Thursday, March 31, 2011

Greetings From New Mexico

It is Spring Break, and my wife wanted to go somewhere warm and to a place we had never been before. So, here we are in New Mexico.

Traveling with our son can be challenging. We had some anxiety about how Kai would do with all the waiting at the airport, and just being on the plane. But those went very smoothly. It’s always nice when your child doesn’t use any threatening words that would get you arrested or kicked off the plane. But, Kai’s behavior went beyond that. He waited nicely in the security line at the airport, and the flight was uneventful. I give at least some of the credit to the most impactful invention of the past 50 years – the personal dvd player. But, really, my only issue was Kai asking me every two minutes what state we flying were over.

After we landed and went outside, it felt great to be in sunshine and warm temperatures. It was quite a change for us winter-weary Midwesterners. We got our rental car and were on our way.

Recently, Kai has been interested in a series of children’s stories called “Harry and the Dinosaurs.” So, we thought what better way to kick off our trip than to head to the New Mexico Museum of Natural History and Science. There, we had learned, we can view dinosaur fossils, as well as go through their planetarium, another favorite of Kai’s.

When we got there, he seemed only mildly interested in the dinosaur sculptures outside, and showed virtually no interest in the real dinosaurs inside. It was disappointing, and then challenging, when we had to struggle to keep him there long enough to see the dinosaur movie that we had bought tickets for when we entered the museum. We did get him to stay, but he had little interest in the movie as well. Oh well, sometimes the best-laid plans just don’t turn out.

Kai was much more excited to go to our hotel. And when we got there, we were all thrilled, too. Set against the Sandia Mountains in a quiet location well outside of Albuquerque, it feels like we really are away from home. We could not have picked a more beautiful, serene place.

Hanabi Boy in a peaceful place? It will be quite a vacation.

Tomorrow: we travel the High Road to Taos.

Photos of our trip can be found on our Facebook page.

Tuesday, March 29, 2011

Debi Smith’s Song, Italy and France

It is Spring Break and I am taking a break from writing. Instead, here is a song by Debi Smith called Italy and France, about Debi’s experience having a child with autism. You can follow along with the lyrics as you play the video.

I had a dream, I was going to France
My bags were packed
with tour books, romance
I got on the plane, and then I found
I was not Paris but Italy-bound
I was not Paris but Italy-bound

All of my friends were on the right flight
What would I do? I hadn’t packed right
It's not what I’d planned,
my mind spun around
I was not Paris but Italy-bound
I was not Paris but Italy-bound

We landed in Rome, I had to make
The best of what seemed a colossal mistake
But it turned out, as it unwound
I loved Italy, I was spellbound
I loved Italy, I was spellbound

When I got home,
my friends talked of France
They shared their stories;
I watched while they danced
I was sad I'd not been there,
but then I'd rebound
I was glad I was Italy, not Paris-bound
Because I loved Italy, not Paris, I found

Now I have a child who’s not the same
As other children, and its like my dream
It's not what I'd planned,
but as it's unwound
I'm glad I am Italy, not Paris-bound
Because I love Italy, not Paris, I’ve found

Monday, March 28, 2011

Spring Break

My son celebrated the start of Spring Break by having Mom inflate 118 balloons. For you regular readers who have been paying attention, you know that there are 118 elements. After the balloons were inflated, Kai put the symbol and atomic number on each one, and then they started to create a periodic table out of the balloons.

With Spring Break going through the end of March and into the start of April, it’s a good time to take stock of Kai’s progress in school this month.

Sometimes it seems as if the only thing consistent about our son’s behavior at school is its inconsistency.

In January, he put together a whole month without having a major incident. But, just when we started to think that maybe, just maybe, he was able to control his behavior over a longer period, we had the terrible month of February where he had more incidents than ever before.

March turned out to be a bit of a mixture of the two previous months. There were more major incidents than we’d like, but fewer than in February. There were also some great days in which he was safe and earned high marks on his point sheet.

So, why this improvement from February?

I have no idea.

Maybe it is the power of NASCAR. We started a new incentive program in which he could earn miniature NASCAR diecast cars for good performance. He’s not so much into the cars, but the numbers on the cars are another story. He earned his first car, #48, very quickly. Then he lost a little interest and took longer to get the second car.

Perhaps the joy over discovering the periodic table kept him in more of a serene mood in school this month.

Whatever it is, we’re glad to see the improvement. Though it is frustrating that it is not consistent. And who knows if the trend will continue or reverse again.

But, we have no time to worry about that now. We have a balloon periodic table to complete. Oh no, I think I heard beryllium pop.

Friday, March 25, 2011

A Very Fine Arts Festival

My son’s school had a fine arts festival last night. The students’ artwork was on display and the kids gave a concert. But it was not exactly what you might think. Not unless you were expecting Cubism and psychedelic rock.

The first thing that tipped me off that this was no ordinary school arts festival was when I saw that the artwork was not simply a disparate collection of art done by the students, but rather was inspired and organized by the art movements of Impressionism, Cubism, Still Life, and Pointillism. Even among the first graders, the art teacher had introduced the students to the art movements that changed history in a way that they could understand and enjoy. The students were then challenged to use their newfound knowledge to create their own works of art, which were on display last night.

When I was in first grade, my own artwork, if you could even call it that, consisted of rudimentary stick figures or simple drawings of the sun or moon. It would be more than two decades before I would learn of Cubism or any of the other art movements. And so, I appreciated this surprising art festival as much as any I had ever been to.

The concert was organized by a similarly progressive-minded music teacher. In class, the students learned of the famous classical composers like Bach and Chopin and Stravinsky. But, on this night, the songs they performed were of a different era.

I am used to kids concerts where the songs are the usual standards we’ve come to expect at these sorts of things. But, there was no “I’ve Been Working on the Railroad” at this one.

Instead, the older kids (3rd through 5th graders) kicked off the concert with “She Don’t Use Jelly,” a song originally done by the psychedelic alternative rock band the Flaming Lips. I have to admit that I had not heard of the Flaming Lips before last night. But, this inventive and fun performance has me curious to learn more about them.

The next tune was another unexpected choice, the Bonnie ‘Prince’ Billy arrangement of the R. Kelly song “The World’s Greatest.” Now, perhaps I am out of touch, but I would be surprised to find very many R. Kelly songs being sung at other school concerts.

When the older kids were done, my son’s group went up to perform. They sang the Buddy Holly classic, “Peggy Sue” and the Beatles’ “Ob - La - Di, Ob - La - Da.”

My son stood out. Kai sang loudly, enthusiastically, and with much expression, if not so much on key. We know that the boy standing next to Kai is sensitive to loud noises and so he was annoyed by Kai’s singing. My wife was grimacing at times, but I was smiling the whole time. A shy boy he is not. It was great to see him express his love of music.

And so, the evening was more than just a fine arts festival. It was a glimpse into the education my son is getting. School should be about much more than reading and math. It should be about expanding horizons, fostering creativity, learning from the past, and building the foundation for a great future.

I saw that in my son’s school. You can’t have a better evening than that.

Check out our Facebook page to see a few examples of Kai's artwork.

Thursday, March 24, 2011

Connecting with Faraway Loved Ones

When you have loved ones who live on the other side of the world, it is hard to feel as connected as you would like to be. The separation is difficult. And that is particularly true for my wife right now with her parents living in Japan.

My wife was born and raised in the Tokyo area, and her parents still live there. She, of course, has been very worried about them. Thankfully, they survived the earthquake. But, the news of radiation from the nuclear plants continues to concern us.

Long before the earthquake, my wife has been dreaming about going to Japan with Kai one day. But traveling to a faraway foreign country with an autistic child just hasn’t seemed feasible for us, and probably won’t for a while yet.

It is easier on us to have her parents to come here for a visit, and last year they did. But the cost and distance prevent that from being a more frequent occurrence.

Emails communicate the facts, but without the emotional connection of a personal interaction. Phone calls are okay, but they don’t give my wife’s parents much satisfaction when it comes to interacting with their grandson. Let’s face it; communicating with Kai is hard enough when you’re in the same room with him. A phone conversation is even more difficult. In the case of his grandparents in Japan, there is a language barrier that further adds to the challenge.

And that is why we decided to try Skype.

I’m old enough that when I was a kid, the idea of a video phone was the stuff of pure comic book fantasy. I did not believe that I would ever see such a thing during my lifetime. And so, when video connections were starting to be made over the internet more than a decade ago, I was eager to try it. The quality on those early calls was bad, and once the novelty of it wore off after the first few tries, I never used it again.

But, lately, I’d heard a lot about how good the experience is these days. And so, when Kai’s grandfather in Japan said that he wanted to do it, we both got cameras and loaded Skype onto our computers.

A few days ago, we had our first video call. It was amazing, really, to see Jiji and Baba’s faces so clearly and to hear their voices so well. It was as if they were sitting at the kitchen table with us.

Of course, the best part was that they got to see and hear Kai. He showed them a book that he had just gotten from the library, and rambled on about it. My wife explained in Japanese what he was talking about.

Kai didn’t stay on the call too long. But, it was long enough for his grandparents to feel a bit more in touch with him. After Kai and I went downstairs to play, my wife stayed on and had a longer conversation.

This kind of connection would be wonderful anytime. But now, more than ever, it is particularly meaningful.

We are thinking of you, Jiji and Baba. We will see you again soon.

Wednesday, March 23, 2011

A Spot of Ketchup, A Bewildered Dad

I should be used to it by now. But it still confounds me how seemingly little things can bother my son.

I know that sometimes sensory issues can cause him distress. But, there are times when I am baffled as to why something upsets him so much.

Take the other night, for instance. Kai was having a burger and fries for dinner. He sometimes likes to dip his fries in ketchup, so my wife squeezed a little on his plate, off to the side of the burger.

From his reaction, you might have thought that she put a live octopus on his plate. He screamed that he wanted the ketchup off his plate immediately.

There are many times when we adapt to Kai’s persnickety ways. We’ve let him have separate forks for his meat and his vegetables, just to name one example. But, on this night, it didn’t feel right. I couldn’t see any reason why he couldn’t have a little ketchup on his plate. After all, it wasn’t touching his other food. It was just there.

It would have far easier just to clean the ketchup off (trust me on this one). But, at that moment, I decided that he needed to eat his dinner with the ketchup on his plate. Perhaps I was influenced because of the way Kai screamed about it instead of asking nicely. Maybe it was because he had already angrily refused to try the new soup that was also served for dinner.

Regardless, I didn’t think it was a good idea to make accommodations for something that seemed to have no logic behind it. I thought that it was important to teach my son to be flexible, and that he shouldn’t let a silly thing like ketchup on his plate bother him so. I thought that he should understand that not everything in the world will be changed for him just because it bothers him.

It became quite an ordeal. He shouted and screamed and said many threatening words. Of course, he went into a timeout.

Eventually, he calmed down and ended up back at the dinner table. He tried some of the soup. And when he had a few bites of the hamburger, I gave him a clean plate with no ketchup on it.

Was I wrong to try to leave the ketchup on the plate, knowing how upset it made him? What is the balance between trying to teach a child with autism to be more flexible, and doing what it takes to keep him from getting too upset? Is there a good reason, sensory or otherwise, why having ketchup on the plate should make him so angry? Is there a better approach?

Bewildered and unsure, that is the state of this particular dad trying to raise a child with autism.

Pass the ketchup, please.

Tuesday, March 22, 2011

Ice Show Practice + Cubs = Trauma

If all goes according to plan, my son will be participating in an ice show on Mother’s Day weekend. Of course, that is a big ‘if.’

This past Saturday was the first practice. At 8 AM, my son and I went to the same rink where Kai has his weekly skating class. Many of the kids in his special needs class are taking part in the show, so we decided to sign him up for it as well.

I was curious to see what type of routine these kids would be doing. While the disabilities of the kids vary, I know that several, including my son, have issues with behavior. I wondered how the teacher would be able to get them to perform together.

It wasn’t easy.

One boy refused to cooperate from the very beginning, skating away from the group and mostly hanging out in the corner of the rink while his teen assistant unsuccessfully tried to coax him to join the others. His mother commented that she would have been really stressed out and embarrassed if he was doing this in a class full of typical kids, but with this group she felt comfortable knowing that all of us other parents would understand. Still, I think she felt somewhat relieved when another boy started having problems, too.

That boy was my son.

At first, Kai skated along with the group nicely as the teacher tried to instruct the kids on the routine. The highlight of the performance will be a simple dance number set to the Steve Goodman song “Go Cubs Go.” Even on the first ragged attempt, the kids looked pretty cute as they waved their arms back and forth, somewhat in unison. During the actual performance, all of the kids will be wearing Cubs shirts.

After about a half hour, I saw Kai lying on the ice. Apparently, he had had enough.

Frankly, I couldn’t blame him. After all, it was the Cubs. Couldn’t they have picked a number that didn’t have anything to do with over a century of losing? I was hoping to spare my son a lifetime of heartache, but, here he was, only seven years old, and he was forced to dance on ice while listening to the musical fairytale that “The Cubs are gonna win today.”

Eventually he got up off the ice… so that he could skate off the rink and tell me that he wanted to go home. Practice wasn’t over yet, but I didn’t have the heart to subject him to more Cubs’ torture.

Still, the group photo for the ice show program was scheduled to be taken after practice so I wanted him to stick around. We went into the hallway and I tried to calm Kai down as he kept insisting, quite loudly and vehemently, that he wanted to go home.

When it was finally time for the photos, the girls who help him skate each week tried to cheer him up. He barked at them that he wanted to go home. I also tried being nice so that he would look somewhat pleasant for the photo. Yeah, that didn’t work.

So, I told him firmly that he was going to be in the picture and that I wanted to see a smile. If not, he would lose some privileges. When the photographer was setting up the group, I dragged him to the first row. He didn’t smile. The photographer snapped off a couple of shots. I have no doubt that my son will be the grouchiest-looking of all the hundreds of kids that will be in the program.

We shall see if he has any more of a smile in the show, or if he ends up skating in it at all. I just hope that the Cubs’ trauma doesn’t scar him for life as it did so many of us.

For those of you not from Chicago, here is the story of Steve Goodman and his "Go Cubs Go" song:

Monday, March 21, 2011

An Elementally Routine Weekend

It was a routine weekend. Well, by our standard anyway. It was full of elements and NASCAR. What? That’s not the weekend routine at your house?

After having no race on the schedule last weekend, NASCAR returned this weekend. My son didn’t watch too much of the race, but now that it has become part of our Sunday routine, he insists on having it on.

Instead, Kai spent most of the time that the race was on talking about elements. Yes, he is still into them.

At our weekly trip to the library, he got another book about them. The choice this week was a book about sodium and potassium. We read a little bit of it, but mostly he likes looking at the pictures of the atomic structures.

He also asked me to find a game online called Space Chem. Apparently, one of Kai’s TAs at school showed it to him. When Kai first asked me to look for it, I had trouble as I thought that he was saying Space Chum or Space Chimp as he was pronouncing the “Ch” as a “ch” sound and not a “k” sound. I finally found it after I had him spell it out.

It took my non-scientific brain a while to figure out how the game is played. It is a type of puzzle game and the premise is that you take on the role of a Reactor Engineer who manipulates atoms to create molecules. Once I understood what I needed to do, it actually was kind of fun and challenging to play, in a geeky sort of way.

Kai mostly wanted to watch me play it, as he enjoyed watching the atoms go around the circuit that we build in the game. I managed to get him to try it as well, and he was able to figure out the beginner puzzles that we did. But this game is really for people well beyond his age so I’m not sure how much he understood the storyline. However, it’s a step beyond single elements and into molecules, so hopefully he learned something useful. Though, he did drive Mom crazy asking her to do it. She tried a couple of the puzzles, but it wasn’t her thing and she wanted Kai to do them instead of constantly pestering her about it. And, he’s not exactly one to let things drop just because you ask him to.

Anyway, now it is Monday and the weekend is over. But, that doesn’t mean that the elements are forgotten. Today’s element of the day is actinium. Just so you don’t feel left out, its symbol is Ac and its atomic number is 89. Now, go have fun with it.

You can find a demo of Space Chem here.

Friday, March 18, 2011

Progress, But Not Without Holes

He did it. My son earned a green belt in his karate class yesterday.

I marveled at how well Kai did. He really knew all of the kata (karate movements), performing them as well as any of the kids. He performed with no hesitation, demonstrating his confidence.

Even more amazingly, he kept quiet while the other kids were performing their routines. The first time Kai took a karate test more than a year ago, he couldn’t stop chatting and laughing when he was watching the others. We felt embarrassed over how disrespectful he was. This time, after being the first to perform the test, he managed to sit still while all the other kids had their turns.

There was another thing that surprised me that had nothing to do with performing karate. When one of the teenaged sempai (teaching assistant) entered the locker room before the test, Kai greeted him with a loud “Hello, Michael.” He followed up with an enthusiastic “How are you doing?” I don’t recall very many times when my son initiated a social greeting like that, at least not without following it up with a question about elements or the other person’s age.

The day wasn’t a complete success, however. Kai came home from school with a large hole in the green t-shirt he wore for St. Patrick’s Day. He had bitten his shirt when he got upset in P.E. over being tagged in a tagging game.

That’s my son. One moment he chews holes in clothing over something that makes no sense to us; another moment he impresses us with how much he has matured.

I’ll take the progress. Now, we need to fill in the holes.

Thursday, March 17, 2011

Going for Green

Yesterday I wrote about Green Smoothies. Today, my son goes for a green belt on his karate exam. Happy Saint Patrick’s Day, everyone!

My son has been in a karate class for kids with special needs for a year and a half. When Kai first started, we thought that he would not be able to keep up with his peers in the class. Based on his performance in school at the time, it seemed likely that he would not be able to listen and follow along with the rest of the group. Also, physically, his core muscles were weak, he lacked coordination, and did not have good control of his body or awareness of his body in motion.

That he was able to learn and fit in with the class after just a few weeks was an eye opener for us. A lot of credit goes to the firm methods of the sensei who was able to get Kai to focus and perform well.

Kai earned his yellow belt in a few months and then an orange one after about a year. Still, he always kept a pretty nonchalant attitude. While the other kids seemed to take the karate more seriously, Kai often had a goofy smile on his face while practicing his kata (karate movements). Not exactly ninja like.

Recently, however, he has become more diligent. For the first time, he cares about the test. He wants his green belt. And, he seems confident that he will get it. At class earlier in the week, after he demonstrated his kata, he told sensei, “I did a good job. Can I have my green belt today? Of course sensei barked at him that he would have to take the test.

So, we shall see how it goes today. I don’t know if he is quite ready to be awarded the green belt just yet. But, I am happy to see how he has matured.

Whether he goes green or stays orange, it will be a nice Saint Patty’s day for us.

Wednesday, March 16, 2011

Green Smoothies

A lot of families with autistic children have their kids on a gluten-free, casein-free (GFCF) diet. We do. But lately, my wife has been taking our nutritional health to a whole new level.

I think most would agree that the diet of many Americans often leaves a lot to be desired. I do not exclude myself as, in my single days, my meals sometimes consisted of Doritos, Oreo cookies, and fried foods.

With the benefit of my wife’s cooking, I’ve eaten much healthier the past few years. And, we both have become more conscious of nutrition as we’ve tried to instill good eating habits onto our son. But, while Kai isn’t the picky eater he was until a couple of years ago, it still is sometimes hard to get him to consume as much vegetables as we would like.

So, my wife found a new approach: Green smoothies!

We have found that it can be easier to get our son to consume a green smoothie than to eat an equivalent amount of vegetables. And, it’s not just for our son; my wife and I are also getting more greens into our diet.

More greens mean more nutrition, including antioxidants, and better health overall. I can tell that my wife has more energy and I am feeling better overall. We’ve cut way back on processed foods which contribute to so many of the health problems that people have today.

The basic formula for a green smoothie is pretty simple. My wife usually blends a green vegetable with fruit. Often, she will add water or fruit juice to give it a more liquid consistency. Sometimes she will add herbs or sprouts as well. For me, the fruit part is what makes it taste great.

Some of the specific ingredients she has used include:
  • Green vegetables – kale, spinach, wheatgrass, greens, lettuce, celery, bok choy, just to name a few
  • Fruits – apples, avocado, banana, mango, raspberries, oranges, pineapple, strawberries, among others
  • Herbs – cilantro, parsley, basil are my wife’s favorites
  • Sprouts such as alfalfa, broccoli or clover can also be added

My wife tells me that a completely raw food diet has even more health benefits. I love my burgers and roast chicken too much to do that. But, it is good to know that we’re adding the nutrition we need without really sacrificing a lot of taste.

Raising children is hard work sometimes. The consequences of poor nutrition – being sick or just feeling sluggish – adds to the challenge. With a child who has autism, it is even more important that we parents stay healthy and feel good.

Consider going green. With a smoothie, that is.

My wife’s favorite resource for green smoothies is a book by Victoria Boutenko. “Green Smoothie Revolution" gives more explanations of the benefits of green smoothies as well as lots of recipes.

Tuesday, March 15, 2011

Daylight Saving Time – Grrrr

After four years of my son waking up in the middle of the night on a regular basis, Kai finally started sleeping through the night more often in January. We initially wondered how long this new pattern would last, and was thrilled that it actually became even more consistent in February and into early March.

Then, this weekend, we had to change the clocks for Daylight Saving Time.

At 3:15 on Monday morning, I heard the familiar knocking on our bedroom door. Uh oh. My son was awake.

Last night, he knocked at 2:00 AM. He was very chatty.

Here we go again.

We are hoping that his awakening in the middle of the night is only a matter of adjusting to the time change. But, with Kai, who knows?

Why did we have to create a disruption in his sleep pattern just when we finally had things going good?

They say that more daylight helps to brighten people’s mood. Maybe that will turn out to be so. But, right now, I am just grouchier.

Daylight? Bah humbug. I’d rather have sleep instead.

Best of the Best, Edition 4: Family life

The topic for this month’s S-O-S Best of the Best (BoB) is family life as it relates to invisible special needs. A total of 34 bloggers submitted posts and shared many different experiences and viewpoints on family life with a child with special needs. Specific topics include marriage, outings, parenting, siblings, vacations, and the child’s future, among others.

Please check out it all out here.

And, for those of you visiting from Best of the Best, thank you. Here are some recent posts you may find interesting:

Monday, March 14, 2011


Weekends are a fun time. Or so we hear. Sometimes I wonder if that is just a bunch of hooey spread by some PR firm hired by the Chief Marketing Officer of Saturdays and Sundays.

For us, Sundays are the day when our son has no therapy or extracurricular activities. That means that my wife and I have the entire day to spend with Kai.

Am I a bad parent if I say that it is stressful to spend a whole day with our son?

It sounds awful, doesn’t it? I am shrinking in shame as I type this.

And yet, as Kai has become more belligerent toward us, it is becoming less enjoyable to be with him. When we’re together for a whole day, it is becoming inevitable that he will talk back to us and become disrespectful.

This weekend, he told us that he didn’t want to be our son anymore and that he would find another mom and dad. I told him that it didn’t work that way. We are his parents and he cannot just find someone else. Then he said that he would live by himself. He said that he didn’t need us. I won’t go into all of the details, but it went on to become a very unpleasant afternoon. He said even harsher things and went into a long timeout in his room.

He had to stay there until he cleaned up the books he threw on the floor and adjusted his attitude. Eventually, he did clean up. And, when I went in to talk to him, he finally showed some remorse. I talked to him about respect, mean words, and things he could say instead. He seemed to listen, and, this time, accepted his punishment that he would not have his periodic table or elements flash cards for the rest of the day.

While that sounds encouraging, I know that it is only a matter of time before we will have to go through this again.

I know that being a parent is hard work. We can’t expect kids to always do what we think is right. We have to teach them. It takes time and a lot of effort. Eventually it will pay off. So, we persevere.

I understand all that.

But, that doesn’t mean that I don’t feel relieved that the weekend is over.

Happy Monday.

Friday, March 11, 2011

Relief, Sadness, Perspective

We just heard from my wife’s parents who live in Japan. They are okay, though perhaps still a bit unsettled from having experienced the most severe earthquake of their lives. But, they are okay enough to tell us not to worry about them.

It’s a relief for us; though we remain sad knowing that many others will not receive good news.

When tragedy of this magnitude hits, it puts perspective on the problems of our day-to-day lives. Oh sure, there are definitely big problems that we all deal with, but perhaps we needn’t get so stressed out over all of the little ones, too.

This weekend, I’m going to appreciate all of the many wonderful things I am blessed with in my life, and especially enjoy my time with my family. .

Our hearts are with all of the victims and their loved ones.

Thursday, March 10, 2011

There’s Something About Mary: Great Therapist and Much More

If I could have one wish for all families who find out that their child has autism, I would wish that they could have a Mary enter their lives.

Mary was our son’s behavioral therapist for nearly four years. But she was really much more than that. She was an advisor, consultant, counselor, teacher, and friend.

We met Mary shortly after Kai was diagnosed. We didn’t know very much about autism back then. All we knew was that Kai needed help. He needed therapy, we were told. And, Mary was recommended to us.

The first time she met Kai, she got him to respond to her, something that he rarely did with anyone at that time. She was only a year or two out of graduate school. But, she seemed very capable. She was confident that she could make a difference, and, in doing so, gave us confidence in her. We placed our trust, and Kai’s future, in her hands.

She did not let us down.

She worked with Kai three times a week in that first year. She also put together a team of therapists that came to our house so that Kai would have therapy thirty hours a week.

As a therapist, Mary was wonderful. Her goofy personality helped to foster a strong bond with Kai. But, she also was firm with him, and knew just how much to push him. She taught him to do things that we thought he might never do.

But, Mary was much more than a great teacher for our son. She taught us, too. She helped us to learn about autism, how it impacted our son, and what we could do about it. Every time we had an issue arise with Kai, we consulted Mary. And she always came up with a plan for addressing our concerns.

It was comforting to know that we would see Mary every two or three days. Mary coming over to see Kai was almost like having our own personal psychotherapist who made house calls. Sometimes she would just listen. Oftentimes she provided advice. And, when we needed it, she would provide encouragement.

On Mary’s advice, we sent Kai to a regular preschool. She went with him as his aide, but gradually, she faded her support so that he wouldn’t overly depend on her.

As time went on, our own dependence on Mary faded, too. We’ve learned a lot about autism. We feel more confident in our own abilities to deal with issues as they arise.

When Kai’s school schedule changed, he wasn’t able to see Mary on a regular basis anymore. Last night, she came over for dinner. It was the first time we had seen her in months. She marveled at how Kai had grown. We enjoyed seeing her again and getting caught up with all of her news.

She is getting married next month. She wants to start a family soon. We have no doubts that she will be an awesome mother.

And so, she is no longer Kai’s therapist. We don’t consult with her on a regular basis.

But, one thing will never change. We will always consider her a friend.

And, we will always be grateful that she entered our lives when we needed her the most.


This post was submitted for the S-O-S Best of the Best series on Therapy and Kids With Special Needs, which will be published on August 15, 2011. You find more information and read other submissions here.

Wednesday, March 9, 2011

Family Network TV Premiers “Siblinghood”

How do teenagers feel about having a brother or sister with special needs? An exciting new show gives us some great insights.

Meet Alex, Maggie, Nick, and Evan. They are the four bright teens who are featured on Family Network TV’s new program, “Siblinghood.”

The premier episode, “Sibs Take Manhattan” introduces us to the hosts:
Alex has an older sister, Sam, with Down Syndrome;
Maggie has a younger sister, Katie, with a rare chromosome deletion;
Nick has a younger brother, Joey, with autism;
Evan has a brother with higher functioning autism.

    Children with disabilities require of lot of attention from parents. But, how does that affect the “other” children? What is their perspective? Over the course of the show, we will hear from each of the four hosts, as well as others along the way.

    In the first episode, we are introduced to Kelly, a college student who also has a sibling with special needs. Kelly provided the most impactful moment when she spoke of how growing up with her brother inspired her career choice of working with kids with special needs. She got emotional, and we all did as well, as she recounted that “I missed out on a few things when I was younger which seemed like a big deal at the time… but looking back on it now, I’m so thankful that I had that time with Steven.”

    Real teens. Real emotions. And, a really good program. Check it out here.

    Tuesday, March 8, 2011

    Our First Family Vacation

    Our seemingly endless winter has us thinking about vacations. Spring Break is not too far off and, hopefully, summer will eventually arrive as well.

    Vacations are supposed to be fun and relaxing, a getaway from all the stress of daily life. But, going on vacation with a child with autism can be even more stressful.

    Until last year, other than trips to visit family, my wife and I had not taken a real vacation with our son.

    When Kai was younger, especially, it felt risky being in public with him for long stretches. We may not have known when or where something would happen to set him off, but we felt it was just a matter of time.

    Often, his fuse would be lit by having to wait. And on vacations, there are plenty of occasions that require a lot of waiting: Waiting in the security lines at airports; waiting for food to be served at restaurants; waiting to get on rides at an amusement park.

    By early last year though, he had made progress in a lot of areas. He was able to wait longer. He did not get upset as often.

    And so, last spring, with his grandparents wanting to take him to Disney World, we decided to go.

    The short version of the story is that we had a great time. Kai enjoyed the 3D movies the most, but he enjoyed all of the rides he went on as well. But, being Kai, he also had as much fun riding the elevators and counting the floors in our hotel, and studying the maps of all of the different theme parks that we went to.

    We tried to prepare for the trip as best we could. Here are some of the things that may have helped things go relatively smoothly:
    • Create daily schedules: Kai likes to know what is planned so he can organize the day in his head. So, my wife created a schedule for each day’s activities. We were able to set expectations and prepare him for what was coming.
    • Get the special needs’ pass: Disney makes accommodations for those with special needs that minimizes the time waiting in lines for attractions. Without the special pass, there is no way we would have even considered going to such a popular place. It is unfortunate that this benefit remains unique among major family vacation destinations.
    • Avoid overload: Our typical day involved going to one of the parks right after breakfast, but coming back to our hotel room for lunch. Then, we would play in the hotel pool and relax in the room before heading back out to a park later in the afternoon. We pretty much saw every attraction we wanted to (thanks to the pass), and felt far less stressed than we would have if we have tried to stay out at the parks all day long.
    • Minimize time in restaurants: We were able to stay in a suite that had a full kitchen and eating area so that we could eat all of our meals there instead of in restaurants. No restaurants meant no waiting for a table, no waiting for food, and no resultant meltdowns.
    • Ship the things you need: Kai takes a lot of supplements and is on a gluten-free casein-free diet. Rather than carrying his supplements with us in our luggage and spending time trying to find stores that carry special foods down there, we shipped almost everything we needed to the hotel ahead of time. With airlines charging for every piece of luggage these days, we may have even saved money by doing it this way.
    • Stay nearby: We stayed at a hotel that was near the Magic Kingdom, and a monorail ride away from Epcot. Doing so reduced the time waiting for buses and traveling to the parks. We also were able to see the nightly fireworks from our room on the nights we decided not to stay to see them in the park.
    • Go with grandparents: As my wife’s parents live on the other side of the globe, we don’t get to see them too often. So, it is always a special time when we get together. Getting to share the experience of their grandson’s first trip to Disney World was an exceptional treat. And, it never hurts to have an extra caregiver or two around on a trip like this.

    Now, I don’t want to leave you with the impression that everything went perfectly. There was one incident where Kai got very upset while we were at the Magic Kingdom. It started when he may have gotten something in his eye. When we couldn’t get him settled down quickly, we decided to go back to our hotel room. I may still have a scar from where Kai was biting my arm while I held him as we rode the train that goes around the park back to the entrance. But, once we returned to the haven of our room, he calmed down and was fine.

    That aside, the trip was everything that you would want a vacation to Disney World to be. I had heard others describe the wonder in a young child’s face when experiencing it for the first time. It warms my heart that I got to see that same expression on our son’s face, too.

    Monday, March 7, 2011

    The Periodic Table???

    My seven year old son is in a state of euphoria. He has discovered the periodic table of elements.

    By now, my wife and I are not shocked when Kai is fascinated by things that hold no interest among most other kids his age. After all, it was a year ago that he memorized the Hebrew alphabet all by himself in a few days. And just last week, he was hooked on learning about prime factorization. But even so, this latest one captured our attention.

    It all started a few days ago when he received a chemistry kit as a belated birthday present. Science is one of his favorite classes at school, so Kai enjoyed doing the experiments from the kit. The projects prompted some questions, and one thing led to another, and I ended up going online and showing him the periodic table.

    Well, that was all it took.

    For a boy who loves numbers and letters, discovering the periodic table was akin to discovering the Holy Grail. After all, the table has 118 elements (so I found out), each with its own unique atomic number and letter symbol.

    It wasn’t long before he was telling us that hydrogen was number 1 and symbol H, while neon was number 10 and symbol Ne.

    He went nuts on the computer, clicking on every link for the periodic table. One of his favorite discoveries was YouTube videos of Tom Lehrer singing the names of all the elements to the Major-General’s Song from The Pirates of Penzance.

    He also found a great website that had a dynamic periodic table. Clicking on every element brings up information for that element, as well as pictures and video of scientists talking about and demonstrating the element. Now, the thought of scientists talking about elements may sound boring to you, but my son wanted to watch each one.

    When we went to the library on Saturday, he asked a librarian to help him find a book on the elements. Shockingly, there were none in the little kids’ section so she had to direct us to the area for older kids. We got the simplest book I could find, though it was still more appropriate for high school kids than first graders.

    Back home, he had Mom make flash cards of all of the elements. His most prized possession is now a set of 118 laminated cards.

    Through all of these cards, books, websites, and videos, I was wondering how much of the information he was actually retaining, and was glad that he appears to be learning more than just the numbers and symbols. Kai now knows that neon is one of the noble gases, that hydrogen is the lightest element, and that carbon has the highest melting point.

    Still, it is not always easy dealing with Kai’s obsessions.

    For instance, he wanted to do the same experiments that the scientists were doing on the videos he was watching. The experiment with hydrogen, for example, involved filling up a balloon with hydrogen, and then exploding it into a ball of flame.

    Never mind the fact that I didn’t have any hydrogen handy, we were not about to explode anything in our house. But none of my explanations could stop Kai from continually asking me to do the experiments. And, after that, the experiments in his new chemistry kit seemed too tame to interest him any longer.

    He also was annoying when he asked me and Mom what our favorite elements are. Okay, that may not seem so annoying. But when he repeatedly asked us what our 117th favorite elements are, perhaps you can understand why we started to lose our sense of bemusement over the whole thing.

    However, there were some side advantages to all of this. At the skating rink on Saturday morning, Kai was giving his volunteer helper a hard time about trying something new. I told him that if he did not skate nicely, he would have no periodic table for the rest of the day. The mothers of the other kids, as well as the teen volunteers, thought it was funny that a seven year old would be motivated by the loss of periodic table privileges. But, that is my son.

    So, what is next? The Pythagorean Theorem? The theory of relativity?

    Frankly, I’d be happier with a week of no incidents at school. But that would be too much to ask for now, wouldn’t it?

    Here is one version of The Elements song:

    Friday, March 4, 2011

    Rigidly Determined to Help My Son

    My wife was at school to witness our son’s latest major incident.

    It actually happened right after a big success, when he gave a great presentation for the Black History Fair the other day. The fair ended shortly before what normally would be the end of the school day. Parents who attended the fair were given the option to take their child home right away, or have the child stay a few more minutes until class was formally dismissed.

    Kai said he wanted to stay and finish out his school day so my wife was allowed to stand in the back of the classroom.

    One of Kai’s classmates, however, did not stay. That boy’s mother decided to take her child home. Another woman wanted to take a picture of her grandson next to the display he had made. And that was enough to set off my son.

    Kai couldn’t stand that all of his classmates were not in the classroom as the teacher started to wrap up the day. He started screaming for the boy who was having his picture taken to come back into the room. And although that boy hurried back, there was no calming Kai down when the other boy went home.

    My wife tried to settle him down. But, when he kept screaming and disrupting the class, she let the teaching assistants handle it. Kai continued his tirade, using threatening language and trying to hurt the TAs. After hearing about all of his incidents at school, it was the first time either of us saw it first hand.

    Kai, like many kids on the autism spectrum, has issues with rigidity. He likes things to be the way they always are. If there is a change, even one that seems minor to most of us, it can lead to a meltdown.

    It is hard to understand why a classmate leaving school a few minutes early should cause such a huge eruption. And because it is difficult for us to relate to, it can be easy to get frustrated with our son. We’ve tried to teach him to be less rigid. We try to prepare him whenever there will be a change in his routine. Why can’t he adjust? Why can’t he learn?

    But when I start to feel the frustration, I need to remind myself that I can’t be frustrated with my son. My frustration should be with autism. Autism is why my son is inflexible. Autism is why he gets so upset over little things.

    And so, my son doesn’t deserve my frustration. He deserves my patience, my love, and understanding. But, what he needs most of all, is my determination to keep working hard to help him overcome his disability. And, on that, I will be rigid.

    Thursday, March 3, 2011

    Easy Being a Parent? Yeah, Right.

    I got a lot of reaction to my post on whether Tiger Mom would be able to raise a child with autism. Some folks were unabashed fans of the now-famous symbol of Asian parenting. Others said that her methods were akin to child abuse.

    One comment from a 19 year old typified those who wanted to find a happy medium between Asian and Western methods. She said that she thought that Tiger Mom was too harsh, though Western methods can be lax. But the part of her comment that most interested me was when she went on to say, “I think it would be easy for a parent to push a child with a firm yet loving demeanor.”

    Easy? Hah, I appreciate this reader’s sentiments, but it is obvious that she is not a parent.

    As a dad who strives to push my son with a “firm yet loving demeanor,” I can tell you that it is not easy at all. What is the line between “loving” and “lax?” What happens when you are being “firm yet loving” and your child still refuses to do his homework or eat his vegetables or clean up the mess he made? What do you do when he talks back or says mean words as you try to firmly get him to do what he needs to do? What is next when the consequences he suffers doesn’t seem to deter him? How firm is too firm? At what point does “firm” cross over the line and become “harsh?”

    I would guess that many children have trouble seeing things from anyone’s perspective but their own. In my son’s case, if I withhold dessert as a consequence of a poor choice he made, he will say that I am being mean, and would not think of what he did to cause my reaction. Based on what I have heard about teenagers, I have a feeling that this does not change all that much as kids get older. If anything, teens are probably even more inclined to think that their parents are unreasonable.

    And so, I think that firmness and harshness is oftentimes a matter of perspective. If you are the parent and you are holding your child accountable, you are being firm. If you are the child and your parents are punishing you, they are being harsh.

    Thinking about all this makes me think that this difference in perspective is a big reason why kids don’t fully appreciate their parents, perhaps until they themselves become parents as well. To kids, being a parent is easy. They must be incredulous that we all do such a lousy job.

    Not that any of this should matter to us parents. We raise our kids the best we can. We shouldn’t do it out of hope that they will ever appreciate all that we do for them. There is no way they ever can. They will never truly understand how much thought we put into them, the worries we all have, the anxiety we feel when things don’t go well, and the joy we feel when they are happy or accomplishing something.

    But, that’s okay. We do what we do as parents because we want the best for our kids. We do it because we love them.

    Wednesday, March 2, 2011

    Black History Presentation Sparks a Dream

    My son’s school had a Black History Fair to cap off a month of special projects. Each student was assigned a famous African American. My son’s subject was Bill Pickett, who I learned was a rodeo star in the early 20th century, and a member of the Rodeo Hall of Fame.

    The kids studied their subject and then created displays for the fair. The highlight of the program was to be a video presentation where each child speaks about their assigned African American hero.

    Our expectations were pretty low. Kai can go on endlessly when talking about the numbers of the NASCAR racers or the square miles of countries or whatever else he is into at the time. But, ask him to speak about any other topic and you are lucky to get more than a word or two, usually mumbled incoherently.

    And so, when my wife reported that Kai gave an awesome presentation, we were both stunned. She said that he spoke loudly, clearly and without hesitation as he described the accomplishments of Mr. Pickett. Even better, he didn’t say the words in a boring monotone as if he were reading his material. Instead he spoke freely and with enthusiasm, giving his presentation more flair.

    He even surprised another mother who sees Kai quite often at his ice skating class. There, Kai rarely responds to her no matter how much she tries to talk with him. So, it’s no wonder that she was shocked that he could actually speak so well.

    Okay, now I know that this wasn’t on the level of Martin Luther King delivering his “I have a dream” speech. But, to us, it was momentous in a small way.

    It gives me hope that one day he will be able to just as articulately describe his day at school. That is my dream.

    Tuesday, March 1, 2011

    Hope Springs Eternal in a New Month

    February was a bad month for us. It was the snowiest in our area’s history. And it was the worst month of school for our son in the past year.

    Kai capped off the month with two more major incidents at school yesterday. That made nine for the month. And that is nine more than in January when he incredibly went the whole month without one.

    What makes it even worse is that his behavior at home seems to be deteriorating as well. In the past, when Kai had trouble at school, his behavior at home was usually pretty good. But, this month has been different.

    He has developed a bad attitude. He is being more disrespectful. He doesn’t listen. He talks back. He is more disobedient.

    It is frustrating; probably the most frustrating time I’ve had as a parent. I think I’ve given him more timeouts this month than in the whole last year.

    A part of me understands that this may be, at least in part, just the natural result of him growing up. He wasn’t going to stay a sweet, innocent little kid forever. He is asserting his independence. He is challenging us. Certainly he is able to express his thoughts like never before.

    But knowing this doesn’t make it easier. And as these seemingly endless grey winter days continue, I am looking for signs of a ray of light with our son’s behavior.

    If I look for positives, I see that the month wasn’t all bad. Kai has started to sleep through the night with regularity for the first time in four years. In fact, he’s sleeping so well that it’s hard to get him up for school in the morning.

    Wait a minute. Difficulty waking up in the morning? Bad attitude? Disrespectful to parents?

    My son has become a teenager!

    He had his birthday in February and I thought that he turned seven years old. But, the same quirk of nature that brought all that snow must have mysteriously aged my son by ten years instead of one.

    Well, that would make sense since I feel like I’ve aged ten years, too.

    I can only hope that the magical effect will be reversed in March.

    Welcome, March! Good riddance, February!

    Oh how nice it feels to turn the page; to get a fresh start.

    Now, I know that things really won’t just magically change. There will be more grey days. It will snow again. My son will have more incidents at school. His behavior at home won’t suddenly improve.

    But, somehow knowing that March will bring the official end of winter and the beginning of spring has created an air of optimism, a bit of hope.

    Hope springs eternal. That’s my mantra for the month.
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