Wednesday, November 30, 2011

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.

video

Tuesday, November 29, 2011

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!

Monday, November 28, 2011

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.


Tuesday, November 22, 2011

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.

Monday, November 21, 2011

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.

Thursday, November 17, 2011

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.

Wednesday, November 16, 2011

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!


Tuesday, November 15, 2011

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.

Monday, November 14, 2011

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.

Friday, November 11, 2011

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.

* * * * * *

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.




Wednesday, November 9, 2011

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.

Tuesday, November 8, 2011

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.

Monday, November 7, 2011

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


Friday, November 4, 2011

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?

Thursday, November 3, 2011

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.

Wednesday, November 2, 2011

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.

Tuesday, November 1, 2011

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!


* * * * *

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


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