Monday, February 28, 2011

Toys? Games? Math!

My son was bored on Saturday afternoon. I suggested a game. No, he said, he did not want to play any games. How about building something with Legos? No. We can read. Or, maybe play some Wii. No and no.

Finally, Kai decided what he wanted to do.

He wanted to do math.

We went on the computer and I found a website that had math games. He played one that involved matching fractions, decimals and percents. Level 1 started out with easy problems, but by the time Kai got to Level 10, he was matching 5/6 with 83.3% and 11/12 with .917. He was able to answer that 1/400 = 0.25%, while 1/250 = 0.4%. I thought that was not bad for a boy who just turned seven years old.

Then he found out that there were math videos on the same website. Now the thought of watching videos about mathematics probably would not excite most kids, or most of you for that matter. But, Kai couldn’t be happier. That the topics were new to him, and probably well beyond the interest of most first graders, only seemed to intrigue him even more. The first one he wanted to watch was “What is a prime number?” The next one he selected was “What is prime factorization?” The third one was “What are divisibility rules?”

How many kids would choose to spend a Saturday afternoon learning about prime factorization? For that matter, how many grown ups even know what it is? I certainly wouldn’t have been able to tell you anything about it before watching these videos with my son.

And yet, Kai was spellbound. This boy, who can’t seem to sit in his chair for more than 90 seconds at a time while eating dinner, stayed seated the entire time while the narrator explained how to find the prime factorization of 525. This boy, whose mind never stops wandering when he is supposed to be doing his school homework, had a laser-like focus as he listened attentively to the divisibility rules for the numbers one through ten.

After he finished watching the videos, he finally got out of his seat – just long enough to get some paper and a pencil. Then, he was back in his chair as he replayed each one. On second viewing, he took notes the way a dedicated college student might in his favorite class.

When Mom got home later that afternoon, Kai couldn’t wait to go over his notes with her and to teach her all the exciting things he had learned. That night, he brought all of his math notes with him to bed, wanting them close by the way most kids would want to snuggle with a favorite stuffed animal.

But, who needs stuffed animals, or toys, or games when you have math?

By the way, for those of you interested, the prime factorization of 525 is 3 x 5 to the second power x 7. If you need more of an explanation, please contact my son.

If you are curious to see the math videos that fascinated my son, they can be found here.

Friday, February 25, 2011

Time for Sex Education?

My son disrobed Barbie yesterday.

He and my wife had their regular session with his psychotherapist yesterday afternoon. Lately, the sessions have been used to help my son learn to deal with emotions like sadness and disappointment.

Toward this, the therapist, “Marcy,” sometimes gives our son a Barbie doll to help work through his disappointment. The doll is supposed to represent the therapist, and the idea is that rather than being physically aggressive toward the person, Kai can talk to or take his frustrations out on the doll. For instance, he oftentimes likes to build a “jail” for “Little Marcy” to express the anger he feels for some limit that “Big Marcy” has set.

During yesterday’s session, Kai began taking off the doll’s clothing. Before long he was holding a naked Barbie. He seemed very curious and examined her closely. I understand that it is normal for kids to have such curiosity.

But, Kai went beyond looking at the doll. He asked Marcy to take off her clothes.

As you would expect from a professional, she was unflustered. She told my son that her body was private and she did not want to take off her clothes.

My wife’s reaction, and mine later when I heard about it, was quite different. Oh. My. God! Our son is asking people to take off their clothes!!!!!

It was bad enough when he was asking folks what year they were born or how old they were. But, this is a whole ‘nother matter. Is this going to become another regular routine of his? Ack!

Marcy suggested that it might be time for us to teach our son more about the human body, the differences between boys and girls, and even where babies come from. She said that there are books that can be used to help with this. She thought that once these things are taught, Kai’s curiosity would be satisfied for the next five years or so.

Now, I was raised in a home where my parents never talked to us about such things. But, I understand the value in teaching your child about the body and being able to have an open dialogue about sexuality. Still, that doesn’t mean that it will be easy.

My son just turned seven years old. What do we teach him now? How far do we go? What is more appropriate for later? Are there special issues in teaching a boy with autism that differ from teaching other children? I don’t even want to think about the stims he might have once he reaches puberty.

I knew all this would have to be addressed at some point. But, I suppose I had my head in the sand thinking that we wouldn’t have to worry about it for a few more years.

So, we need to prepare ourselves. While I try to calm down, can anyone suggest some resources that can help us?

Thursday, February 24, 2011

Finding a New Man for Mom

Yesterday’s homework assignment was particularly difficult for my son. He had to read a short story, tell four things that happened in the story, and then predict two things that have yet to occur. Predicting outcomes is often difficult for kids with autism, and that is no different with Kai.

When you ask him what might happen next in a story, he will usually say he does not know. And he does not like to guess. If you encourage him to try guessing, he sometimes will tell you something that already happened. But, mostly he just hates to be asked.

He wasn’t supposed to have this assignment for homework. He was supposed to have completed it in school. But, as near as we can tell, he protested and refused to do it. When they ran out of time at school, they sent it home as homework.

And so it fell to me to get him to do this dreaded assignment.

Kai whined and complained. I tried to be patient and encouraging, knowing that this type of assignment is hard for him. But, I wanted him to at least try. If he tried, I would help him. But, as time went on and he continued to complain and made no effort to begin working on it, I lost my patience.

I raised my voice with him and threatened that he would not get dessert that night if he did not get started on the homework.

He got mad.

He told me that I was being mean. He said, “Sometimes you’re nice but sometimes you’re not.” Yep, kid, that is the lot of a parent. Sometimes we’re not nice.

Then, he followed that up with, “I want a new dad.”

He said, “I’m going to find Mom a new wife.” He meant a new husband, of course, but he got the words mixed up. He corrected himself. “I am going to find Mom a new man.”

I couldn’t help but laugh. I tried to picture my son going out and finding a man for my wife. My son, the matchmaker. I wondered what kind of man he would pick for her.

But, alas, that will not happen right now. When I refused to budge, Kai calmed down and finally started the homework. He struggled, but I helped him and we got it done. Afterward, we played and he was happy with me again.

And so, there will be no new man for my wife. She is stuck with me.

At least until the next time we have a tough homework assignment, anyway.

Wednesday, February 23, 2011

Gentlemen, Start Your Numbers!

My son is becoming a fan of NASCAR.

When we were watching the Super Bowl, Kai saw a promo for the Daytona 500 and asked what that was. I explained that it was a car race and he said that he wanted to see it.

I was a bit surprised, given that Kai has never been much of a “car guy.” Like most boys, he’s received many toy cars as birthday and Hanukkah and Christmas presents over the years. But, unlike most boys, he rarely plays with any of them.

I thought that he might forget about the race; I certainly did. However, this past Sunday, he reminded me that it was going to be on. So, as with the Super Bowl, we turned on the television in the family room, prepared some of Kai’s favorite party foods, and got Mom to join us.

His interest in watching the race had nothing to do with the racing action or the speed of the cars. He was not even interested in all of the crashes.

The reason he wanted to watch was all of the numbers. Of course.

43 cars! Each with their own number! Oh my!

Kai was pulling for 24 and 48, but was just as excited when 88 took the lead. He even went to get his toy race cars so he could simulate the action on the coffee table. I had to blow the dust off of them before they would get on the tortilla chips.

In addition to the numbers on the cars, his favorite part of the race was keeping track of the laps. There would be 200 laps to count. Woo hoo! At 50 laps, he declared that the race was one-fourth over. Nothing like calculating fractions to get my boy interested in cars.

The 200th lap was thrilling. He let out a loud whoop that number 21 had won, though I’m pretty sure he would have done that no matter who won.

He’s already asking when the next race will be. So, it looks like we’ll be watching a lot of NASCAR races on Sundays.

As a guy who likes sports, I’ll enjoy it. NASCAR isn’t quite up there with football, but it’s exciting nonetheless. But, the best part is, I get to have more father-and-son bonding time with Kai. Go 48!

Tuesday, February 22, 2011

Mapping Artistic Progress

My son likes to draw. But, he doesn’t like to draw the way other kids do. He rarely draws pictures with smiling faces. In fact, his drawings hardly ever have people in them at all. For that matter, he almost never draws pictures of any living creatures. No dogs or tigers or animals of any type. He doesn’t even draw flowers, trees, or plants.

Kai likes to draw maps.

He recently got a world atlas for his birthday. He loves to go through it and we read it together. There’s a lot of great information about countries that capture his attention. But his favorite activity is to look at the maps and then draw each of the continents himself, freehand, by the way, not tracing.

Kai has had this interest in maps for quite awhile. When his grandfather visited from Japan last summer, Kai had Jiji paint every continent for him on t-shirts. His grandfather is quite a talented artist so he was happy to do that for Kai. I, however, have no talent and patience to draw maps. So, Kai, after finally accepting that I was not going to draw them for him, began to draw them by himself. I think he’s gotten pretty good at it. Maybe he has some of his grandfather’s artistic skills.

Of course, with Kai’s love of numbers, he doesn’t just draw maps. He likes to draw numbers as it relates to countries. For instance, near the back of the atlas, there is a chart that gives the area of every country. He started writing each one out on its own sheet of paper. Did you know that the Bahamas is 5,382 square miles? I do now, thanks to Kai.

A lot of times, his maps and numbers are combined onto the same drawing. A few weeks ago, he was more focused on states than countries. He drew the outline of each state. For the state of Washington, he also drew in what appears to be the county lines as well. He then wrote in numbers for each county, the date Washington became a state, and how old it will be on its next “birthday.”

I know all this makes him quirky. But, have you known any great artist who wasn’t?

Monday, February 21, 2011

A Tearjerker Movie and My Son’s Difficulties with Social Skills

My wife and I watched the 1970s’ movie Ice Castles on dvd the other day. Ice Castles is the fictional story of a young figure skater who seems headed for the Olympics until tragedy strikes. Like many other women who have seen this film, my wife cried as she watched it.

* * * * *

All of us have brain cells called mirror neurons. These neurons were first found in a monkey about 20 years ago. Italian scientists, led by Dr. Giacomo Rizzolatti, accidentally discovered that that the same brain cells that fired when a monkey brought a peanut to its mouth also fired when the monkey watched humans or other monkeys bring peanuts to their mouths. That meant that seeing something has the same effect on these mirror neurons as actually doing the action.

The implication for humans is that mirror neurons are linked to things like empathy. In an article on the topic in the NY Times, Dr. Rizzolatti said that humans are able to understand “not just the actions of others, but their intentions, the social meaning of their behavior and emotions.” He went on to say that “mirror neurons allow us to grasp the minds of others not through conceptual reasoning but through direct stimulation. By feeling, not thinking.”

And so, when my wife cried while watching the movie, it was because her mirror neurons allowed her to have the same feelings as the character she was watching.

In addition to their role in empathy, mirror neurons are said to play a part in developing language and in our ability to imitate and learn from the actions of others.

I bring up all this because some researchers have found a link between mirror neuron deficiency and autism. The thinking is that these deficiencies lead to disabilities in social skills, imitation, and empathy among those with autism.

That would explain some things about my son. It would explain why he has trouble with understanding and responding to social cues. It would explain why he doesn’t seem to learn social skills just from being in the same classroom as typical kids. It would explain his difficulty in imitating others.

However, the research on mirror neurons is not conclusive, and a recent study challenges the connection to autism. So, for now, it is just something intriguing to think about.

While I’m pondering all this, I’m off to find a movie that will make my wife laugh instead. Any suggestions?

For those of you interested in reading more about mirror neurons, you may want to check out these articles:
The NY Times article, “Cells That Read Minds”
The transcripts from the PBS Nova show on mirror neurons
The New Scientist article on the study that challenges the link with autism

Friday, February 18, 2011

No Escape for Uncomfortable Feelings

My wife and son have a session with a child psychologist every Thursday. The primary purpose of these sessions is for my wife to play with Kai while receiving coaching on the DIR®/Floortime method of play therapy so that she can better engage with him and help foster social interactions.

Lately, every session has had the same pattern. Kai would pick a toy, play for a little while, but then, invariably, something would cause him to get upset. He might get frustrated that he can’t do something, or be told that he is making too much of a mess, or just run out of time. After awhile, he would try to hurt the therapist, my wife, or himself, and would need to be physically restrained while the therapist tried to peacefully get him calmed down.

As this continued week after week, my wife has grown frustrated. What good is all this? What progress is he making? When he gets upset and tries to hurt someone, why don’t we just yell at him? At least threatening him gets him to stop trying to hurt us; why do we need to do all of this therapy instead?

We met with the therapist the other day to address our concerns and gain a better understanding of the direction she was headed.

As she explained it, many kids with autism, like our son, have certain feelings that are uncomfortable for them and they just want to make these feelings stop. Kai’s tendency is to avoid feelings of disappointment and sadness. Before, when those feelings arose in a session, he would play with the numbers on the toy or real telephone in the room, or draw numbers on a sheet of paper. Withdrawing into his own world, particularly one filled with his beloved numbers, was a form of escape for him.

However, rather than letting him continue to escape from his uncomfortable feelings, his therapist has been trying to get him to actually feel the disappointment or sadness. Toward that, she moves the telephones and everything else with numbers out of the room before Kai gets there. Now, he has to face his feelings. But, because they are so uncomfortable for him, rather than feel sad, he will often go straight to anger instead. I think there is a fine line between anger and sadness. Anger is easy. Sadness is hard. And so, he seems to explode every week.

But, where is this going?

The thought is that as Kai gets more familiar with these feelings that he has been avoiding for so long, he will become desensitized toward them. Eventually, he will not go straight to anger. He will learn to tolerate sadness and disappointment.

To help build his tolerance, the therapist wants us to empathize with his feelings and express them in an appropriate way. So, for instance, we may say, “I know you wanted to finish that project. Oh, it’s so disappointing that we ran out of time.” He may not be able to express these feelings himself, but is comforted by knowing that we can relate and are expressing his feelings for him. Over time, he will be able to do more of this on his own. And, as he does so, he will stay in a regulated state rather than immediately getting angry.

She also explained that while yelling and threatening him may have a short-term effect of stopping his immediate bad behavior, it does not have the longer-term benefits of teaching him how to cope. Instead, what he learns is that loud voices and threats are used to get someone to do something you want them to do. And that is certainly not the lesson we want him to learn.

This method that we are trying works slowly. It takes patience. Sometimes it is hard to tell if we are making progress. But, a quick fix usually isn’t best for the long term. We’re looking to build a strong foundation for our son’s future. And so, we will stick with this.

Thursday, February 17, 2011

Seeing Progress in a Giant Taco

With all of my son’s behavior issues in school lately, I’m trying to keep perspective that not everything is going to pieces.

This past weekend, with his grandparents in town, they took the whole family out for dinner on Sunday evening. Fourteen of us, including aunts, an uncle, and cousins met at Kai’s favorite Mexican restaurant.

On the way to the restaurant, we tried to prep him. This will be a little different than when we go by ourselves, we told him. Everyone will want to talk and we will be at the restaurant a long time. We will take our time and not rush to leave.

Still, we were nervous. It was only recently that we’ve started to feel more comfortable in going out to eat with him. But that’s just with going out by ourselves. Going to a restaurant with others was still uncommon, and we were not sure how long Kai would tolerate our socializing before he would want to leave.

It didn’t help that the service, which had always been good when we went there before, was incredibly slow on this night. As the wait for our meals extended over an hour, we all were getting restless. Kai’s cousins had their heads down on the table. The adults had concerned looks on their faces. I was feeling hungry and impatient.

And yet, through it all, Kai seemed remarkably unfazed. He asked when his taco would come, but not any more often than the other kids did, and certainly far less often than I was asking the same question in my head.

To pass the time, he started talking about a Giant Taco falling from the sky and landing on everyone. His cousins thought that was funny and added on to the story. With all the laughing, we were able to last until the food arrived without a major incident. On my part, I mean.

I don’t know why Kai is having so much trouble at school this month. But, I do know that despite those issues, he is showing amazing progress in so many other ways. If you don’t believe me, just ask the Giant Taco.

Wednesday, February 16, 2011

Bad Day, Birthday; Wednesday, New Day

Although we had the party over the weekend, yesterday was actually my son’s birthday. It was also his worst day of school.

With the big birthday party on Saturday, going to Red Kite on Sunday, and a cozy Valentine’s at home on Monday, we have been in a celebration mode for several days. Still, we wanted to note Kai’s actual birthday so we saved a few presents and some birthday cupcakes for a quiet little party last night.

Finding out that he had such a terrible day at school put a bit of a damper on the celebratory mood. Yesterday continues a very bad month with now seven major incidents in eight and a half days of school. The score on his point sheet yesterday was the lowest since he began going to school there just over a year ago.

If this had happened to Tiger Mom’s child, I wonder if she would have thrown out all of the birthday presents. With us, though, we spoke to Kai about how disappointed we were, and then went ahead with our plans.

He opened presents and then spent the rest of the afternoon building models from a new Lego set he received. Then, it was bath, dinner, and phone calls from grandparents. We sang “Happy Birthday” one more time. We wrapped up by playing Wii with his grandmother. Kai had a really nice time.

He didn’t quite forget about school, though. At bedtime, he talked about the bad day he had. We told him that no matter how bad of a day today was, he could make it a better one tomorrow.

As we talked, we noticed the Peanuts perpetual desk calendar that he just got. We had set it up next to his bed. The calendar features Snoopy using a typewriter while perched on top of his doghouse. The inscription on the bottom said it best.

“Happiness is a new day.”

Thanks, Snoopy.

Tuesday, February 15, 2011

Red Kite Roundup

As part of our son’s birthday weekend, we drove downtown to participate in a unique theatrical experience call Red Kite Roundup. Red Kite is a product of the Chicago Children’s Theater, and is an interactive, multi-sensory performance specifically for children with autism.

Kai, like many kids with autism, has a difficult time having to sit still while watching a play or show. But one of the great things about Red Kite is that the kids who attend each performance don’t just sit back and watch; they participate and are part of the experience.

We got to the theater about a half hour before show time, as suggested. There is a waiting area with hands-on exhibits. The performers come out and meet all the kids and play music and sing songs, so there is actually a lot of entertainment before the show even begins.

Still, Kai knew what time the show was officially supposed to start and kept asking all of the performers how much longer he had to wait. We tried to get him to relax and enjoy the music. The other kids seemed to be happy listening to the songs. Kai, on the other hand, grew increasingly impatient. I wondered if he would be the first kid to get kicked out of Red Kite as he became more insistent that the show begin soon. When it was finally time to enter the theater, a cast member wisely picked him to be the first one to go in.

The theme for the performance was camping and hiking. Kai settled down as soon as he entered this theatrical “outdoors.” He and the other kids explored the set, and were encouraged to move, laugh, talk, sing, and interact with the specially-trained actors. The actors often followed the kids lead. Early on, when Kai laid down in the middle of the set, I worried that he would disrupt the show. Instead, “Ranger Bob” encouraged all of the kids to lie down like Kai, breathe in the fresh air, and take in the sky. As the show went on, the amazing set allowed the children to experience the sound of the forest, pet fuzzy newborn chicks, feel the gentle spray as they rafted down a river, and sing songs next to a campfire. It truly was a multi-sensory experience with plenty to touch, see and hear.

There are not a lot of places where you can take your child with autism and have an experience like this, where we all feel so comfortable and accepted while taking in a unique adventure. We are grateful for having had this opportunity.

If you are in the Chicago area, check out Red Kite’s website for more information.

Best of the Best, Edition 3: School Issues

This month's Best of the Best’s topic is school issues for children with invisible special needs. The bloggers write about a multitude of school issues. Check out this interesting array of information here.

For those of you visiting from BoB, welcome! You may also be interested in earlier posts about my son’s therapeutic school:

My Son, the Snack Shop Employee
The Incredible 5-Point Scale
Countdown to Level 2

Monday, February 14, 2011

Happy Birthday! Phew!

It had been three years since our last, and only, attempt to throw our son a birthday party with anyone other than family and close friends invited. That time, he was overwhelmed by the whole thing. But he seemed more ready now, so, with Kai turning seven, we decided to give it another go.

My wife had everything planned and ready to go; gluten-free, casein-free cupcakes; a slushy drink; invitations to all of his classmates plus a few other kids; and, an animal show that would provide the primary entertainment. We were hopeful that Kai would enjoy this party, but a bit nervous as well. It didn’t help our anxiety that he had another major incident at school late in the week, his sixth in only six and a half days of school this month.

On Saturday afternoon, when his piano lesson ended, there was an hour to go before the party would begin. Our time-conscious son was beginning the countdown. We were expecting a pretty big crowd – 14 kids and about a dozen critters.

Kai’s grandparents arrived first so that we could enjoy some time with them before the crush of the party started. And then, the folks with all the animals arrived. Kai greeted them at the door and started quizzing them with questions even before they could unload their van. Laurie and Dave patiently answered his questions, and we soon found out how great they were with all the kids.

We waited a few minutes for the last kids to arrive, and then the show got started. I wasn’t sure what to expect from these kids – the vast majority had some type of special needs. But, they were hooked from the moment that they saw the first creatures, a couple of snakes. It was fun to see all them all smiling and laughing as each subsequent animal was brought out. This was not a shy group; almost every child was very eager to get close and touch the critters. They wanted to hold the snake, have the lizards placed on them, and pet the hedge hog. They loved the hard-shelled tortoises as much as the soft and cuddly rabbit and guinea pig.

Laurie and Dave did a great job in giving every child a chance to get close and touch each animal. They noticed when one boy was not able to get through the fray of the other children and made sure that he got to pet each animal, too.

Toward the end, a colorful toucan came out. But, it was another bird that provided the big finale. A large white Cockatoo, Casper, made its presence known as soon as he was brought out. A couple of kids covered their ears while the rest laughed hysterically as Casper loudly squawked and danced to music. The more the kids reacted to him, the louder Casper got. It was a rousing finish to a great show.

After the animal show, the rest of the party was anticlimactic. Of course, we sang “Happy Birthday” to Kai, and then it was time for cupcakes and other snacks. We concluded the party with a piñata, and we would have done without it if we had to do it all over again. After the piñata was opened, some kids ended up with more candy than others and one child got particularly upset at the outcome.

But, all in all, the party was as good as we possibly could have hoped for. All of the kids had a great time and we heard back from parents who told us how much their child kept talking about the party.

As for our son, of course we are thrilled that Kai had a wonderful time. But, it is also satisfying just to know that he was able to deal with all the commotion and excitement without getting overwhelmed. It was, indeed, a very happy birthday.

To see more pictures, please visit our page on Facebook.

For those in the Chicago area, we enthusiastically recommend Lil Critters. Their animal show is unique and very fun entertainment for a birthday party or other special event. Laurie and Dave did a fantastic job at including each child, and making them all feel comfortable and happy.

Friday, February 11, 2011

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.

Thursday, February 10, 2011

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.

Wednesday, February 9, 2011

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.

Tuesday, February 8, 2011

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.

Monday, February 7, 2011

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.

Friday, February 4, 2011

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.     

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?

Thursday, February 3, 2011

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?

Wednesday, February 2, 2011

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. 

Tuesday, February 1, 2011

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
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