Visit to Legoland

With our son off from school for two weeks during Winter Break, we have a lot of time to fill, and we’ve been trying to come up with things to do with Kai. He actually told us that he wanted to go to Legoland one day, and we promised him that we would go.

In anticipation, this week he began building several of the sets he had received before, ones that have sat on the shelf untouched for most of the year.

And, yesterday, we made our trip to Legoland.

We found out that a lot of other people had the same idea.

Even though we had gotten tickets online for entry at a specified time, we had to wait in line to get in, along with the dozens of other families that bought their tickets ahead of time. The wait was about 15 minutes – not exorbitant, but still quite long for Kai. He was impatient, whining the whole time in line, which made the wait seem even longer for us.

But once we were inside, he was surprisingly good.

The place was tremendously crowded. Frankly, I felt overwhelmed with the crush of people. But, Kai did not get flustered.

He and my wife had been there before, but it was my first visit. I wouldn’t have been able to find anything on my own in that crowd, but they knew where to go.

I particularly enjoyed the Lego models of many famous Chicago buildings.

But Kai was most interested in seeing the 4-D movies. And though we had to wait in line twice to see each of the two movies, he was patient, at least by his standards. (The clock that counted down the time left until the next show started certainly helped Kai handle the wait – wish every place would have something like that!)

He ended up having a great time. He was a smiling kid throughout most of the time there.

And when it was time to leave, Mom bought him a new set, which he enjoyed making today.

It’s a nice way to close out the year.

Happy New Year, everybody!

Am I Prepared to Talk to My Son About Autism?

On our last visit to the library, a children’s book that was displayed on the shelf caught my eye: Nathan Blows Out the Hanukkah Candles.

Hmm, that’s an amusing title, I thought. In the past, Kai has wanted to blow out the Hanukkah candles so he would probably relate. And a quick look through the book showed that it had pictures that would help to keep Kai’s interest. As Hanukkah had just begun, it was very timely. And I thought perhaps that it would help Kai learn a little more about this holiday.

So, I checked the book out and brought it home to read with Kai. And, the other night, he picked it as our bedtime story.

As I began reading, I realized that the title character was a boy with autism. I had unwittingly chosen a book that might spur a discussion with my son about autism.

The story is told from the perspective of Jacob, the younger brother who is embarrassed by his older sibling with autism. Nathan repeats himself constantly and recites the 50 United States in alphabetical order. His mother reminds Jacob that Nathan’s brain is wired differently. But, Jacob is mortified when, in the presence of his new friend, Nathan blows out the Hanukkah candles during the menorah-lighting ceremony.

In the end, the boys’ parents deal with the situation in a patient, creative, and loving way that embraces Nathan and teaches acceptance.

It was a wonderful story.

But, I was uncomfortable reading it with Kai. We haven’t told him that he has autism. And I wasn’t sure that I was prepared to have that discussion now.

I was worried that the book would spur questions from him. Lately, he has frequently been asking me to explain what words mean. What would I say to him if he asked what ‘autism’ is? Would he know that he has autism? How would I explain that to him?

Well, for now, these are hypothetical questions. Kai did not ask any questions that night. I don’t know how much of the story he understood. I really don’t know if he noticed any resemblance between himself and Nathan. And, I was too chicken to question him about it.

So, I’ve got a little more time to think about it.

But, I know one day we will have this talk. And I’d better be prepared.

Have any of you had this talk with your kids? What did you say? How did they react? How old were they when you had the discussion? What advice do you have for other parents?

Kai’s Latest Obsession: Geography

We are now an iPad family, as it was one of Kai’s Christmas presents this year, generously given by his grandparents in Japan. Thank you, Jiji and Baba!

Kai loves it, and has been on it often the past few days.

We loaded some apps that are said to be helpful for teaching communication skills to kids with autism. But Kai has not been too interested in them and we haven’t pushed him to use those too much yet, though we plan to soon.

For now, his favorite apps are two that teach geography: Stack the States, and Stack the Countries.

As with anything that Kai gets into, he doesn’t just enjoy it, he develops an obsession about it.

Kai especially loves playing the country game, which he has been doing often. But I don’t mind because it really encourages him to learn geography.

Every time he wins a country on the game, he goes to his big world atlas (a present from another grandparent last birthday), and looks up the country to see what the flag looks like or to get some other information. Then he goes online to find out when the country won its independence so that he would know its “birthday.”

He’s getting to be quite the geography expert, now being able to answer some questions better than I am. And when I play with him, I am learning, too.

For instance, after learning that there was a country called Nauru, we went to Wikipedia to learn more about it. We discovered that it is a tiny island nation in the South Pacific, and is the second least-populated country in the world after Vatican City. For a time, its phosphate reserves gave it the highest per-capita income of any sovereign state. But then the phosphate ran out and its economy is now in shambles.

Okay, I’m sure that is more than you ever wanted to know about Nauru.

Hmm, perhaps I’m the one with the geography obsession.

One Dad’s Year in Review

As the year winds up, it seems like everyone is doing a Year in Review for 2011. Read this week’s column in the Patch to get my own thoughts on what stood out this year.

Click here for the whole story.

Holiday Recap

As anticipated, our weekend was eventful.

On Friday evening, we had our Hanukkah celebration. Kai was really revved up for it, perhaps a bit too much. He was very happy to see all of our guests. But he also had a hard time waiting to open his presents.

I recall that last year he was amazingly patient. This year, not so much.

From the time the first guests arrived, he was asking to open the presents. We explained that we would have dinner first, light the menorah, and he and his cousins would play their musical instruments. He did not like that plan, and whined quite a bit, but was happy when it was finally time to open presents.

Kai has gotten Ugly Dolls for Hanukkah, Christmas, and birthdays for a few years now, so it is something he looks forward to getting. During much of the year, he ignores his collection, but from a few weeks before the holiday, he starts going online and checking out what dolls he might get. He was expecting to receive some for Hanukkah, and was not disappointed.

He also wanted to get some Basher books, from the series of science books with cute illustrations that makes science more fun for kids. Kai already had the books on the Periodic Table and Biology, and added to his collection with The Human Body, and Algebra & Geometry.

There were other nice presents and it was a fun evening. We all had a nice time.

After our guests left, though, Kai’s mood turned angry. In the latter portion of the evening, Kai had gone off to watch a Pokémon video by himself while my wife and I played with Kai’s cousins. Whether it was the influence of the Pokémon video, jealousy because we gave his cousins attention instead of him, or just the after-effects of such a major social event, we are not sure. But he was angry the rest of the night until he fell asleep.

But all was better the next day. Well, with Kai. Mom was sick, though. Not good timing on that.

But in the evening, we were ready for Christmas. Kai put out three cookies for Santa, not just the one he originally saved.

The next morning, Kai awoke and checked out his stockings and the tree. There’s nothing like the excitement of the first look at the presents under the tree.

In the past couple of years, it took all morning for him to open his Christmas presents as he would start to play with some and not finishing opening all of them. This year, though, he mostly went through each one, opening them quickly.

I don’t know if it was because we did not have snow this year, and temperatures were in the 50s, but it somehow did not feel quite the same. Up until last Christmas, my son’s excitement for Christmas had increased every year. This year, he seemed just a touch less enthused than before. Had his Christmas glee peaked at age 6 and is already waning at age 7?

Still, we had a fun day. He got a lot of great gifts, especially from generous relatives, which we are very grateful.

And we took advantage of the warm weather for a walk at our local nature preserve. And we came back and played with many of the things he got.

Hard to believe that Christmas is already over. But the fun will carry over the rest of the week.

Happy Kid

I’m trying to get some work done and I can hear my son in the other room singing “I’m dreaming of a white Christmas.”

Kai has been in a great mood all week during this first week of winter break. I’m guessing that most of it is due to being off from school, the approach of Christmas, and our Hanukkah celebration that we will have tonight.

While some kids with autism struggle with holidays that disrupt the usual routine, Kai looks forward to seeing his relatives and getting presents (of course).

Aside from the yuletide joy, I am wondering how much impact his new medication is having on his mood. Risperidone is supposed to reduce aggression and anger, so the happiness we are seeing may, in part, be aided by the medication. Though being home from school, he hasn’t exactly faced many stressful situations so it is hard to judge. He has, however, been less resistant to doing the extra computer work (on math, reading, and thinking skills) that we had scheduled for him this week.

One benefit of the drug that we are sure of is that Kai is sleeping much better these days. He falls asleep very quickly and usually does not get up until we wake him up. After being awaken in the middle of the night for years, I am enjoying the good nights of sleep. This week, we have all slept in on several occasions, something I rarely did even in my single days. I think I’m making up for the years of lost sleep.

With our Hanukkah celebration this evening followed by Christmas this weekend, it will be a whirlwind of a few days.

And though it won’t be a White Christmas, I’m enjoying the sunshine – both coming in from my office window, and from my son’s upbeat disposition.

He Still Believes

As I wrote yesterday, we had fun making Christmas cookies. Afterward, we ate some. And they were really tasty.

Later in the day, my wife and son had more cookies. We didn’t make all that many so they were going fast.

Kai spoke up.

“Mom, we should save a cookie for Santa.”

Ha! My son still believes in Santa Claus.

I’ve never been one to push the whole Santa thing too hard. When I was a child, I never got a big kick out of visiting Santa.

And with Kai, we make sure he knows about all the presents he gets from relatives, even though he doesn’t see them until Christmas morning after “Santa” has come. So, I wouldn’t be surprised if Kai thinks Santa is merely an extension of the postal service.

But it is sweet to see that he still has the innocence of believing in Santa. He will turn eight in a couple of months so who knows how much longer he will have this childlike quality.

It makes me feel like watching Miracle on 34th Street again.

And I know that Santa will savor his Christmas cookie especially so this year.

Christmas Cookies

We made gluten-free Christmas cookies this morning. Kai diligently helped to decorate the cookies. Well, for awhile. Then he got bored and wanted to watch his kids’ Hanukkah video while my wife and I finished decorating.

Though he did resume interest when Mom brought out the colored sugar. Mmmm. I think he licked more than he put on the cookies. ☺

Nothing says happiness like green fingers and a big smile.

Celebrating Hanukkah, And Christmas, Too!

“We are one of THOSE types of families. Yes, we celebrate both Christmas and Hanukkah. Well, kinda, sorta… “

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

First Snow

We had our first snow over the weekend. It was just a light dusting, and what fell on our driveway melted quickly without the need to shovel it.

But seeing the white stuff made Kai excited at the prospect of going sledding.

We tried to temper his enthusiasm, as we weren’t sure there would be enough snow for sledding. But we went to check it out.

No one was at the hill. We could see bits of green grass mixed with the white snow.

But we climbed to the top, and when I gave Kai a push, he slid all the way down with ease.

The conditions were perfect, actually. There was just enough snow to slide down the hill, but not enough for other people to think of coming out. And it wasn’t so slippery as to make for the super-fast conditions that scare Kai.

Kai is usually not one of those kids who likes to sled for hours. So, after several runs he had enough. But later in the day, he wanted to come out again. And there was still just enough snow.

The first sledding of the season – it was a good start to winter break.

Ending the Year at School with a Good Week

Yesterday was the last day of school in 2011.

Kai started out the year with an amazing month, making it through January without a major incident at school. But it’s been rocky since then, with rarely a full week ever going by without an incident. Or, lately, even just a couple of days.

So it was nice that on this last week of school for the year, he had a pretty good week. His scores on his Point Sheet at school were consistently high, at least by his standards. And he had safe behaviors most of the time.

He earned Student of the Week honors.

Kai was in a great mood when he got home from school. Of course all kids love the start of winter break. But he also got an extra lift from the recognition.

Though he doesn’t exactly say so, we sometimes see signs that he feels discouraged when his classmates are doing well while he has struggled so much. So, it is nice that he was able to put together this good week and received a boost to his self esteem.

We’ve got a busy week coming up. And having our son home nearly full time for the next two weeks will be an adjustment, not just for him, but for us, too.

So it’s great to go into the break on such a positive note.

I’ve now got “It’s the most wonderful time of the year” ringing in my head.

Movie Nights Lead to Increased Vocabulary, Dagnabbit

Saturday evenings are Video Night at our house. Each week, we get a movie from our local public library and watch it together in our family room while eating pizza. Kai especially looks forward to it, but so do my wife and I.

In the past, Kai hasn’t always maintained his interest throughout the entire movie. Lately, though, he seems to hold his attention for longer. Perhaps it’s maturity. Perhaps the recent movie selections are more to his liking.

Some of the ones he’s enjoyed lately include many of the Disney movies including classics like Alice in Wonderland, and more recent films like The Hunchback of Notre Dame, Hercules, Pocahontas, and Tarzan. And this week we got the Dreamworks film Madagascar.

Because English is not my wife’s native language, we always setup the movie with English subtitles. It helps my wife catch some of the words she may otherwise miss.

Lately, we are finding that watching with subtitles is helping our son increase his vocabulary as well.

Kai will grab the remote, pause the video, and ask what a particular word means. “Dad, what does ‘ignite’ mean?”

Usually the words that interest him the most are the ones used in particularly funny scenes. This week, he inquired about Bisquick, Butterball, and dagnabbit, among others.

Sometimes I am challenged to explain the definition in a way that is easy for him to understand.

But I love that he is so motivated to learn. I don’t think he would easily sit through a vocabulary class, so it’s great that we unintentionally found a way to teach him new words.

Plus, he probably won’t be taught some of these words through school, so this way he is introduced to words and phrases that people use.

Now we just have to make sure that he only uses words that appropriate, dagnabbit.

Atypical Toys for an Atypical Child

“With Hanukkah and Christmas soon upon us, it brings to mind that my son’s atypical interest in toys can make choosing a gift for him quite a challenge… too often we steer (relatives) toward something that we think he should play with instead of something that he actually would play with.”

Read this week’s column in the Patch for the whole story. Then add your own ideas on what to get a child who doesn’t play with the usual toys. Click here!

Winter Weekend

With Christmas and Hanukkah now less than two weeks away, and the coldest weather of the season arriving, it really feels like the holiday season. This weekend, we took advantage.

On Friday night, Kai and I visited our town’s holiday festival that featured fabulous ice sculptures…
live reindeer…

and holiday lights.

Then, yesterday, we went skating as a family.

Kai has been doing really well at his skating class so my wife bought us all skates so that we could skate together. After our first family bike ride, we were looking forward to our first family skate since Kai learned to skate.

We wanted to skate outside, but our local park district has not created the outdoor rinks yet. But my wife remembered that they had build one next to Wrigley Field. So we drove into the city.

I’m not sure if it was the new skates or the unfamiliar environment, but Kai did not skate like he does during his Saturday morning classes. He barely moved along and said he wanted to go home. I wasn’t about to give up so easily.

I grabbed his hand and dragged him along. I haven’t skated much since I was a kid so my own skating is labored. My feet ached. But we moved along. Sometimes my wife would grab Kai’s other hand and we would pull him along together, and later she skated with Kai so that I could snap pictures.

After a break while the ice was Zamboni-ed, we went out for a few more laps. Kai finally started to skate more. He didn’t skate as well as he usually does. But at least he moved on his own a little bit.

It wasn’t a smashing success. But Kai didn’t quit. And it was time spent together on a sunny day.

I’ll take it.

No Harmony During School Concert

We went to the holiday concert at our son’s school yesterday. Before it was to begin, we saw everyone in his class walk by as they went to the waiting area. Kai seemed in good spirits.

The concert began and other kids came out to perform their numbers. Kai and the majority of the children apparently were to remain in back until it was their turn.

As the kids performed some long numbers, my wife and I wondered how Kai was doing while he was waiting. He often doesn’t do well with waiting.

Finally, it was his group’s turn. But, he didn’t come out with them. It was a sure sign that something was wrong.

Then we saw one of the staff rush by, carrying a large blue pillow back to the area where Kai was. The pillow serves as a security blanket for Kai, and the staff frequently uses it to help him calm down after an incident.

We watched the entire concert, wondering if Kai still might come out. But he never did. When the concert was over, we went to find out what happened to him.

We found him sitting in the ‘quiet room’ on his large blue pillow. Though he was now calm, it was very evident that he must have created quite a ruckus.

His face was red. He still had tears in his eyes. And he was shirtless, having completely tattered the one he was wearing.

His school therapist explained that Kai wanted to go first when the kids were lining up. He couldn’t accept that he would have to wait his turn.

My wife was volunteering at the book fair they were having, so I sat with Kai. We hear about his incidents at school all the time, but actually seeing him like this was tough.

I rubbed his back and comforted him, while also talking to him about how hard it is to wait, but that it is something he needs to learn how to do.

When he was finally ready to go home, he didn’t want to wear the spare shirt the staff member brought over to replace the one he destroyed. In the car, he didn’t want to listen to music.

When we got home he went up to his room and cuddled up with his favorite blanket. I quietly spoke with him some more about waiting his turn. He said that he wanted the concert to start over again. I explained that it doesn’t work that way. Sometimes you don’t get to re-do things.

Eventually he settled down.

Special events like a holiday concert are memorable. But in this case, I’ll remember that image of him sitting shirtless on his blue pillow far longer than I would have remembered him singing holiday songs.

Medication Update: Success or More of the Same?

We have had our son on medication for several months now with little success.

We’ve seen terrible side effects including ticks, lethargy, and the loss of our son’s exuberant personality. And while the side effects disappeared after adjusting medicines and dosages, we did not see any lasting improvements in our son. If anything, Kai’s behavior worsened, with an increase in outbursts and major incidents.

In the days before we left for our Thanksgiving trip, as we saw his anger continue to escalate, we decided to go in a different direction.

We spoke with our son’s psychiatrist. He had had Kai on various anti-anxiety and ADHD meds since we started the process last summer. A few weeks ago, the doctor had mentioned that if continued to see unsatisfactory results, there was a different type of drug that we could try – an antipsychotic.

Risperidone is used for treatment of schizophrenia and bipolar disorder, and is also the only drug approved by the FDA for the treatment of aggression in children and adolescents with autism.

I had been reluctant to go this route, and wanted to only after we had exhausted other alternatives.

I finally felt that time had come.

We weaned Kai off the other medicines and started him on Risperidone just before Thanksgiving. Last week was his first week of school on the medication.

He started off having a great week.

On Monday, a day when many kids at his school had a tough time adjusting to being back after the holiday, Kai had a very good day. The staff reported that Kai had no trouble getting back into the school routine and performed well all day.

He followed that up the next day with a 100% on his point sheet, which is amazing considering his recent history of major incidents every day.

He had another good day on Wednesday. And on Thursday, he handled the potentially disruptive field trip without issues.

Not only did Kai do well in school, he was much happier overall, too.

So, about that time, we were feeling optimistic that perhaps we had finally found the right medication for our son.

On Friday, though, his streak of good days ended. He had a couple of major incidents at school. We were hoping that it was just a bad day.

But, this week his streak of bad days at school is continuing, including an especially bad day yesterday.

So, now we are back to square one.

We will give this latest medication more time. But it is looking again like the medication route may not provide the benefits we were hoping for.

Time will tell.

Bike Riding Season Just Beginning

For most, bicycle-riding season ended a couple months ago. For us, it has just begun.

This week’s column updates Patch readers on our attempts to teach Kai how to ride a bicycle, and our long dormant dream of going for a family bike ride.

Click here to read the whole story.

Our Christmas Tree

When I was a kid, we usually didn’t get our tree until just a few days before Christmas.

My dad enjoyed bargaining with the tree sellers, and he knew that the closer it was to Christmas, the more likely they would lower their price rather than be stuck with an unsold tree.

I remember feeling a bit sorry for the poor guys who were out in the cold all day as my dad got them to accept a lower price than they really wanted. The look on their faces was never happy even as my dad wished them a Merry Christmas.

But once we got the tree home, all that was forgotten. Putting up and decorating the tree is among my favorite childhood memories. It meant that Christmas, the greatest day of the year, would soon be here.

Now, with my own family, it is fun to relive the joy of decorating the tree. And we don’t make Kai wait until the last few days before Christmas to do it.

Still, we had not planned to get one this early. Last year, we got our tree on the second weekend in December. But Kai was excited after seeing all the Christmas trees on his field trip and said he wanted to go get one. And rather than make my son wait, we all happily went out on Friday afternoon to pick one out.

This year’s tree is a Balsam Fir. It looks bigger in our house than we thought it would.

Each year, Kai does more of the decorating. This year, he took all the ornaments out of the boxes and played with them until it was time to put them up. He then screwed in most of the lights and helped put the ornaments on the tree, even climbing the ladder to get to the higher places.

It was great to get the tree decorated.

Though once it was up, Kai’s thoughts turned to presents. He started talking endlessly about getting more Ugly Dolls, as they have been given regularly on recent birthdays, Christmases, and Hanukkahs.

I suppose it is natural for kids to have their wish list for the holidays. But as he talked more and more, he worked himself into a frenzy, saying that he wanted the Ugly Dolls now instead of waiting, and that he wanted ten instead of just one. Of course, we tried to teach him about patience and greed. Hopefully, he got our message. Or, it will be a long month.

But I like the smell of a real tree in our house. Nothing can put a damper on the holiday spirit when there’s a Christmas tree in your house.

Field Trip

It was field trip day at my son’s school yesterday. These days are always a bit nerve-wracking, as any change from the usual schedule can potentially affect Kai negatively.

Field trips have been hit or miss with Kai as he has surprised staff with perfect behavior on some trips, while others haven’t gone as well. One time he couldn’t even go on the trip because he had an incident at school before they were to leave, and school rules forbid students from going once they have been unsafe.

This trip included a relatively long drive into the city to go to the Museum of Science and Industry to see two special exhibits: one on holiday lights that includes Christmas around the world, and the other on Dr. Seuss.

We packed a couple of games in his backpack to keep him occupied on the school bus, and hoped he would be okay.

It turns out that Kai did well.

His point sheet from school indicated that he behaved well and stayed safe.

As usual, it was difficult to get much information out of him. But he did say that he enjoyed seeing all the Christmas trees, and now wants us to get our tree and put it up this weekend.

He also said that he played the games we packed with the student sitting next to him on the bus, a somewhat rare social interaction.

When we asked him how the Dr. Seuss exhibit was, he said he did not want to see it and sat on the bus during that time. We know that this museum, which is very large, can be overwhelming for Kai. So it is not surprising that he would have had enough with just the one exhibit and want to leave.

The point sheet indicated that he was safe, so we are hoping that he handled the situation by expressing his desire to sit on the bus with appropriate words, and not with anger. We are fortunate that the staff at his therapeutic school knows how to deal with such situations, and their flexibility and skill likely kept it from escalating.

Most of November was rough in terms of incidents at school. It’s nice to get off to a good start here in December.

Jelly-Bean Art, Music, and My Karaoke-Singing Son

Today, for the first time, I present my son on video. But first, the back story.

Yesterday I wrote about being a ‘Favorite Uncle’ of my nephews.

When they were younger, I introduced them to a number of different things, but these days they are usually the ones teaching me about new things. When it comes to current pop culture, and popular music especially, I’m too busy to keep up with it like I used to.

And so, on our Thanksgiving visit, I was surprised that I knew of a popular music video that they had not yet heard of. The video is currently a bit of a viral hit, which makes it even more surprising that they did not hear of it before me. It must be all that studying they’re doing at college. Yeah, that’s it. Studying.

Anyway, what was more amazing was that they actually liked it just as much as I did.

The song, In Your Arms, is by a young singer named Kina Grannis. What makes the video particularly special is that it incorporates jelly-bean art using stop-motion photography and 288,000 jelly beans. Take a look:



According to the ‘Making Of’ video, Kina did not green-screen any of her frames, which means that she is the most patient person in the world.

When Kai saw the video, he loved it as much as the rest of us. He wanted to listen to it again and again after we got home from our Thanksgiving trip. In addition to just watching, though, he wants to recreate the whole thing. Kai got his bag of 30 Flavors Jelly Belly jelly beans and asked me to make the video. I explained that I did not have the time, skill, or patience to create something like this. Or, 288,000 jelly beans for that matter.

I don’t think he’s given up on the idea, though. This morning, he watched the video again, pausing it every time the scene changed, and tried to figure out which flavors were used in each frame. For instance, for one of the early scenes, he’s written down Orange Sherbet, Pina Colada, Green Apple, and Coconut.

We won’t be creating a stop-motion video with jelly beans, but I did take a video of him singing along as he watched a version that shows the lyrics. His personality really shines when he is happy, and there’s nothing like peppy music and jelly beans to bring out the best in him.

The Role of a Favorite Uncle

I have had ‘Favorite Uncle’ status ever since my nephews were toddlers. And now my brother-in-law fills that role with my son. Read this week’s column in the Patch for the whole story.

Click here!

Thanksgiving Weekend

We drove out east to spend Thanksgiving at my sister’s place. Even though it takes a day and a half, we prefer driving to flying as we can take a lot more of our son’s stuff with us (including his bicycle this time), as well as avoid the hassles at airports.

In addition, Kai also looks forward to going to the swimming pool at the motels we stay at going and coming back so it works out as a mini vacation while also saving a bit of money versus flying.

Kai usually does well on the long car rides as long as we don’t hit bad traffic. This time, though, he got upset when he fell asleep and missed us crossing into Pennsylvania. Usually, he doesn’t seem to care much about the state lines. And so I didn’t wake him. But after he woke up, he was furious when I told him that we were already in Pennsylvania.

He persisted in yelling, “Turn around! U-turn! U-turn!” for a good half hour, saying he wanted to go back to see the Pennsylvania Welcomes You sign.

Once we arrived at my sister’s place, our visit went well for the most part. Kai enjoys playing with his cousins and uncle and aunt. And more and more he has overcome his fear of their dog and this time played with Emi more than ever. This is a picture of him chasing her around the yard, each running with a stick in their mouths.

The weather was great so we went to a playground every day. The first day, Kai wanted to ride his bike there. I was a little reluctant as the road there has a bit of a hill and Kai is still rather new to riding. But he did fine on the hills.

Curbs, however, were an unexpected problem. While crossing a street, he missed the ramp up to the sidewalk and rode right into the curb. He tumbled head over heels off the bike, but wasn’t seriously hurt. He was angry, though, yelling “Stupid bike!” over and over. But I eventually got him to ride bike back to the house.

The next day, he rode into a signpost and again tumbled off his bike. He got back on but we didn’t go for another ride after that. He needs more practice in open areas.

We played darts, and Wii, and games. We went miniature golfing. Kai covered himself with mud in the backyard. He couldn’t have had a better time than that.

But the highlight of Thanksgiving is always more than just the activities. I loved being able to enjoy time with my sister, brother-in-law and nephews. And I also loved that they all are getting to know Kai better each time we get together.

Family getting together – that is the Thanksgiving highlight for me.

Check back tomorrow to read about Kai’s bond with his Uncle Frankie.

Things I Am Thankful For

Today, I present my list of the Top 5 Things I Am Thankful For on this Thanksgiving. The list includes Kim Kardashian and the Chicago Cubs, among other things.

You’ll have to click here to find out why.

Jekyll/Hyde

Of course we love our son. Of course.

But, these days, there are more and more times when it is difficult to like him. Or, perhaps I should say that he is doing more and more things that we do not like to see.

I’ve written about Kai’s increased incidents at school. But, things are more challenging at home, too.

And what bothers us the most is Kai’s anger. When he is angry, he becomes a different person.

Gone is the sweet boy who is affectionate. Gone is the wonderful smile. Gone is the jovial laughter.

In its place is rage.

And, these days, all too often, the rage is accompanied by mean words directed at my wife or me.

“You idiot!”

I’ve heard that often lately. And I have to admit that I do not take it well when those types of words are directed at me. I take it personally. I get angry in return.

And that can escalate the situation.

So my wife tries to step in to calm both of us.

But it is frustrating when nothing seems to help the situation. We try to give him more appropriate words to say. We tell him that he can say, “I don’t want to do this.” Or, “I’m upset.” But, his go-to words continue to be personal attacks.

We also give him consequences. He has to take a timeout. He loses a preferred activity.

But he doesn’t seem to care about the consequences.

Lately, things seem to be getting worse. Last night, he called my wife the B-word.

As you might imagine, she was really upset. It is not something you want to hear from your seven-year old son.

She strenuously told him how awful that was. She told him how he broke her heart.

He apologized.

But, I expect that the next time he gets angry, his rage and mean words will emerge again.

What is making him so quick to anger? What makes him like this when he is angry? He has autism. But not all kids with autism are like this.

I told my wife that we have to continue to work on this. That it won’t be easy and it will take time for things to get better.

But knowing that does not make it all that much easier to deal with. It is draining. Very draining.

Seesaw

On Monday, my son had three major incidents at school.

On Tuesday, he earned 100% on his point sheet, meaning that his behavior was outstanding.

Yesterday, he had two major incidents.

What will today bring? Who knows?

The ups and downs are frustrating because we do not have a good idea why it is happening.

On Tuesday, his good day, there were some changes from the usual routine that could have set Kai off. But, it didn’t. He was flexible. He handled it well.

But then yesterday he could not hold it together.

And we don’t know why.

Up. Down. Up. Down.

Good thing I like seesaws.

S-O-S Best of the Best, Edition 12: Medications and Their Use with Special Needs Kids

This month’s S-O-S Best of the Best (BoB) is about the use of medications, with bloggers sharing their positive and negative experiences.

As we have been trying medication for our son without great success, we are very interested in reading about others’ experiences. Thanks to Danette Schott for another great collection of posts.

Click here and go check it out!

Insurance Coverage Denied

“Anyone who has tried to talk with my son could easily see that Kai needs speech therapy. Yet his health insurer has now deemed that it is not necessary.” - From today’s column in the Patch.

Click here to read the whole outrageous story. You will not want to miss it.

Dad and Son Weekend

My wife was sick this weekend so it was just me and Kai hanging out for the most part.

Saturdays are always a busy day with a bunch of Kai’s activities. This week was the last soccer game of the season. It is a sure sign that winter is about to arrive here in the Midwest when the last game ends as the sun is setting, the parents are shivering, and the trophies are handed out.

On Sunday morning, Kai and I went to a park where he rode his bicycle and played in the playground. This playground has some equipment beyond the usual slides and swings. Kai’s favorite was this thing that starts spinning as soon as you sit on it.

It always amazed me how much Kai can spin without, apparently, feeling dizzy. I tried to sit on one but after about three spins I had to get off. Kai kept going and going for several minutes, and even asked me to spin him faster. Though, when he finally got off, he, unusually, said that he was dizzy as he lied on the ground for a little while.

In the afternoon, he and I went for a bike ride together. It is so nice to see him continuing to want to ride. What a change from the past when he screamed if we even mentioned the thought.

Later, he even wanted to go riding again. But by then it was getting dark. After insisting for a while that he still wanted to ride, he finally relented to my idea of walking over to the park instead. I put a headband light on him and we were set.

There is something about going down the slide in the dark that makes it more exciting.

And there is something about alone time between father and son that builds special bonds.

Medication Is No Panacea

The decision to put our son on medication was one of the hardest we have faced since our son was diagnosed with autism more than five years ago.

We have pursued biomedical treatment for Kai through DAN! (Defeat Autism Now!) doctors. He’s had intensive therapy for years. And he has made a lot of progress.

But Kai still has a number of challenges.

He has trouble staying on task at school. He has difficulty following directions. And, although he has made dramatic improvements over the years, he still gets angry and upset far too often, and that leads to unsafe incidents.

His teachers and therapists have noted that he often seems anxious. They’ve said that he seems to have attention deficits.

Earlier this year, we had a psychologist conduct a formal neuropsychological examination. One of her recommendations was that we consider medication.

And so we did.

We were referred to a pediatric psychiatrist. He scoffed at the biomedical treatment we had been doing, and even used the word “quack” to describe it.

So you might think that we would have quicker and better results with the “regular” medication than with the “quack” approaches we had been doing.

And yet, we have found that when it comes to this area, medical practice is as much of an art as a science.

Over the past several months, the doctor has tried two different anti-anxiety meds and two different drugs for ADHD. He’s adjusted the dosage levels several times.

The initial effect of the drugs was to bring on a number of side effects.

One medicine made our son so lethargic that he lost his personality for a while. He even fell asleep at school a few times, which is very unusual for him.

One of his ADHD drugs brought on severe ticks. We found out that there are two types of ADHD meds, those that are stimulative and ones that are not. The stimulative ones can exacerbate ticks. So, we switched to a non-stimulative drug that seems to have added to our son’s lethargy.

We heard from other parents that these things take time. We were encouraged to persevere, that over time a good psychiatrist will find the right combination of drugs and dosage for our child. These other parents told us they were ready to quit the medication, but after many months, their child became better, and they were glad to have continued.

In our case, we considered it progress when the side effects went down. Our son isn’t as lethargic anymore. His ticks dissipated (though now are returning).

But it is hard to say how much benefit we are seeing.

Kai had a pretty good month at school in October. We were encouraged that perhaps we had finally found the right mix of drugs for him.

But in November, his behavior issues at school have returned to their previous high levels.

We will continue with the medication for a little longer. Hopefully we will see more positive results.

But there is no sure-fire treatment for our son’s issues. There is no panacea.


I did not mention the specific medication that our son has been on because our experience indicates that what works for one child may not work with another. And so, there is little point to divulging that information here.

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This post is part of this month’s S-O-S Best of the Best Series: Medications and Their Use with Special Needs Kids. Best of the Best is a collection of bloggers who come together on the 15th of each month to write on one topic pertaining to “invisible” special needs. Starting November 15, check out this month’s edition by clicking here.

Finding Brightness in a Disruptive Event

We had been gone from the house for less than half an hour. But when we returned, we discovered that someone had broken in.

In that moment, the joy of our first-ever family bike ride was temporarily forgotten.

I called 911. They told us to get out of the house.

The three of us went to the front yard and waited for the police. My wife and I explained to Kai what was going on.

He wasn’t afraid. He seemed a little excited, actually, but not overly so.

And when the first police officer arrived, he greeted her and asked her name.

We had to wait outside for quite awhile while the police went through our house. Neighbors came out to ask us what was happening.

Kai was remarkably patient. He didn’t whine or complain. He didn’t need a lot of attention as my wife and I spoke with the police and chatted with the neighbors.

After sitting outside for more than half an hour, he said he was cold so he and my wife went to a neighbor’s house. And there, he waited patiently some more, even without toys to keep him occupied.

When we were finally allowed back into our house, we had to avoid certain rooms so that the police could do their investigation. Kai played nicely in the limited space, often by himself while my wife and I spoke more with the officers.

And later, when he saw an officer dusting for fingerprints, he was curious and wanted to know what she was doing. He was captivated as she kindly explained and then demonstrated with Kai’s own fingers.

As the officer was leaving, he talked to her some more, asking her if she now knew who broke in.

In the face of such a disruptive event, our son, who usually does not like any change from the regular schedule, was engaged, calm, and happy.

And that is more than we could say for ourselves.

My wife and I did not sleep well that night. But, unusually, Kai did.

We are grateful that we are all safe, and that Kai seems unfazed.

Events like these help to put things in perspective.

And so, we will cherish all that is good in our life just a little bit more. Like the smile on our young son’s face, which seems even brighter today.

When a Dad Speaks, Does His Son Ever Hear Him?

This week’s column in the Patch may be familiar to regular readers of the blog. It recalls all the times my son wanted to quit his various activities, and my seemingly fruitless attempts to get him to persevere.

Click here to read the whole story.

The Dream of a Family Bike Ride

It has been my wife’s dream that one day the three of us would ride bicycles together. Our son’s inability to ride a bike had delayed that dream, and made it a seemingly impossible one.

My own efforts to teach Kai how to ride a bike had been unsuccessful, and at times, very frustrating. This past summer, we enrolled him in a bicycle class for kids with special needs. He made a little progress, but was still unable to ride on his own without training wheels. He was afraid to ride, and did not enjoy it.

One day my wife made mention of Kai’s bicycle challenges to his swim instructor. James was the one who taught Kai how to swim after we saw little progress with other instructors. And he said that he could teach Kai how to ride a bicycle, too.

So, for the past two plus months, James has worked with Kai on bike riding.

He used Kai’s love of numbers to give him the five rules of riding:

1. Look ahead.
2. Keep your arms straight.
3. Go fast.
4. Keep your hands on the handlebar.
5. Keep your feet on the pedals

At first, James ran alongside and held on to a bar attached to Kai’s bike to keep him from falling over as they did laps around a block that had wide, sparsely used sidewalks.

It was a wonderful moment a few weeks ago, when I first saw James running behind Kai’s bike, not hanging on. Kai was able to ride on his own on straight areas, and somewhat on turns, though James said that Kai still needed help to start and stop.

Since then, he’s made further improvements. Even better, Kai seems to enjoy riding and doesn’t protest having to as he once did.

So, yesterday, for the first time, my wife and I decided that we would try riding bikes with Kai.

From our house, we walked our bikes over to a nearby path. To get started on the bike, Kai still needs a little help to get going. So, I kept him balanced and gave him a little push. And then he was off.

My wife went next while I grabbed my bike, got on, and caught up to them.

Kai was riding. He was really riding. And we were riding with him.

We rode a couple of miles to the end of the path. After a short break, we turned around and rode home. It was less than half an hour in all. But it was the highlight of our weekend.

Knowing that our son can ride a bike, and enjoy it, means we can go riding as a family in many different places.

Our dream has come true.

And though this is a relatively small one, its achievement gives us hope that the big dreams – of our son going to college, of being able to get a job, and living independently – may also be attainable one day, too.


Coming Wednesday: Why we had to call 911 after we got home from our ride

Surprised by What is on My Son’s Mind

My son’s therapeutic school has what they call a Community Meeting each Friday afternoon. Students from every class gather together, hearing from the director and celebrating the accomplishments of students.

On the first Friday of each month, the staff announces which students went through the entire previous month without a major incident. Those students are honored with a special breakfast the following week.

Kai has been so honored exactly once, nine months ago. Since then, it has been rare for him to go even one week without an incident, let alone an entire month. I had forgotten that they announce these students at the community meetings.

I was reminded only because Kai talked about it this morning.

And that was a surprise. I’m surprised anytime he says anything about school, as he hardly ever does. These days, about the only thing he ever talks about is Pokémon.

I’m taking it as a positive sign that he is looking forward to finding out which of his peers are being honored this month. It is good to know that he cares. Maybe it is an indication that he will be motivated to achieve that again.

But, it won’t happen in November. After only two and a half school days, he’s already had three majors.

So much for November. Can we just skip ahead to December?

Another Party, Yet More Anger

My son was invited to a Halloween party this past weekend. After our recent experience at a birthday party where Kai kept shouting that it was a “stupid party,” I was a bit tense about this party.

This time things went better. We almost made it to the end.

Before we went, I spoke with Kai about not saying things like “stupid party.” He could say he wants to leave, or take a break, but not use mean words.

When we arrived, kids were playing on a big trampoline in the backyard. Kai joined right in. It was quite a sight seeing Kai in his Toad costume with the big mushroom hat bouncing up and down alongside the others.

After that, the party moved inside. The kids were free to choose from a variety of games and activities available, but not required to participate in anything in particular. Kai mostly just watched some of the other kids play Wii.

Later, when the host dad introduced Silly String, the crowd went outside again. All the kids, including Kai, loved chasing each other around, spraying the string. But a can of string doesn’t last very long, and then there is a temporary letdown.

But many of the kids, including Kai, went back on the trampoline and all was fine again.

And that is when our problems started.

For some reason, Kai kept pestering a girl who was also jumping on the trampoline. He got close to her and pushed her. I couldn’t tell if he liked the girl and that was his way of showing it, or if he was annoyed at her. It is possible that she might have accidentally bumped him.

Regardless, she didn’t like Kai pushing her. And so I told him to stop.

He would stay away from her for awhile, but then it would happen again. And so I told him to get off the trampoline.

Shortly thereafter, they brought out more Silly String that they had run out to the store to get. And when that additional Silly String was running out, they decided not to give out the last can or two since there wouldn’t be enough to go around for everyone. And that got Kai really mad.

He stomped around and said mean words to the older brother who was putting away the last can of the Silly String.

I tried to divert Kai onto other activities. I tried to distract him with some of the many Halloween treats they had. But he kept trying to go back to the boy and saying mean words to him.

The mom was very understanding. She offered to let us use another room of the house to try to get Kai to calm down. And so I appreciated her understanding.

But there was no calming Kai down.

And so, we again left a party early.

Still, it was an improvement. Still, there’s more work to be done.

Halloween Regrets

Another Halloween has come and gone, and I kind of feel like Charlie Brown did after he collected a bagful of rocks.

The whole feel of Halloween was different this year right from the start. For one thing, Kai wasn’t as enthused about the prospect of going trick-or-treating as he had been the year before. Did we already pass the peak of Halloween excitement at age seven?

His costume this year was Toad, one of the Super Mario characters for those of you who are not familiar. Kai plays only one Super Mario game, Mario Party for the Wii. But whenever he plays, he chooses the character of Toad.

Once we started out trick-or-treating, we discovered that Halloween falling on a Monday this year made things very different from the Sunday Halloween of last year. What, doesn’t everybody stay home from work so they can be around at 3:30 in the afternoon just to hand out candy? Apparently not. I think by the time Kai got to a house that actually had someone home, he was already getting tired of the whole thing.

Still, we did find a few houses to stop at. And, what happened was always the same.

Kai would go up to the door and ring the bell. If someone came out, more often than not Kai would not say “trick or treat.” Instead, as if mesmerized by the big bowl of candy staring him in the face, he’d look at it for an uncomfortably long time. Sometimes, he would even rummage through the bowl to see if there was anything at the bottom that he preferred. Eventually, he would pick something out and then turn and leave without saying “thank you.”

Last year, one man got annoyed at how long it took Kai to pick out a piece of candy and made a comment that indicated that he was insulted that this kid didn’t think any of his candy was good enough. I didn’t get into the whole ‘he has autism’ explanation, instead just saying that he likes to look at everything.

But, since then, I’ve tried to get Kai to hurry up and make his choice more quickly.

And that gets him mad.

He also didn’t like it when I told him to take only one piece of candy unless the homeowner tells him he can have more. He kept asking people how many pieces he could have until I threatened to take away his candy if he kept doing that.

Between all that, as well as all the haranguing for him to say “trick or treat” and “thank you,” I don’t think he had as much fun trick-or-treating this year.

My wife told me later that many of the kids who came to our house also did not say “trick or treat” or “thank you,” and many grabbed several pieces of candy. As far as we could tell, these kids did not have autism. I harrumphed that it still didn’t excuse our son from those things.

But, upon reflection, I wonder if I may have been too harsh on Kai.

Halloween is supposed to be fun, and I’m afraid that my good intentions to teach Kai proper manners may have taken some of the fun out of the day for him. It is not always easy to finesse the line between trying to teach a child, and accepting their challenges and letting them enjoy the moment. In Kai's case, remembering to say "trick or treat" and "thank you" while picking out a piece of candy was probably very difficult for him. And so, I should have just gone up to the houses with him and said it for him instead of reminding him from the end of the driveway.

After circling the block, we went home. Kai didn’t go back out for a second run as we did last year. I think he had had enough.

My wife partially saved the day, however. She made brain and eyeball cupcakes that Kai loved.

And then Kai enjoyed breaking open the pumpkin piñata.

So the day wasn’t all a bag of rocks.

My father-in-law from Japan didn’t have much to say about the whole custom of going door to door demanding candy. But he did enjoy seeing Kai in his costume.

Kai made a very good Toad. Don't you agree?

Check out our Facebook page for more pictures.

Love Overcomes Language Barrier

My father-in-law is flying home to Japan today.

He did a lot while he was here. He completed a long list of things to fix around the house, gave painting lessons to my wife, and put up a mini-gallery of his own work.

He also spent a lot of time with Kai. He went to Kai’s swim lessons and karate class, his soccer games and skating class. He even experienced trick-or-treating for the first time.

He saw good moments and bad.

He said that he leaves feeling good about all he saw of Kai, and will have peace of mind thinking of his grandson when he is back in Japan. He will be better able to picture everything Kai is doing when he reads about his activities on this blog.

Kai is also better off for the time he spent with his grandfather, though he may not understand it now. Dignity and grace are not taught by words as much as they are through the actions of others. And in time, this may be what Kai will take away most from his time with his grandfather.

It is sometimes hard to tell if Kai misses someone after they leave. He doesn’t show those types of emotions very often. But I am sure that Kai knows that his grandfather loves him very much. And whether he shows it or not, he will miss having Jiji around.

As we all will.

Thank you for visiting, Jiji. Come again soon!


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To read more about Jiji’s visit, please read this week’s column in the Patch.

Playdate? Party? Golf!

Every week, my son has a homework assignment where he has to write about one fun thing that he did over the weekend. Kai does not like to write, so he does not enjoy this assignment at all. It usually takes a lot of “encouragement” to get him to complete it.

But for us, it is always interesting to see what he eventually chooses to write about. Oftentimes the activity he picks differs from what we would have chosen for him.

This weekend, he could have written about playing with his young cousins who came over for dinner last night. We don’t see them all that often so it was a bit of a special occasion. Kai usually looks forward to seeing them, but this time he didn’t seem all that interested in playing with them when they first arrived. I had to facilitate, and Kai finally chose to play with marbles.

His two cousins took to the activity right away and were very creative with their marble runs. Kai mostly did his own thing – counting the marbles, looking at the numbers printed on the bottom of the marble-run pieces, throwing the marbles – but I was somewhat satisfied that he at least played in their vicinity and, at times, interacted with them.

After dinner, while the adults lingered at the table and chatted, the kids went downstairs and played some more. I wondered how Kai was doing without my presence. A little while later, his 10-year old cousin came up and asked me to come downstairs to supervise. Though she did not say so, I think Kai was disrupting them.

So, this wasn’t the most successful playdate. But it was still nice to have his cousins and aunt and uncle over. I considered it the highlight of the weekend.

But Kai did not write about that.

He also could have written about the Halloween party he went to yesterday afternoon. I may write more about that later in the week if I have time. He doesn’t go to parties every weekend so it was another somewhat special thing he could have written about.

But he did not.

He wrote about playing miniature golf.

He, my wife, and my father-in-law went to an indoor mini-golf place where you play in a dimly lit area with glow-in-the-dark balls and clubs. The black lights give my wife headaches, but Kai loves going there.

We’ve been to other, more creative mini-golf courses that don’t induce headaches, but Kai prefers this place. I think it is because he can play 36 holes instead of just 18.

As with most things that involve numbers, the activity itself is not his primary interest. Rather, he loves going from hole to hole and checking out all the numbers.

On his homework assignment, he took much longer than necessary, as he had to draw a layout of the course before writing about it.

As parents, I think most of us have ideas on what things stand out. But our kids have their own ideas.

In my son’s case, on this weekend, nothing was better than 36 holes of glow-in-the-dark golf.

Book Review and Kind Thoughts

My blogging compadre, Shiroi Tora, has written a wonderful review of Wit and Wisdom from the Parents of Special Needs Kids, the book in which my original essay appears. His comments about the book are spot on, and his remarks about me are extremely generous. I am humbled by his comments, and thank him for taking the time to read the book and write about it.

Just as he mentions that the book is like having a “heart to heart… soul to soul” with each parent, so, too is his own blog, 2E Child (Twice Exceptional – Autistic / Profoundly Gifted).

He writes about his soon-to-be 11-year-old son Alex, and the path to enrichment and excellence that he and his wife are traveling with him. Alex is an amazing boy, and his accomplishments provide hope that my son can find fulfillment in life as well.

But, even more than reading the inspiring achievements of Alex, what draws me to his blog is the almost Zen-like way that Shiroi Tora imparts his knowledge and experience. His blog is my daily dose of wisdom, a reminder to think about what is right and what is wrong, and to persevere no matter what.

When I first started blogging, it was primarily as a cathartic vehicle for putting my own thoughts down. Finding inspiration and friendship from other bloggers has been an unexpected, and far greater reward.

Driving Us Crazy!

My son has been obsessed with Pokémon for a few months now and he is driving us crazy.

It is not because we are opposed to Pokémon itself. A lot of kids are interested in Pokémon. In fact, we would be happy if he actually played the Pokémon game as it might help him socialize with other kids. But, after taking a small interest in learning the game when his obsession first started, Kai now has no interest in playing it at all.

He doesn’t even have much interest in looking at the cards he has or collecting more.

No, what he is interested in is going online to read about all the various Pokémon characters on the online database called a Pokédex.

Even there, it wouldn’t be all that bad if he would go online and read by himself.

But no.

Apparently, this Pokédex is divided into many different categories, with information on every different Pokémon set, and every Pokémon character. And rather than deciding what to look up in the Pokédex himself, Kai is constantly asking me or my wife to pick a path for him.

The questions are endless.

Do you prefer old or new? Do you like Call of the Legends or Undaunted? Do you want odd or even? What is your favorite energy? Pick a number between 1 and 75.

If he were to ask us once, we could tolerate it. We’d even welcome the interaction. But, it is not just once. When he gets to one character, he starts the questioning all over again.

It is endless.

And when you don’t answer his questions, when you tell him to pick one himself, he gets upset. Really upset.

I’m trying to teach him that people don’t want to answer these types of questions all day long. But it is not easy. I don’t think he understands that sort of thing.

And so, we are left with a dilemma. Not answering the questions means having to deal with him being extremely upset. Answering the questions over and over again drives us crazy.

A therapist at Kai’s school suggested giving him a limit of a certain number of questions per day. That sounds like a good idea that may work.

I hope it does. I can’t take much more of this!

Good Grief, It’s Almost Halloween

This week’s Patch column takes a look at our son’s Halloween history. Click here to read all about it.