Preparing for a Birthday Party

My son’s birthday isn’t until next Tuesday, but we are having a party for him tomorrow. It is the first time in three years that we inviting anyone other than family. That we are doing this speaks to the progress Kai has made in the last three years. But that doesn’t mean that we aren’t more than a little nervous about it.

Three years ago, we invited his classmates from the early childhood program he was in at that time. He was excited about his birthday in the week leading up to it, but on the day of the party, he became strangely quiet. When it began, he clung to Mom and seemed sad most of the time. He did not enjoy the party at all and it wasn’t until everyone left that his mood brightened. We thought the whole thing was overwhelming for him and decided that we should not have a party like this again.

In the past year, however, he’s shown a much better ability to deal with environments that were difficult for him before. We feel more comfortable taking him grocery shopping, and going to restaurants. His behavior at friends’ birthday parties has been stellar, which is a far cry from a couple of years ago.

And so, we felt comfortable with giving it another shot. My wife, especially, is always looking to give Kai all the fun experiences that other kids have. She wanted him to have the kind of party that he’s been invited to. And so, she’s put a lot of work into planning everything. Between the food, decorations, goodie bags, and activities, there’s a lot to get ready.

After experimenting with several designs, my wife decided on sunflowers with ladybugs for the GFCF cupcakes we will serve. She got a piñata, and colorful plastic buckets for the kids to put their goodies in. We put Kai to work, too. He wrote each child’s name on their bucket, and helped to fill the piñata. The main entertainment will be an animal show, where the kids will be able to see and touch about a dozen animals including snakes, tarantulas, tortoises, and rabbits.

There will be fourteen kids in all, a bit more than we originally expected. All but two have special needs. We are guessing that most of the parents will stay for the party, though they do not have to. So, it will be a pretty big crowd.

I put together a social story to try to prep Kai for what will happen. As he likes to be aware of the schedule for everything, we will create one for the party and post it.

So, everything is set. Kai is very excited.

We can’t help but be a little nervous. But, we’ve prepared as best we can. Let’s party.

Major Reward, Major Incidents

Yesterday, my son’s school had a special breakfast for all of the students that had no major incidents throughout the month of January. It was the first time Kai qualified.

Of course, we had no idea there was to be such an occasion. The school had told him but, like with almost everything that happens at school, he did not say a word about it to us.

The first we heard of it was when his social worker at school called us in the afternoon.

To tell us that he had two major incidents yesterday.

Yes, it is quite ironic that my son had his worst day at school in quite awhile on the same day he was honored for having his best month.

To add to the irony, the breakfast itself was what set him off on his bad day as it was a change from his usual routine. He did not want to go to the breakfast. He just wanted to go to his classroom where he is comfortable. He whined and protested and eventually did go to the breakfast. For a little while.

But, he was off to a cranky start to the day.

At lunchtime, when a new TA (teaching assistant) read a book with him instead of his usual TA, he got even more upset, and had his first major incident of the day. Does it really matter who reads with him? Apparently it does to Kai.

Later on, yet another change in his usual schedule led to his worst incident in a long time. He got violent, used angry words, and had to be physically restrained to keep from hurting himself and others.

It was an unusual day with so many changes to his schedule, but life is like that sometimes. How do we get him to deal with it?

Well, one thing’s for sure. We won’t have to worry about a special breakfast throwing him off next month.

Insurance Fight Concludes, For Now

Five months ago, our son’s insurance stopped coverage of his occupational therapy saying that they did not feel that he was showing progress.

We immediately appealed the decision. We submitted data from our OT provider that showed that our son actually was making progress.

Two months later, they informed us that our appeal was denied. This time, it was on the basis that most of his occupational therapy was really sensory integration therapy, and that was method of therapy was not proven to be effective.

We quickly submitted another appeal, this time providing copies of research that indicated that sensory integration therapy was effective. We also included a letter from my son's therapist that clarified that sensory integration was just a small part of the therapy she did. And, I noted that a recently passed Illinois law provides for coverage of occupational therapy for persons with autism.

About a month later, I followed up to see if they were close to a decision. They claimed not to have received our appeal documents. It was sent through certified mail so we had signature confirmation that they received it. Oh, they said, in that case we will look for it. Two days later, I called again and they claimed to still be looking for it. Don’t bother, I said. I’ll send it over again. I implored that our appeal be put on top of the pile, given how much time had already passed. Oh sure, they said.

A month later, still no decision. The people I could reach on the phone had no idea when the decision would be made.

Yesterday, three months after we originally submitted our latest appeal, we finally got the decision. It was apparent that our re-sent letter had gone to the bottom of the pile. They took nearly the full 60 days after receiving it the second time to make a decision.

The result: they are still denying coverage. The therapy is not medically necessary, they said. The Illinois law regarding autism coverage does not apply to them, they pointed out.

The denial of coverage is a huge disappointment as, contrary to what they claim, we believe that the therapy was very beneficial to our son. What makes it even tougher, though, is all this bull that you have to go through when dealing with insurance issues. Is it genuine incompetence on their part to lose appeal letters, change the reasons for their denials, and to seemingly ignore all the information you send? Or, are they really crafty and just hoping to wear you down? Perhaps it is the arrogance of knowing that they can get away with it.

Whatever the reason, they win on this one. We are certain that another appeal will not change their minds. And, we are not willing to risk the ordeal and cost of litigation. So, we are throwing in the towel on this fight.

I expect, though, that this won’t be the last fight we have with them. My son’s speech therapy will probably be under scrutiny in a few months. And, we won't be throwing in the towel on that one.

A New Month, Back to Reality

With my son averaging a major incident at school every week or so for most of the past year, it was a major accomplishment that he went the entire month of January without one. Unfortunately, we are now in a new month.

With the blizzard closing school for two days last week, Kai has only been in school for two and a half days so far this month. But, he already has had two major incidents.

His latest one yesterday may have been brought on because one of his favorite classes, math, was canceled in place of a special program on conservation. Disruption in the routine has always been difficult for Kai, and, despite the progress he has made, is still something that can throw him off.

By now we are used to the rollercoaster ride where one moment Kai is amazing us with something new and wonderful that shows the progress he is making, while in another moment does something that demonstrates that our work is far from complete.

But, despite all of our experience with these ups and downs, I still have to admit that it was particularly disappointing to find out about his latest incident. After the amazing month he had, I was beginning to hope that good behavior at school would become the norm. Now, I feel like January was just some sort of aberration.

If I could take a step back, I probably would understand that Kai’s performance in January was not a fluke. It is a sign of great progress. But, progress doesn’t mean perfection. And there will still be many more bumps on the road.

I am having difficulty dealing with these high-low reversals. Holding steady in the face of storms; seeing the light through the darkness of the moment. This is my challenge.

Super Sunday – Almost

My son had shown little interest in watching sports with me until a couple of weeks ago when we watched the Chicago Bears played the Green Bay Packers in the NFC championship game. At that time, Kai was very revved up and determined to see the entire game.

I wondered if that was a one-time event or if he would be just as interested in watching the Super Bowl. Being a football fan, and an American, I had to see the big game, of course. So, I’ve been prepping him for the past two weeks, telling him how fun it would be and that we would have a party as we watched in the family room. My wife said we would have chips and salsa and chili which are some of Kai’s favorites.

As we neared game time, everything was going according to plan. Kai was very excited. He took his bath in the afternoon so he wouldn’t have to miss any of the action. He even was looking forward to the commercials and the halftime show. When we turned on the TV and brought out the chips, he was all set. Everything was perfect.

Well, not quite.

I started to feel sick. By the time the game started, I had a fever and felt achy all over. Although I think that Christina Aguilera’s excruciating rendition of the national anthem was what really pushed me over the edge.

I sat on the far end of the couch away from my wife and son and tried my best to show some enthusiasm game. But, I felt too miserable. I wanted to at least stay up for the halftime show but I couldn’t even do that.

Kai, however, had a magnificent time. My wife tells me that he watched until it was his bedtime. His favorite part was the halftime show as he danced enthusiastically along with the music.

I’m sorry I missed it. But, it makes me feel a little better knowing that next football season I may be able to enjoy more father-and-son bonding on Sunday afternoons.

Now, all we need are the owners and players to reach an agreement so that we can have a season.

Would Tiger Mom Be Able To Raise a Child with Autism?

Amy Chua’s new book, “Battle Hymn of the Tiger Mother,” has created quite a stir the past few weeks.  Her memoir of raising her children “the Chinese way” has drawn much criticism over the harsh methods she used, and sparked debate on the relative merits of Asian versus Western methods of parenting.

She illustrates her toughness in one notorious incident where she describes how she once rejected her young daughter’s homemade birthday card, saying she wanted “a better one – one that you’ve put some thought and effort into.” 

Another example is the time when she forced her then seven year old daughter to play the piano for several hours until she mastered a particularly difficult piece.  Tiger Mom yelled, threatened, and called her daughter names.  She said that her house became a war zone as she refused to let her daughter get up from the piano, even to eat or use the bathroom.  Eventually, the girl did successfully play the piece, and felt so good about doing so that she was beaming and wanted to play the piece over and over again. 

Ms. Chua argues that letting her daughter give up would have hurt her self esteem.  Instead, her daughter gained confidence by accomplishing something she thought she could not do. 

She goes on to say that Western parents are lax, and more likely to try to build self-esteem by praising a child, even for a mediocre performance, whereas Chinese parents do so by setting high expectations and then forcing their children to work hard to meet those expectations.  She also believes that parents need to be tough about overriding their kids’ desires as parents always know what is best for their children. 

Being Asian-American, I have some personal insight into the Asian approach.  As with the Tiger Mom, my parents set high expectations for me and held me accountable.  From the time I was in elementary school, a grade less than an “A” was unacceptable with my parents.  I still recall the time my fifth grade teacher asked me how my parents had reacted to my report card.  I think she expected that they would be full of praise as I had gotten mostly As except for one B.  I’ll never forget the look of horror on her face when I told her that I was grounded for a month.

But when it comes to my own parenting style, even before I had a child, I was determined that I would use a more Western approach than that of my parents.  I believed in the value of teaching a child to make good choices because it is the right thing to do, not out of fear of being punished. 

Of course, once I actually became a father, I learned a lot about parenting.  And being the father of a boy with autism, I have really been challenged.

But all this commotion over the Tiger Mom has me wondering how she would do if her child had autism.  Would she be able to handle it?  Would her methods be effective? 

I think she might have to adjust her methods:

Set high expectations, within reason:  I have no problem with setting high expectations, even for a child with autism.  But these expectations should be set within the context of each child’s capabilities.  I believe that every child can be taught to always try to do their best, and that it is up to us as parents to do this. 

I think the bigger problem for Tiger Mom would be in dealing with her own expectations.  Would she be able to accept that her child will not become a prodigy no matter how much she pushed, prodded, and punished them?  Moms (and dads) who are far less demanding than Tiger Mom struggle mightily with this.

Understand, not command:  Tiger Mom does not strike me as the understanding type.  But, a child with autism behaves differently than a neurotypical child for a number of reasons – they may be sensory-related, neurological, or biological.  Regardless of the reason, the differences are such that children with autism need to be taught things that come naturally for most neurotypical children.  Commanding kids to do something they are not able to do is futile.  A parent needs to have an understanding of why their child with autism does what he or she does.  Only with understanding can they teach their kids the things they need to learn.

Teach, not taunt:  Kids with autism need to be taught so many more things than typical kids.  Seemingly little things like learning how to blow their nose can be difficult.  Major things like learning how to communicate, and how to cope are constant, ongoing processes.  You can’t spend hours haranguing your kids to become piano virtuosos when there is so much else to work on.  Also, patience is essential.  And this is where I think Tiger Mom would have to really change her ways.  Kids with autism are more likely to feel inadequate or insecure as it is.  They don’t need their parents piling on by calling them names. 

Soothe, not provoke:  While Tiger Mom may have been comfortable in making her house a war zone when forcing her daughter to play piano, she never had to deal with an autistic child who went from zero to sixty in one second, and then stayed in a state of eruption for a very long time.  I’m willing to bet that even Tiger Mom would opt to try to de-escalate matters after going through that a few times.  That is not to say that your child should never have to pay any consequences for their poor choices.  There are times when you will take a stand and deal with the upset it causes.  But, there will also be plenty of times when your child may have a meltdown when it has nothing to do with setting a limit.  No matter the cause, it does not help to pour gasoline on an already-explosive situation.  Your child needs to calm down before he can be taught anything.

Eastern methods? Western methods? Both!:  When my son was two years old and not talking or responding at all, we began an extensive program of ABA therapy for him.  ABA is somewhat akin to the Eastern approach to teaching in that it relies on repetition and regimented drills to teach kids with autism things that other children learn naturally.  In my son’s case, as with many others, it worked.  He learned quite a lot.  But, one of the drawbacks of the approach is that speech and communication can be somewhat robotic.  The child often gives the response he has been taught, rather than one that comes spontaneously.  But, when you consider that previously our son did not speak at all, that seemed acceptable. 

After a time, though, we went away from ABA to a DIR/Floortime model of therapy instead. This is a far less structured approach. There are no drills. Rather, the basic tenet is to follow the kids’ lead in play. The belief is that this will lead to interactions and more natural communication. This Floortime approach also worked with our son as he interacts more than ever and his speech is not robotic at all now. Somehow, I have a hard time picturing Tiger Mom doing Floortime with her kids, especially the part about letting them lead.     

Conclusion:
So, what do we make of all this? Would Tiger Mom be a good parent of a child with autism?

We can debate Tiger Mom’s methods, but I think almost all would agree that she is a very determined woman who wants what is best for her children. If she did have a child with autism, I think that quality would serve her well and help her to persevere. But, could she handle having a child with autism? Wouldn’t she have a lot to learn? To that, I ask, how many of us felt truly prepared to be the parent of an autistic child?

Mr. Chatterbox

With schools closed one more day, our son is home again.

With Kai being home all day yesterday, not only because there was no school but also because we were shut in from all of his after-school therapies and activities, we really noticed how much he is talking these days.  He is quite the chatterbox. 

Most of what he says probably would not make much sense to most people.  Heck, half the time we’re not even sure what he is talking about. 

For instance, last night he was going on and on about how one Ugly Doll is at level one of Snap Circuits while another one is at level two.  In his mind, I’m sure this all made perfect sense, but we had difficulty making heads or tails of it.

While he is talking a lot, most of it really cannot be considered “conversation.”  While Kai will go for hours talking about capacitors and resistors, it’s almost impossible to get three words from him when you ask him a simple question. 

And, while he seems to enjoy talking to us, it is almost irrelevant to him whether we listen or not.  He will just keep chattering regardless of whether or not we respond at all.

Sometimes, all this chatter drives my wife crazy.  “Kai, can you eat your dinner quietly?” she said last night.  I was amused as I still recall the days when we would have given anything to hear him say a few words.   

I remember that shortly after Kai started talking, he said a few words here and there but mostly was babbling a bunch of nonsensical sounds.  My wife was skeptical, but I was sure that it was a sign that he would start speaking soon.  That time, I turned out to be right.  Now, with all this chattering, I can’t help but think that it too is a good sign; an indication that we will be able to have more in-depth conversations with him one day.

So, is this all crazy talk?  Or, is it a hopeful indication of “real” conversations to come?  What do you think?

Snow Day

The Blizzard of 2011, as it will now forever be known, has dumped about 20 inches of snow on us so far, and it is still coming down.  It is officially the fifth highest snow total in Chicago history, though it may make the top three before it is all done. 

When I was a kid, there was nothing better than an unexpected day off from school in the middle of winter.   And, so it is with our son today.  So far, he’s extremely excited about playing with his Electronic Snap Circuits, and making a pizza with Mom later on. 

I’ll be doing a lot of shoveling today.  And later on the temperatures will drop as the forecasts are calling for minus 40 degree wind chills tonight. 

But, it’s a special day.  Let’s have some fun!

Update at 4:00 PM:  We got Kai to go outside this afternoon and he had a blast.  See some of the pictures on our Facebook page. 

End of a Dream Marks a New Beginning

Today marks the one year anniversary of our son attending a therapeutic day school.

A year ago, we were an emotional wreck. Our dreams of having our son mainstreamed at our neighborhood school had ended. And with that, we felt disappointment, failure, hopelessness.

But, as the old proverb says, every end is a new beginning.

In retrospect, the actual end of the dream did not come suddenly. It was more like a slow-motion crash that you see happening, but are powerless to stop.

Throughout the first several months of Kai’s kindergarten year, we received near-daily incident reports from his school about some inappropriate behavior he had engaged in. He wasn’t listening to his teacher or following directions. He was trying to hurt himself or someone else. He was shouting or otherwise acting out.

Beyond the behavior issues, Kai was making almost no academic progress. While all agreed that he was a very bright kid, you couldn’t tell by the work, or lack thereof, that he did in school every day.

The pressure we felt was enormous.

There was the pressure we felt from others. My wife, who took Kai to school every day, suffered the disapproving glare of the other parents. Whether real or imagined, she felt that they were looking at her and thinking, “here is the terrible mother and her bad kid.” I was certain that not all of the other mothers felt that way, but was disheartened when I found out that some did indeed complain to the principal that our son was in their kids’ class.

We also had a lot of self-imposed pressure. We thought that if our son didn’t do well in school now, he would never be self-sufficient in life. It was as if his entire future rested on whether he could succeed as a kindergartener. With each passing day, as incidents continued to occur, the dream was being crushed, and the pressure kept building.

Finally, about halfway through the school year, the school “suggested” that we find alternative placement. It was the end of the dream. But, over time, we would discover that the pressure was gone as well.

Our immediate concern, though, was to address the “what now?” question. We were discouraged to find out how few viable school alternatives there were. While we found a number of schools that specialized in kids with autism, all seemed to be more appropriate for kids that had more severe disabilities than Kai. For higher-functioning kids, there were few choices.

We ended up visiting five schools, a mix of both private and public. One school’s approach was at odds with that of our son’s therapeutic providers. Another had the right philosophy, but did not have kids that were developmentally similar to our son. Another was too far away, we decided.

We ended up going with a public school that did not specialize in kids with autism; rather, it is a school for kids with behavior issues. When we were first asked to consider this school, we had trepidations about sending our son there. A school for kids with behavior issues? Our son isn’t a bad kid like those kids. Won’t he learn bad behavior from all of them? Wouldn’t he be better off at a place where the kids are well-behaved so they can model the appropriate behavior for him? I do realize that we felt a similar sort of prejudice about these kids as the parents at our neighborhood school had about our son.

Nevertheless, we addressed our concerns with the program coordinator of the school. He first asked us how it was working out for our son in our neighborhood school where kids are modeling good behavior for Kai. We had to acknowledge that it was not working out so well. He then explained that kids like our son cannot learn proper behaviors simply by watching their peers. They need more help. They need to be taught how to cope, and how to make better choices. This therapeutic school has the staff and supports in place to do this, he said. He went on to explain that any poor choices that the kids may sometimes make are not examples to be followed, but, rather, are used as learning opportunities for all the kids.

And so, Kai started going there last February.

It turned out to be just the place for him. The other kids, we soon found out, weren’t any more “bad” than our son. Some have ADHD, some are bipolar. Some have autism. But, like our son, they are bright kids who have struggled with maintaining appropriate behaviors.

The staff at this school are well trained, expert at dealing with kids with special needs, especially those with the issues our son has. He does excellent academic work there. He gets speech therapy. He sees a social worker twice a week. He gets help on developing social skills. And, most importantly, he is learning how to control his impulses and to make better choices.

As we turn the calendar, I want to point out something else that is notable. While today is Kai’s first anniversary at school, yesterday marked the completion of his first whole month of school without a major incident.

What a difference a year makes.

New readers may want to read my earlier three-part series:
Part 1: The dream of mainstreaming fulfilled, then broken
Part 2: Transitioning to a therapeutic school
Part 3: Comparing the mainstream school to the therapeutic school

An Introduction to Harry Potter: Just the Start?

My son’s school apparently showed the first Harry Potter movie to his class last week. I say apparently as we are never quite sure of the things Kai tells us about school. He doesn’t explain things very well and still has trouble answering questions. Sometimes we are just not sure what to believe.

But, this one appears to be true. He told us that he wanted to watch it again for our weekly video night so we got it on our regular trip to the library this weekend. When we all watched it together on Saturday night, we could tell that he had seen it before.

This is a first in that, prior to this, he has only been interested in animated films or those that featured Muppets, or Scarecrows and Cowardly Lions, or other non-humans. While there are all sorts of fanciful creatures in the Harry Potter films, this is first movie that features mostly human characters that Kai has shown any interest in.

This is actually not the first interest Kai has shown in the Harry Potter series. About two years ago, he discovered my set of the Harry Potter books and took them all off the bookshelf and flipped through each one. I’m fairly certain that his interest was due to the number on the cover of each book that indicates its position in the series. As we watched the movie, he again went to the bookshelf to take another look at the books. He told us how many chapters each book had.

I am hoping that one day he will actually read them. While the movies are enjoyable, I want my son to experience the joy of being totally immersed into a different world that only a good book can do.

However, I’ve often wondered if his mind will ever allow him to enjoy a fictional tale with a plot as imaginative and complex as the Harry Potter ones are. I have heard that some kids with autism have trouble with stories that are so far from the literal and concrete world that is comfortable for them. While Kai’s reading skills are advanced for his age, his comprehension is not as comparable, and he does sometimes seem to prefer factual, straightforward books like the non-fiction books about the planets that we get from the library every week.

Even with the movie, I wonder how much he understood. He was entertained by the funnier scenes such as when Harry’s invitation to Hogwarts was delivered by owls to the Dursley’s house. But, when it came to the more serious parts of the story, he seemed less interested.

Still, when I was his age, I was just reading “Dick and Jane” books. So, I guess I can be patient and see where his reading will take him in three or four years. Like the young Harry, Kai is full of surprises. So, I’m not about to give up hope on his literacy skills.

Preparing for a GFCF Birthday

With my son’s birthday coming up in a few weeks, my wife is getting ready.

Up until this year, we’ve only had small celebrations with mostly just family members. Kai gets excited about his birthday but, in the past, he’s gotten overwhelmed by the whole thing. So, we thought it best to keep things low key.

But, he seems to be handling things better overall these days, so we decided to invite some kids over this year and see how it goes. All of his classmates have been invited, as well as a few other kids that he knows.

We were touched to find out from one of the moms that this was the first time that her daughter had been invited to a birthday party. A child with special needs, she’s apparently been excluded from parties in the past. She said that her daughter was very excited to get our invitation and wanted to rush out to Toys R Us at that very moment to buy Kai’s present.

My wife is planning to make the birthday cake. Actually, the cake will be cupcakes. She found a book called “Hello, Cupcake!” that give a lot of really fun ideas on cool ways to decorate cupcakes. As the cover of the book says, these are “irresistibly playful creations that anyone can make.” Of course, claims like “anyone can make” don’t always turn out to be so easy. And so, my wife decided not to wait for Kai’s birthday to try out a few creations. She has been practicing.

I am biased, but I think that she’s been successful in making them look pretty good. You can see for yourself from the picture below.

What is particularly special about these cupcakes is that they are gluten-free and casein-free. Our son has been GFCF for four and a half years now, so of course we wanted these cupcakes to fit within the diet. While the book does not give GFCF recipes, my wife has found that it is not too difficult to adapt their recipes. It is incredible how many gluten-free products are on the market these days; certainly there are a lot more than when we started the diet. For cupcakes, my wife often uses a brand called Pamela’s, but she found that even a well-known brand like Betty Crocker makes a good gluten-free mix.

Then, for the design part, she substitutes the book’s choices with GFCF products. For instance, in the one shown here, she used dairy-free chocolate and replaced M&Ms with Skittles or other gluten-free candies. Not only do these GFCF cupcakes look good, but I can personally vouch that they taste great, too.

At one time, we thought that being on a GFCF diet meant that our son would not be able to experience fun or enjoyment when it came to foods and eating. We are finding out that this just does not have to be the case. As Martha Stewart would say, that is a good thing.

Speed Limits Revisited

My son has taken a renewed interest in speed limit signs.

A few months ago, I wrote how my wife pointed out a speed limit sign on the road they travel to Kai’s karate class. Kai has a lot of anxiety about being late to places so he is always telling us to drive very fast no matter where we go. On that occasion, my wife pointed out a speed limit sign to explain why she could not go as fast as he wanted her to. He seemed settled by that explanation. For a few days.

But, it wasn’t too long before he had forgotten about speed limits and was again berating us for driving too slowly. Tuesdays are particularly difficult as the time between his swim lesson and karate class is short, so he is especially stressed out.

This past Tuesday, as my wife was trying to get Kai over to his karate class on time, the flashing lights of a police car came up behind her. She was pulled over for speeding.

I’ve often imagined what it might be like if I were to ever be pulled over by a police officer while Kai was in the car. I could easily picture a situation where Kai would be very upset and start yelling at the officer that I was “mean” or a “bad driver.” It’s not farfetched to think that he would say these things to a police officer as he says things like that to us quite frequently when he is frustrated. I imagined being hauled off to jail as I futilely tried to explain the situation.

But, on this occasion, my wife reported that Kai stayed quiet while the officer spoke with her. The officer let her off with a warning that will turn into a ticket if she is caught speeding again within twelve months.

After the officer left, my wife explained to Kai why they were pulled over. She was speeding, she said, and that is against the law. He cannot yell at her to drive faster anymore, she told him. He understood, he said.

The next day, as they were driving to his after-school activity, Kai helpfully pointed out every speed limit sign that they passed. When I say “helpfully,” of course I mean “enough to drive you crazy.”

"It’s 35 now, Mom.” “You have to slow down to 30.” “Go 55.” “Watch out; it’s 25."

So now, in place of the back-seat driver that he used to be, we have a back-seat cop. Hmmm, I guess that is an improvement.

Bizarro Kai

My son came home after his karate class yesterday afternoon and declared that he wanted a haircut.  My son asking for a haircut?  I must still be in the same Bizarro World from Sunday when I insisted that we go to the library while Kai resisted because he didn’t want to miss part of the football game.

Longtime readers may recall when I wrote about how difficult haircut time is at our house.  The usual routine is that Kai resists and says he does not want a haircut.  After much encouragement (or *ahem* threats), he finally sits in the chair.  But, even then, his squirming makes it difficult to cut his hair nicely. 

Recently, however, it hasn’t been as bad.  Taking his grandmother Dell’s suggestion, we began using a cape to keep the cut hairs from sticking to his body.  That drastically reduced the itch factor, and cut down on his squirming.  My wife also tried to make the experience more fun.  She “hired” him to be her assistant as she clipped my hair before she got to his.  It’s funny; this kid who hates to clean up his toys loves to clean up the cut, fallen hair. 

Even so, we had never before seen him volunteer to get a haircut.

But, last night, he was so excited about getting to the haircuts that he didn’t even want to eat dessert.  Before he finished his dinner, he grabbed the dustpan and brush and was ready to go.  We popped some music on the CD player and Mom’s Barber Shop was open once again. 

Kai did his assistant barber’s duties nicely.  Then, he sat still and cooperated beautifully when it was his turn.

I don’t know how long this Bizarro World will last, but I am going to enjoy it while it does.

Note: For those of you not familiar with American pop culture, Bizarro World refers to a fictional place where everything is the opposite of how they should be. 

Saturday Mornings at the Skating Rink: The Joy of Watching

For the past four months, Saturday mornings has been one of my favorite times of the week. That is when my son takes an ice skating class for kids with special needs.

The program is outstanding in so many ways. First of all, it is great deal – $35 for 12 sessions including skate rental. While getting something worthwhile for a cheap price is always a good thing, it is particularly valued by parents of kids with special needs. As therapies and medical expenses are so expensive, it is great to have something that doesn’t cost so much for a change.

The low cost, as well as the general success of the program, hinges on volunteers who give their time to work with the kids. While there are a handful of adults who organize everything, the heart of the program are the two dozen or so junior high and high school girls who work with the kids and teach them to skate.

My favorite part of the class is watching: watching the volunteers as they encourage and help the kids move across the ice; watching the kids’ faces as they gain confidence and discover that they, too, can skate. But, most especially, I like watching the faces of the other parents. Their faces show the almost indescribable joy they feel as they see their child enjoying an activity that, at one time, most thought was beyond their capabilities.

It is a feeling that I can relate to.

When Kai was younger, he seemed incredibly clumsy. He was uncoordinated. He lacked core strength. When we got him into occupational therapy, we found out that many kids with autism have challenges with body awareness, muscle weakness, motor planning, and impaired balance.

I did not think that I would see the day that Kai would be able to skate like other kids.

This past Saturday, he made one lap around the rink, side by side with his helper, but without holding her hand. He immediately came off the ice because he wanted to tell me that he had skated 150 steps all by himself. I whooped with joy. After two more laps, he came off again. He had taken 250 steps, he said proudly. “A new record!” I proclaimed, as he quickly returned to the ice to skate more laps.

Alyse, his young helper, was beaming as she told me that Kai was doing a fantastic job. He doesn’t need to skate with her anymore, she said. He is ready to skate on his own.

Bear Down

The Chicago Bears played the Green Bay Packers yesterday in what was one of the most anticipated football games in recent Chicago sports history. 

Before yesterday, my son had shown little interest in watching sports on television.  I think a lot of dads try to infuse their own love of sports onto their sons.  I haven’t had too much success at it with Kai, however, though I usually don’t force it on him too much. 

But, I really wanted to see yesterday’s game, so I set expectations that Dad would be watching football most of the afternoon.  Kai said that he would watch, too.  My wife set up lunch in the family room to make it more of a special event. 

As game-time neared, Kai got more and more excited.  But, I was still skeptical about how long he would be interested in watching.  Before, he would watch for short periods.  Numbers, such as the score and clock, would attract his attention, but it usually doesn’t last very long.  So, I almost never see more than a quarter or so of any game.

When this game started, I pointed out all the numbers in an attempt to maintain his interest: 1^st quarter; 1^st down; 10 yards to go; 35 yard line; 65 yards to go for a touchdown.  There are a lot of numbers in football.

As the Bears fell behind quickly, my enthusiasm for the game diminished a bit.  But, Kai still wanted to watch.

At halftime, the plan was to run out for our weekly trip to the library.  Kai protested that we would miss the game.  I insisted that we go.  What Bizarro World did I step into?  But, we had movies that were due back so we went to the library.  But, he was too angry to look for any books or movies.  He didn’t even want to find any Kidz Bop CDs.

He was angry that we ended up missing a few minutes of the game, but he settled down quickly.  For most of the second half, he was more interested in doodling numbers than in watching the game intently.  But, he still looked up when I cheered as the Bears mounted a comeback.

In the end, the Bears fell short.  But, I got to see most exciting part when I normally would be doing something else with Kai.  Maybe we can still share a father-and-son love of sports.

Now, can anyone find the Bears a better quarterback?

Signs of Growth

My son lost three of his front teeth a few weeks ago. Now it looks like his new teeth may be coming in soon. Is this the last vestiges of his cute kid phase?

Kai now tips the scale at over 50 pounds. He is almost four feet tall. Even for those of us who see him every day, we can tell that he has grown a lot in the past year. It really is no longer accurate to say that he is a little kid. I think that he is aware of it, too.

We have been giving Kai vitamin B12 since we first started seeing a DAN (Defeat Autism Now!) doctor shortly after he was diagnosed at age two. The B12 is administered via injections.

When Kai was younger, about an hour after he fell asleep at night, my wife and I would sneak quietly into his room. I’d hold the flashlight while she pulled back his pajamas and stuck the needle in his rear end. I was amazed that he usually did not wake up.

Over the past couple of years, we’ve been injecting him while he was still awake, right after bath time. Of course, for a kid who is terrified of being stuck with a needle for his periodic blood tests, this means having to deal with his fears and overcoming his resistance on a weekly basis.

We quickly developed a regular routine on “pinching” days, as Kai calls it. After his bath, he dashes out of the bathroom, runs to the dining room, hides behind the table, and then I get him and carry him to his bedroom where I let him resist for a few moments before holding him still so that Mom can inject him. Although he acts like he is scared, I think he actually likes the whole routine. If I don’t go to the dining room immediately, he calls for me to come get him. Then, as I’m carrying him, he laughs and seems to treat the whole thing like a fun, silly game.

Now that he is getting so big, however, it is becoming harder for me to carry him. Also, as he is nearly seven years old, I figured that it was about time that he handle the process a bit more maturely. So, I’ve been telling him that when he turns seven, I would no longer carry him to his bedroom. When it came time for this week’s injection, with his birthday yet a month away, he told me that this would be the last time I would carry him.

His permanent teeth are coming in. The B12 routine won’t be quite as playful. Our son is surely growing up before our very eyes.

Time to Teach Manners

It is, of course, important to teach all children good manners, but I wonder if this is another concept that is more difficult for kids with autism to grasp. They often have trouble reading social cues and generally seem to be more direct in their language, sometimes embarrassingly so. In my son’s case, in addition to all this, his love of numbers and fixation on time seem to add to his social miscues.

When Kai’s grandfather visited us a few days ago, we were reminded of our son’s deficits when it comes to social etiquette. When Kai greeted Papa at the door, we had to prompt him to say hello. Totally unprompted, however, he asked, “What time are you leaving?”

While my wife and I were mildly mortified, we knew that, despite how the question sounded, Kai really was very happy to see his grandfather. We recognized that he asked because schedules are vitally important to him. He is constantly asking what time we are going somewhere, or how many minutes he has to do something.

We explained to him that it is not polite to ask people what time they are planning to leave as it may make them feel like you do not want them to be here. I don’t know if he understood that. I’m guessing that his need to know schedules means that we will probably have to reinforce this with him for quite awhile. It may also make sense to proactively tell him how long someone is expected to stay so that he doesn’t have to ask them, though I want him to learn to not to ask these types of questions, and not always have to provide a work-around for him.

Before, he used to always ask visitors, “What year were you born?” We explained that some people are sensitive about their age and do not want to tell others when they were born. I don’t think Kai got that one at all. He loves numbers and years and dates; why would anyone not want to tell him the year they were born? He eventually stopped asking that question, though he is probably still perplexed as to why he shouldn’t.

Fortunately, Papa is never taken aback by anything Kai says. I think he actually welcomes his questions as it opens up conversation with his grandson, something that did not happen back when Kai did not speak.

And so, we ended up having a nice visit. Papa played Wii for the first time and Kai “knocked him out” in boxing and beat him in bowling as well. We all laughed and had a great time and Kai even lost track of time for a little while.

However, Kai did not forget that today is Papa’s birthday. And, so, we send out hearty birthday wishes. Happy birthday, Papa!

Imagine That

Lack of imaginative play is often cited as one of the characteristics of autism. But, I wonder if there is a difference between having the ability to do what most people would consider imaginative play, and actually having a good imagination.

I happen to think my son is one of the more creative people I know. He is certainly much more creative than I am. However, he doesn’t express his creativity in the way people traditionally think.

Kai does not often engage in make-believe play the way most kids do. He does not play doctor or pretend to be an astronaut or become Harry Potter like other kids might. He does not emulate sports stars or TV characters.

But he is constantly coming up with new ideas and doing things differently.

Last week, for instance, he created “soccer bowling” in which we kicked a soccer ball down our hallway to knock down bowling pins.

This past weekend, he grabbed all of our beach toys and we went out to the “snow beach,” a.k.a. our front yard, to build snow castles. His most creative moment came after we were finished building it when I told him that I did not want him to knock down the castle. For Kai, the best part of making a castle is knocking it down. So, he inventively told me that our creation was no longer a castle. It was, he said, nine Hanukkah candles. Then, he went to each mound of snow, the “candles,” and methodically crushed them to simulate the candles burning down.

Sometimes it is hard for someone like me who is much more “by the book” to keep up with Kai’s creativity.

For instance, he often likes to add his own rules on top of the regular rules of a game. So, when we play Crazy Eights, for example, anybody who plays a Crazy Eight card will have to perform some task that Kai has chosen for that game. I’d rather just play the game the regular way, but will follow his lead and go with the flow for him.

At times, though, his creativity seems to be just an excuse for infusing his love of numbers into a game. In Crazy Eights, as each card is played, he punches in all the numbers into a calculator and adds it up as we go along. The winner is awarded the final total of points from all of his addition.

About the closest Kai comes to typical imaginative play is being the teacher to his Ugly Doll students. Lately, he is enjoying teaching his Ugly pals how to build Electronic Snap Circuits, the science toy that he got for Christmas.

But, often, even this imaginative play becomes atypical. Instead of teaching the Ugly Dolls, he would talk to the electrical parts themselves as if they were real. “Hello, Mr. Diode.” “Come here, Mr. Lamp Socket.”

So, I ask, is that weird, or is it creative? Is it any more silly than a typical child talking to their inanimate doll or stuffed animal? Should we be correcting him, and let him know that you don’t talk to lamp sockets? Or, is it indicative of how creative his mind is?

I wonder if Picasso’s parents ever asked those questions.

Week 2 Incentive: Chuck E. Cheese’s

Our son returned to school this morning after the 3-day holiday weekend. He’s had two good weeks of school to begin the new year, a welcome start after the rocky days we had toward the end of last year.

Last week, I wrote about how we set up an incentive program to encourage our son to have good and safe weeks at school. The program rewards good behavior in general, but puts particular emphasis on safe behavior, meaning when Kai does not try to hurt himself, his peers, or any of the school staff.

His reward the first week was dinner at a Mexican restaurant. Last week, the incentive was a trip to Chuck E. Cheese’s.

It was interesting to see how motivated he was to earn the reward. When he had two really good days to start the week, he was well aware of it. On Tuesday evening, he told my wife that he had seven safe days, which accounted for the five safe days he had to start the year, as well as the two good days to begin the second week.

By Wednesday afternoon, he was already telling us that we would go to Chuck E. Cheese’s on Friday evening. We were happy to know that he was staying aware of his behavior, and that he was so confident that he would be able to maintain his good behavior for the remainder of the week.

He was right to be confident, as he finished his week as strongly as he started.

And so, over the weekend, we went to Chuck E Cheese’s. It had been nearly a year since our last visit. It can get loud, but Kai does not seem especially annoyed by the noise. But, sometimes we wonder if he is having any fun. He says he is too scared to play most of the games. Instead, he insists on either me or Mom playing as he watches, almost hypnotically. His favorite games to watch are car racing games. And so, my wife and I played and played while my son watched and watched. Some of the games made us dizzy and we did not want to play any longer. Kai was then content to watch other kids play.

Before we left, we did get him to play some skee ball. But that was it.

Still, when we were leaving, he said he had a good time. So, Chuck E. Cheese’s turned out to be a good reward – it was highly motivating and he ended up enjoying it.

Still, it is not something we want to do again anytime soon. And so, this week, the reward will be something different – a Pajama Sam computer game that was suggested to us quite some time ago by the director of the speech therapy clinic that Kai attends. We have been looking for a good excuse to give this to him, so we are hoping he has another good week.

Will an educational computer game be as motivating as Chuck E. Cheese’s? We will see.

Play Date a Great Time for Parents, Too

It is very unusual for us to go over to friends’ houses so we really enjoyed our visit with A & J on Saturday evening.

A & J have two boys on the spectrum. My wife and I are in awe that they can keep things so together when we have such difficulty with just our one son. But, it’s not like they are Super Nanny or anything like that. They are regular folks who are struggling with the same, or in some cases, even more challenging issues than we are.

It is great to go there with Kai because we know they “get it.” We never feel self conscious about Kai’s behavior, and we feel comfortable knowing that their home has been “autism-proofed” for their kids.

But, mostly, it is just nice to spend time with good folks who share a common bond.

Their younger son, Timothy, is a year younger than Kai, but they could be twins in terms of their shared passion for numbers and letters. When Kai and Timothy were younger and each doing home therapy, our mutual therapist, Rochelle, suggested play dates for the two boys. We got the boys together, and Rochelle did a good job of facilitating some activities. But, at that time, most of whatever playing they did was in parallel, with little real interaction between the two.

With both kids now in school all day, busy therapy schedules, and the distance between our houses, Kai hasn’t been over to Timothy’s house in about a year. We were curious to see how they would play with each other now.

When we arrived, Timothy greeted us at the door. We knew that Kai was looking forward to the play date, and it was obvious that Timothy was also very happy. His parents said that he had been excited all day about Kai coming over.

They immediately went to the basement together. They started by jumping on the big trampoline. Of course, they had to throw some letters and numbers on it, and bounced along all together. Soon, they were on to other activities. I was amazed to see the amount of real interaction they had. They chased each other around, brought each other toys, and talked to each other. Frankly, I couldn’t understand a lot of what they were saying, and their play, such as it was, was more silliness than anything organized. But, they understood each other, and it was great to see them laughing and having fun.

I was thrilled to see our son actually enjoying playing with another child, rather than just playing with me or Mom. My wife and I were encouraged by the amount of interaction. Wow, he really is learning how to play with another child.

The bonus of all this is that, with the kids occupying themselves so nicely, we parents had some time to enjoy each other’s company as well. A delicious meal, good conversation, shared bond, and even some relaxing moments; we couldn’t have hoped for a better time.

For some parents, this kind of evening must seem pretty routine. But, for us, this was a very special treat.

Best of the Best, Edition 2: Social & Play Skills

This month's Best of the Best looks at social and play skills for children with special needs. As Danette mentions, these skills are very difficult to teach and often leaves parents feeling confused and alone. Check out this interesting collection of perspectives from parents and professionals here.

For those of you visiting from BoB for the first time, welcome!

The Incredible 5-Point Scale

Our son’s school recently started using a book called The Incredible 5-Point Scale to help Kai understand and control his emotional reactions to everyday events.

As the title would imply, the basic element of the program is the use of 5-point scales to teach a child a range of possible emotional responses.  The scale is applicable for a variety of behaviors and can help a child express how he is feeling including describing things such as feelings of anger, anxiety levels, etc.  In the case of our son, differentiating between the varying levels of his distress, for instance, would be very helpful as he tends toward either ‘everything is fine’ or ‘I WANT TO HURT EVERYBODY’ with nothing in between.   

The concept of a numerical scale to express feelings is particularly helpful for kids who may lack the vocabulary to otherwise communicate their thoughts.  And, in my son’s case, any use of numbers as a communications tool would be highly interesting and motivating for him.

Kai’s school had already been using the concept of a 5-point scale, but this book takes it further.  The book explains how to apply the scale across many different situations.  It uses social stories to explain the range of emotions, and to teach what is appropriate under different circumstances. 

The school is introducing the concept with a voice scale.  On this scale, a 1 represents complete silence; 2 is a whisper, which is appropriate for places like the library; 3 is a normal inside voice; 4 is for loud play; and 5 is really, really loud, and is generally appropriate only for emergencies.

When the school began using this scale, they sent home a copy so that we could be consistent with it at home, too.  We received it on the day that we were going out to eat at the Mexican restaurant.  Before we went, we used the scale to explain the tone of voice that was appropriate for a restaurant.  At the restaurant, when Kai started to get a little loud, we referenced the scale as we reminded him to speak in a “2 Voice.”  He understood and immediately lowered his voice to a whisper.

Before, our admonishments for Kai to speak more softly seemed to fall on deaf ears.  That a simple system like this could have such an immediate impact is, well, it is incredible.

The Streak Ends

Joe DiMaggio’s 56-game hitting streak;

Brett Favre starting 297 games in a row;

Cal Ripken playing in 2,632 consecutive games;

My son sleeping through the night for eight straight nights;

These are the greatest streaks in history.

Okay, so that last one doesn’t quite match up to the other feats. But, in our household, this streak was a big deal. It was Kai’s longest stretch of sleeping through the night in nearly four years.

Unfortunately, like the other momentous streaks, this one came to an end. At 2AM this morning, I heard the familiar knocking on our bedroom door. When I went out to see him, Kai began talking to himself in a very chipper voice. I was not in such good humor.

Still, it was a great run; more than a week of good sleep. For me, I mean.

What is frustrating, though, is that we can’t figure out why he slept so well. Being the analytical type who loves to dig into data about barometric pressure and compression shirts, it drives me crazy that we cannot come up with a good correlation for why Kai slept for eight nights, and now why he woke up last night.

Our son’s DAN (Defeat Autism Now!) doctor has been advising us on supplements to address Kai’s sleep issues for a long time now. Did the cumulative effects make a difference?

We started seeing an Applied Kinesiologist three months ago. Did his work kick in this past week?

Perhaps it was just the cold weather.

Not only did Kai sleep through the night, but, on many mornings, it took a lot of effort to wake him up. This kid, who for years was constantly waking me up much earlier than I wanted to get up, often told me, “Daddy, I want to sleep more.” Sorry, son, you have to get up now or you’ll be late for school.

The other day, as I pulled the blanket off his bed, he said, “Dad, you’re annoying me.” I was surprised how well he expressed himself. Hah, what a positively normal thing to say.

I would gladly take the tradeoff of struggling to get him to wake up versus having him awaken in the middle of the night.

Joe DiMaggio hit in 16 straight games right after his 56-game streak was broken. Let’s see if Kai can start another streak of sleeping through the night.

Toy Story Video Night

It was video night at our house on Sunday evening. That meant that we ate dinner in the family room while we watched a dvd movie together. We did that quite a bit while our son was on winter break, but don’t normally do it too often.

The video selection this time was Toy Story 3.

For those few of you who are not familiar, Toy Story 3 is the third of the computer-animated films that follow a group of toys that come to life whenever humans are not around.

When Kai was a toddler, he and Mom watched the original Toy Story many, many times. As he did not play with toys like other children, this Pixar movie, along with Finding Nemo and Shrek, was his favorite source of entertainment for a long time.

But, one day, Kai got scared of the Pixar movies.

You see, on one of our Dad-and-son trips to the library, I got The Lion King. We are not sure why, but Kai did not like it at all. He found it scary, perhaps because the father lion dies. He associated his feelings of being scared with the fact that the movie had the THX sound system logo at the beginning. I’m not sure if all Pixar movies use THX, but he thought so and that was enough. From then on, he did not want to watch any more Pixar movies. Toy Story 2 sat on our shelf, unwatched, for two years.

Last summer, when Toy Story 3 came out in theaters, we wanted to take Kai to see it but wanted to watch the second movie first. He had liked the 3D movie Despicable Me and thought he would enjoy seeing this latest Toy Story in 3D as well. Still, he refused.

On Christmas, Kai received a Toy Story green army man Lego from his cousin, and that reminded us that we still had not watched Toy Story 2. Okay, we told him, we can have another video night, but Mom gets to pick the movie. He relented, and reluctantly agreed to watch Toy Story 2.

He loved it!

There were many funny scenes that he laughed hysterically at many different times. Of course, then he wanted to watch it over and over again.

So, when we came across Toy Story 3 on our latest visit to the library, it was a no-brainer that we would have another video night.

This third movie had many poignant moments as it pondered the fate of the toys when their owner, Andy, had gotten too old to play with them anymore. I don’t know how much of that Kai really understood, as he seemed to enjoy the sillier scenes. However, unlike with The Lion King, he did not seem to be bothered by a particularly intense scene near the end.

For me, though, the parts of the story that really got to me were those that dealt with the passing of time, growing up, and moving on. I think parents would view this movie in the context of their own kids. For me and my wife, it is so hard to imagine how Kai might be when he becomes Andy’s age. Developmentally, will he be similar to other teens? Will he be getting ready to go to college? I have trouble picturing Kai even a month from now, let alone anything close to infinity and beyond.

So, I’m glad that Kai overcame his fear of the Pixar movies so that we could see these last two Toy Story films. Taken together, the three Toy Story movies are among my favorite films of all time. And that makes for a great video night.

A Rewarding Meal at a Mexican Restaurant

When our son was first diagnosed with autism, we were very fortunate to find Mary, a wonderful therapist who worked with Kai and directed our home therapy program. For awhile, Kai was doing 30 hours of intensive ABA therapy every week. Much of what I learned about dealing with a child with autism came from observing the work that Mary and her fellow therapists did with Kai.

Prior to becoming a parent myself, I was not a fan of the “bribery” method of getting your child to do something. It just felt wrong to have such a direct link between behavior and reward. Shouldn’t a child learn to do something just because it is the right thing to do?

And yet, one of the components of ABA therapy is to reward the child for positive behavior. When Kai first started ABA, the reward could be something as simple as getting to play with an attractive, new, sparkling object if he responded to Mary’s command to “come here.” When we saw that Kai actually responded, something we hadn’t seen before, we understood the power of positive reinforcement.

As time went on, the reward system was adapted as Kai’s abilities changed. When he mastered a behavior, the reward was faded. When he showed he was capable of doing more, he had to work harder before he was rewarded.

I grew to see that this type of positive reinforcement was not the same as the “bribery” concept that I thought would be so distasteful. If done properly, the focus still will be on teaching the child right and wrong, and not doing something just for the sake of a reward. Oftentimes, Kai’s reward consisted of enthusiastic praise for a job well done, rather than something more tangible. For a kid who soaked in praise, this was actually the best reward of all.

While my son no longer does ABA therapy, he still receives a lot of positive reinforcement for maintaining good behavior. As I mentioned before, his school uses a point sheet, among other things, and gives privileges to kids who perform up to expectations.

At home, in addition to continuing to regularly praise him when he does well, we sometimes will provide a special incentive for Kai. Last fall, when he was having major incidents at school nearly every week, we set up a reward system for him where he could earn a prize for a good, incident-free week of school. After we set up the program, he put together several good weeks in a row and finally made it to Level 2 at school.

With the onset of the new year, we had not intended on continuing that incentive. We thought we would see how he did at school for a few weeks before we decided whether or not to start it up again. But, we forgot to tell Kai that.

When he came home from school last Friday, he was filled with glee as he said he had another good day at school and that completed a good week. Therefore, we would go to a Mexican restaurant, which was to have been the next reward on the list. I tried to explain to him that we weren’t doing that right now. But, when my wife went to pick him up at school yesterday, the aide who brought him out said, “Kai was so happy at school today because you are going to a Mexican restaurant tonight. That is so nice!” When my wife relayed that story to me, we decided to go to the restaurant after all. I was a bit reluctant, but he did do a good job at school last week.

So, we went and…

Kai had a fabulous time. Before we went, we reminded him that he had to use his quiet voice. He got excited a few times, but he was mostly very well behaved. When the waiter came to take our drink orders, Kai was already telling him that he wanted a taco, and corn chips and salsa. And, though he got up from the table and walked around a few times, he ate the entire taco nicely, and an extra one, too, as well as most of our big basket of chips. He even waited somewhat patiently for Mom and Dad to finish eating. It was the best experience we ever had with him at a restaurant.

As we were leaving, he kept saying, “This is the best restaurant I’ve ever been to!”

It turned out to be a great reward for him.

But, you know something? Seeing him so well behaved and happy was a huge reward for me, too.

A Japanese Weekend, and OCDs

My wife grew up in Japan, but our son practices relatively few Japanese customs. Kai likes to eat rice and seaweed, and he learned the hiragana and katakana alphabets last year, and he goes to karate class, but that is about it.

This weekend, he expanded on this.

For breakfast on Saturday, my wife made ozoni, which is a clear, Japanese soup that is traditionally served at New Year’s. The soup contains mochi, which is rice cake, as well as kamaboko (Japanese processed fish cake), mitusba (a Japanese herb similar to parsley), chicken, and peel from yuzu (a citrus fruit).

Kai sipped the soup and liked it. It took a little more prodding, but then he tried the mochi. I wasn’t sure that he would like it as it has a bland taste and sticky texture, but my wife thought that he would since he likes rice so much. Of course, my wife was right. Kai loved the mochi and ate it all up. He even asked for more. After all of our battles over getting him to eat breakfast, I never would have thought that the most food he would eat in the morning would be from a traditional Japanese dish.

Later that day, Kai wanted to do origami. Origami is the traditional Japanese folk art of folding paper. In origami, colorful square pieces of paper are folded to make animals, flowers, or objects. The most well known origami model is the paper crane, but pretty much anything can be made.

Of course, Kai, being Kai, was not interested in making birds or animals or anything like that. He wanted to make letters.

And, so, with just a little help from Mom, he made all 26 letters of the alphabet. About a year ago, my wife tried to interest him in origami but, at that time, he was unable to do any of it by himself. This time, he followed the step-by-step instructions on a website. And, while he asked for Mom’s help on some of the more complex folds, he was able to do most of it himself.

We are happy that Kai gained a bit more exposure to his Japanese heritage this weekend. But, after thinking about it, we suspect that his desire to make an origami alphabet has less to do with an interest in Japanese and more to do with his OCD (Obsessive Compulsive Disorder) flaring up.

Like many kids with autism, Kai obsesses about things. His obsessions tend to center around letters and numbers. When we see his obsessions more frequently, we know that something is up. The past several days, besides the origami, he was writing letters and numbers and talking about them even more than usual. Our understanding is that an overgrowth of yeast in the gut can lead to an increase in these types of OCD symptoms. And, that taking antibiotics can increase yeast levels. Since Kai had been on an antibiotic for the past two weeks, it may not be a coincidence that he has been all things letters for a few days now. If we see that obsession die down as the antibiotic wears off, that will confirm our suspicions.

In the meantime, we’ll focus on the positives. The origami is great for his fine motor skills. And, hey, he even ate more mochi for breakfast this morning.

He Slept? He Slept!

My son slept through the night last night.  That makes three nights in a row. 

For most kids, that is no big deal.  But, as I wrote before, Kai frequently wakes up in the middle of the night.  Tests have shown that he has very high glutamate levels which can result in disruptive sleep and bring on high levels of anxiety.  Over the past three years, it has been rare for him to sleep through the night more than two or three times a month.

On those occasions when he does sleep, the next morning my wife will ask me if he really did sleep through the night.  Since it is such a rare occurrence, we can hardly believe it. 

This current three-night streak is the most consecutive nights Kai has slept since mid-October when he had a stretch where he slept through the night for five nights in a row.  That was his best streak since he was three years old.  The October streak occurred just after we had started seeing an Applied Kinesiologist to work with Kai, so we had hopes that his sleeping issues were finally solved.  But, soon after that, his sleep patterns reverted back and he’s had only about one good night of sleep a week since then. 

We’re not sure what might be causing this latest good period of sleep.  We recently stopped giving him a supplement which relieved adrenal fatigue. On yesterday’s visit with Kai’s DAN doctor, he reported that Kai’s cortisol levels have rebounded a bit so additional adrenal support may have stimulated his adrenaline too much.  So, the supplement could have been contributing to his sleep issues.

We shall see if the effects last.  In the past we have had other periods where his sleep improved for a few nights, only to return to sleeplessness again.

But, for now, I’m not going to lose sleep over how long this may last. 

More Stress in the Car

This week, I had several “opportunities” to be in the car with my son. While we’ve had a few successes in trying to deal with his back seat driving, being in the car with Kai can still be stressful at times.

The other day, I picked him up after school to take him to his weekly swim lesson, followed by driving him over to his karate class.

His swim instructor arrived a few minutes late. He also must have felt a little bad about canceling last week’s lesson as he asked if he could keep Kai a little longer than usual. The result was a really great lesson – for the first time without wearing a noodle and using a kickboard, Kai swam a little bit with his face in the water and did a good job with his breathing. But, it also meant that we left the pool too late to get to the karate class on time.

Punctuality is vital to Kai and he always has anxiety about being late. So, during the entire drive, he was constantly berating me, saying “You’re a bad driver, Daddy.” I tried to explain that we were going to be late because we left the pool late, and there was nothing I could do, but that we wouldn’t be more than a few minutes late. Such reasoning doesn’t yet appear to have much impact on him, as he responded, “You need to practice your driving more.”

The bright side is that at least the anxiety about being late took his mind off the tightness of his seat belt.

This afternoon, we’re driving up to Wisconsin for our periodic visit with his DAN (Defeat Autism Now!) doctor. In the meantime, if anybody needs me, I’ll be working on my lotus position.

Seat Belt Stress

Sometimes it feels like there is always something that bothers our son that wouldn’t bother anybody else. Lately, whenever I buckle Kai’s seat belt, he complains that it is not tight enough.

Of course, I always make sure that it is very tight, but no matter, Kai still seems paranoid that it should be even tighter. He gets upset and pulls on the belt himself to try to tighten it more. But it doesn’t tighten more since it is already very tight, and that only gets him more upset.

There have been times in the morning, after I strap him into the cab and close the door, that the cab driver motions me back over to check on his seat belt as he complains to her that it is not tight. I go over, give the already tight belt another tug, and assure him that it is very tight.

What is worse, though, is when, after I start driving, Kai starts screaming about his seat belt. Since I’m driving, there’s nothing I can do except reassure him that the belt is secure. Often, that is not good enough for him and he stays in a state of distress until we reach our destination. It makes for a very unpleasant drive.

These days, I proactively assure him that the belt is tight every time we get in the car. He still asks, though, “Daddy, is the belt tight?” I reassure him that it is.

I don’t know why this has become such an issue lately. I know that with his sensory issues, he craves deep pressure, so perhaps this is an extension of that feeling. But, I’m guessing it has more to do with some type of anxiety he is having, a feeling that he does not feel safe. I don’t know what brought it on and am not sure how to reduce it.

In raising a child with autism, I am learning that while we often focus on big issues like learning to socialize and maintaining a safe body, it is these seemingly little things that frequently cause so much stress in our daily lives.

Yes, similar to yesterday, this is another example about small irritations becoming a big deal.

I think I need to meditate some more.

Small Irritation, Big Deal

Our son, like many kids with autism, thrives on sameness, and a break from the routine often poses challenges. And so, after a long winter break, we wondered how Kai would do on his first day back in school. It turns out that he did pretty well.

Except for lunch.

It is so Kai-like that he got a nearly perfect score on his point sheet for every period except lunch. One of his teachers wrote us a note saying that Kai got frustrated when he had trouble opening the container that held his lunch. Several teachers tried to assist him, but he repeatedly rejected their help and instead got more upset. After that he refused to eat lunch.

On one hand, it is great that he had a good first day back at school overall. But, it is also frustrating that he would let such a seemingly small thing upset him so much. It would have taken no effort on his part to let someone help him. Instead, a minor irritation became a big deal.

We see the same type of thing happen at home and it can really exasperate us. I know that it is his autism that makes him behave this way, and that I need to patiently deal with it rather than get frustrated. But, I think sometimes even we parents are prone to having the same attitudes as those who do not notice our son’s silent disability.

We see a kid who is bright and happy and everything is fine. Until it isn’t. Something will happen that doesn’t make any sense to us. When we try to tell him to do things differently, and he does not seem to listen to us, it is easy to feel irritated.

In those moments, we probably need to employ the same coping strategies we are trying to teach him. Breathe deeply. Squeeze a ball. Count to 20. Step away and take a break. Don’t let a minor irritation become a big deal.

Hopefully, Kai will have an even better day at school today. Although he’s already had a not-so-small irritation when his cab came 20 minutes late this morning. I just hope he doesn’t let other small problems become big ones. And, hopefully that will be the case at home, too. But, just in case, I’m going to go and meditate.

Happy *Yawn* New Year

The stereotype of kids with autism is that they don’t want to interact with other people. But, that is not always true, and it is certainly not the case with our son. Kai does not like to play by himself. And since he doesn’t have any siblings, that means that he wants Mom and/or Dad to be with him all the time. So, after giving him near constant attention over much of winter break the past two weeks, my wife and I are more than ready for him to be back at school today.

Our New Year’s Eve was spent watching Kai’s favorite videos and playing one of the new games he got for Christmas. For Kai, getting to do all of those things was good enough, but staying up late to do them made it even better.

Kai often does not sleep well anyway, and the fact that he was so excited made it clear that he easily could have stayed up until midnight. But my wife and I were pooped. So, we told him that when the ball dropped on Times Square in New York, it would count as the new year even though it would only be 11PM where we live.

By the time Dick Clark came on our TV screen for the final countdown, Kai was revved up even more. For a kid who loves numbers, keeping track of time is a preferred activity. And so, counting down toward a whole new year is as exciting as it gets.

My wife and I still remember when we thought it would be a miracle if Kai ever spoke at all. And so, this night, as Kai held his toy microphone, we had huge smiles as he loudly counted down the final seconds of 2010 and proclaimed, “Happy New Year!”

We popped a bottle of sparkling apple-grape soda and toasted the new year. Then, it was off to bed. I don’t know about Kai, but I’m pretty sure that my wife and I were both sound asleep before it officially became 2011 in our area.

Some people believe that the way you start the new year sets the tone for how things will go that year. If that is true, we will be in a constant state of exhaustion in 2011. But then again, that was the case throughout 2010, so what else is new?