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.

Thursday, November 11, 2010

Celebrating Washington’s Birthday

Today is Washington’s birthday. 

What?  Oh yes, I know that today is Veteran’s Day.  And a hearty and sincere thank you to all veterans who served our country and defended liberty for us all.  We will never forget your brave service. 

But, in addition to being Veteran’s Day, it is Washington’s birthday.  What?  Some of you are telling me that George Washington was born in February.  You are right.  But, I’m not talking about George Washington.  I am talking about the state of Washington.

Washington joined the United States on this date in 1889.  That means that it is 121 years old today.  How do I know this?  Why, my son told me, of course.

I previously wrote about his love of numbers, and how he memorized the order in which each state became part of the USA.  These days Kai has developed an interest in celebrating the exact date in which each state joined the union.  Today happens to be Washington’s “birthday.”

At breakfast time, he was talking all about Washington.  I think he was almost as excited about celebrating this state’s birthday as he was about celebrating Mom’s.  He took out his deck of playing cards which has descriptions of all 50 states and pulled out the Washington card.  He even wanted me to go out and get balloons.  I don’t think I’ll do that, but maybe we can make a birthday card later on.

I just hope that we can have a nice celebration without him being stung by a bee like on Mom’s birthday.

By the way, for those of you who didn’t know about Washington’s birthday, I want to give you a heads up that Oklahoma will turn 103 on the 16th.    

Wednesday, November 10, 2010

Update on Low Barometric Pressure and Autism

A couple of weeks ago, I questioned whether low barometric pressure affects kids with autism. My son had his worst day of school on the day that barometer readings in our area hit record low levels.

Since then, I did more research to see if there really was a correlation between the barometric pressure and my son’s performance at school. I found a website that gives the historical barometric levels for any zip code. I recorded the information and compared it to the scores that my son receives on his point-sheet at school every day.

The results were eye popping.

Over the last seven weeks, Kai has averaged ten points better (on a 100-point scale) on days where the barometer reading is 29.90 or above than on days when it is lower than 29.90. On days with high barometric pressure, he is averaging over 90 points, which means that he is pretty focused and behaving well much of the day. However, on the days with lower pressure, he is barely averaging 80 points, which means that he is losing a lot of points for things like not staying on task and not following directions, as well as more severe behavioral issues.

We will have to see if the trends hold up over a longer period of time, but I think it is clear that the possibility of a strong correlation exists.

So, what can we do about it?

If we know that the day could be challenging, we will try to give the school a heads up. Perhaps they can be especially proactive with giving Kai sensory breaks throughout the day. Also, we are still having him wear Under Armour compression shirts; on low pressure days, it may be worth trying a double layer to see if the extra pressure against his body makes up for the lower barometric pressure.

I don’t know if that will suffice. But being aware of a potential problem is the first step toward solving it. As always, I’m open to your ideas.

Tuesday, November 9, 2010

Pinocchio: An Allegory of Our Son’s Battle with Autism

My son’s favorite DVD this week is the classic Disney animated feature, Pinocchio. For those of you who have forgotten much of the story as I did, Pinocchio is the tale of a wooden puppet that is brought to life by a blue fairy. He has a chance to become a real boy, but first, must prove himself to be brave, truthful and unselfish. The bulk of the movie involves Pinocchio’s encounters with all sorts of unsavory characters who try to take advantage of his innocence. He sometimes falls prey to temptations and he has to learn the difference between right and wrong.

We gave our son a book version of the story many months ago but he never really got into it. Last week, however, Kai opened it up and we read it several times at bedtime. Then, over the weekend, he wanted to get the movie from the library and he’s watched it every day since.

I’ve been trying to figure out why he likes Pinocchio so much. As my son is also a huge fan of Charlie Brown, there are the common characteristics of good-hearted little boys. And, even as Kai laughs hysterically at the funny things that happen to Pinocchio, I think he also sees himself in these characters. In the case of Pinocchio, Kai shares the wide-eyed wonder of a boy who is exploring his world as if he were noticing it for the first time.

To me, my son’s similarity with Pinocchio goes even beyond this shared innocence. I see Pinocchio as symbolic of the journey that Kai has made in his battle against autism.

When Kai was two years old, he did not respond to people, almost as if he were made of wood and did not hear you. As he progressed with his ABA therapy, he did start to respond. But, then his responses were often robotic, giving only the exact answers he was taught to say, somewhat akin to a puppet being controlled by the puppeteer. Now, he is speaking more freely and his transformation is not unlike Pinocchio’s becoming “a real boy.”

At the beginning of the movie, Jiminy Cricket sings, “when you wish upon a star, dreams come true.” In the end, Pinocchio proved himself to be brave, truthful, and unselfish and became “a real boy.”

Our son is proving himself every day and our dreams are coming true, too.

Monday, November 8, 2010

Setting a Scream-Free Example

My wife and I went for a health screening on Saturday morning. It was the highlight of our son’s weekend.

Kai has been seeing DAN (Defeat Autism Now!) doctors for over four years. As the doctors need results from blood tests, that means that for over four years now, a couple times per year, we endure the ordeal of helping to draw blood from our son.

It would be a severe understatement to say that Kai is not a good patient when it comes to blood tests. He hates being stuck with a needle and begins screaming and fighting as soon as the nurses start to prep him. “I WANT TO LEAVE RIGHT NOW! I WANT TO GO HOME!” The whole process involves four people. Three of us – me, my wife, and a nurse –try to hold his body still, while another nurse tries to collect the blood.

Despite three of us holding him down, Kai can sometimes still move a bit. That makes it hard for the nurse to find a vein and stick the needle. Often, Kai’s body is so tense that the nurse does not have success on the first attempt and has to stick him multiple times. Of course, that only prolongs his agony and increases his protests. His blood-curdling screams reverb throughout the entire clinic. “AAAHHHH! ALL DONE! STOP! STOP IT RIGHT NOW!” I’m surprised that any other patients stick around after hearing the torture my son is put through.

The whole thing takes about ten times longer than if he just cooperated. At the end, he is relieved, but not any more so than my wife and I.

On Saturday, it was our turn to get “pinched” as he calls it. He looked forward to it the whole week and couldn’t have been more delighted. He said that he would hold our hands to comfort us in what surely would be a very painful experience for us.

He was very happy as we walked into the clinic. I went first. He eagerly stood beside me so he could get a close look. At each step, he asked the nurse, “Now what are you doing?” Kai seemed genuinely interested to see the process. I think when it is happening to him, he is fighting too much to see what is going on.

When it came time for the “pinching,” he put his arm around me. It was over in just a minute or so. I used the moment as a teaching opportunity and explained how it went so fast because I did not fight.

Mom went next and Kai comforted her as well. Before long, we were all done.

I don’t know if this will help him to stay calm next time. But, at least now he knows that he not the only one to get “pinched.” And, that Mom and Dad can do it without screaming. Not a bad little field trip for a Saturday morning.

Friday, November 5, 2010

Insurance Coverage of Occupational Therapy Denied

In Illinois, a law was enacted two years ago that requires health insurance companies to provide coverage for the treatment of autism spectrum disorders. When the law was passed, it gave hope to many families that insurance would cover more of the therapy that so many of our kids need. But, from my perspective, the reality is that insurance companies are looking even harder for ways to get out of their obligations.

In our most recent case, my son’s insurance company recently stopped covering his occupational therapy (OT) after paying for a couple of years. The reason, they said, is that the therapy was considered maintenance and not restorative, which means that they are saying that my son was not showing progress as a result of his therapy so they were not going to continue paying for it.

As he was actually making progress, we appealed the decision and submitted reports from his occupational therapist that showed how he had improved in every area of focus in his therapy. I figured that it was a no-brainer and that we would win the appeal. My wife, who is usually the one to deal with the insurance company, was skeptical.

She was right.

Yesterday, we got the letter which stated that they will not overturn the previous decision to deny coverage. This time, however, they gave a different reason. They said that the therapy was “not proven to be effective based on the peer review publications available.”

I’m going to have to do more research to find out what type of evidence there is that “proves” that this therapy is effective. But, I can already tell you that occupational therapy is common among kids with autism. And, regardless of whether or not there are studies that show how effective OT is with other kids, the truth is that my son has improved in all areas his therapist is working on with him. That alone should be enough.

The Illinois law says that “treatment for autism spectrum disorders shall include the following care… for an individual diagnosed with autism spectrum disorder…therapeutic care, including behavioral, speech, occupational, and physical therapies that provide treatment in the following areas:… (v) motor planning, and (vi) sensory processing.”

Under those criteria, my son's therapy definitely qualifies. Is it too much to ask that the insurance company comply with the law?

Living with autism can be hard enough sometimes. Having to constantly battle insurance companies adds unnecessary stress.

Enough already. Let my son have the therapy he needs.

Thursday, November 4, 2010

Learning the Hebrew Alphabet? Bingo!

There are many things about my son that fascinate me. One particular area of bemusement is the fact that Kai learned the Hebrew alphabet on his own despite my wife and I having absolutely no knowledge of it.

It all started last spring when Kai selected a set of plastic, magnetic alphabet characters to play with at the place he goes for therapy every week. Mixed within the regular letters were funny-looking characters which turned out to be letters of the Hebrew alphabet. Kai was fascinated. Different letters? He loved the alphabet! And now there were new letters that he could learn!

Later that day, on our weekly dad-and-son trip to the library, I found a book that taught the Hebrew letters to kids. Kai could not wait to get home so that he could begin memorizing them. He spent the rest of the weekend writing out the letters, and cutting some of them out to tape onto the wall.

I did a bit of research and found out that there is an Aleph Bet song, similar to our own ABC song, that helps kids learn the Hebrew alphabet. (Aleph and bet are the first two letters of the Hebrew alphabet, somewhat akin to our A and B.) The song is a catchy tune, and we found a couple of different versions on YouTube that Kai watched over and over.

When Kai’s Bubbe found out that he was so into learning the Hebrew alphabet, she sent him his own set of magnetic Hebrew letters, a coloring book, stickers, and a bingo game that all helped him learn the alphabet even more.

Between the books, song, magnetic letters, and all the rest, Kai was in alphabet heaven. It was only a matter of days before he knew all of the Hebrew letters.

One day, Kai took the magnetic letters to school for show-and-tell. His teacher reported that it was his best show-and-tell as he ended up leading the other students in a rousing rendition of the Aleph Bet song.

Kai’s interest in the Hebrew alphabet waned a bit in the past few months. But, just this week, it’s been reignited. Our regular routine in the evening is that we play a game after he practices piano and before he goes to bed. This week, he’s selected Aleph Bet bingo every night.

My wife and I enjoy playing games with Kai, but Aleph Bet bingo is really challenging for us. We’ve come to recognize a few letters, but many of the Hebrew letters seem similar to each other and many times we have no idea what we are looking at. We are constantly asking Kai, “What letter is this?” He is pretty much always able to tell us.

I don’t know where this knowledge of the Hebrew alphabet will lead. Thus far, he does not show any interest in taking it further to learn how to read or speak Hebrew. But, just the fact that he knows the alphabet makes me shake my head and smile.

Fascinating. Simply fascinating.

Here’s one version of the Aleph Bet song that Kai loves to watch:

Wednesday, November 3, 2010

When Jealousy is a Good Thing

My son had a play date with a couple other boys from his school last week. 

Kai does not play much with other kids, or even show much interest in being with them for the most part, but it is important to work on his social skills so my wife periodically sets up these play dates for him.

In the past, we’ve put Kai into therapeutic social groups.  These small groups are facilitated by a therapist and help teach kids like him how to communicate and interact with each other.  These days, he has group time at school once a week, but we haven’t otherwise been able to find a social group that fits his schedule.  So, we do what we can on our own. 

On this occasion, the play date started out at a Chuck E. Cheese’s and they later went to a McDonald’s that had a Play Place.  Typically, when Kai goes to these places, he either plays by himself or just wants to watch others play.  There’s actually relatively little social interaction between him and the other kids that he is there with. 

This time, though, he actually seemed happy to be hanging around with his friends.  While not fully capable of interacting with them, he wanted to be close and kept chasing them around. 

At some point after they were at the McDonald’s, Kai got upset.  He started saying mean words and didn’t settle down so my wife decided that she better bring him home.  At home, we spoke with him and were able to piece together that he was upset because the other boys were more interested in playing with each other than with him.  He was jealous.

The other boys are good kids, and we are sure that they were not purposely excluding Kai.  But, they are both older than him, more mature, and better communicators.   It would make sense that they would enjoy each others company more than that of a boy who is not at their same level. And, physically, being smaller and less agile, Kai was probably having trouble keeping up as they were going through the Play Place.

Jealousy is not a good quality in people.  But in my son’s case, I sometimes wasn’t sure that he would ever care enough about being with other children to develop a feeling of jealousy.  That he wants to interact with the other kids and gets upset when he cannot is a good sign. 

I can’t give him the desire to interact with other kids.  But, I can deal with the jealousy.  I’ll take that trade. 

Tuesday, November 2, 2010

GFCF Peanut Butter Cup a Real Treat

When we put our son on a gluten-free, casein free (GFCF) diet, my wife often lamented that Kai would never truly experience the joy of eating that other kids do because he would not get to eat the foods that most kids enjoy. Never is this more evident than at Halloween.

Over the years, my wife has found many ways to give Kai treats. For instance, she now makes a GFCF pizza with a gluten-free crust and soy cheese that does a decent job of replicating the taste of real pizza. And, she’s found some really tasty GFCF cookies and pretzels that are as yummy as the “real” ones.

But, when it comes to Halloween, we still felt like Kai missed out. All of the popular chocolate candies that most kids love are made with dairy and contain casein. Sure, he can have Smarties and Skittles, and those are fine if you’re not craving something sweet. But, they’re not made of chocolate and I don’t think too many kids would rank them among their top Halloween choices.

My personal favorite is peanut butter cups. There is something about that combination of chocolate and peanut butter that is almost heavenly. As I discussed this with my wife last week, she said that she would try to make a GFCF version of it for Kai.

So, this past Saturday afternoon, she tried it out. The day before, she had gotten everything we needed including a pan normally used to make mini muffins, the mini cupcake cups to lay in the pan, and some dairy-free chocolate. She already had SunButter, which is made from sunflower seeds and looks, smells, and tastes just like peanut butter. It is an awesome substitute for anyone who is allergic or sensitive to peanuts.

These days, Kai often enjoys helping Mom in the kitchen and he was curious to find out about this peanut butter cup that Dad was raving about. The aroma of chocolate filled the air as Mom heated it up and then carefully poured a little into each mini cup. Then she scooped a bit of SunButter into each cup. Finally, she topped each cup off with a little more chocolate, and then put the pan into the refrigerator. About a half hour later, they were ready to eat.

Kai took the first bite. He didn’t say anything. He took another bite, and another after that. When he finished the first one, he asked for another. Finally, he declared that it was great. Later that day, after he had eaten dinner, Kai asked for more for dessert. My wife and I tried it as well. The SunButter was gooey so it was messy to eat, but the taste was as awesome as the real peanut butter cups that I love.

I know that it seems a little silly to find so much joy over your child being able to eat chocolate candy. And, in the big scheme of things, it certainly is not as important as doing well at school, or learning to cope with waiting, or practicing social interactions. But, when you can give your son something that most other kids can take for granted, it feels like you are giving him a little bit of happiness. And that is a real treat.

Monday, November 1, 2010

Tricks-or-Treat Is Not a Walk in the Park

The way our son looked forward to trick-or-treating this year reminded me of Linus’ anticipation of the Great Pumpkin. Though, perhaps I just had Peanuts on my mind since Kai would be going as Charlie Brown.

We had told Kai that, in our community, tricks-or-treat would start at 3 PM. Now, when it comes to time, Kai is very precise. So, as we were driving home from his special needs’ sports camp yesterday afternoon, as the clock in the car turned to 2:00, he gave us notice that it was “one hour until trick-or-treating starts.” At 2:15, he gave us the 45 minute warning.

As 3 o’clock drew nearer, Kai’s excitement grew. We knew that there would be no stopping him from being on his way at 3:00 sharp, so we made sure to snap a few pictures before then. Sure enough, as soon as the clock struck three, we were off and running. And, at the first several houses we went to, everyone commented that “Charlie Brown” was the first trick-or-treater.

At each house, my wife and I stayed back toward the street while Kai went up to the door and rang the bell. Sometimes – more than a few times – he forgot to say “trick-or-treat” and we had to remind him to do so at the next stop. Other times – more than a few times – he did not say “thank you” and we had to remind him to do so at the next stop.

I had to remind myself that for a boy with autism who has difficulty socializing, going up to strangers’ houses by himself, ringing their bell, and saying “trick or treat” is not something that comes naturally or easily. With all the progress that Kai has made, we sometimes forget that he still struggles with basic conversation skills. I had to tell myself to be patient as we reminded him for the fourth and fifth and sixth and seventh time to say “thank you.”

There were also times when friendly folks would speak to “Charlie Brown” or ask a simple question and Kai would not respond. Part of me wanted to explain to them, “He’s not being unfriendly; he has autism and doesn’t have the ability to answer you.” But, instead, I would either answer for him or just give a simple “thank you.”

After trick-or-treating down several blocks, Kai wanted to go back home. By then, we had gone to more houses than on any previous Halloween and I think all the interaction with people was draining for him. At home, we snacked and played for a while and then he wanted to go back out. But, he didn’t want to go trick-or-treating anymore. Rather, he and I walked about a mile to his new favorite park while Mom prepared dinner. We stayed there until it got dark and then walked home.

Over dinner, we watched “It’s the Great Pumpkin, Charlie Brown” and then Kai took all the candy he had received and put them into a jack-o-lantern piƱata. He loved pounding on it until it broke open. Then, we sorted the candy into two piles: one was gluten-free/casein-free candy that he could have, and the other was for Mom and Dad. He enjoyed going through his pile and picked out a couple to eat. I think his favorite was the gummy set of teeth.

In the Peanuts TV special, Charlie Brown ends up with a bag full of rocks and the Great Pumpkin never comes. I wish I could get inside Kai’s head to find out if trick-or-treating lived up to his anticipation, or felt kind of like a bag of rocks. I have a feeling that, for him, just going to the park was as much fun and less stressful as the trick-or-treating.

Still, when we compare this Halloween to the past, we see how far that Kai has come. It was only two years ago that he only went to three houses and we had no expectations that he would say anything to anyone. Now, he’s going all around the neighborhood and raised the bar on our expectations about his communication. For us, that’s as good as a visit by the Great Pumpkin himself.

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