Friday, December 31, 2010

Reflections on the Past Year

While New Year’s just doesn’t match up to Christmas in terms of kids’ anticipation, our son is still looking forward to it. We are all staying in on New Year’s Eve and Kai is planning to stay up past midnight to ring in the new year. My wife and I told him that we’re not sure that we can stay up that late ourselves, and he said not to worry, that he will wake us up if we fall asleep.

Last New Year’s Eve, he also said that he wanted to stay up late, but around 10 o’clock, he told us that he was ready for bed. I have a feeling that this time he will last at least a little longer.

Things change in one year, and Kai’s ability to stay up later on New Year’s Eve is but one measure of the change. As we reflect on 2010, we can see that a lot did indeed happen in the past year.

Our son started the year in kindergarten at our neighborhood school, but had to transfer when things did not work out well. At his new therapeutic school, he received more attention and had opportunities that matched his needs. He had some difficult times along with the good, but overall he made progress and reached Level 2.

We had a lot of fun moments. There was our crabby vacation and visits with grandparents. We played sports and played games. We celebrated Mom’s birthday. Of course, holidays are always a big occasion and we enjoyed everything from Passover to Hanukkah, Halloween to Thanksgiving to Christmas.

It is hard to imagine what 2011 will bring. But, knowing Kai, it will be full of surprises. I can’t wait to find out how it all turns out.

Happy new year, everyone!

Thursday, December 30, 2010

Working at Playing

With all this time off during winter break, most kids are probably spending a lot of time playing with their friends. It’s something that we would love for our son to do as well, but that doesn’t happen too often right now.

Like all kids with autism, Kai’s social skills are deficient and he does not play well with other children. In addition, he seems to have little interest in playing with other kids, preferring instead to play with me and Mom. And so, my wife, especially, worries that Kai will grow up without having any friends.

Over the years, we’ve set up play dates for Kai with various other children. We quickly learned that these need to be facilitated in order to have any value at all. Unlike with typical kids, you cannot just put a child with autism together with another child and expect them to play together.

Instead, a successful play date will often involve some type of organized activity with a shared goal. A skilled facilitator can help the kids learn how to take turns, communicate, and work in tandem while developing skills such as sharing, compromising, learning to think on the fly, reading social cues, and dealing with their emotions.

When Kai was younger and wasn’t in school all day, he did his ABA therapy at home and it was easier to set up play dates. His lead therapist for many years, Mary, was wonderful at facilitating activities between Kai and whatever peers we could find. But, over the past year, his schedule changed and Mary moved away and we are finding that it is much harder for us to facilitate play dates on our own.

One challenge is just finding peers that are appropriate play partners. While some neurotypical kids may potentially make good partners for our son, we are not very close with many parents. And, without a previously established relationship with the other parent, it is hard to overcome the possible stigma of having a play date end up badly because your son had some type of meltdown.

Parents of other kids on the spectrum are likely to be more understanding. But there, it is sometimes difficult to find a child that is a good match in terms of interests, temperament and abilities. And, while a trained facilitator may be able to pair two kids who have trouble with social skills, it is a lot harder for us parents.

When Kai was in school just half the day while in preschool and kindergarten, we had him in therapeutic groups that worked on these social skills. But, as he is now in school until mid afternoon, it is harder to find one that fits his schedule.

A few months ago, we thought that we found a good group for him. We brought him in to the psychologist and speech therapist who were running it so that they could make sure that he matched well with the other kids in the group. He passed the evaluation, but, after the first session, they said that he could no longer attend because his social skills were not up to par with the other children. Imagine the rejection we felt. Our son, who already has trouble fitting in, being turned away by professionals who set up a group specifically to help kids like him.

But, we’re not giving up. This is too important.

I just never would have thought that it would take so much work to teach a child how to play.

Wednesday, December 29, 2010

Winter Break Camp for Special Needs Kids is Nothing to Sneeze At

My son woke up in the middle of the night and complained that his nose was bothering him. He seemed to have some congestion so I tried to get him to blow his nose. But, though he’s nearly seven years old, he still doesn’t know how to do it.

So, at 2:15 AM, I tried giving him another lesson. Hold the tissue up to your nose with two hands. Take a breath and then close your mouth. Blow out with your nose.

He couldn’t grasp the concept. Instead, he kept trying to suck everything in.

This is another one of those paradoxes about autism that I wrote about earlier. Kai is obviously very intelligent in many ways. And, blowing your nose seems like such a simple concept. Why can’t he do it?

Fortunately, his nose wasn’t bothering him enough that he couldn’t fall back asleep. And, he seems fine this morning, though he claimed that he was too sick to have his swim lesson today (which was rescheduled from its usual Tuesday slot).

Funny thing, though, he said he wasn’t too sick to go to his winter break camp.

Over these two weeks that Kai is off from school, he is attending a half-day camp for kids with special needs. All of the kids have individual aides who help them through a great mix of activities ranging from gymnastics to arts and crafts to science projects. Kai loves all of those things and he seems to be having a great time. Before the first day of camp, he kept saying that he did not want to go. But, once he started, he always has a smile at the end of each day’s camp and says that he had fun.

As Kai would likely not be able to participate in a regular camp with all of his behavioral issues, my wife and I were happy to have found this opportunity for him. The fact that he enjoys it so much makes us feel even better.

And, that is nothing to sneeze at.

For those in the Chicago area, A Big Blast is the organization that is putting on the Winter Break Camp. They also have a lot of other great activities that you may want to check out at their website.

Tuesday, December 28, 2010

Obsession or Genius?

My son does well at math, but science may be his favorite subject in school. Kai has a passion for learning about things, whether it is creatures, plants, planets, or pretty much anything else. He is very curious and enjoys trying his own science experiments to see what happens. So far, he has not blown up the house. Maybe next year.

For Christmas, he received several science-related presents from his thoughtful relatives, mostly involving planets, including a book, video, and games. Over time, I have no doubt that he will enjoy all of them.

But, Kai tends to obsess about things. When he took it upon himself to learn the Hebrew alphabet, he couldn’t learn just a letter or two a day; he had to learn the whole alphabet in a couple days. And, when he discovered the order the fifty states became part of the United States, he had to learn that as quickly as possible, too.

Numbers feed his obsessions. Once he sees a number attached to a set, he will want to go through the entire set from one to whatever. That is why we’ve had to endure all the Kidz Bop CDs from #1 to #18; I’m sure he will be ecstatic to learn that Kidz Bop 19 is due out next month.

And so, on Christmas morning, when he opened a present called “Electronic Snap Circuits” and saw on the box that it said “Build over 300 exciting projects,” he had to get started on them right away.

The toy is actually quite neat. It educates kids on how electrical circuits run everyday devices. It comes with over 60 pieces including wires, resistors, switches, capacitors, lights, and a speaker that all snap together easily. The booklet gives instructions on projects that include making a doorbell, a noise-activated burglar alarm, electric fan, and AM radio among many other things.

Although it is recommended for kids 8 and up, the first several projects were very easy for Kai. He got through ten projects very quickly. When they started to get a bit harder after that, he got a bit frustrated and we thought he should take a break to play with his other new toys. At first, he resisted, but then he agreed.

But first, he had to get a calculator. There are 305 projects in the book. He punched in the numbers and figured out that if he did two projects a day, it would take 152.5 days to complete all of them. That was too long. If he did five a day, it would take only 61 days. He finally decided that he would do ten a day. That way, he could finish everything in about a month. We agreed that ten a day seemed reasonable as we didn’t want him to do too much at once.

He watched his new video about the planets. But, after that, he wanted to do ten more projects. Okay, we said, but that will be all for today. Then, you have to play with other toys. He agreed. Until he finished those ten projects. Then he wanted to do ten more. And that is when we said no. We took away the box and told him he could have it again the next day.

I’ve heard that some geniuses like composers and inventors obsess over whatever it is they are passionate about and that is what enables them to be so successful. That may be true. But, I don’t think it is healthy for a six year old boy to obsess over one toy, no matter how educational it is.

He whined and protested and got mad that he couldn’t play with it any longer that day. But, finally, we did get him to do some other things, all of which he enjoyed.

The next day, though, he went right back to the electrical projects. He even had several of the pieces with him at the breakfast table, talking with them like other little kids would talk with their stuffed animals or dolls. Yesterday, he did many more projects. When I last looked, he was up to project #103. At this rate, he will finish project #305 before the end of winter break.

For those of you who gave him another toy for Christmas, have no worries. He will soon be done with this one and then it will be on to something else. It won’t be long before we will be telling him that he has to stop playing with one of your gifts.

Monday, December 27, 2010

A Blizzard of Activity on Christmas

When I last wrote, we were preparing for Christmas Eve. I knew it would be a very full holiday weekend, but I did not imagine just how exhausting it would be.

The Christmas cookies and turkey dinner on Christmas Eve turned out well. Our son was happy and excited. Kai declared that Mom and I had earned all of our points on his Christmas chart so that we would get all of our presents. He set out milk and cookies for Santa and went to bed.

Kai was up early on Christmas morning, but not too early. I don’t know if he actually slept through the night for a change or whether he was afraid that Santa would not come if he came out of his room, but he stayed in bed until 6:30 on Christmas morning.

After that, however, the weekend was a whirlwind.

He got us up and then wanted to go downstairs to check out the Christmas tree to see the presents. We let him open the ones in his stocking right away, and he enthusiastically dumped out the contents and went at it.

After that, he had to wait until I took a shower, and he waited pretty patiently while Mom tried to keep him occupied with the Wii. When I came downstairs, however, I saw that he had organized all the presents so that his were in one big pile. It was reminiscent of what I did when I was Kai’s age.

For parents, few things are as fun as seeing your child’s excitement on Christmas morning. Kai ripped open the presents with glee. We had him pause after he opened a couple so that we could eat breakfast, but he snuck open a couple more while we were occupied.

After breakfast, it was a blizzard of activity with wrapping paper flying everywhere, though we tried to get him to slow down long enough to at least notice who gave him each present. He would spend more time playing with some of the presents, but mostly he treated it as a race to open everything up.

After that, it was play time! We spent the morning, and afternoon, and evening playing.

We took one break to play in the snow. Well, he played while I shoveled. And then it was back to playing some more.

The next day, it was more of the same. There was more shoveling, too, as it snowed about eight or nine more inches overnight.

I never thought playing could get to be so exhausting.

But it was so much fun. I don’t know how many more years he will have this innocent excitement about Christmas, but I am enjoying every minute of it now.

For more pictures, visit Hanabi Boy on Facebook. And, don’t forget to “Like” us to get notified of updates to our blog.

Friday, December 24, 2010

Merry Christmas to All!

I made Christmas pancakes this morning that were in the shape of snowmen, snow flakes, and Santa.

Yesterday, we had a special video night as we had dinner in the family room while watching A Charlie Brown Christmas on dvd. Then, we read A Marley Christmas at bedtime.

Today, Mom and Kai are making Christmas cookies. (My job is to take pictures, eat, and clean up!) Then, she is roasting a turkey for dinner. (We plan on having the leftovers tomorrow as we anticipate being too busy playing all day to cook).

Yes, it’s my favorite time of year, and we are ready for it.

To top it all off, Kai even gave me bonus points on the Christmas chart that he is keeping. Mom was a bit irked that she did not get any bonus points despite spending most of the day with Kai yesterday. But, I think the Christmas cookies will earn her extra points today.

I know we will have a wonderful Christmas. May yours be filled with joy and love as well.

Merry Christmas!

Thursday, December 23, 2010

Standoff on the Sledding Hill

Late yesterday afternoon, just as it was approaching dusk, my son and I went sledding. We tried the small hill earlier in the week and had great fun, but went to the big hill this time. It was the same hill where we had gone sledding this summer with our special all-season sled.

As we climbed the hill, I could see that all the snow we had over the past week had gotten packed down solid. I told Kai that it looked like we would slide down very fast, and I immediately regretted opening my big mouth. Kai’s anxiety went on high alert.

As we had brought only the one-person sled this time, we had to slide by ourselves. He wanted me to go first. It really was a fast ride, and I continued sliding long after I got down to the flat part on the bottom of the hill. But, seeing as how I did not crash and die, Kai wanted to try it himself.

He did not want to start from the top so we found a place about halfway up. His first run was smooth and he wanted to do it again. But, on his next run, the sled skidded sideways, first one way, then the other. It was enough to raise his anxiety even more.

He was scared and did not want to go again.

But, I did not want to see him quit on a bad note. If he walked away without trying again, I figured it would be a long time before he would want to go sledding again. I wanted to remind him that sledding can be fun. I really wanted him to take one more run down the hill.

And, so began our standoff.

He kept saying he was scared while I kept reassuring him that I would start him from a good spot and he would have a fun, smooth ride. I agreed to start him from even lower down the hill. We were now only about a third of the way up. But still, he resisted.

As it was nearly dark by now, there were only a few other people left on the hill. But, all of them probably knew of the drama that was going on as Kai loudly proclaimed that he was not going to slide down again.

A couple girls stopped by. “Don’t be scared,” they told Kai. “It’s fun!” But he snapped at them. “Go away!”

I’m sure some of the people thought that I was a mean father for forcing his son to go sledding against his wishes. It certainly crossed my mind as to whether I was doing the right thing. But, in the end, I decided that I didn’t want him to give in to his fears.

I stayed calm but firm. Sometimes I got Kai to climb partially onto the sled, but he jumped off before I could send him down the hill.

Finally, he got on and was in position. Before he could jump off again, I let go of the sled and it went on its way downhill. It was a nice, smooth ride.

The girls who spoke with him earlier happened to be at the bottom near where he came to a stop. I could hear them cheering him and giving him props for going down.

I ran down the hill. Well, I went as fast I could on such a slippery slope. When I reached Kai, he had a small smile. I asked him if it was a fun ride and he said that, yes, it was, but that he wanted to go home.

It was dark now. We went home. As we got to the house, he said that I had lost three points off his Christmas chart. I told him I understood, but I didn’t want him to be scared, and that I was glad he enjoyed his last run down the hill.

Later on, he told Mom that I had earned all my points for the day. He wasn’t going to deduct any points after all. And, the points that Mom had lost the day before were apparently restored as well.

Yes, Christmastime is a time of peace and joy. And forgiveness.

Wednesday, December 22, 2010

You Better Watch Out, Santa Claus is Coming to Town

With Christmas just a few days away, kids are on high alert that they better be nice or Santa won’t be bringing them presents. Apparently, that is true for parents, too.

At my son’s ice skating class over the weekend, Kai got agitated when I had trouble tying the laces on his skates. A previous user of the skate left a knot in just the wrong spot, and Kai was squirming which makes it difficult to tie laces regardless. As he was his usual impatient self about getting on the ice quickly, he got upset when I didn’t get him ready fast enough.

When he is upset, Kai often says that he wants to go home, even if it is an activity he normally loves to do. And so, as I walked him over to the ice, he kept saying that he wanted to leave. When we got to the ice, the girls that help him skate came over. There were five of them for just Kai as many of the other kids in class did not make it this week. When Kai continued to protest about having to skate, I told him that he could take a break for two minutes, or go skate right away, but we were not going home.

He got even more upset with me and when I did not budge, he loudly told me in his best Donald Trump impression, “You’re fired!”

I could see some of the girls trying to stifle their giggles, as seeing a six year old firing his dad had to be hysterical to them. I tried to hide my own smile. Does he even know what “fired” means? How was he planning to get home if he fired Dad?

When I told Kai that he was not going to get to watch any videos the rest of the day, he finally went on the ice and skated. The girls were very nice to him and he soaked in all the attention he got.

But, he was still not happy with me.

The next day, at bath time, when I scolded him for not washing fast enough, he told me, “Dad, you’re not being nice. Santa is not going to bring you any presents.”

He then explained how he, Kai, would make a chart and keep track for the next five days to see if I was being naughty or nice. And, he would do the same for Mom, too. He must have gotten the idea of the chart from his school, as they use a daily point sheet to track performance on several aspects of his behavior. When he does well, he earns rewards.

So, after two days of Kai’s Christmas chart, you’ll be happy to know that I’ve now earned 40% of my presents. Three more good days and I’ll get 100%. But, Mom scolded him for something so he told her that she lost 20%.

Too bad, Mom. Lump of coal for you, I guess.

Tuesday, December 21, 2010

My Kid is Bopping

My son likes listening to music in the car. But rather than listening to the radio, Kai always picks out a Kidz Bop CD on onr weekly dad-and-son visits to the library.

For those who are not familiar, Kidz Bop is a series of CDs that consist of compilations of popular songs that are covered by children singing, rather than the original artist. Most grownups that are serious about their music would probably rather hear nails on a chalkboard than to listen to these kids’ versions of songs. But, Kai likes them, and if it keeps him happy in the car, then it is okay by me.

Kai’s passion for Kidz Bop started when he and I were looking through the children’s music bin at the library and he noticed these colorful CDs with giant numbers on the cover. It turns out that the title of each compilation has a number that indicates its sequence in the series. Kai would probably listen to lectures about paint drying if you put numbers prominently on the cover of the cases. And so, we got the first one and have now listened to the all 18 in the series.

Lately, Kai does more than just listen to the songs; he sings along with some of his favorites. When Kai was first diagnosed with autism, we found a special music CD where every song was performed very slowly so that kids with processing issues could more easily follow along. Even at that slow speed, it took a long time before he was able to sing along. So, it is great to hear him now sing along with even these fast-paced songs.

The latest Kidz Bop contains a song called “Single Ladies.” Those of you who actually get to listen to regular music in the car may know that it was a big hit for Beyonce. (I had to look it up). It is a catchy tune, but not exactly a “guy” song. Kai was singing along with it the other day when I drove him to his karate class. As we entered the dojo, Kai was still enthusiastically singing, “all the single ladies, all the single ladies…”

As we passed Sensei and all the black belt male senpai, I imagined that they were all looking at me funny and thinking that it was my choice to listen to this song in the car. “Kai, dude, you are going to cost me my man card!”

Ah, the things we do for our children. And, yes, I’m smiling when I say that.

Monday, December 20, 2010

3D Movie Night

My wife and I watched some 3D TV over the weekend. No, we did not get a new-fangled electronic device. We watched our son bring Michael Jackson to life in our family room.

Back in the late ‘70s, before Michael Jackson became MICHAEL JACKSON, the mega star and mega weirdo, he played the scarecrow in the movie version of The Wiz, the Motown take of The Wizard of Oz. Michael sings and dances as he and Dorothy (played by Diana Ross) and the others ease on down the road.

I had picked out the dvd at the library last week as Kai had enjoyed seeing the classic version of The Wizard of Oz on our Thanksgiving vacation. I wasn’t sure he would like this one, but thought it was worth a try. The movie started slowly, but once Jackson appeared as the scarecrow, the film, and my son’s interest, really picked up.

When the uptempo music came on and Jackson started dancing, Kai went into full dance fever mode himself, as he started stepping, spinning, and waving his arms in sync with the music, and with Michael’s moves. At one point, Kai spun away from the television, pointed and looked right at us, and said, “come on, get up and dance!”

The movie itself wasn’t great. But, having a live little Michael Jackson in our own family room enhanced the experience.

Okay, so this doesn’t make up for all the bad days he had at school lately. And, channeling Michael Jackson is not exactly the ultimate goal we have for our son. But, for a kid who once seemed extremely uncoordinated and who couldn’t even jump, this was pretty darn good.

It was the best movie night my wife and I have had in a while.

Friday, December 17, 2010

Noting the Good During a Bad Week

During times like these when we are feeling discouraged about our son’s progress, I think it is important to step back and take note of the good things that are happening.

Just this week, I had the opportunity to attend several of my son’s after-school activities and saw some really positive developments.

At karate class, his sensei now regularly hands Kai a microphone at the end of the pre-class warmup session so that he can announce to the class that it is time to clean up as class is about to begin.  As I easily recall the days when my son hardly spoke, it gives me a big kick when I hear him speak so well in front of everybody.

At his swim lesson this week, Kai walked right in and I did not have to carry him in like I did before, or drag him kicking and screaming into the health club like Mom had to just last week.  I was even more impressed at how far he had come in just the seven weeks since I’d last seen him swim.  He was putting his face in the pool with ease and was starting to swim without the use of a kickboard.  It was great to see that he was obviously learning well.

Perhaps the most interesting experience was when I went with Kai for his latest semi-annual dental checkup.  His first visit to the dentist when he was three years old remains one of the most unforgettable ordeals I’ve endured as a father.  Kai screamed and fought to keep the dentist from looking into his mouth.  My wife and I struggled mightily to hold down various parts of his body in an attempt to keep him as still as possible.  Meanwhile, the dental assistant attempted to stick a couple of those “popsicle sticks” into his mouth to try to pry it open so that the dentist could examine his teeth.  When the assistant was finally able to keep Kai’s mouth open for more than a couple seconds, the dentist stuck his mirror in and took a quick look around.  After about five seconds, he pronounced that Kai had no cavities and that we were free to go.  I wasn’t sure how much he could actually see during that time, but I was not about to argue with him to extend the suffering (mine, not Kai’s).

This visit, however, went totally differently.  For one thing, the place we went to this time is a pediatric dental office so the hygienist was a real pro at working with kids. She playfully squirted water with Kai and let him be her assistant.  She also kept talking with him, but what I loved was that he answered her back.  It’s a miracle whenever he answers Mom or me so I was thrilled to see him be so conversational with Jackie.  She counted his teeth – counting is always a good thing with him – and we found out that he now has 22 teeth.  And, she let him pick out his preferred flavor of tooth polish – who knew that there was cookie dough flavored polish?  I kept waiting for him to explode and protest, but it never happened.  Kai cooperated beautifully as I marveled at how much he had changed in three years. 

And so, just this week, we had a lot of good along with some of the bad.  And that serves as a reminder to stay steady, and not get overly discouraged when things don’t seem to be going well.  So here’s to keeping it real.  Just please remind me of this the next time the rollercoaster takes a plunge. 

Thursday, December 16, 2010

The Rollercoaster Heads Down Fast

At the beginning of the school year, I wrote that life is a rollercoaster with our son. Since then, I’ve documented some of the difficulties and some of the successes regarding Kai’s performance at school.

A recent high point came when he reached Level 2 a few weeks ago. I noted then that, while it was a great milestone to achieve, it did not mean that he will be perfectly behaved from that point forward. At the time, however, I didn’t realize how quickly the rollercoaster was about to drop.

After a month without a major incident, Kai has had five in the past week and a half. While the school will not officially reclassify him back to Level 1, he has lost all of the privileges he earned for reaching Level 2.

His latest major incident was brought on yesterday when he got impatient and then could not control himself when he had to wait for the teaching staff to set up a craft station. When the staff tried to explain that the materials were not yet ready, he yelled and did not stay in his area. He was given two reminders, and then asked to take a timeout when he continued to be disruptive. At that point, he bit his clothing and tried to bite some of the staff. Kai’s inability to wait is something we have been dealing with, sometimes with a bit of success, for a long time.

At home, when we asked him about his day at school, he told us that he wanted to turn all of his classmates into zombies because they spit at him and tried to bite him. We were astounded at his story. He often has trouble describing the events of his day, but what he does tell us almost always turns out to be true when we can later verify it with a teacher. So, we were wondering if there was any truth to this fantastic story. But, soon after I received an email from his teacher that described what really happened. Apparently, in the story he told us, he was projecting his own poor actions onto his classmates.

It is the first time that I can recall Kai telling such a blatant and outrageous lie. On one hand, I know that is what happens when kids get older. But still, it is disheartening to see a part of his innocence begin to fall away like that.

Of course, he was not allowed to play his favorite video game last night. The punishment was not so much for his behavior at school as it was for not telling us the truth about it.

The rollercoasters at amusement parks have a lot of ups and downs, but, in the end, you end up right back where you started from. During these difficult periods with our son, it too feels like we are not getting anywhere.

But, I know that is not true. Our son has come a long way and will continue to make progress. Some things just will take longer to deal with.

And, we can’t allow ourselves to stay discouraged for too long. We’ve got work to do.

Wednesday, December 15, 2010

Autism Blog Carnival

I want to call your attention to a new special needs blog carnival. A blog carnival is a collection of posts from different bloggers on a particular topic. Today’s topic is autism and traditional and non traditional treatment options. Please check it out here.

And, if you are visiting Hanabi Boy from the blog carnival, welcome! Take a look around!

Thanks and come back soon.

Tuesday, December 14, 2010

Are Wii Wrong to Let Our Son “Box?”

My wife and I were just discussing whether we should let our son play the boxing game that is part of the sports package on the new Wii video game system he just got for Hanukkah. He is already inclined to hit, bite, kick, scratch and otherwise resort to violent acts when he is upset, and we were discussing whether this game would encourage him to act even more violently. My wife reports that a friend of hers does not let her boys play this same boxing game.

And so, when I read the article “Christmas presents you should not buy for children with autism,” my attention was captured when the author advised against letting kids with autism watch violent movies or play violent games.

The article was written by a special education teacher. She states that most children with autism cannot easily turn off what they see, and that they are unable to separate fantasy from reality. Instead, she prefers educational DVDs and computer CDs, and gives examples of each. She also speaks positively about the iPad.

I’m certainly not going to knock educational DVDs as I’m always looking for those on our weekly Dad-and-son visits to the library. And, the author makes a lot of great points about curtailing the violence our kids consume.

But, I’m not convinced that our son’s boxing game can be considered violent. I see it more as innocent, silly fun. There is absolutely no blood or gore, and it seems more like exercise than anything else. Besides, in the week that we’ve had it, we’ve had a lot more real social interaction with our son while playing with it than with most other activities.

Still, I’m going to monitor our son’s behavior over the next few weeks. And, if we see an increase in violence, I will reconsider my viewpoint.

What do you think?

Monday, December 13, 2010

iBand Christmas Medley

This has nothing to do with my son, but it is the Christmas season, and with all the talk about the iPad being so beneficial to children with autism, I thought I'd call attention to this very cool medley of Christmas tunes performed on iPads and iPhones. 

Have a holly, jolly Christmas!

Decorating the Christmas Tree

When I was a kid, the day we put up our Christmas tree was one of the best days of the year.  It meant that Christmas was getting nearer.  The joy of decorating the tree was surpassed only by the excitement of seeing presents under it on Christmas morning.  My son seems to feel the same way.

Kai and I went to get our tree after school on Friday afternoon.  He was excited to go.  We went to our usual place and Kai picked out a nice tree.  I hadn’t intended to actually put it up that day, but since he was so eager, I got out all of the boxes of ornaments and lights and we went at it.

Or, I should say, Kai went at it.

While I was occupied with getting the tree in the stand and then with untangling the light strings, Kai opened every box and within minutes had every ornament and all of the colored light bulbs scattered across our family room floor. 

What a mess.  I had my way of doing things.  Now it would take me ten times as long to clean everything up afterward.  And, this is not how I go about decorating the tree.  And… “Kai, be careful!  These ornaments are breakable!” 

I was irritated. 

But, Kai listened, somewhat, to my admonishments to be careful.  And, I could see the excitement on his face.  “Are you ready for the lights, Daddy?”  “Can we put on the ornaments, Daddy?”

How could I possibly be irritated at a little boy who just wanted to look at all of the Christmas decorations and couldn’t wait to put them onto the tree?  That moment rekindled the special joy of the occasion that I felt so many years ago as a child. 

Yes, Kai, I am ready.  Which one do you want to put on first?

Sunday, December 12, 2010

Alternative Treatments for Autism: No “Proof,” Just Results

We have probably tried as many different alternative treatments for our son as anybody. Most of these are shunned or outright scorned by conventional medical practitioners.

Since the time Kai was diagnosed with autism at age two, we have had him on a gluten-free/casein-free diet, and have been giving him a battery of supplements as recommended by a DAN (Defeat Autism Now!) doctor. We have also tried hyperbaric oxygen therapy, biofeedback, and Chinese medicine. Currently we are having him checked out by an Applied Kinesiologist.

Have they helped?

Our son has made tremendous progress. But, the truth is, we cannot say with certainty that any of the things we have done have contributed to this.

A scientist who is doing research would surely criticize our approach. There are too many variables; we are doing too many different things at once to know what is working and what is not.

And, that is all true, and it is valid criticism if we were doing this for scientific research. But, we are not. We are trying to help our son to have the best chance at having a good and productive life.

Time is of the essence. I believe that the most change in people occurs when they are still young. Early intervention and action are critical. We do not have time to wait to see if something is working or not before moving on to the next item. We need to act now.

Is this the act of so-called “desperate parents?” Perhaps. But, I really do not care if I am called desperate when it comes to our son’s future.

What I do care is that my son could not talk and did not respond at all when he was diagnosed. He was considered to have a severe level of autism. And now, he speaks well, has revealed an exuberant personality, and is showing his intelligence as he is doing work well beyond his grade level in school.

Did our alternative approach really make a difference, or would he have turned out like this anyway? No one can say for sure. But, what I do know for sure is that I would not have wanted to chance it.

Saturday, December 11, 2010

Ron Santo: An Inspiration for All of Us

Ron Santo was laid to rest yesterday.

When I was a young boy, Ron Santo was one of the stars on the Chicago Cubs team that turned me into a baseball fan for life. He was a great player – a nine-time All-Star, five time Gold Glove winner, and the preeminent third baseman in the National League. And, he had a fiery passion for the game that was obvious even to us youngsters.

But that’s not why I am writing about him now.

Ron Santo was diagnosed with type 1 diabetes when he was 18 years old, but did not let people know about it until his baseball career was well established. That he was able to be so successful says much about his mental toughness.

His struggles with the disease continued long after he was done playing baseball. For the past 20 years, he has been part of the Cubs’ radio broadcast team. For the last eight years, he’s had to make the climb up to the broadcast booth each day without the use of his legs, which had to be amputated as a result of his diabetes. He continued to battle the effects of the diabetes every day until he died, about a week ago.

Yet, to hear Ron on the radio, you’d think that life couldn’t be better for him. He groaned when the Cubs made a bad play, but never once complained about the hand he was dealt in life. In fact, his enthusiasm was infectious. You couldn’t help but smile when listening to Ronnie cheer on the Cubs. He loved his Cubs, loved being at the ballpark, and loved life.

We all can take a lesson from Ron Santo.

It is understandable that we can sometimes feel discouraged or frustrated with our situations. Sometimes it is hard to see the light. But, staying down won’t get you anywhere. It takes courage to stay strong in the face of adversity. Ron Santo never gave up on the Cubs, or himself. And, because of that, he made the most of his life.

Thank you, Ronnie. We will miss you, but will always carry your inspiration in our hearts.

Wednesday, December 8, 2010

What Makes a Rainbow?

My son actually ate some of his breakfast this morning and wanted to play his new video game afterward as he still had a little bit of time before having to leave for school. I didn’t want to start setting the precedent of playing video games first thing in the morning as I could just see him getting up earlier and earlier to play. Instead, I suggested that he could bring a book to the kitchen and we could read together while he had a few more bites of his bacon.

He brought “What Makes a Rainbow?” which is a book he’s had since he was a baby. I’m not sure what made him pick that one out this morning as it is far below the reading level he is at now, and he hadn’t read it in ages.

The very simple story begins with Little Rabbit and his mother observing that it stopped raining. “Soon we’ll see a rainbow,” says Mama Rabbit. Little Rabbit is curious as to what makes a rainbow. Mama tells him to ask his friends. On each of the subsequent pages, he asks a different friend. Bluebird tells him that you need blue to make a rainbow; Ladybug tells him you need red.

At the end, he learns that you need rain, colors, and sunshine to make a rainbow.

In life, when it is metaphorically “raining,” it is sometimes hard to see that it will lead to a rainbow. So it is in our household right now. Perhaps we need friends to tell us the colors that we need to make a rainbow. Or, perhaps, we just need to be patient for the sun to come out.

I know that it eventually will.

Tuesday, December 7, 2010

Homework Problem

My son is starting to get homework from school. He doesn’t like it.

As with many kids, he wants to put it off as long as he can. We want him to finish his homework before he does anything else. Therein lies the rub.

Yesterday, Kai’s homework was a page of various math problems. He and Mom got to his speech therapist’s office early, so he nicely completed half of the homework while they were waiting. Sounds good, right?

Except that he cherry picked the easiest problems to work on with Mom. When they came home, Mom prepared dinner while I had the duty of getting Kai to complete the rest of his homework.

Of course, he really rather wanted to play with the new toys/games that he got for Hanukkah. I thought for sure that would serve as motivation for getting his homework done quickly. But, no. It was incredible how much time he spent complaining about not wanting to do the homework. Pointing out that he could have finished his homework in all the time he spent whining about it did not seem to motivate him or to improve his mood.

Once he actually started to work on it, I hoped that he would get through it quickly. Hey, I wanted to play the new video game, too. Unfortunately, those hopes were soon dashed.

“T is 28 less than 35. What is T?” Kai knew to subtract 28 from 35. “Less than means subtraction,” he said. Well, not necessarily, I told him. He did not seem to hear me.

“56 is 106 less than T. What is T?” He subtracted 56 from 106. I tried to get him to pause and think about it. He insisted on writing the wrong answer. I quietly said to think about what the question is asking. “Let’s read the question again. Is T more than 56 or less than 56?” He realized he had the answer wrong to begin with. He does not like to be wrong. He got more agitated.

For another problem, I handed him some paper. “It will be easier to do if you write the equation on the scratch paper.” He insisted on doing it in his head. He made an error. I again suggested that he write out the equation and check his work. He angrily wrote out the equation and got even more upset when he had to correct his mistake.

The more homework he did, the more frustrated he became.

I guess I could have just let him do it the wrong way, not bother correcting him, and let the teacher explain to him what he did wrong. But, I really wanted to teach him and give him tips to help him figure out the problem himself in the future. I’m stubborn that way. But, I will have to think about how I can teach him while keeping him from getting so frustrated.

In the end, he took so long to do his homework that we did not have time for the video game before dinner. However, he did eat dinner quickly so we had some time to play before bedtime.

When I was a child, I did not like homework either. I had thought that my days of not having to deal with homework were long past. But, as the father of a first grader, I think my latest homework problems are just beginning.

Monday, December 6, 2010

Reflections of Hanukkah Weekend

The birthday parties were held at fun places.  One was at the same arcade we went to a few weeks ago, and the other was at one of those places with huge inflated slides and trampolines.  Kai had a lot of fun at both places, though he was more interested in playing with Mom or Dad than with any of the other kids.  The lack of socializing with other children is an ongoing concern for us.  Can the desire to play with kids be taught? 

As the time for our Hanukkah party drew nearer, and I was trying to keep our driveway clear of snow for our guests. Kai was more interested in throwing snowballs and making a snowman.  We did manage to build a snowman, though it was more accurately described as a snow penguin this morning by one of Kai’s schoolmates that he shares a taxi with.  Kai also wanted to make an igloo.  Not being an engineer, an Eskimo, or someone with much acumen for building things, I convinced him to settle for a decent snow fort.  Though, this morning he said he wanted to “finish” our igloo later today.  I guess I’ll have to google “building an igloo” and see what I can find.

The Hanukkah party was a success on so many levels.  It is great to share such an occasion with family, and it was nice to see those we don’t get to see too often.  My wife and I are not particularly experienced with entertaining, but my wife put a lot of thought and effort into this party and it showed.  This year, for the first time, she tried making beef brisket, which is a popular Jewish holiday entrĂ©e.  She found a recipe by a Jewish grandmother on YouTube, and it really was delicious.  She gained confidence to make it again.  

Of course, being parents of a child with autism, our definition of success of a party is usually dependent on our son’s behavior.  In this regard, the party was an unqualified hit.  Kai had been looking forward to it all week, and was very excited when guests started arriving.  Often, he gets too excited and out of control, but he held it together pretty well this time.  My wife had told him that he would not get to open his Hanukkah presents unless he played the piano nicely for everyone.  In the middle of dinner, he quietly slipped away from the table and played “My Dreidel” several times.  After dinner, he played a couple of duets with Mom, and then watched attentively as his nine-year old cousin played the cello.  When she finished, he cheered enthusiastically.

After waiting so patiently to open his presents, he ripped into them quickly once we finally gave him the okay to do so.  Before you knew it, there was wrapping paper everywhere and all the gifts were revealed.  For the rest of the evening, he and the other kids played with their new toys.

One of his gifts required more setup and we did not get to it until the next day.  But, once we did, he stopped just long enough to go sledding.  After our success with summer sledding, Kai couldn’t wait to sled down the big hill with all the snow.  I was happy to see that he was not scared and we went up and down many times.

But, then it was back to his new toy.  It served as excellent motivation for dinner as I’ve never seen him eat a meal so quickly.

Hanukkah comes only once a year.  But, the impact it has on our memories is as much as most other days combined.  For us, some special occasions are satisfying if we can just breathe a sigh of relief; this time, we have a good feeling of having experienced a truly wonderful time.   

Friday, December 3, 2010

These are the Good Old Days

Our son is having another pretty good week at school, but home is another story.

The lack of listening, or more accurately, the lack of response that we saw on our Thanksgiving trip is continuing, as is our battles over breakfast. Even worse, Kai seems more obstinate about not doing the things he does not want to do, thus challenging our authority. As he continues to be needy in many ways, this makes for a frustrating combination of seeing him lose his little boy innocence while not seeing a corresponding growth in his independence. It is times like these that really make us wonder about what our son will be like as he gets older.

At the same time, as we get older ourselves, I think we spend more time reminiscing about the past. Over Thanksgiving, at my sister’s house, we recalled Thanksgivings from when my nephews were young kids. They are both in college now, and when they were small, we could not imagine how they would turn out when they grew up.

The same is true for my son now. He is six years old and it is hard enough to imagine what he might be like when in another year or two, let alone when he is 18 or 20 years old.

The fact that he has autism may make it even harder to think of how he will be when he is older. Most parents can pretty safely assume that their youngster will change quite a bit as they grow up. But, my wife and I are not really sure if we’re kidding when we say that Kai will grow up to be a 200 pound version of the still mostly adorable kid he is now. When he is 16, will he still want to sit on our laps and ask for hugs? Will he still be wearing his clothes backwards? Will he still want me to chase him around before taking his supplements?

Yes, we know that he is actually making progress, but he still maintains a lot of his little-boy dependence on Mom and Dad, even as we notice that his body is growing.

Tomorrow, we are having family over for a Hanukkah celebration. I know that years from now, we will look back on these gatherings with fondness. But, I wonder whether it will be with the sweet nostalgia of the good old days before our son grew up to become an independent young man? Or, will it be a bittersweet look at the good old days of the past that did not lead to a brighter future? Either way, on days like today, I need to remind myself that these are the good old days.

“We can never know about the days to come
But we think about them anyway…

“These are the good old days
These are the good old days”
– Carly Simon

Thursday, December 2, 2010

A Hanukkah “Miracle”

Hanukkah came early this year and my son was ready for it. Kai was excited as we lit the candles on the Menorah. Then, we called the grandparents to wish them a Happy Hanukkah.

Talking on the telephone is not something that comes easy for him. Having a conversation in person is hard enough many times. He often does not answer questions or is distracted and takes forever to say something. Being on the phone adds another layer of complexity.

For the longest time after Kai started to speak, we would hold the phone up to his face but have to prompt him to say even a few words. He probably could not process what he was hearing from the person on the other end of the line. Usually we would feed him the words to say and he would repeat exactly as we told him. It wasn’t really a conversation at all, but the grandparents liked hearing the sound of his voice nonetheless.

Some time over the past year, he started to speak a little more freely on the phone. He even would respond back a little bit to whomever he was speaking with. We would still need to prompt him at times, but less often than before.

Last night, we just handed him the phone and he spoke with everyone all on his own. He wished them a Happy Hanukkah and told them about the candles we lit. He even invited one grandmother over to our house for a Hanukkah party, though she lives too far away to make it.

Hanukkah celebrates the miracle which occurred in 164 B.C.E. (Before the Common Era) when one day’s amount of oil burned for eight days during the rededication of the Temple at Jerusalem. Kai’s newly developed ability to speak on the phone may not be a miracle on that level, but, for us, it is certainly something to celebrate as well.

And, we wish all of you who celebrate a Happy Hanukkah!

Wednesday, December 1, 2010

My Son and Rudolf, A Couple of Misfits

One of my favorite Christmas television specials when I was a kid was Rudolph the Red Nosed Reindeer.  It was on again last night and it was the first time I watched it with my son.

Kai liked the songs and laughed at some of the funnier scenes like when the Abominable Snowmonster sinks into the water, but he wasn’t as fully engaged in it as I thought he would be.  Most of the time, he was playing with his Lego Advent Calendar while only halfway watching the show.  I think he may still be too young to really understand the story.

For me, though, seeing it again with Kai helped me appreciate its message even more.  Rudolf, of course, is the reindeer born with a shiny red nose.  He is ridiculed by the other young reindeer and feels outcast for being different.  He meets up with a fellow misfit, an elf named Hermey, who is outcast because he wants to become a dentist instead of making toys.  They sing “We’re a Couple of Misfits” and decide to run away and be “independent together.”  In the end, they return home and, the very thing that made Rudolf feel like a misfit, his glowing nose, helps make him the hero who saves Christmas.

I don’t know if Kai feels like a misfit these days, although I’m pretty sure that he did when he was going to our neighborhood school.  And whether he feels it or not, I often feel it for him.  He doesn’t have a shiny red nose; in fact, sometimes he seems like all the other reindeer kids.  But, sooner or later he will do something that shows he is different.  Those who don’t know any better may see him as a misfit.

I hope that my son will be accepted as Rudolf and Hermey eventually were.  And perhaps, one day, his special talents will help make him a hero, too.

“There’s always tomorrow
For dreams to come true
Believe in your dreams
Come what may.

“There’s always tomorrow
For dreams to come true
Tomorrow is not far away.”
– Clarice the reindeer

Tuesday, November 30, 2010

iPad Presentation Draws a Crowd

After hearing so much lately about how an iPad can help kids with autism, my wife and I recently went to a presentation about using the iPod, iPad, and iPhone to support students with special needs. It was put on by our local special education district and the president of the organization said that they are usually happy if they get two dozen people to show up at a session. For this one, they filled an auditorium.

It was interesting to hear about and see the apps. The presenter was a special education teacher and he uses many of the apps he talked about in his classroom. He organized the apps into categories: organization, academics, communication, social, and fun.

The communication pieces were the most impressive, and they included text-to-speech apps that make it possible for non-verbal kids to “talk” without the really expensive specialized equipment that was previously necessary.

For my son, I didn’t see anything that we “had” to have. The organization pieces such as schedulers and timers are nice to have, and may be more fun than the old tech way we do things now, but they aren’t things we cannot live without.

If we were to get an iPad, it would mostly be for the fun things and we would primarily use it when we are in situations where we want to keep Kai occupied while we have to wait, such as at restaurants.

But, as kids on the spectrum really vary by ability and needs, it’s probably best for each of you to decide for yourselves if getting an iPad is right for your child. Here are some great websites that the speaker pointed us to that may help you decide:

Monday, November 29, 2010

Thanksgiving Vacation Over the Rainbow

We got back from our Thanksgiving trip yesterday afternoon.  We had a great time, but now it is so hard to get back into the swing of things. 

My sister and her family always take good care of us and this time was no exception.  My sister enjoys cooking and prepares awesome meals when we visit.  My wife loves the break from cooking herself, while I just love to eat all the yummy food.

In addition to all the eating, we had other regular activities. One of Kai’s favorites was walking on the nature trail every day, usually with Emi, the family’s Border Collie.  Kai doesn’t exactly play with her, but he does seem to enjoy being around her.  He did play a lot with his cousins and aunt and uncle.  As he usually doesn’t get much of a chance to play with other relatives at home, it was really nice for him to have that opportunity last week.  He was often laughing and laughing as we played games, watched movies together, or just goofed around.

Sometimes, though, I wondered if he lost his hearing.  There is the philosophical question, “If a tree falls in a forest and no one is around to hear it, does it make a sound?”  Well, I ask, “If a dad tells his son to do something, and he does not respond, does the dad really exist?”  I had thought that my son’s listening skills were improving, but you couldn’t tell on this trip.  “Don’t tease the dog.”  “Don’t jump on the couch.”  “Come back to the table and eat your dinner.” I repeated these over and over.  I’m not sure if it was because he was more excited than usual, or if I was just more sensitive to all the bad behavior because we were in my sister’s house, but it sure felt like he did not want to do a thing I said to him.  Still, that was just a minor irritation in the big scheme of things.

On our last night there, my brother-in-law put The Wizard of Oz on the vcr.  We all enjoyed it and, coincidentally, it was on the next night when we turned on the television in our motel on the way home.  I feel like being on this vacation was somewhat akin to traveling to Oz.  It was a fun, colorful, unforgettable time spent with people you love, along with a few wicked moments from my son to keep things interesting.  Now, we’re back to our black-and-white real world lives.  I’m going to try to keep in mind the lesson that Dorothy learned that “there’s no place like home.”  But, I think I’ll need a nap first before I click my heels about it.    

Thursday, November 25, 2010

Giving Thanks

On this Thanksgiving, here are some of the things I am thankful for:
  • My wife, who does all the big and little things to brighten our lives. I could not have a better partner for this incredible journey.
  • SunButter
  • Turkey, stuffing, sweet potatoes, and cranberry sauce at Thanksgiving.
  • Portable dvd players, without which long car rides with our son would likely be much more difficult.
  • Under Armour compression shirts
  • All of the teachers, therapists, aides, and the staff at my son’s school who are helping him to learn in so many different ways.
  • All of Kai's therapists outside of school as well, who have worked with him for so long and helped him come so far.
  • Flannel
  • Our extended family, who give a lot of love!
  • Summer sleds
  • Long weekends at Thanksgiving
  • And finally. my son, who brings joy to my life every day in ways I never could have imagined.

And, thanks to you for following our adventures. We wish all of you a very Happy Thanksgiving!

Wednesday, November 24, 2010

The Countdown Ends

My son needed just one more day without an incident to make it to Level 2 at school.  It was a milestone we had been eyeing since he started there almost 10 months ago.  But, if he had an incident, attaining the next level would be delayed indefinitely.

I was a bit tense Monday morning and early afternoon when Kai was in school.  It was a low barometer day, which was when he more often had incidents at school.  But, he was wearing his Under Armour.  In addition to his usual compression shirt, my wife had also gotten him Under Armour compression pants to try out.  So, wearing the tight shirt and pants, he looked a bit ridiculous – like an Olympic speed skater – but, very cute.

We picked him up at school as we were departing for our Thanksgiving trip directly from there.  A classroom aide walked Kai out to us.  Kai looked fine, but you never know.  He was happy to see us, and started talking about our trip.

His aide had to prompt him to tell us “some news.”  Kai told us that he was now a Level 2 student.  My wife and I let out a big shout of joy and raised arms of celebration.

This does not mean that he will be perfectly behaved from now on.  But, it is an important milestone nonetheless.  He is making progress at school.  He is able to maintain safe behaviors for longer periods of time.  And, that is something to be thankful for.

Tuesday, November 23, 2010

Excitement Growing Over Thanksgiving Trip

My son is really excited about our trip to see my sister and her family over Thanksgiving. His teachers at school report that he has been talking about the trip for several days now.

Of course, he is giddy about all the highway numbers and exit numbers he will see along the way. Last week, he asked me to print out the MapQuest of our route. He probably already knew the way better than I do, but he loves to look at maps and see all the roads we will take. I think, for him, this trip is like old times and a chance to see his good friends I-70 and I-66 that he hasn’t seen in some time.

But, I think that he is also looking forward to seeing his extended family.

Aunt Michi seems like an ABA therapist, as she is organized and meticulous. She keeps everything going when we are there. Uncle Frankie, on the other hand, is the ultimate Floortime therapist. His spontaneous, go-with-the-flow play always gets Kai laughing. Whereas my wife and I often have to remind ourselves to show more affect when we play with Kai, it all comes naturally to my brother-in-law.

My sister’s two boys are pretty much all grown up now with both being in college, but they nonetheless are good sports about playing with him. Ian, the older one, is a history major and wants to be a history teacher when he graduates. I definitely see the teacher in him, and with his love of sports, he is the most likely candidate to engage in some Kai Ball this time. Kiyoshi, the younger one, bears the closest resemblance to Kai as both have very exuberant, creative personalities. Some of Kai’s favorite times on our visits have been watching Kiyoshi do artwork or dancing.

Kai has also been developing a relationship with Emi, the family’s Border Collie. When Emi was a puppy, Kai was much smaller as well, and he was afraid as Emi kept trying to round him up every time he moved, as Border Collies are wont to do. On more recent visits, however, Kai seems to be developing an affinity for the pooch.

It will be interesting to see what this visit brings. One thing I know for sure, it will not be boring.

Monday, November 22, 2010

A Boring Highlight of My Weekend

Picking the highlight of my weekend is tough today. There’s a lot to choose from.

It started out well on Friday afternoon. Our son came home from school and his point-sheet showed that he had a really good day, thus completing his second straight good, safe, incident-free week at school. (With another incident-free day today, Kai will make it to Level 2, and I will be a little anxious until I find out if he makes it.)

Anyway, for doing so well, my wife gave him a Lego Advent calendar. She had planned to give it to him on December 1, but he got it ten days early as a special reward. Up until very recently, Kai was never much for Legos. He had neither the fine motor skills to work with the smaller pieces nor the patience to put them together. This set came with 24 different Lego builds, with the idea that your child would do one on each of the first 24 days of December. But, when Kai saw it, he wanted to work on all of them. I thought he might get frustrated or lose interest after one or two, but he diligently kept working on one after another. He studied each picture carefully, and with only very minimal help from Mom and Dad, he completed all 24 figures. I was truly impressed.

But, that is not the highlight of my weekend.

On Saturday morning, Kai had his ice skating class for kids with special needs. Here, local high school and junior high girls assist the students to skate. Kai has been taking the class for nearly two months now, and was already moving better than I thought he would. I originally thought that just standing up and balancing on the skates would be difficult for him, but it didn’t take long before he was moving along with girls on either side of him holding his hands. This Saturday though, was the first time that one of the girls gave him a hockey stick and let him skate by himself. I was truly amazed as he moved around the rink independently, totally overcoming my skepticism.

But, that is not the highlight of my weekend.

On Saturday afternoon, we went to see a local community theater production of Snoopy! The Musical. It is a sequel to the more famous musical You’re a Good Man Charlie Brown. We had gone to a play with Kai once before, and it was embarrassing as he talked loudly and shouted things to the cast right in the middle of the performance. This time, we reminded him of the rules for the theater and hoped for the best. Kai loved the show! He was very excited, but contained his comments to an appropriate level. It was fun to see him clapping and shouting “Wahooo!” at the end of each musical number. And, most importantly, he then quieted down when the applause died down. It was another sign of maturity and progress.

But, that is not the highlight of my weekend.

Yesterday, I popped inside the house after working on cleaning out our gutters. My wife was in the kitchen trying to finish something when I heard Kai call out from the play room. “Mommy, I’m bored!” Yes, that familiar refrain that is the bane of mothers everywhere. Except that we had never heard that before from Kai. I was startled. How wonderful that he was able to express himself like so many other kids! I shook my head and smiled as I went back outside, leaving my wife to deal with Kai’s boredom.

Now that was the highlight of my weekend.

Friday, November 19, 2010

The Puzzling Paradoxes of Autism

Today, I ask a lot of questions about my son.

Why can he remember all of the highway numbers we took on last summer’s vacation, yet cannot remember to check the tag on his clothes before putting them on? (“The tag goes in the back” and “the heel is on the bottom” are constant refrains at our house as he still puts his clothes on backward as often as not.)

Why can he effortlessly tell us the order that all fifty states joined the United States, but only arduously tell us four things about his day at school?

Why does he like to write alphabet letters all day long (including those in the Hebrew alphabet), yet will protest all day long if you ask him to write one sentence?

Why does he read well beyond his grade level, but often cannot answer seemingly easy questions about why a character in a story did something?

Why can he chatter on about birthdays of states, yet clam up when we ask him simple yes/no questions?

How can he have so much energy all day when he hardly ever sleeps through the night?

Why does he enjoy running very fast, but does not want to ride a bicycle even very slowly?

Why did he learn multiplication in a day, when he hasn’t learned how to blow his nose after years of trying?

Why does he usually have such a fun-loving personality, yet get incredibly upset over the most seemingly inconsequential things?

The quick answer to all of these questions, I suppose, is autism.

From moment to moment, I can be in complete awe or totally frustrated by what my son can and cannot do. Such is the paradox of autism.

Thursday, November 18, 2010

Countdown to Level 2

My son’s therapeutic school uses a level system where students earn more privileges as they advance to the next level. When students first enter the school, they start at Level 1. When they reach Level 5, they may be considered ready to transition back to their home school.

As the school handbook describes, “the system is designed to teach students the relationship between maintaining positive behaviors and their opportunities to learn in a less restrictive situation. Thus, the level system is an educational instrument to teach students that socially competent behaviors lead to success, independence, and self actualization.” They also state that “as children become more competent, they become more motivated to further achieve. (The school) creates opportunities for students to succeed while learning to overcome adversity; thus attaining achievement and building resiliency. By enhancing the motivation to succeed, we work to lessen the fear of failure.”

My son started at the school in February, and he is still at Level 1. There are several criteria for advancing to Level 2, and Kai has met most of them, but he still has too many major incidents to qualify. There have been other students who started at the school after he did who made it to Level 2 quickly, but Kai usually has some type of incident about once a week and that is just too often.

With Kai’s love of numbers, he is usually motivated about the idea of getting to the next level (as on his typing software). However, he did not seem too excited about trying to get to Level 2 at school. I think that may have been because he thought it was too difficult for him.

But, he has had fewer incidents at school lately as he earned Student of the Week last week. Yesterday, we got an email from Kai’s social worker at school saying that Kai is getting very close to Level 2. If he has three more incident-free days, he will get there. They made a visual for him so that he can track the three days he has left. And now, finally, he seems excited and motivated to attain the next level.

If he makes it, it will happen on the last day of class before we have our Thanksgiving break. I am very thankful that my son is becoming more successful at school and motivated to further achieve.

To find out if Kai made it to Level 2, read The Countdown Ends.

Wednesday, November 17, 2010

Does Bento Spell Success at Lunch?

While I find breakfast to be stressful, my wife more often stresses out about our son’s lunch habits. You see, he frequently does not eat his lunch when he is at school.

My wife has tried to pack a variety of different things for Kai’s lunch – sandwiches, hot dogs, chicken, among other things – but Kai still too often comes home with a mostly uneaten lunch in his backpack. At school, we are not there to force encourage him to eat. And, as we know from breakfast, if we do not “encourage” him, he often will not eat.

So, lately my wife has been preparing the one thing we know that he will eat at school – Italian sausage in tomato sauce.

Now, we realize that having Italian sausage every day isn’t exactly the best thing for him. And so, my wife keeps coming up with new ways to try to get Kai to eat different things for lunch. Her latest attempt was to make his lunch fun by preparing it bento style.

Bento is a single-portion, packed meal that is common in Japanese cuisine. As I understand it, Japanese mothers frequently send their kids off to school with exquisitely beautiful bento lunches. These days, you can find many websites and blogs devoted to bento that give really creative ideas.

My wife put a lot of thought into making a special bento lunch just for Kai. Knowing his fascination with critters, she cut up pieces of weiners to look like miniature octopus. In addition to that, however, the best part was making the word “EAT” out of seaweed and putting it over white rice. Kai eats seaweed and rice at home at dinnertime. And, he loves letters. Surely, he would like this combination and laugh at finding a message from Mom spelled out in his lunch.

When he got home, we eagerly opened his backpack and checked to see if he had eaten all of his lunch. We opened it up and… our hearts sank. He did not eat even one bite.

We then checked out his point sheet that the school sends home every day. He had gotten a zero for lunch. Zero! How do you get a zero for lunch? We asked him what happened at lunchtime. Kai doesn’t answer questions very well, but he said something about how his lunch was “stupid.” He didn’t really explain it in much more detail, but my wife is pretty certain that when he opened up his lunchbox, he did not like what he saw and had a meltdown.

Not wanting him to have further incidents at lunchtime, she is again sending him to school with Italian sausage every day.

It is discouraging to pour your heart into a new idea, only to have it be resoundingly rejected by your son. Knowing my wife, she’s not going to give up, though. You see, she’s as stubborn about lunch as I am about breakfast.

Tuesday, November 16, 2010

Breakfast Battle

Breakfast is often a stressful time at our house.  Our son does not like to eat breakfast, whereas I am a firm believer in that familiar refrain that breakfast is the most important meal of the day. 

On weekends or school holidays, I am patient and gently encourage Kai to eat.  Over quite a long period of time, he will often eat most or all of what I think he should eat.  School days, however, are a completely different story.

With the clock ticking away, there is only a limited amount of time to get him to eat something before the cab comes to take him to school.  I’m usually pretty adamant (i.e. stubborn) that Kai eat something, and the gentle, patient approach does not seem to work well when time is of the essence,  Sometimes I will raise my voice or threaten to take away a preferred item or activity (“No video after school!”) in order to get him to eat. 

Before I became a dad, I admired the fathers I had known who never seemed to raise their voices with their kids.  They were able to get their kids to behave nicely without ever shouting at them.  That’s the kind of dad I wanted to be.  So, I feel a little disappointed in myself every time I fail in that way.

A few days ago, we had a particularly rough morning.  Kai was even more stubborn than usual about not wanting to eat, and I was likewise stubborn that he would.  As the standoff heightened, he told me, “I don’t want to be your dad anymore!” meaning, I think, that he didn’t want me to be his dad anymore. 

Despite his feelings toward me, I somehow managed to get him to eat a bit of his breakfast before the cab came. 

But, I was still a bit upset with him, and myself, as I prepared to walk him out to the driveway where his cab was waiting.  Just before we walked out the door, Kai turned toward me, gave me a big hug and said, “I love you anyway, Dad.” 

I shook my head in a combination of wonder and disbelief.  This sweet boy had melted my heart once again. 

“I love you, too, Kai,” I told him as I returned his big hug. 

Monday, November 15, 2010

Just Watching is Rewarding Enough

After his great week at school, we wanted to do something a little special with our son this weekend.  We gave him a couple of choices and he picked going to an arcade.

We had been there once before, a few weeks ago for a friend’s birthday party, so Kai was familiar with the games that were there.  After we entered this time, he quickly went over to the Mario Kart game.  For those not familiar, this is a popular video game where players race go-karts.  It is Kai’s favorite video game, though he never played it before and had no intention of playing it yesterday.

Instead, he just wanted to watch others play. 

Since it was Sunday, it was not very crowded when we got there.  No one was playing this game so Kai asked me to.  I have never been one for video games, and am pretty terrible at them.  Still, since this was his treat for doing well at school, I tried my best.  But, in the first game, I came in dead last. 

I asked Kai if he was sure that he did not want to play, and he confirmed that he did not want to.  He wanted me to play again so I popped in more coins and tried again.  Again, I was last. 

This went on for a little while, with the same result each time.  Finally, I had had enough.  Let’s play some skee-ball. “No.”  How about anything else?  “No.”

After a while, a little boy came to play on the adjacent Mario game.  He was smaller than Kai and his feet did not reach the pedals so his dad pressed those while the boy steered.  This boy was pretty good, certainly much better than I was, and he captured first place in his game.  Kai was happy for him and enjoyed watching him play.  I no longer felt obligated to keep playing myself. 

When that boy was done, we watched a little girl play.  And then another boy.  And so on.  We were in the arcade for about an hour and a half. 

Kai did not play a single game.

I am not exactly sure what his fascination is with this game.  Perhaps it is all the bright colors.  Certainly the timer and lap counter are huge attractions, though other games have numbers as well. 

As to why he never wanted to play himself, he later said that it was too hard.  For a boy who does not like to ride on a bicycle, the movement and controls of this game probably seem overwhelming.

At dinnertime, we asked him to tell us the most fun thing he did all day.  He said going to the arcade with Dad. 

I’m a bit perplexed that he would have so much fun just watching.  But, then I remember that I used to spend my Sunday afternoons just watching football on TV.  I’m not sure if that is the same thing for him.  I am just glad that he enjoyed his special treat.

Friday, November 12, 2010

Student of the Week

My son attends a school for kids who have had behavior issues at their previous school.  As such, the staff there is always working on reducing poor behaviors and encouraging the kids to make good choices.  Toward this, they use positive reinforcement quite a bit.  One thing they do every week, on Friday afternoons, is to hold a “community meeting” that is attended by the whole school.  The gathering celebrates all of the kids, but particularly recognizes the ones who did especially well that week.

One of the things I really like about my son is that he seems genuinely happy for the kids who are recognized at the meetings.  Although Kai has a hard time answering our questions, he can usually tell us which students in his class were honored.  He almost always tells us what a “good job” they did that week.  

The community meetings themselves are not exactly easy on Kai.  Being outside his own classroom, with a larger group of people, in an environment that can seem chaotic, it is not easy for him to stay regulated.  I’ve previously described how he often displays anxiety about not being first to PE, lunch or other activities that take him outside the classroom.  With the community meeting, this can be magnified even more.  So, it is something of a minor triumph when he can sit nicely and remain calm during the entire meeting.

At today’s community meeting, Kai was able to stay regulated throughout.  But, it was noteworthy for another reason, too – Kai was awarded Student of the Week for his class. 

The certificate noted that Kai has been safe all week, completed his schoolwork, and was able to accept his spot in line every day of the week.  All of his teachers and aides signed the certificate, adding, “Kai, we are proud of the progress you are making!” 

So are Mom and Dad.

Good job, Kai!

Parent-Teacher Conference Maps Progress

We had our first official parent-teacher conference with our son’s first grade teacher the other day. It was nice to get in the classroom, see the work our son has been doing, and talk to his teacher about it.

We already knew that Kai is doing well in math, but it was good to see the actual work he has been doing.

We also knew that he loves science, and it was fun to hear the teacher describe his enthusiasm for the class. For the last couple of weeks, Kai was upset because he was being pulled out of science class for his one-on-one time with his school therapist. Although he later got to make up the material, his anxiety about missing out and not being first (to learn, in this case) manifested itself. At the conference, they told us that they have worked it out so he will be able to partake in science with his classmates.

As far as reading goes, while Kai can read words well past his grade level, his comprehension is lacking. So, they are starting to slow down, asking him more inference questions and forcing him to think more about what he read. We will try to work on that more at home, too.

One of Kai’s least favorite classes is writing. It’s interesting that he hates writing, or rather, that it is a “non-preferred activity” as the school calls it, even though he loves writing the alphabet. In fact, his teacher brought to light the latest expression of his passion for writing letters. She said that when Kai saw her with a book about cursive letters, he kept pestering her until she let him have it. Now, he is learning how to write in cursive on his own during break time.

What he does not like to do, however, is write sentences that answer questions or express his thoughts. For instance, the students keep a journal that they write in several times a week. Looking at his journal, it is easy to tell that he does not like this activity. When he writes the alphabet, his writing is beautiful. But, the writing in his journal was incredibly sloppy, indicating that he was in a hurry to get it over or was angry about having to write. And, the things he puts down often do not make sense. I think he finds it frustrating because communicating, both verbally and in writing, is still hard for him.

But, they are working with him on it and he is making some progress. One recent entry was actually coherent. “I love going to Virginia because I visit Dads family. When I am there I will have fun.” My favorite part, though, was the map he drew to accompany the words. He drew the states that we will travel through to get from Illinois to Virginia, and the highway numbers of the roads we will drive on in each state: 94 in Illinois, 90 in Indiana, 90 and 80 in Ohio, 76 in Pennsylvania, and 70 in Maryland and Virginia.

Frankly, I was shocked. No, not that he remembered all the highways. I was shocked that he did not write out all the exit numbers, too.
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