Library Visits Are More Than Simple Pleasures

Check out my debut column for the Highland Park Patch. I introduce Kai by talking about our weekly dad-and-son trips to the public library.

Click here for the full article.

Happy Birthday to Me!

Having a child with autism, we are sometimes apprehensive about trying new things. Like going to a restaurant other than the one our son is familiar with. But it was a special occasion this weekend, so we took the plunge.

It was my birthday, and my wife wanted to celebrate by taking us all out to eat. We have gotten somewhat comfortable dining at our local Mexican restaurant. Its casual atmosphere and the quick arrival of chips and salsa to our table make it the ideal place to go with a boy who hates to wait and can’t sit still for long.

But, while Kai does well there, we haven’t felt all that comfortable about taking him to other restaurants.

For my birthday, however, my wife thought the occasion called for more than enchiladas and tacos. And, we wanted to go out as a family. So, she came up the idea to try one of those Japanese steakhouses where the chef cooks the meal at the table.

We thought that all of the chopping, slicing and dicing, and cooking right in front of us would sufficiently entertain Kai.

We were off to a good start when the restaurant that we went to had an indoor Japanese garden that fascinated Kai. He seemed soothed by the little faux creek running through it, along with all the green plants, coins in the water, and the bridge that we crossed to get to the dining area.

We were seated together with another family of three. We knew that it was likely that we would have to share a table, and that was a concern in choosing this place, but it was a risk we had decided to take. We hoped that Kai would behave well enough not to disturb the others and embarrass us.

Over at a neighboring table, the chef set off a big flame as he heated up their cooking surface. Its part of the show they make of preparing the meal and we thought that would really interest Kai. But all it did was frighten him. We saw his anxiety rise as he asked if there would be a fire at our table, too.

When it came time to begin cooking at our table, and our chef made a huge flame, Kai was in Mom’s lap with his head turned away from the table. When the fire went out, it took a little while to coax Kai back into his seat.

He spoke up to ask the chef, “Excuse me, will there be any more fire?”

The chef assured him that there would be no more fire at our table.

Kai seemed to enjoy watching the chef in action. And he asked him several more questions.

“Excuse me,” he said. “What are you going to cook?”

“Excuse me,” he said. “How long are you cooking?”

“Excuse me,” he said. “What table are you going to next?”

Of course, when you have a child with autism, you are thrilled anytime they want to socialize with anyone else. So, you don’t want to discourage them from doing so. But each time Kai started to speak up, I was afraid of what he might ask. But his questions were pretty appropriate and the chef was a good sport about all the questioning.

When we got to the actual eating, we all enjoyed our steaks.

Kai he did get a bit restless before my wife and I were done eating. He had some trouble staying in his seat. Fortunately, we were seated in a corner of the restaurant and he was able to move to a spare seat they had in the corner and read his element book long enough for us to finish our meals.

So, all in all, we had a very pleasant evening out.

Good steaks – nice!

An evening out with my wife and son – great!

Seeing Kai converse with the chef and successfully tolerate a new setting – the best birthday present I could ever have.

#%*$@# Super Mario

Our son doesn’t play a lot of video games like many kids do. Most of his free time these days is spent on elements. But lately, Kai has been into the Super Mario Bros. game for our Wii. No, he doesn’t play it much. Rather, he either wants to watch us play or he watches YouTube videos of other people playing.

He’s been so into the game this week that he’s even eaten his breakfast quickly every day just so he could watch Mom play for a few minutes before he has to leave for school. Who knew that Luigi and company would be such motivators?

His favorite videos are of three players who are quite good at the game and who get much farther than we ever do. On screen you see the Mario characters, but the audio is of the people talking. The other day I watched these videos with him and I found out that the language these players use is not the kind I want Kai exposed to. There were a few f-bombs, and a lot of b-words.

At first I was hoping that Kai wouldn’t notice them. Language is hard for him and he doesn’t seem to repeat much of the things we say. But then I thought that I better turn the sound down. I don’t want him to start swearing. Once he does, I think it will be hard to get him to stop.

So, I turned down the sound, and, not surprisingly, he didn’t like that at all. He yelled and protested. I explained to him that the people were using some bad words that I did not want him to listen to. I said that he could watch the video, just not listen to the sound. But, that didn’t satisfy him. He actually cried, which is rare for him. Usually he just gets angry, but this indicated that he was sad.

So, he doesn’t seem sad when talking about death, but not getting to listen to the sound of a YouTube video of a Super Mario Bros. game really gets the waterworks going.

To cheer him up, we told him that perhaps his older cousins who live in Virginia might be good at the game. We will see them in August so he can play with them at that time.

Well, two and a half months might as well be an eternity for a child. Kai demanded that we invite them over right now. Right, I’m sure they would drop everything to fly here so they can show Kai how to play Super Mario.

So, for now, he is stuck watching Mom and Dad ineptly play the game.

Now, can anyone give me a few tips before I start swearing?

How Not to Wish Someone a Happy Birthday

My father’s birthday is coming up so we asked our son to make him a birthday card. As Kai is all about numbers, he wanted to know how old Ojiichan will be. When we told him, Kai exclaimed, “86?! That is really old.” He went on to say, “I don’t know if Ojiichan will live ‘till the end of the year. I think he might be dead soon.”

He said it very matter-of-factly, without a trace of sadness. My wife and I looked at each other, feeling a bit stunned. Our first reaction was to tell him not to say things like that. But, then we realized that this was a teachable moment.

We told Kai that you never know how long someone will live. Just because someone is 86 does not necessarily mean that they will die soon. Some people live to be 90 and a few even make it to 100. Others die younger; you just never know. We told him that it is not nice to say things like someone may die soon. Instead, we should appreciate the person and be kind to them, especially if they are older.

I don’t know how much of that sunk in with him. The whole episode left me wondering if all kids are like this. Do kids just not comprehend the gravity of death until they first experience the loss of a loved one? Do kids with autism tend to be less emotional about death? Or, is Kai unique in this regard?

Once we had our talk, Kai made the birthday card. After he wrote “Happy Birthday Ojiichan,” he drew a picture of a big balloon with the number 86 on it. Then, to really emphasize the age, before we could stop him, he added two more 86s to the card. He also went on to draw what he told us is a flower with 86 petals on it, and a tree trunk with 86 rings.

As my dad does not like to be reminded of his age, this card is really going to get him stirred up. But because it comes from his grandson, I think that he will like it anyway.

Still, perhaps it’s best not to let Kai talk to Ojiichan on the phone on his birthday. After all, there’s nothing like blurting out a comment about death to dampen the birthday spirit.

What If Oprah Had A Child With Autism?

After 27 years, Oprah Winfrey is broadcasting her final show today. For those of us in Chicago, it’s the end of an era as perhaps the biggest star to call Chicago home closes up shop.

Over the past two decades, she’s become a larger-than-life figure. Called by some the most influential woman in the world, she is now a global icon. To millions of American women, she was more than just a television talk show host; she was a girlfriend, therapist, and spiritual leader.

For the past two nights, our local PBS station has rebroadcast old interviews of Oprah from back in 1984 when her show was first starting out. I caught only a bit of it while washing dishes, but the part that intrigued me most was when the interviewer, John Calloway, asked her if she would like to get married some day. She said sure, though we now know that she never did.

But, what if she did? And what if she had a child with autism?

The younger Oprah, before she became OPRAH, may have been a sensational mother for a child with autism. Oprah has shown that she can be tender and that she possesses a great amount of empathy, qualities that are essential for good parenting of a child with autism. She also can be plain spoken and aggressive, but in a non-threatening way. I could see her effectively cutting through the red tape with school systems, insurance companies, and the medical community. And perhaps her most impressive talent, the remarkable ability to inspire others, would be particularly beneficial when raising a child with autism.

Of course she also would be an extremely articulate and passionate spokesperson for autism parents. That is, if she had the time to continue to be a television personality while doing all the parenting work. I wonder if she would have tried to do it all, or if she would have put all of her energies into her child at that point. The world may never have gotten to know Oprah in that case.

If she had her child later, after she became a megastar, she would still be the same person, but I wonder how her parenting might have been different having all that fame and fortune. Would she have put her media empire on the back burner to focus on being a mother? Would she have turned to her seemingly endless cadre of professionals to help her care for her child? Is it too far-fetched to imagine Dr. Phil and Dr. Oz as the semi-surrogate parents for Oprah’s child? Would the rest of us be able to relate to her as she threw all of her enormous resources behind her child’s treatments?

I can’t really picture Oprah the celebrity as a parent, particularly of a child with autism. But, I think the person underneath, the one who rose from poverty and overcame adversity would have been a darn good one.

But, what do you think? What kind of parent do you think she would have been?

Do We Need to Choose Sides?

Baseball fans growing up in Chicago are taught early on to choose sides. You have to be either a Cubs fan or a White Sox fan. And you can’t simply like one team; you have to also hate the other with as much passion.

In the autism community, there seems to be much the same dynamic. When it comes to therapy, you have devout ABA proponents, and those that swear by Floortime. Each passionately declares their method to be the best.

The debate between conventional versus alternative medicine is even more heated.

At the suggestion of a psychologist who recently evaluated our son, we consulted a psychiatrist about putting our son on medication for attention deficits and anxiety.

We told the psychiatrist that we had been seeing a DAN (Defeat Autism Now!) doctor since our son was first diagnosed with autism. We showed him a list of all the alternative-medicine supplements that our son is on, and told him of the progress he has made. The psychiatrist said that he thought the supplements were worthless. He said that there is no scientific research to substantiate any of the purported benefits of this alternative approach.

It was not a surprise that he would feel this way. With his training and background in conventional medicine, that is to be expected, I suppose. I actually appreciated the doctor’s frankness. But, when he went on and on about his disdain for what he called “quack” medicine, it got to be a bit much.

A few days later, I spoke to someone at our DAN doctor’s clinic and told her that we were considering medication. She said that while we might see some short-term benefits, she had concerns about longer-term usage. She said that many of these drugs have not been tested for use on children.

So, here we are, both sides critical of the other. Remarkably, their respective criticisms are similar – lack of appropriate research.

I wish there was a treatment that everyone would agree on, one that has been “proven” to be effective. Alas there is not. And so we are left with a conundrum. Do we continue with the alternative approach or do we begin more conventional medication?

When it comes to baseball, I am a bit of a rebel in that I cheer for both Chicago teams. I figure that when your two hometown teams have had only one World Series championship between them in the last 94 years, it doesn’t make sense to cut your chances in half.

And so it is with our approach to autism. I don’t know if overcoming the harmful effects of autism is as futile as hoping for a Cubs championship, but I don’t want to reduce my chances.

We have done both ABA and Floortime. And had success with both.

And while I don’t like the attitude of this psychiatrist, I don’t want to rule out the treatment he has to offer. But that doesn’t mean that we will necessarily quit the alternative approach. We may do both.

Whatever we do, I hope we have more success than the Chicago baseball teams are having this season. Sox? Cubs? Sigh. It’s already “wait ‘till next year” time.

Good Weekend, No Doubt

It feels like we have had the most miserable spring weather this year. Maybe it’s just that the bad weather has come on the weekends so we notice it more. But my son’s soccer games have been cancelled several times, and even when he does play it seems extra cold.

So, this weekend, when we finally had some beautiful weather, I think we appreciated it even more than usual.

My wife took advantage by having a large garage sale to benefit the ongoing relief efforts from the earthquake, tsunami, and nuclear disaster in Japan. She and the other women who organized the event raised over $1,000.

Our family got outside with two picnics this weekend. Do folks in California ever picnic? My theory is that if you have good weather all the time, you take it for granted and don’t appreciate it like we do in the Midwest. Even for us, we usually picnic only in the spring when we are excited to get outside after the long, cold winter. By mid-summer, the novelty wears off and we’d rather eat in air-conditioned, bug-free comfort.

Our first picnic was on Friday evening when we had dinner in a spot that overlooked a picturesque golf course. Okay so it wasn’t all that picturesque, and it was only a Frisbee golf course, but it was still fun. After eating, we played a round. With the numbers on each hole, it is Kai’s favorite sports activity.

We also had a picnic lunch at our local forest preserve on Sunday afternoon. It is Kai’s favorite local spot for hiking because the trails are marked with signs that indicate the distance. Again, numbers are the attraction.

My favorite part of the weekend, though, came at Kai’s soccer game on Saturday. Apparently he was talking about elements as he was playing. At halftime, the coach came over to me and said that Kai had named the group ‘Team Elements.’

Kai designated himself hydrogen. But, since he was wearing uniform number 6, Coach suggested that perhaps he should be a different element, whatever one had the atomic number of 6. I asked Kai which one that was and he said that it was carbon.

But, Coach said that he thought that carbon was number 12. I asked Kai again, just to make sure that he understood the question. He repeated that carbon was number 6. I told Coach that if Kai says it is carbon, you could be sure that it is carbon. But, Coach remained skeptical.

After the game, we looked in the element book that Kai had in the car. What, doesn’t everyone have a book about elements in the car? Sure enough, element number 6 is carbon.

And so, my takeaways from this weekend are: junk can be valuable; we can have picnics if there are numbers involved; and, when it comes to the periodic table, don’t doubt my son.

Kids Say the Darndest Things

My son was having trouble falling asleep the other night. He wanted Mom to lay down in the bed with him. She told him that she would sit next to him for a few minutes, but would not lie down.

He was not satisfied with that.

He said, “I’m going to be your father. Then you will have to do what I say.”

My wife smiled and responded that she already has a father. He didn’t say anything to that and eventually fell asleep.

Kai says the funniest things sometimes when he is mad. But, I don’t know where he got the idea that the child always does what the father says. It sure doesn’t seem to work that way very often at our house.

The Medication Question

At some point, many parents of kids on the spectrum are faced with the decision of whether or not to put their child on medication.

Our son has made a lot of progress but still has attention deficits and anxiety issues that may be hindering him from staying more focused at school. Can medication help?

Until now, we have taken the biomedical approach, using mostly natural supplements, and therapy, to try to make inroads in this regard. But one of the recommendations of the recent psychological testing that we had done is to consider medication.

Turning to drugs is contrary to my natural tendencies of avoiding the use of medication unless absolutely necessary. My personal belief is that drugs combat the symptoms but not the source of whatever problem you are treating. And so, I have been reluctant to turn to medication with my son.

I was hoping that the biomedical treatments would help address the core issues of my son’s disorders. I wanted to use a therapeutic approach to teach better behavior without the use of drugs.

But I see every day that my son continues to have attention deficits. When he does homework, he has difficulty staying on task. It is a challenge to get him to listen and follow directions.

And so, if an expert is suggesting that medication may help, we need to seriously consider it.

From what I understand, you can often tell fairly quickly whether or not a medication is having a positive or negative effect. So, a part of me thinks that it couldn’t hurt to try, just to see if it makes an impact.

Still, it feels like a big decision. And although it is not irreversible, it feels like we have come to a major fork in the road. We will ponder our choice carefully.

A Warning About Unsupervised Internet Usage

Let this be a cautionary tale for all you parents whose children use the Internet.

We had gotten used to our son using the computer and going on the Internet by himself. Oh, I know we should have been monitoring his activities, but frankly, it was a relief for us. For years, Kai didn’t want to do anything by himself. Being an only child who hardly ever has other kids over, that meant that he constantly wanted either Mom or Dad to play with him. Even when he is watching a video, he wants at least one of us to sit and watch with him.

Do you know how stressful it is have your child want to spend every waking second at home with you? Oh sure, it is endearing. And maybe if he ever behaves like a typical teenager who avoids their parents like the plague, we might look back on this with fondness.

But, for now, we are thrilled when he does anything on his own.

The past several weeks, as Kai has been so interested in the periodic table, he has gone online often to find information about elements. At first he wanted our help to find particular websites, but soon he became adept at not only finding his favorites, but also looking for new sites that he’s never seen before. Just on YouTube alone, he’s found dozens of songs about the periodic table, or videos of people discussing various elements. Who knew that would be such a popular topic?

We relished the break we had when he was occupied on the computer, and we turned the other way.

Until the other day, when I went downstairs to check out what he was so engrossed in online. He had been strangely quiet, not like when he is watching element videos when you can usually hear him shouting with delight.

As I peeked around the corner, I could see that he was staring intently at the screen. And then I was horrified. He was watching…

Pi

Yes, he was watching a YouTube video about the mathematical symbol (π) that showed pi to who-knows-how-many digits. Worse than just watching, he then started copying down all the numbers. Knowing my son, he will be obsessed with it. He won't be able to stop. He may even memorize it to hundreds of digits.

And it is all because I was too lazy to monitor his Internet activities.

Be vigilant, people! Don’t let this happen to your children! Don’t let them go on the Internet unsupervised or they too may discover Internet pi.


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This post was submitted for the S-O-S Best of the Best series on Media and Kids With Special Needs, which will be published on June 21, 2011. You find more information and read other submissions here.

A Friend at School?

Try as we might, it is a struggle to get our son to tell us much about what happens in school. Other than from his homework, we don’t know what he is learning in his classes every day. We don’t know what activities he enjoyed and what he did not. And we have no idea if likes any of the other kids in his class.

In fact, about the only time Kai mentions any of the other kids at all is after he’s had a bad day at school. Then he will say how mean everyone else was to him. In reality, in all likelihood, they were not mean at all but he is merely projecting his own bad actions onto them. But because he never says positive about any of them, we have assumed that he has no friends at school.

So it was a surprise to us at a meeting with the school staff last week that they told us that Kai is friends with one boy in particular. Apparently, he and "N" are good buddies, playing together during breaks, lunch, and at PE.

This weekend, we got a first-hand look at how much our son likes N.

The two boys are now on the same special needs soccer team, though due to rain and other commitments, they’ve played together only one time since N joined earlier this spring. On Saturday afternoon, the day of the latest scheduled game, the weather was lousy, even by Midwest standards. It was cold and drizzly and only a few kids showed up. Kai kept asking if N was going to be there. I told him that I did not know, and he asked that I call him up to find out. I told him that I did not know their phone number, but it was likely that N was not going to come due to the bad weather.

As game time arrived and N still had not come, I saw an unusual emotion in Kai. He was disappointed. Kai rarely shows disappointment, usually going toward anger instead. His psychotherapist says that sad feelings are too much for him so he avoids them as much as he can. But, on this day, he couldn’t. He seemed sad and then played a lethargic game of soccer.

But the next day was N’s birthday party. Kai was back to his usual excited self and couldn’t wait to go. The party was at one of those places with the inflatable slides and trampolines where you can jump around a lot. Kai chased N around the whole place and N seemed to enjoy it. They played together the entire time.

And so, after years of thinking that our son would have trouble making friends, in one weekend we saw the makings of two potential friendships (including the boy I wrote about yesterday who shares Kai’s love of the periodic table).

My son having friends? I can’t think of anything better than that.

Finding a Kindred Spirit

While most parents can take for granted that their kids will have friends, this is often a big concern for parents of kids with autism. It certainly is for us. And, it is not just because our son has trouble with expressive language or reading social cues or knowing how to interact with other kids.

It is also because he has such unusual interests that it is difficult to imagine finding another child his age who would want to talk about the periodic table, or watch YouTube videos of elements, or make models of atoms.


The other night, we were invited over for dinner. The woman who invited us was the mother of a boy in our son’s special needs karate class. It was so nice of her to extend the invitation, but we had some anxiety about going.

My wife said that this other boy, Sammy, is so well behaved. In comparison, she thought our son is much more out of control. She was nervous about how Kai would behave at a home he had never been before. Would he even sit for dinner? How much attention would we have to give him?

We also wondered about how Kai would be around Sammy. Although they are in the same karate class, they do not communicate much with each other. And, Kai hardly ever plays with other kids at all.

As we entered the house, the two boys went off together while we parents socialized. I wouldn’t describe what they were doing as playing. Mostly we heard Sammy complain that Kai was getting into his things.

When it was dinnertime, it took a little bit of effort getting Kai to come to the table, but he became more interested when he found out there would be a prayer and candle lighting before the food would be served. The family is Jewish, and they observe Shabbot on Friday nights with prayer, songs, wine and bread. For Kai, this was similar to the Passover Seders that he loves.

And so, he was well behaved during the ritual, and then ate some of his dinner. But, he wanted to explore the house so he and Sammy went off while the rest of us finished our meal. In our conversation, we learned that Sammy is also on the spectrum.

After dinner, we snuck upstairs to take a peek at what the boys were doing. We could hear them talking. They seemed to be playing with each other. It actually sounded like they were talking with each other, but, it is very unusual for Kai to have a conversation with another child.

Then I heard him say something about “hydrogen” and figured that he was just self-talking about elements like he often does. But when we heard Sammy respond to him, my wife and I looked at each other with quizzical looks. We asked his mom if Sammy liked elements. She, in turn, was also surprised. “Does Kai like elements?”

We found out that our sons are remarkably similar. We entered the room where the boys were playing. They were playing with the atomic models that Sammy has. We also saw Sammy’s favorite poster – a giant periodic table – and his periodic table placemat.

We couldn’t believe it. Kai had found a kindred spirit, a boy just like him! A boy who loves the periodic table!

I don’t know if they will end up being best friends. Though we certainly intend on giving them a lot of opportunities to play together in the coming weeks. But no matter what happens, it is incredibly heartwarming to visualize, for the first time, the possibility of our son having a good friend.

S-O-S Best of the Best, Edition 6: Anxiety and Stress

Check out the latest S-O-S Best of the Best (BoB). The topic this month is anxiety and stress as it relates to invisible special needs. A total of 24 bloggers submitted posts this month. Bloggers have shared many different experiences, viewpoints, and options for reducing stress. You can find all of the posts here.

Coping With Anxiety Not As Simple As 1, 2, 3

There is no shortage of things that my son has anxiety about:

Being late; answering a question; a change in his schedule; putting his face in the water; performing a challenging task; riding a bike or swing; playing with other kids; an unfamiliar person; thunder and lightning; and on and on.

When Kai has anxiety, he tends to gravitate toward numbers. Numbers are his comfort. He knows numbers, he loves numbers. They are his friends. They are objective. They never change. He has confidence when it comes to numbers.

His psychotherapist was the first to point out how Kai uses numbers to cope with his anxiety. Before, I didn’t think twice when he would start to talk about them during our sessions with her. But once she mentioned it, I did notice that he seemed to always start talking about numbers or writing them when he was feeling anxious.

When it comes to his anxiety, I have to keep reminding myself to see things from his perspective. All too often, I forget to do that and wonder why he should be anxious about something. After all, if something is simple for us, shouldn’t it be simple for him? And yet, as I’ve come to realize, that often is not the case.

We could be out somewhere when someone greets him. Instead of responding to the person, he may start talking about how old something is or what year it was discovered or something else that has to do with numbers. Even when the person asks a simple yes/no question, he may not respond.

His world is different than ours. Especially in an unfamiliar place, he may have trouble just figuring out his place in the environment. It gets more complex if he is in a noisy spot with a lot of activity. Then, it is a further challenge to listen to what the person is saying and try to process it all while struggling to shut out all the distractions. Add on his language deficits, and coming up with the words to answer back is not instinctive like it is for most of us. Sometimes it all gets to be too overwhelming.

As he gets older, it is likely that the social situations he finds himself in will get even more complex. And so his skills will have to improve.

He will need a comprehensive learning plan that includes support for social skills, emotional regulation, and speech and language. He would benefit from learning to “self talk” his way through solving problems. He ought to have occupational therapy, though his insurance company doesn’t seem to feel it is necessary.

There is also the question of medication, and whether that may help reduce his anxiety. But, that is a topic for another day.

In the meantime, we continue doing what we can. And if I hear him talking about numbers, instead of just tuning it out, I’ll think about whether that is an indication that he is anxious about something.


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This post was submitted for the S-O-S Best of the Best series on Anxiety, which will be published on May 15th, 2011. You find more information and read other submissions here.

Trivia, Trivial, or Just Quirky?

My son attends his school’s after-school program on Wednesdays. The kids participate in recreational activities such as Legos or board games or Wii. My son has a different idea on recreation. Here is what he brought home in his backpack.

We found dozens of these pieces of paper that he had cut out. On each one, he wrote the atomic symbol and discovery dates of different elements that he had memorized over the past few weeks. Molybdenum was first isolated in 1778; Tellurium in 1782.

It’s not exactly the social activity that we were hoping for when we signed him up for this program. I mean, I really doubt that there’s another kid there who he is swapping element cards with.

And I’m pretty sure that knowing the dates that elements were discovered will never be useful to him, except perhaps to win party bets when he is older.

But, still, I can’t help but smile. Uniqueness is a virtue, right?

Field Trip is More Than Just a Puppet Show

My son’s class had their first and only field trip of the school year yesterday, and the first field trip since he started attending the school a year and a half ago.

When I was a kid, I recall that we went on a couple field trips every year. I am guessing that Kai’s school doesn’t have more trips because it is a therapeutic school for kids with behavior issues. If issues come up in school, they are equipped to handle it. But it is a lot more difficult when you are out in public.

We found out about the trip last week when Kai’s social worker at school called to talk about it. His class, she said, had just received an opportunity to go see a puppet show at the Museum of Contemporary Art in downtown Chicago. As that would mean about an hour drive each way, she wanted to know how Kai had been doing in the car lately.

She sounded concerned, maybe a little nervous, and a bit apprehensive. This was going to be a new experience for the staff, too. She said that she wanted to make sure that they took every measure to keep the kids safe and well behaved throughout the excursion. The anxiety I perceived in her made me a bit more anxious about how my son would do on the trip.

The school developed a social story to prepare the kids for what they would experience including the ride in the van to get there, parking, waiting for the show to start, how to behave in the theater, and the drive back.

We spoke to Kai for several days about appropriate behavior. I felt like we had prepared him as best we could, but nothing was ever certain with him.

The school asked parents to send along anything that might keep the kids occupied in the ride down to the museum. For Kai, we packed his favorite book about elements and a handheld electronic math game.

All day long, I wondered how he was doing. I was happy that at least we didn’t receive a call during the day to tell us to come get him.

In the afternoon, my wife went to pick him up at school. When she came home she said that Kai’s teacher had walked him out to the car. Usually, an aide brings him out. The teacher normally only comes out if there is something bad that she needs to tell us about.

But this time it was different.

She said that Kai did a wonderful job on the field trip. He read his elements book, chewed gum, and had a snack in the van to and from the puppet show. She said he really enjoyed the show, and afterward told her that he wanted to have more field trips to downtown Chicago. She wrapped up by saying that with Kai’s positive attitude and patience today, there is definitely the possibility of more field trips in his future.

For most, the purpose of a field trip is for kids to learn something beyond what they experience at school. And based on Kai’s enthusiasm afterward, I think that goal was met. But for us, nothing was more important than our son just being able to go, and then behave well enough for the opportunity to go again. And in that regard, the field trip was an unqualified success.


For Chicago area readers, there will be three more performances of the puppet show that Kai saw, The Man Who Planted Trees, at the Museum of Contemporary Art.

Piano Lessons

My son has been taking piano lessons for nearly two years now. When he first started, I think my wife was hoping that he would turn out to be a piano prodigy. It quickly became apparent that he is not.

The routine when the piano teacher comes over to our house is that as soon as Kai hears the doorbell ring, he runs over to the family room, launches himself onto the couch, and buries his head in a pillow cushion. As we call for him to come to the piano and greet Vlad, he laughs, acts silly, and refuses to come until we go over to the family room to get him. Then, we have to take his hand and pull him to the piano as he playfully resists.

Once he starts playing, it can be hit or miss as to whether he will play nicely or not. Sometimes he will only want to play either the right or left hand portion of the song and not both. Then we have to threaten, I mean encourage him to play nicely.

Through all this, his teacher is extremely patient, certainly far more than I am, as he tries to get Kai to play. And when Kai finally does play, Vlad has a gentle approach to showing him how to play the current piece.

But this constant fighting is taking a toll on my wife. Even Kai’s daily piano practices with mom are battles as he often whines that the piece is too hard or that he only wants to play once or that he wants to play only a portion of the song. My wife is getting close to stopping the lessons.

After all, is it really worth it if Kai is resisting so much?

I’d hate to give up just yet. When he does focus and cooperate, he plays nicely. And I am still hopeful that he will gain an appreciation for being able to sit down at the piano and play music. He loves music, and my hope is that as he gets older, he will enjoy playing by himself.

I wonder if there is something we can change. Kai has high levels of anxiety about so many things; it would not surprise me if part of his reaction is due to having anxiety about playing a seemingly difficult piece. Also, his attention span seems shorter these days. If we can correct that, perhaps it will make a difference. Or, maybe Kai needs an instructor who can better show him how fun it is to play music.

His teacher said that next time he would bring a different lesson book, one that has more songs that Kai is familiar with. Hopefully that will make a difference.

I don’t want the music to stop. But if we can't hear the music over all the whining, then what is the point?

Ice Show

My son skated in an ice show this weekend.

His group of kids with special needs has been working on their routine on Saturday mornings for the past two months. Kai hated the practices. For one thing, they were long. Some went for as long as an hour, which was long for the kids with attention issues considering that the routine doesn’t last much more than two minutes. And the practices weren’t as fun as when he was skating at his class. Most of the time, during the practices, the skaters were not actually skating. They were supposed to be listening to the coach as she taught them the movements.

My son, who did not do well listening to a teacher in a regular classroom setting, struggled with listening to the coach for long stretches when all he wanted to do was skate. Still, he usually was able to at least somewhat maintain his attention for about 20 minutes. After that, though, it was too much for him and he couldn’t stay focused on the task.

I wasn’t sure how he would do in the actual show. Would he even be willing to skate? Would it be overwhelming for him with the music blaring, the spotlights on, and the crowd of people watching?

His first performance was Friday night. When we got to the rink, it was something to see all of the kids in their beautiful costumes. You could tell that many of these young skaters were very devoted. Would Kai fit in with all of these serious skaters?

Waiting to go on was difficult. “Is it our turn?” he asked. I patiently explained that his group would skate after the group of young boys in the red baseball uniforms. If he didn’t see the boys in red, then he would know that they would have to wait some more. Just as I was thinking how well I had answered his question, he repeated it. And then again. And again. Literally every 5 seconds it was “Is it our turn?”

Sigh.

But then it was their turn. His teen skating buddy greeted him, took his hand, and they were off. A few minutes later, they were back. He was smiling. She said that he did really well.

The next afternoon, he skated again. This time we had tickets to sit in the stands to watch the entire performance. Kai enjoyed watching the skaters before him. Then it was time to get ready for his number. It was fun to see him perform. Unlike during the practices, he seemed to really enjoy the routine. With his group dressed in Cubs’ blue and the baseball music playing, they skated in a big circle, then waved their arms together. Kai’s favorite part was grabbing a simulated bat and smacking the woman dressed up as a baseball. We could see his smile even from where we were sitting in the stands. He did a great job.

We returned for one final performance the next day. He again enjoyed it.

The teen girls who had skated with him all these months were happy for him. I wished that he could answer their questions better and return their compliments. Instead, I spoke for him, thanking them for teaching him to skate and being there for him.

As we were leaving the rink, I thought back. Seven months ago, when we first came to the rink, Kai could barely stand up with his skates on. Now he had skated in an ice show and enjoyed it.

One of the girls told him that maybe next year he can learn to twirl.

I can’t wait.

The Top 5 TV Moms, and If They Had a Child With Autism

On this Mother’s Day, here are my selections of the Top 5 Moms in television history, and my thoughts on how they would have handled being a parent of a child with autism. Let’s see if you agree:

5. June Cleaver – Leave It To Beaver: Do you younger parents even know who June Cleaver is? When I was a young child, I watched reruns of Leave It To Beaver every afternoon. It was my mom’s favorite show back then because it presented the idyllic household of the time. June Cleaver was the quintessential ‘50s era stay-at-home mom who kept a clean house and had dinner ready, all while wearing pearls, a dress, and perfectly coiffed hair. A more pleasant person you will never meet. Especially in the real world.

I’m guessing that most June Cleavers of that era had never even heard of autism. And, while it is hard to picture her with a child who had autism, I do think she would have been very nurturing. Hmm, and think of what ‘The Beaver’ would have been like if he had autism. He might have been even more precious than he already was.

4. Marion Cunningham – Happy Days: “Mrs. C” was a kookier version of the ‘50s era mom, though she was actually a creation of the ‘70s. Similar to June Cleaver with her tidy house and nice clothes, Marion was more likely to let her hair down, metaphorically at least. Always sweet, she was wiser than she initially came across. As with June Cleaver, it is hard to picture her as the mom of child with autism. Though if she could be a mother figure for The Fonz, you figure that she would have been able to deal with autism. She certainly would have had more patience than “Mr. C”.

3. Lorelei Gilmore – Gilmore Girls: No, I did not watch Gilmore Girls. No self-respecting guy would ever admit to that. But, I heard that Lorelei was a single mom who had an extremely quick wit and could banter with the best of them. Her sense of humor would serve her well if she were faced with autism. And she always fought hard for her daughter, Rory, another vital characteristic of an autism mom. What a great show! I mean, I heard it was a great show.

2. Clair Huxtable – The Cosby Show: Bill Cosby’s tv wife was smart, tough, and funny. A professional woman who was capable of handling any situation, she was a no-nonsense mom who kept her kids, and most especially, her husband in line. If her son Theo had autism, I imagine that she would always know what to do. I certainly wouldn’t want to be on the other side of the table from her during an IEP meeting. She would be fearsome.

1. Debra Barone – Everybody Loves Raymond: Perhaps the most realistic mom on my list, Debra Barone had to put up with her lunkheaded husband Raymond and excessively intrusive in-laws. Often frazzled and quick to get upset, she was both tough and loving and ultimately worked everything out. I think she comes closest to representing the real-life autism mom. If she could deal with Raymond and his family, she could deal with anything.





That is my list. What is yours?


Happy Mother’s Day to all of you moms! But most especially to my wife, who is better than any tv mom could ever be. Kai, and I, are lucky to have you in our lives.

You may also be interested in checking out my list of The Top 5 TV Dads, and If They Had a Child With Autism.

A Day Without A Compression Shirt

My son has been wearing compression shirts to school since early last fall when his OT at the time suggested it. Many children with autism have sensory issues and crave deep pressure. With Kai, we saw immediate results. From the first time he wore the shirts, he performed much better at school than he did before. So, he has been wearing them ever since.

There have been a lot of ups and downs over these past several months so the shirts are not any kind of magic cure for all of Kai’s behavior issues. In fact, most of these shirts now have holes in them from his biting during times when he is upset. But based on the positive early results, we stayed with it.

Because he’s worn compression shirts to school every day, we have not compared his performance without the shirts since those first couple of weeks.

Until now.

This week was Educator Appreciation Week. Toward that, the other day my wife went to Kai’s school before the start of classes to help serve breakfast to the teachers and staff. That meant that I had to get Kai ready for school by myself.

In the rush, I did not check to see if he had on his compression shirt underneath his other shirt. It was only after he left for school that I saw it on his bed where I had left it for him. He had not worn it.

That day, Kai had his worst day of school in two months. By contrast, his behavior on the rest of his days this week was very good. So, that day is a clear outlier.

Was it the lack of a compression shirt? A scientist would say that one occurrence is not an adequate test. And scientifically speaking it is not. But we are not taking any chances. It’s compression shirts every day from now on.

Would I Take Away My Son’s Autism?

I’ve seen a lot of discussion around the hypothetical question, “If there was a pill that could take away your child’s autism, would you give it to him?” Jillsmo over at the Yeah, Good Times blog recently tackled that question with a thoughtful response titled “Yes, I Would.”

Upon first reading her post, my immediate response was “of course, I would do the same.”

Of course I would want my son to stay regulated, and not engage in self-injurious behavior.

Of course I would want to take away his anxieties.

Of course I would want him to be able to fully express all the marvelous thoughts he has in his head.

Of course I would want him to be able to make friends and participate appropriately in social situations.

Of course I would want him to eventually live independently and to have a productive life.

Of course.

But as I thought about it some more, I realized that there was more to it than that.

Besides all of the terrible things, how else is autism affecting my child?

Would he have his incredible math skills if it weren’t for autism?

How much of his quirky, but oh so loveable behavior, is due to his autism? Would he still be interested in things like the periodic table?

Would he ever ask for hugs again?

For a long time after Kai was diagnosed, I tried to figure out which of his characteristics and behaviors were typical of boys his age, which were caused by autism, and which were particular to his individual personality, regardless of autism. After awhile, I stopped trying to figure it all out. I decided that it didn’t really matter. It was all Kai, whether it was due to his autism or not.

When it comes to hypothetical questions like these, I feel the same way. Until we learn more about autism, until we really know not only what causes it but also what are all of its effects, until such a magic pill is real, it does not really matter.

I love my son for who he is. And, nothing will change that.

Mud Sundae

Spring has finally arrived here in Chicago. After a seemingly endless winter, it’s been great to finally get to spend more time outside.

This year, for the first time, my wife wants to start a vegetable garden. She has been on a health crusade for the past several months, with green smoothies and organic foods, among other things. Now, she wants to grow our own organic vegetables.

She started some seedlings a few weeks ago: kale, broccoli, carrots, and tomatoes, among other nutritious selections.

This past weekend, with the weather finally warming up, we decided to prepare our garden and transfer the seedlings outside.

Our son was excited to come out and help us. But Kai’s “help” was to throw dirt all over the place and to pour water where we did not want any. So, we pointed him away from us and told him to go dig some holes by himself.

As my wife and I got busy with the planter boxes and soil, we didn’t pay attention to what he was doing. But, after awhile, he came back over to us and asked if we liked hot fudge sundaes. I looked up. He had put a scoop of mud on the top of his head. And the smile on his face told us how proud he was of his creation.

I looked back over to where he had been digging. He had poured water on the dirt and created a mud hole where there used to be a few tulips. And, when he had finished showing us the “hot fudge sundae” on his head, he went right back to his mud hole. He looked as comfortable as a pig in slop.

When we go to the beach, Kai loves to cover himself with sand. He has sensory needs that are met by the feeling of the sand on his body. And so, I suppose it shouldn’t be too much of a surprise that he did the same thing with mud.

His brand new red t-shirt soon became black. You couldn’t tell that he was wearing shoes as they were not seen under the caked-on mud.

He was a happy kid.

Until it was time to go back into the house.

There was no way I was letting him inside with all that mud all over his clothes and body. I got the hose and sprayed him down with water. Kai hates getting water on his face but there was no avoiding it as I tried to get the muck out of his hair. He screamed for me to stop but I continued until it was all washed off.

When I was done, he ran off to be comforted by Mom, telling her how evil Dad was. Perhaps I was, a little bit. But he will think twice next time before creating a mud hole in our flower garden.

Still, he liked it so much. If the vegetables don’t come up, maybe we’ll make a mud pit instead.

Reflection

With death comes sadness. And when it happens to a young person, the emotions intensify. Grief. Pain. Heartsickness. But when it is the result of a young person taking their own life, the mix of feelings is almost unbearable.

Over the weekend, I received a phone call. My nephew’s college roommate, and close friend, had shot himself.

I was shocked, of course. You never expect anything like that. My thoughts immediately went to my nephew. He was present in the apartment when it happened. He accompanied his friend to the hospital. He talked to the young man’s parents about what happened. And he saw life pass from his body.

No one should ever have to endure any of that, let alone someone who is just beginning his journey into adulthood. My heart aches for the incredible pain that my nephew has gone through the past few days. And I am angry that he had to suffer so much trauma that will take much time to heal.

I also grieve for the parents who lost their son. Children are not meant to die before their mom or dad. I cannot imagine how terrible this is for them. As a parent myself, I would think that this is the worst thing that can happen.

You try to make sense of it all. But, I think, the reality is that it doesn’t make sense. This is not how things are supposed to happen.

I wish I could find the words that would somehow make everything better. Of course, that is not possible.

Instead, I quote from part of an essay that may provide just a bit of perspective. Mary Schmich of the Chicago Tribune wrote last Thanksgiving:

My mother once said something that has played over and over in my mind in the few months since she died, and I hear it strongly as we get closer to Thanksgiving.

"Even the terrible things," she said, on a sunny day in what would be her last September, "seem beautiful to me now."

I rarely saw my mother cry, despite the many reasons she might have, but on that afternoon in her backyard, she cried a little, tears that I sensed were equally for the beauty and the sorrow in her life, and for the recognition that, when it's all done, beauty and sorrow are one and the same.

Even the terrible things seem beautiful to me now.

What she was saying that day, I think, was that it's all life. The things that hurt your heart, wound your pride, drain your hope, leave you lost, confuse you to the point of madness. That's life, life with its endless, shifting sensations and its appalling urgency and its relentless drive toward mystery…

I think you have to be old to see how beautiful the terrible things are, my mother said that afternoon, and I suspect she's right.

Maybe we can't see the beauty in the terrible things until we're approaching the final beauty and terror. In other words, death: the ultimate proportion gauge.

Maybe only when you take your last step back from the canvas can you see how gorgeous all those wrong strokes and smudges look when viewed together.

All of the best times in my life have grown directly out of the worst times. What feels like manure often turns out to be fertilizer.

But what I took from my mother's remark wasn't just that good may grow out of bad. It's that the bad is its own beauty.

We all resist what's difficult and painful. We run from it. We curse it. It comes anyway, as inevitable as weather.

Most of us have gone through at least one time in our lives that we would call terrible. Everyone I know well certainly has.

A disease. A rape. A parent's suicide. The death of someone you love. The collapse of a dream.

These are things you would never wish on anyone, just as I would never have wished for my mother some of what befell her.

But as we approach Thanksgiving, I'm more grateful than ever to her for the ways she helped everyone around her understand that the hard times make you whole. They make you play the entire keyboard. They allow you to experience the full range of the most basic thing we give thanks for: being alive.

Life goes on. We all go on. Tomorrow, I will resume writing about some lighter topics. Today, I pause for reflection.