to make another run.



And when we made it all the way down the hill without crashing, it capped off our most successful sledding outing yet.

Makes me almost wish for more snow so we can go again.

Saying the Darndest Things

Do any of you remember Art Linkletter?

When I was very young, I came home from school every afternoon to find my mother watching Linkletter’s talk show on television. Her favorite segment was when he interviewed young children, who would invariably make some intentionally humorous comment. Linkletter later wrote a book called Kids Say the Darndest Things, which stemmed from these segments.

I think that Linkletter would have gotten a kick out of some of the things Kai has said recently.

* * * * *
When we met with Kai’s teacher at school last month, she told us about how, at the beginning of the school year, Kai “fired” her at least once a day. She thought that they had each adjusted to each other as the firings had become much less frequent these days.

* * * * *
We use a Point Store at home to try to incentivize Kai for certain behaviors. He has a lot of input into the apps, games, or books that are “sold” in the store, while my wife and I set the price, the number of points he has to earn to win the prize.

On a recent occasion, I did not immediately tell him if we would include a certain prize in the Point Store, or how much we would price it at if we did include it. I was not familiar with the app and wanted to research it more before deciding. But as I had to go to work, I did not have time to do that at the moment.

I’ll do it later, I promised Kai.

He responded, “I’ll text you.”

Huh?

I don’t need my nine-year old texting me! Certainly not about some app that he wants.

I told him that I would get to it when I got home. And that satisfied him.

This time, anyway.

* * * * *
We visited a few assisted living places the other day. At the first place, the woman we met with introduced herself to the three of us.

Kai immediately spoke up.

“We’re looking for a place for my dad’s dad to live. Why is this a good place?”

Ha, no pleasantries with this guy. Let’s get right to it.

After we had toured the facility and wrapped up our visit, the woman told Kai to be sure to be “just as tough on the person you meet with at the next place.”

* * * * *
The three of us were playing a Mario Party game on the Wii the other night. Kai was winning while my wife and I were battling to stay out of last place.

My wife was struggling with one of the mini games so Kai started giving her advice on when to press the buttons.

I grumbled that he didn’t have to help Mom.

“But I want to protect my mom!”

My wife thought that was incredibly sweet. I thought so, too. Though, I continued to grumble.

* * * * *
All this from a boy who, at one time, thought might never say more than two words.

Art Linkletter would have loved it!

More Zumba

The Zumba Wii game that Kai got for Christmas has been a great source of entertainment in our house – well, at least for me and Kai.

Kai is now very motivated to do Zumba several times a week. He thinks of it as fun, not as exercise.

A big reason why he loves it so much is because he loves music and dancing. But he is also motivated by anything that has scores and levels. And this Zumba game is perfect in that regard because it rates your performance after every dance. You work your way up to different levels while unlocking prizes along the way.

Of course, Kai would not like it nearly as much if he fared poorly on the ratings. But he is doing very well.

And that is where the entertainment factor comes in for me.

Kai outscores my wife on every single dance. Every. Single. Dance.

Usually it is not even close.

On one dance the other night, he got four stars, which, according to the program, made him a “Rocker,” while on the very same dance, my wife got zero stars. The program deemed her a “Beginner.”

This irritates my wife to no end. And of course the scoring makes no sense as my wife used to be an aerobics instructor and she has plenty of rhythm and good moves.

But I like to play it up.

I tell her that she just needs to practice more. After all, not everyone can be as good a dancer as Kai. And then Kai joins in.

“Don’t worry, Mom. You have to keep trying. Maybe you’ll be as good as me one day.”

Here’s a short clip of he and I doing one routine together.




Not bad, huh?

Honoring His “First Father”

It is a Jewish custom to light a special candle that burns for 24 hours, called a Yahrzeit candle, on the anniversary of the death of a loved one. Yesterday marked the tenth year that my wife has been lighting one for her late husband, Kai’s biological father.

It wasn’t until the past few years that Kai even noticed that my wife did this. Having been in his own world much of the time before, he didn’t seem to notice things like that before.

But over the past couple of years, we have been filling Kai in more and more about his “first father” as he likes to say.

Yesterday, I understand that he prayed with Mom as she lit the candle. And when I got home from work he told me all about it.

When Kai was younger, I wasn’t sure he would be able to comprehend his somewhat complicated family background. That he does, and has such maturity and understanding of what yesterday meant to his mom is quite heartwarming.

Even More Frozen

I woke up this morning and our house was cooler than it usually is. Uh oh.

Sure enough, I discovered that our main furnace was not working.

I called the company that maintained our furnace in the past, and they said that the soonest they could come out was Thursday. Apparently, we were not the only ones with furnace issues.

Well, two more days without heat was not going to cut it. Kai did not mind, though. After all, the iPad still worked!

I called around some more, and found someone to come out today. Our heat is back on.

Even better, it looks like the worst of cold is over for now. Today the temperature got above zero to six degrees. Heat wave!

And best of all, it looks like schools will reopen tomorrow after an extended winter break. My wife is rejoicing at that news.

Hope you all were able to stay warm.

Frozen

We just got the call that my son’s school will be closed tomorrow. Not surprising as many other schools in the area had already announced early closures due to the impending severe deep freeze.

We in the Chicago area are used to cold winters, but the next two days may be the coldest days in Chicago history. The high tomorrow will be well below zero, while Tuesday it may warm and we may break zero.

I don't know if we are ready, but I think "our" dog is.

We also got more snow this weekend so we are buried. Here is a look out at our deck and backyard (taken from the comfort inside the house):

Since it was still balmy this morning, about 16 degrees, we went sledding one more time before being shut in for the next few days.

Kai enjoyed it, though the strong wind made it feel really cold already.

Keep warm, everyone!

Progress Noted on the Sledding Hill

When we go to waterparks, my son insists on wearing his swimming goggles because he is afraid of water being splashed on his face. His anxiety about it causes problems when some parks have policies that forbid the wearing of goggles on their waterslides.

I try to tell Kai that he can close his eyes and it’s no big deal if some water splashes on his face, but a big deal is exactly what it becomes.

No, we did not go to a waterpark this week. But, I thought of his waterpark anxiety the other day on the sledding hill of all places.

It was New Year’s Day, and with a foot of new snow, it was a perfect day to go sledding.

On our first run down, our sled cruised through the fresh powder. Kai and I got sprayed with snow from head to toe. We could barely see. Our faces were freezing.

I prepared for Kai’s eruption.

I tried to make light of the situation, laughing and exclaiming how much snow covered us.

For a second there, I wasn’t sure if Kai was going to lose it or not.

And then he smiled and said, “let’s do it again!”

We made about ten runs down the hill that day, getting sprayed each time. And he loved it!

In fact, he loved it so much he went back the next day with Mom while I was at work, and they did ten more runs.

It’s so nice to start off the new year with this nice little success.

Happy New Year!

A few weeks ago, we all watched the live version of The Sound of Music. Kai enjoyed it and said he wanted to watch the original movie version as well. So, for New Year’s Eve, we had a special movie night: ribs, shrimp, and the Julie Andrews version of The Sound of Music.

Then we donned our party hats, had my wife's delicious sponge cake for dessert, and prepared to watch the ball drop on Times Square.

Happy New Year!