Saturday, December 31, 2011

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!

Thursday, December 29, 2011

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?

Wednesday, December 28, 2011

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.

Tuesday, December 27, 2011

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.

Monday, December 26, 2011

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.

Friday, December 23, 2011

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.

Thursday, December 22, 2011

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.

Wednesday, December 21, 2011

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.

Tuesday, December 20, 2011

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.

Monday, December 19, 2011

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.

Saturday, December 17, 2011

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.

Wednesday, December 14, 2011

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.

Tuesday, December 13, 2011

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!

Monday, December 12, 2011

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.

Friday, December 9, 2011

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.

Wednesday, December 7, 2011

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.

Tuesday, December 6, 2011

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.

Monday, December 5, 2011

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.

Friday, December 2, 2011

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.

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