Rules in the Car Apply to All

When you live in a large metropolitan area like we do, you spend a lot of time waiting in the car. That is not a good thing when you have a boy who hates waiting as much as our son does.

As I’ve mentioned before, Kai’s anxiety surges whenever we are stuck in traffic, and he becomes the worst backseat driver you can imagine. He is constantly yelling at us to change lanes or go in a different direction. When we mentioned this to our son’s social worker at school, she came up with a suggestion for us – keep a visual reminder in the car of what Kai should not do, and along with that, a list of suggestions of things he can do instead.

With nothing else working, we decided it was worth a try. We create a laminated sheet that described two very simple rules for the car:

1. No shouting, yelling, or screaming
2. Do not tell the driver how to drive or where to go

Instead, I can:

• Sing along with the music
• Chew on my bracelet
• Count how long the light signal is red
• Write on my magic board
• Ask for gum

We have tried this for a week now and have found that keeping these Car Rules handy has been helpful. When Kai has started to get upset, we showed him the rules and he quieted down right away. Sometimes he will choose one of the alternatives listed, but sometimes he will say that he doesn’t want to do any of those but will just be quiet.

The other day, my wife reported that she was driving with Kai in an area that had road construction. Traffic came to a stop when a construction vehicle blocked the road. It eventually moved off toward the side of the road, giving cars enough room to go around it. However, the car in front did not proceed. My wife and Kai waited. The car still did not go. They waited some more. Still no movement. Finally, it was too much to bear.

For my wife.

In a voice that was loud enough for Kai to hear, she said that the driver of the car in front should just go around the truck as there was plenty of room. Kai responded, “Mom, rule number two is ‘do not tell the driver how to drive or where to go.’”

Busted.

Now, it wasn’t all that long ago that it was easy to think that Kai was not listening to us because we rarely got a response from him. These days, we have come to realize that he listens much more than we used to think, even when it appears like he is not paying attention.

So, we are going to have to be more careful of the things we say. But, you know what? It is nice to know that he is not preoccupied in his own world. And that he was able to calmly engage with Mom while patiently waiting in traffic.

Now that is the kind of backseat driving we will gladly tolerate.

Swim Lesson For Son Teaches Parents, Too

My son has been taking swimming lessons for about two years with very little to show for it.

Until now.

Kai is a boy who is afraid of many things, and getting his face wet and being in a pool is one of them. He did have a bit of success with his first instructor, Jody, who had some experience working with kids on the spectrum. It took awhile, but, after several months, Jody was able to get Kai to kind of, sort of swim, about eight feet, with his face in the water.

Things went downhill, though, when Jody got promoted up to management and was no longer available to teach Kai. Without Jody, Kai’s fears in the pool immediately returned. He would constantly cry, “I’m scared” and do nothing but cling to his coach or to the side of the pool. We went through a number of different instructors, but none had any experience working with kids like Kai, and it showed. After several months of this, we stopped the lessons.

A few weeks ago, my wife heard from the grandmother of one of Kai’s classmates that her grandson was taking swim lessons from a young man named James. She raved about how good he was. The name rang a bell and he turned out to be the same person who was referred to us two years before. Back then, James’ schedule was completely booked and we were disappointed that he could not work with our son. And, so, we settled for the instructors who did not turn out to be very good. Now, with nothing to lose, we tried calling James again, thinking his schedule would again be full, but this time he was able to fit Kai in.

At his first lesson with James, Kai, per usual, cried out, “I’m scared!” James gave him a floating barbell to hang on to, but did not let Kai get close enough to cling to him. Instead, he kept talking to him, calmly, patiently.

James had prepared by speaking with me extensively on the phone ahead of the lesson. He had learned that Kai was extremely motivated by numbers. And so, with Kai showing some anxiety, James gave him the three steps to becoming a good swimmer. Number one: kick. Number two: extend your arms. Number three: make the “wooo” sound which James showed how to make by “wooing” while putting his face in the water.

They practiced each step individually near the side of the pool. Then, with James holding onto the barbell, Kai tentatively moved away from the side. He kicked his way to a platform in the middle of the pool. More practice, and then, with his arms extended further and moving less tentatively, he was able to kick his way back to the side of the pool. Next, it was time to put it all together. Kai put his face under water. “Woooo!” he said as he kicked and moved along.

Now, I don’t want to make it sound like Kai did not protest through this at all. He did. But, whenever he did, James kept him from getting overly panicked. He talked to him. He joked with him. He even distracted him with multiplication problems. “What’s six times five?” “30.” “Keep kicking.” “Seven times six?” “42.” “Wooo!”

At some point, without Kai realizing it, James no longer held on to the barbell. Kai was moving completely on his own. When James pointed that out to Kai, he understood that he was going to be okay. After all the past failures, I could hardly believe it when I saw Kai moving on his own for the whole length of the pool.

With that, in just one lesson, Kai overcame his fear of the water and began swimming.

And, with that, we learned some lessons, too. Not all swim instructors are the same. When you have a child with special needs, it pays to find one who really knows how to work with kids like yours. And, we also learned that Kai is capable of learning how to swim after all.

I can’t wait to see what lesson two brings.

My Son, the Snack Shop Employee

My son’s therapeutic school just opened up a snack shop where students can go during their break time. But, its main purpose is not just to be a place for kids to get snacks.

Run by the school’s speech therapist, its primary goal is to enable students to use their social/pragmatic language and math skills in settings that promote carryover and refinement. Both shopping and working at the snack shop is an earned privilege to students who meet their expectations in class.

Kai was one of two kids selected to be the first employees.

His teacher reported that Kai was very excited for his first day as a snack shop employee. She said that he greeted his “customers” warmly and made great eye contact. He did a wonderful job and will continue working there every Monday through the end of the semester.

With so much in the news lately of the poor quality of American schools, I feel fortunate that my son is going to a place that has such innovative thinkers as this speech therapist. What a great idea to have students “working” in a setting that will help them practice the skills they need to work on the most.

It wasn’t all that long ago that we were happy with any social interaction our son made. Now, he is greeting customers. I never thought I’d be so proud to say, “my son, the snack shop employee.”

Losing at Monopoly a Big Win

We played Monopoly this weekend. It was not the first time we played, but it was the first time we played all the way to the end.

With our son’s love of numbers, it is no surprise that there are elements of the game that he really enjoys. He gets excited when we distribute the money at the beginning, and also likes the buying of the different-colored property.

But, until now, his interest was not sustained for very long. A game would last just to the point where we would get to the good part where we could start building houses. At that point, Kai would say, “all done” and the game would end.

This weekend was different. When we got to the good part, we kept playing. We didn’t just get to build houses, we built hotels. And, for the first time, we got to the part where we had to mortgage our own property to pay for the large rent that was due. Kai was very excited to find out about mortgaging. He thought it was hilariously funny to have to mortgage his property and kept on wanting to do it even when he had enough money to pay the rent.

The highlight of the game for him came when he landed on Boardwalk, where I had built a hotel, and he had to come up with $2000, which is huge in Monopoly money. He laughed and laughed as he mortgaged property after property, adding up how much money he had and how much he still owed. When he had mortgaged the last of his property and fell just short of paying off the debt, he joyously yelled that he was bankrupt and celebrated as if he had been the big winner.

He will have to learn a thing or two before he can become a financier, or an accountant or a real estate developer. But, with our first completed game of Monopoly, we see his increased attention span and, with that, yes, Kai actually was the big winner.

Disruption In The School Routine

After staying home two days because he was sick, our son returned to school this morning.

Disruption with the usual routine is frequently difficult for kids on the spectrum. That is no different with Kai. He had been doing pretty well at school the past two weeks, but today seemed to have more anxiety about going back. It will only be a half day of school today, so we are hoping that he will have a good, stress-free day to get back into the school routine.

Unfortunately, toward this, we hit a little speed bump this morning.

Kai takes a taxi to school. To those of you who are unfamiliar, it may sound odd for a young child to take a cab to school. I know it sounded strange to me at first. But, when you think of it, it is not that much different than taking a school bus; it is just smaller, makes fewer stops, and picks up less kids. Kai has been sharing his cab with three or four other kids.

For as long as he has been taking a cab to school, he always sits in the same seat: second row, passenger side. Today, the driver asked that he sit in the back row.

He was not happy.

Apparently, the school or cab company or someone has issued a new rule that says boys and girls cannot sit next to each other in the cab. So, in this cab, boys will have to be in the back row and girls in the second row. I’m not sure of the need for the switch, or the importance, but that was the reason given.

Typical kids can find out about such change and easily roll with the punches. For kids like Kai, it is more like a real punch, at least in terms of his anxiety. He really resisted. And, as the driver was stressing out about being late, she relented and let Kai have his usual seat. And that will probably just make it even harder to get him to change the next time.

It sounds strange to those who are not familiar with the characteristics of kids with autism, but even a seemingly minor change like this requires a lot of proactive planning. Ideally, the school would have notified Kai, and us, ahead of time that he would need to switch seats. We, at home, would also have spoken with him and prepared him. Perhaps a social story could have been created so that he could more easily understand and visualize how things would be different.

But, those things were not done.

So, the boy who was anxious about returning to school just became a bit more anxious. And, that makes Grouchy Dad stay grouchy for a while longer.

Sick Kid, Grouchy Parents and Insurance Woes

Wednesday was not a good day at our house. Our son was sick and stayed home from school. And, that was actually the relatively better part of our day.

The good news is that Kai’s sickness appears to be nothing too serous – just a cold, most likely – and, hopefully he will be back in school soon. He said he was feeling better this morning and wanted to go to school, but then said he was cold so, we are keeping him home another day. The worst part of his sickness is that he is having even more trouble sleeping than usual. He was up several times for the last two nights now. And, that makes for a very tired Dad, as it is usually me who gets up in the middle of the night when he can’t sleep.

Tired Dad leads to Grouchy Dad. And, having our son home from school all day leads to Tired Mom which leads to Grouchy Mom. But, even that was not the worst part of our day.

No, the worst is getting the news that our son’s occupational therapy is being denied coverage by the insurance company.

The cost of paying for Kai’s therapy out-of-pocket without insurance picking up much of the tab is too much to bear. Of course, we will appeal the decision. But, the risk that we will not win the appeal makes it such that we will, at least temporarily, have to stop the OT that has been benefiting him so much.

We have gone through this before. Kai’s speech therapy was denied coverage and we had to go through the appeal process before coverage was restored. We also had the same problem with coverage when he was getting OT from a different provider. Both the logical and optimistic part of my mind cannot believe that we will not win our appeal. But, logic and optimism does not always apply when dealing with insurance issues. Our frustration with insurance companies is reaching the boiling point and one day, when I am not so tired, I will give this the proper rant that it deserves.

For now though, a sick boy and many other things await so I will have to cut this short. Sorry, no cute pictures today. Grouchy Dad is not in the mood. Such is part of the roller coaster of life with a child with autism.

My Son and Numbers

My son has a thing about numbers.  I mean, he REALLY has a thing about numbers.

This fascination manifested itself from a relatively early age.  When Kai first started saying a few words, we found out that he sees numbers everywhere. For instance, he would pick up a fallen tree branch and say “seven.”  It sometimes would take us a little while to understand what he was talking about, but eventually we saw that the shape of the branch did look like the number seven if you held it a certain way.  Likewise, he would look at a paper towel hanging down off its roll and see the number 9.

As I mentioned before, when he was four, we found out that he had memorized the exit numbers of nearly every place he had been, even those where he only went once, a year previous. 

Since he loves numbers, it is no big surprise that he has quite an affinity for math. After he learned addition and subtraction at age three, he kept asking us, just for fun, to create addition and subtraction problems for him using two and three digit numbers. Shortly after he turned five, he found a book at our local public library that had multiplication tables in it. He asked me to explain them and, after one session of using beans and cups, he learned multiplication. He also might have been the only kid in his kindergarten class last year who knew how to do a little bit of division.

Earlier this year, he became very interested in the fifty states. But, even there, numbers factored into it. In just a couple of days, Kai learned the order in which the states entered the union. Many people know that Hawaii was the 50th state. But, how many know that Delaware was the first? Or, that Virginia was the tenth and Oklahoma was 46th? Kai could tell you. 

Just before his sixth birthday, he drew a map of the United States all on his own. But, instead of writing in the names of all of the states, he wrote a number for every state that represented the order in which they joined the U.S.  I had to look up the statistics online to check it out, and found out that he had it all correct.

Nowadays he is really into planets. As such, of course he can tell you their order from the sun. But, he also knows that Jupiter has 63 moons and that Mercury has none. I didn't know that until he told me.

We sometimes try to use his love of numbers to our advantage.  For instance, back when he was a pickier eater, we motivated him to eat his gluten-free chicken nuggets by having Mom teach him how to say a different number in Japanese after every bite.  While most kids love chicken nuggets, that was one of the few times back then that he ate his dinner readily.  Now, if you ask him how to say eight hundred in Japanese, he will gladly tell you. 

Last weekend, my wife and I got to play Frisbee golf for the first time by telling Kai that every hole has a different number.  He liked the order in going from hole to hole, as we went around the nine-hole course.  And, now that my wife told him that a regular golf course has 18 holes, he can’t wait to try that, too, someday.

I don’t know where this love of numbers will take him.  At times, we have been concerned that he is so obsessed with numbers that it hinders his social and emotional development.  So, is he a potential NASA engineer?  Or, someone who cannot get past the numbers and function well in the real world? 

One of our challenges as parents is to figure out how to channel his talents.  

Cute Kid, For Now

Since he was a toddler, my son has frequently been described as cute or adorable. And, though I am biased, from the pictures below, I’m sure most of you will agree that he is, as are all young kids, pretty darn cute.

His cuteness has been a shield of sorts, as much for my wife and me as for him. He could have all sorts of bad or odd behaviors, and, to some extent, people would overlook them because his appearance projected his innocence.

At age six, most kids are probably near the tail end of their cute period. Kai’s already may have lasted a little longer because he is small for his age and he still has such a guileless quality about him.

At age three, he was adorable:

At age four, he was very cute:

Age five, still cute:

Now, at age six, not so much:

Okay, okay, he is still pretty darn cute.

But, for how much longer?

The recent story in The Atlantic talks about how adults with autism are denied the empathy and support we give kids. But, I think it goes further than that. I think that adorable little children are more likely to get support than older, bigger kids.

When a cute little boy asks someone for a hug, their heart melts and they gladly give him a hug. But, what happens when a not-as-cute, medium-to-large-size boy asks for a hug? Or, wears his clothes backward? Or, says something strange? Or, has a meltdown? Instead of being endearing, it might be perceived more awkwardly at best, and perhaps even frightening in some cases.

Many of the things that are excused or even welcomed with small children will be frowned upon as inappropriate. That is among the many reasons why I feel a sense of urgency to try to correct all of my son’s poor behaviors. I know that is not going to be completely possible, and one day we will have to deal with the extra scrutiny we will get. Our shield will be gone.

But, I also know that our son will always be adorable in our own eyes. And, I will learn to deal with whatever reactions we get from others.

In the meantime, I won’t mind hearing about what a cute kid he is.

Weekend Is Nothing Special, Just Especially Good

We didn’t do anything too special this weekend, but it was pretty special nonetheless. Here are five things that made it so.

1. Our son had his second soccer game on Saturday. After our tough time last weekend, we made sure to set expectations that he would try hard, play the entire game nicely, and not whine or complain. Kai seemed very receptive to our talks, but we still held our breaths a bit when we arrived at the soccer field. He enthusiastically ran onto the field for the warm-ups. A good start, but would it last more than a few minutes? To our delight, he enjoyed playing the entire game. We were happy, and proud of him.
2. With Kai playing nicely, we did not have to give him as much attention as we did last week or rush out afterward. It allowed us to chat with a few more parents and, not surprisingly, found that they are a good group. It was great to make some new friends.
3. My wife took Kai to an event at a public library where he and other kids with autism could interact with specially-trained therapy dogs. My wife loves dogs, and would like it if we had one. But, Kai has at times been afraid of dogs. On Saturday, he really enjoyed spending time with Cooper, and asked to walk with him ten times. Now, if only we could find a dog as gentle as Cooper to bring home with us.
4. When you have large oak trees like we do, this is the time of year that you hear them falling on your roof at all hours of the night. Our yard is pretty much covered with them. Kai loves picking them up and collected a large bucketful of acorns. He wanted to make an acorn necklace so I got an ice pick, tried to poke a hole in one acorn, and ended up stabbing my thumb instead. On to Plan B. I googled “acorn craft ideas” and came up with a kids’ project to paint acorns and make them look like mini jack-o-lanterns. He ended up painting ghosts, witches, and cats in addition to the pumpkins. It was a bit messy, but less bloody than working with ice picks. My wife put them into a glass candle holder and now they make a nice holiday decoration on our kitchen table.
5. After her recent triumph with the Lemon Ginger Chicken, my wife is on a tear finding and trying new recipes. This weekend, she had success with new recipes every day. On Friday night, she made cinnamon-apricot-flavored pork tenderloin from a recipe that Kai’s grandmother Dell sent us. It was moist and oh so delicious! On Saturday night, using extra apricot jam that she had gotten for the pork recipe, my wife made apricot, soy sauce, and brown sugar seasoned chicken wings. Another success! Sunday lunch was pizza muffins, which are like mini deep-dish pizzas, made using muffin pans with rice cheese in place of regular cheese. As a bonus, she also made mini peach pies with the same gluten-free homemade crust. The mini pizzas will now be part of Kai’s rotation for lunches at school. And, Sunday dinner capped off the weekend with a one-pot meal of chicken, Italian sausage, potatoes, celery, and onions. All of the new recipes were gluten-free, casein-free (GFCF) so we all ate the same thing. And, it was nice that Kai enjoyed everything as much as I did.  

 Yes, like it says on the t-shirt I'm wearing, life is good.

Weekend Reading Suggestion: Autism’s First Child

The new issue of The Atlantic has a fascinating profile of the first person diagnosed with autism. Donald Gray Triplett is now 77.

“He is, in all likelihood, the best-traveled man in Forest, Mississippi. This is the same man whose favorite pastimes, as a boy, were spinning objects, spinning himself, and rolling nonsense words around in his mouth. At the time, he seemed destined for a cramped, barren adulthood—possibly lived out behind the windows of a state institution. Instead, he learned to golf, to drive, and to circumnavigate the globe—skills he first developed at the respective ages of 23, 27, and 36. In adulthood, Donald continued to branch out.”

The article makes the case that being accepted in the community in which Donald was raised played a key role in his growth.

“Tranquility, familiarity, stability, and security—if we were talking about healing, these would create an ideal environment. Forest provided all of them for Donald, who didn’t need to heal. He needed only to grow, and that he did, spectacularly.”

The article also broaches the general topic of adults with autism.

“The truth is that we often deny to adults with autism the kind of empathy and support we make readily available to children with the condition—or, for that matter, to people with white canes at crosswalks. We underestimate their capabilities, reveal our discomfort in their company, and display impatience when they inconvenience us.”

The article quotes Dr. Peter Gerhardt, a leading expert on adults with autism:

“At present, he contends, schooling for children with high-functioning levels of autism overemphasizes traditional academic achievement—trying to learn French or the state capitals—at the expense of what someone like Tony really needs, a set of social skills that keep him from making mistakes such as hugging his neighbor the wrong way. These skills—like knowing how to swipe a Visa card—are not generally taught to kids with autism. And once they become adults, the teaching, in all too many cases, stops completely.”

If you can find the time this weekend, the full article is worth reading.

Bonding Time to Start Each Day

For about two months now, my six year old son and I have gone for a jog nearly every morning before breakfast. The routine started when Kai was in summer school and his teacher reported that he seemed lethargic when he first arrives at school. The idea is that getting out and doing some exercise will wake him up more before school begins. We also heard that movement is generally good for kids with autism, and helps them stay regulated.

There are days when he doesn’t want to go. But, usually once we are out, he enjoys it. Sometimes he will stop to pick up acorns or leaves, and then I have to prompt him to keep running. It’s not always great exercise, but I’m not doing this to train him to become a marathon runner.

It’s pretty quiet out when we’re jogging and we don’t see too many people. The ones we do see usually give a smile. They don’t see too many six year olds out running with their dad. I’ll say “good morning” to them and sometimes Kai does the same. One morning he saw a group of gardeners starting to work on a yard and told them, “You’re doing a good job!”

Now that it is becoming fall, it’s not so hot in the morning. The sun is just coming up when we’re out running. I don’t know how much this is helping him get off to a good start each day at school. But, I treasure it as a nice, peaceful time to have a little dad-and-son bonding.

It’s Okay to be Last

Waiting is one of the hardest things for my son.

When he was very young, Kai could not stand to wait in line for even a minute. For a time, we tried to avoid going to places that had merry-go-rounds or other rides because we knew he would have a severe meltdown if he could not get on immediately.

Now, he has gotten better about waiting in lines. Well, compared to before anyway. Depending on the day, he may wait patiently for five to ten minutes, perhaps longer on a good day. At a recent doctor’s appointment, he waited pretty patiently for 15 minutes. But, it was all I could do after that to keep him from wrecking the waiting room when we ended up having to wait for 40 minutes before the doctor saw us.

Whatever improvement he has made for waiting in lines has gone in the opposite direction in terms of being patient in the car. These days, more often than not, when we have to stop for a traffic signal, he will shout, “Stupid light!” What is even worse is his backseat driving. “Switch lanes!” “Go over there!” “Turn around!” When traffic is bad, he is almost constantly yelling directions for me, and getting increasingly upset when I don’t do as he says.

At school, Kai has had several major incidents where he tried to hurt himself or someone else when he was not the first student in line for lunch or PE or some other activity. For most of the time that he has been in school, the staff has tried to accommodate his lack of tolerance for waiting by minimizing the waiting that he has had to endure. And, while he has not always been chosen first for every activity, he has never been selected last.

Until now.

Knowing that, in the real world, he will have to wait and will sometimes be last for things, the school has begun to gradually practice that with him. Beginning yesterday, Wednesdays will now be his day to be chosen last for lunch and PE. They spoke to him about it the day before and we did at home as well. It’s okay to be last, we told him. He was not happy about it.

His counselor at school told us to expect that he will have a major incident the first time. It will not be easy, she said. But, it is something that is important to work on, and they think it is time.

So, what happened?

He went last and… handled it well. He had anxiety about waiting, but, with support from his counselor, was able to cope and did not have a major incident. His teachers say they are very proud of him.

We are, too.

Yes, for the first time, it was okay to be last.


Note: For those of you keeping score at home, that now makes it seven good-to-great days at school with the Under Armour versus four fair-to-poor days without.

Summer Sledding Fun for Son, Pain for Dad

My son, who is so afraid of many things, is not afraid of slides, not even a 2,000 foot Alpine Slide. So, it should not be any surprise that Kai also loves going sledding. In fact, we even went sledding last week!

You see, last winter, while I was researching which sled to get him, I found one that actually works in the summer as well as in the winter. In the winter, it works just like any other sled. But, in the summer, you freeze two blocks of ice onto brackets that attach to the bottom of this special sled. The ice enables the sled to slide down a grassy hill, and you can actually go pretty fast.

The first time we used the sled was on one of the hottest days of the summer, a 95-degree day. The skeptical among you may be wondering whether the ice will last long enough on a 95-degree day, or whether it would melt too quickly. Trust me when I say that it could not melt fast enough.

The idea of summer sledding is very exciting. The reality is very exhausting. On every run, I gave Kai a nice push, and then ran down the hill after him. He got to enjoy fun rides down, but, as the sled is pretty heavy with the two large blocks of ice attached, it was my job to lug it back up to the top again. After only the third time climbing up the hill with all that weight in the insufferable heat, I thought I was going to pass out.

My son, on the other hand, was having the time of his life. The boy who wanted to quit soccer after just a few minutes could not get enough of this summer sledding. Over and over, he said, “Let’s do it again, Daddy!” I never saw so much energy out of the little guy.

I could not refuse something that made him so happy so I kept dragging that sled up the hill and running down after him. It was a scientific miracle that the blocks of ice actually got heavier as they melted, and weighed about a ton each just before they had finally melted too much to continue. I silently gave thanks that the ice melted in time to spare my life.

When we went sledding again last week, it wasn’t nearly as hot. Climbing up the hill didn’t seem nearly so oppressive with the temps almost 30 degrees cooler. It was actually pleasant and Kai even let me have a few turns on the sled.

On one of my rides, the sled skidded sideways, hit a bump, and flipped over. I landed awkwardly on my side and immediately felt a sharp pain. Kai thought it was hysterically funny as he came running over to me while I was moaning in pain on the ground. I managed to get to my feet before he could jump on top of me.

We did several more runs but I later ended up going to the ER. Though x-rays showed no broken bones, I still feel that pain every time I sneeze.

Kai wants to go sledding again very soon. I wonder what excruciating experience will be next. But, I know that as long as he wants to go, I will be there with him.

Soccer Game Not A Kick

For many families, going to your child’s soccer games is not just a weekend activity, it is a way of life. But, when your child has autism, you cannot take even the most routine of activities for granted.

Soccer is popular with families, at least in part because it is a great sport for involving young kids. They can run around and kick the ball, and, at that level, don’t have to have great hand-to-eye coordination or use anything other than their feet and legs to be able to play and have fun.

We thought about getting Kai involved in soccer before, but didn’t think that he would fit in with typical kids. He doesn’t always pay attention and loses focus easily. So, my wife and I were thrilled when we found out that there was a nearby soccer program for kids with special needs.

American Youth Soccer Organization (AYSO), the group that runs soccer programs across the country, has what they call a VIP program, which provides a soccer experience for kids and adults whose physical and mental disabilities make it difficult to successfully participate on mainstream teams.

We eagerly signed our son up, and Saturday was his first game. It was a beautiful day as the morning rain ended and the sun came out. We arrived at the soccer field to find an array of friendly, enthusiastic adult and youth volunteers. The coach and other adults organizing the program introduced themselves and welcomed us, and handed Kai his new neon yellow uniform.

He put on the uniform and looked pretty darn cute. As a guy who loved playing sports as a kid, I was excited that my son would get this chance to be like a “normal” kid.

But, the rest of the afternoon did not go the way we hoped.

When the uniforms were handed out, Kai got caught up with the numbers on the back of the jerseys. He was number six, matching his age, but he was more curious to know what numbers the other kids got. He did not want to leave the area where they were handing out the uniforms until he saw everyone’s number, and, when some kids did not come this first week, it upset him that their uniforms stayed in the bag, the numbers to remain a mystery for at least another week.

Once he got on the field, he started kicking a ball. He had not shown much affinity for sports, so we were happy that he was able to kick the ball at all and seemed happy about being out there. But, when the game did not start right away, he grew impatient.

Kai has a clock in his head that runs on its own schedule. And, when events do not start when he thinks they should, he acts as if an alarm has gone off in his head. He yelled and whined and complained and said he wanted to go home. I started thinking, ‘Oh man, we are not even going to make it to the start of the game.”

But, we did make it, and Kai had fun. For a few minutes. One thing he does like to do is run, and, at the beginning of the game, he enjoyed running up and down the field. He even got his foot on the ball a couple of times.

After a little while, though, he got tired of playing. He said he was hot. We gave him water. He said he didn’t want to play anymore. We told him to keep trying. He complained. We told him to told him to be happy. When he fell down, he got even more upset. The coach let Kai kick the ball to start play after a couple goals, but that didn’t make him any happier about playing.

I’m not sure if we did the right thing in pushing him out there on the field to keep playing, but letting him quit after only a few minutes did not seem like the answer either. I think there may be some secret to good parenting that involves finding the right combination of patience versus persistence, encouraging versus compelling. But, we did not find it that afternoon.

When halftime arrived, Kai thought the game was over and he could leave. He was upset to learn that he had to play more. My wife promised him that if he played nicely in the second half, he would get a popsicle from the ice cream truck that he had been eyeing over in the parking lot.

For the rest of the game, the most enthusiasm he showed was when the coach yelled out how much time was remaining to be played. “Three minutes!” Kai repeated with glee. “Two minutes!” he shouted joyfully. “One minute!” he said happily. “Game over!”

We got him to participate in the handshakes with the opposing team. But, he didn’t want the snacks that were handed out so we quickly left the field and headed over to the ice cream truck while the other kids and their parents hung out together for a little while. I debated to myself whether he should have a popsicle, and gave in only after he agreed to try harder and play more nicely next week.

Is it wrong to feel embarrassed about your child’s behavior? Somehow, I feel worse than if this had happened at a game for typical kids. Here, with all of the other special needs kids really trying hard and happy to be playing, and with all the volunteers giving their time so that the kids would have fun, it felt disrespectful that my son was the only one who was not playing nicely.

Next Saturday is week two. I will talk to him ahead of time and try to set expectations better. Perhaps soccer is just not his thing and we should not force him to participate. But, I don’t want him to give up too easily. Hopefully, I can find that secret to good parenting by next weekend.

Going Four for Four with Under Armour

Kai had another good day at school on Friday. That makes it four good days out of the four days that he has worn an Under Armour shirt.

Our new OT, Becca, had suggested that we look into therapeutic compression shirts for our son. Many kids with autism have sensory issues and desire deep pressure. Kai is no different, as he often seeks out squeezes to his head or body. The idea of having Kai wear compression shirts is that they would fit snugly against his body, giving a squeezing sensation that simulates the feeling of the hugs that he craves. Becca thought that it might help him stay regulated, particularly in school.

We looked into it, but the special shirts we initially found online were much more expensive than we wanted to pay. Plus, they seemed kind of ugly, ensuring that Kai would stand out for wearing therapeutic-looking shirts.

Then, I found a comment that said that Under Armour shirts provide the same effect that we were looking for. For those of you who may not be familiar, Under Armour is the maker of tight-fitting sports shirts that are popular with teens and young adults these days. These shirts are typically worn to help regulate body temperature and dryness during athletic activity. They are made of a lycra-type fabric that fits snug on the body and feels silky.

The advantages for us are that Under Armour apparel is readily available and priced much more reasonably than the special shirts we saw. We also thought that they were more stylishly attractive than the therapeutic-looking shirts.

So, after Kai had one mediocre and two bad days to start the school year, my wife got a couple of Under Armour shirts to try out. On his first day of wearing one, Kai had a great day at school. The next day, he did not wear an Under Armour shirt and he reverted to having a so-so day.

This past week, due to the Labor Day and Rosh Hashanah holidays, he had school on only three days, and he wore his Under Armour on all three days. He put together three really good days, capped off by his best day of the year so far on Friday. He had no major incidents all week, stayed safe every day, and seemed calmer and happier overall.

We really don’t know for sure how much the Under Armour shirts are responsible for the great week he had. It is possible that he would have done well anyway. And, I am certainly not expecting that all of his behavior issues have been resolved forever with $20 pieces of clothing.

But, it’s tough to argue with a four out of four batting average. Like a superstitious baseball player, I don’t think we’ll be changing his clothing until he goes into a prolonged slump.


This is the type of shirt we got: Boy's Shortsleeve Heatgear® T ll Tops by Under Armour

Overcoming the Challenges of a GFCF Diet

We had Lemon Ginger Chicken for dinner last night and it was delicious.  The fact that my dear wife made a delicious meal is not exactly news.  What is news, however, is that my son liked it as much as I did.  He ate it enthusiastically and asked for second and third helpings.

What makes that so special is that for a number of years, like many kids with autism, Kai was an extremely picky eater. On top of that, he is on a special diet that restricts the types of foods he can eat.

We put Kai on a gluten-free, casein-free (GFCF) diet when he was two years old, shortly after he was diagnosed with autism. It was not easy having him on a special diet. Or, I should say, it was not easy for my wife as she is the one primarily responsible for shopping and preparing meals at our house.

Starting out, we had no knowledge of foods that would fit within the GFCF diet. The fact that Kai was such a picky eater only complicated the issue. He ate so few regular types of food, how would we find gluten-free foods that he would eat?

At first, it seemed like the only things he ate were bacon and hot dogs. Not exactly the healthy diet we were looking for. We almost always had separate meals for ourselves, which made preparation more cumbersome.

Later on, we discovered through testing that Kai has sensitivities for a number of foods that he should limit or avoid, thus further restricting his diet. Among the things we are currently trying to avoid in his diet are eggs and nuts. Originally, the thought of avoiding eggs did not sound too bad, but I was astounded to find how many products contain egg.

My wife persevered, doing a lot of research, and finding recipes in specialized cookbooks, as well as getting acquainted with the gluten-free selections available at grocery stores.

One of her first successes was with GFCF pizza. She found a gluten-free frozen pizza crust and combined it with soy cheese and pasta sauce to make a pretty good pizza that Kai loves.

She also found a number of gluten-free snack alternatives that taste as good as the “regular” versions we were accustomed to eating. The Kinnikinnick S’moreables Graham Style Crackers that we used to make s’mores on our camping trip is a great example. Kinnikinnick also makes a yummy cookie called K-Toos that closely resembles the taste of Oreos.

When it came to non-snack foods, however, Kai remained quite picky.

Now, you should know that cooking was never my wife’s passion before she had Kai. So, it was quite a display of tenacity on her part that she kept trying new recipes. I enjoyed her creations, as almost all were quite good, but it was  discouraging for her that Kai did not eat much of what she made.

And, then, gradually, things began to change.

Along with bacon and hot dogs, he started eating salami and sausages. Still salty, not-exactly-healthy meats, but an expansion in his diet nonetheless. Hamburger-on-a-stick was the next step, along with meatballs. A bigger leap came several months ago when he started eating chicken more easily without a fight.

Kai had liked carrots and celery from before, we think because the hard, crunchy texture is soothing for his sensory issues, but when, recently, he started craving asparagus, well, we knew that things had changed. Now, he will even eat squishy tomatoes, too.

These days, more often than not, we will all eat the same thing for dinner. My son seems healthier now that his well-rounded diet includes more than just salty meats. My wife is happier, knowing that her efforts to try new recipes are more likely to be rewarded by Kai. And, I’m happier, too, knowing that I can continue to eat awesome things like the Lemon Ginger Chicken.


The recipe for Lemon Ginger Chicken can be found in Special Eats Simple, Delicious Solutions for Gluten-Free & Dairy-Free Cooking

Holiday Milestone Shows Progress in Journey from Autism

L'shanah tovah to all of our family and friends that celebrate Rosh Hashanah.  We had an early Rosh Hashanah celebration this weekend at Bubbe and Papa’s house, and it reminded me of the Passover Seder we had there this spring.

We have gone to Seders before, but Kai was too young to be interested in the ceremonial aspects, and too picky an eater to care much for the food.  But, this year, he was aware that Passover was coming up and wanted to celebrate it.

For a while there, it looked like we would be out of luck, as we knew no one who was planning on having one.  But, when Bubbe heard that Kai was interested, she threw one together for us.

She had booklets for everyone that presented the Seder in 20 steps.  As you’ll recall, Kai loves numbers so anything that has numbered steps is a big hit with him.  From the time the candles were lit in step one, he was sitting with rapt attention.  As we went through step by step, he got more and more excited. 

He liked that he got to drink a little cup of wine, (ahem, cranberry juice) four different times, and had fun with the kids’ set of representations of the Ten Plagues that Bubbe got for him.  He also had fun searching for the afikoman (and we used gluten-free crackers for matzo). 

But, he also listened respectfully during the various blessings that were given.  And, he helped ask the Four Questions.  I don’t know how much he understood about the symbolism of the different elements of the Seder plate, but by the end of the evening, he knew what each element was. 

And, when it came time to sing Dayenu, Kai led the way, boisterously singing the chorus. 

He enjoyed the Seder so much, he wanted to do it again the next night.  And so, we did. 

Holidays are a good occasion to note the progress in your child’s development. Coming only once a year, it is easier to compare the change from the previous year than on ordinary days.  This Passover was unlike any other before, and showed that Kai has made great progress on his exodus from the effects of autism.

Followup on Spotting Jupiter

A couple weeks ago, I wrote how Kai mentioned that 3:30 AM was the best time to see the planet Jupiter. At the time, I said that I did not know if he made up this information. Well, I now know that he did not make it up, and that it was actually the case.

Little did I realize that the Chicago Tribune publishes the best viewing time for all visible planets every day on its weather page. Kai had spotted the information in small print located near the bottom of the page, and remembered it later when it was his bedtime. On that particular day, the best time to see Jupiter in the sky was indeed 3:30 AM.

I never should have doubted him.

Hey! I Like This Song, Too!

During our weekly dad-and-son visits to our local public library, we always get movies for Kai to watch as well as CDs for him to listen to in the car. On long car rides in particular, it’s always good to have something that captures his attention and keeps him from being upset that we are stuck in traffic.

Lately, I’ve found some great selections that combine songs that he really enjoys while also being educational. His current favorites are a series of videos and songs from the Schoolhouse Rock series. Schoolhouse Rock originated in the 1970s as a series of Saturday morning short cartoons. These cartoons have been compiled into DVDs and CDs on topics such as multiplication, grammar, science, money, and government.

With Kai’s love of numbers, his favorite collection is Multiplication Rock. But, funny enough, he also likes Walkin’ on Wall Street from The Best of Schoolhouse Rock collection.

The latest one we got, Grammar Rock, teaches kids about the different parts of speech. And, it does so through fun, catchy songs. My personal favorite is Interjections! I never used to be able to tell an interjection from a conjunction. But now, through these songs that Kai loves, I’ve learned some grammar, too.

Hey! That is awesome! Hurray!

You can watch and listen to Interjections! and see for yourself.  But, I’m warning you, it’s really catchy so don't get mad at me if you keep hearing it over and over in your head all day.

Weekend with Grandparents Typically Great

We had a great weekend with Kai’s grandparents in Michigan. It was filled with fun activities and some very special moments.

The day we got there, we went to the wellness center that Bubbe belongs to and used the swimming pools. Kai had a lot of fun going in two different pools as well as the hot tub. My wife and I had been disappointed at how scared Kai still is when he is in the water, this despite having had swimming lessons for about two years. So, it was a nice, little moment on Saturday when we got Kai to swim just a few feet on his own without clinging to me.

The next day, we took advantage of the perfect weather to go to the beach and also to a nearby orchard to pick our own apples and peaches. Kai loves these pick-your-own places and we always end up picking a large quantity of fruit that sometimes is more than we care to consume. This time, however, my intrepid wife found a great gluten-free recipe for apple cobbler and made it shortly after we got home Monday afternoon. It was the best apple cobbler I ever had!

The best moments of the weekend, though, were back at Bubbe and Papa’s house, playing games or just hanging out together.

Kai has always had a nice bond with his grandfather. Even back when Kai was hardly responding to anyone, Papa was always able to get him to laugh with a silly face or a funny noise he would make. These days, he still gets a great reaction out of Kai, but it’s more often the result of a comment, and Kai responds in kind with a remark. Funny thing though, one highlight of the weekend was a non-verbal remark that Kai made to Papa.

Papa is a big University of Michigan football fan so naturally he was watching their opening game on television on Saturday afternoon. Kai is not really into sports but was drawn into the game by the numbers on the screen – such as the yard markers and time clock – and by Papa’s enthusiasm. Still, after about a quarter, he had enough so Bubbe got him crayons and paper. The rest of us were watching the game and weren’t paying attention to what Kai was putting on the paper. When we finally looked, we saw that he had written a note to Papa that said, “No more football. Game over.” We all laughed and Papa turned off the game and spent the rest of the afternoon playing games with Kai instead.

Kai is now at the age where we can play games with him that are fun for the grownups, too. We had a blast playing so many different games that were challenging, while also had all of us laughing so much.

One of the things that I like best about our visits is that Bubbe is always so enthusiastic about seeing us, and especially about seeing Kai, of course. She is always effusive in greeting him, and has all of his favorite foods ready. In the past, when Kai did not speak much or show much reaction to people, I wondered whether he knew how much Bubbe cared for him. So, it was another nice moment when, while Kai was talking about how much he enjoyed our visit, he said, “Bubbe loves me.”

I know that Bubbe does love Kai very much, and always has. But, I have to think that before, when he did not react much to her, that it was at least a little discouraging for her. Now, though, I see both Bubbe and Papa getting huge kicks out of seeing Kai react so enthusiastically to their love and affection.

At one time, I wasn’t sure that Kai would be able to generate such utter joy through his interactions with others, or be cognizant of the affection he is getting. But, now, I know he is to both. That is what relationships between grandparents and grandchildren are supposed to be like. Parents of most typical kids can probably take that for granted. But, it warms my heart to know that my son is getting to experience that, too.

Delightful Sequence of Events for Kai’s Bubbe

We will be visiting Kai’s grandparents in Michigan this weekend. He loves seeing them and we always have a great time whenever we go.

We do a lot of fun activities that Kai enjoys like going blueberry picking or heading to the beach. But, sometimes it’s the little things that are the most memorable for me.

For instance, on one visit about a year ago, Kai was playing the board game Sequence with his grandparents. Sequence is a game of some skill where the object is to get five in a row. On this occasion, they were playing a version called States & Capitals Sequence where every place on the board is one of the fifty states.

Now, when it comes to games, Kai’s grandfather has a very competitive nature. Early in the game, Kai’s grandmother scorned that Papa would not let his then five year old grandson win, which he readily admitted was true. When Papa used a “Remove” card to block a possible victory for Kai, it was too much for Bubbe, who cried out in disgust. That did not deter Papa, who later used an “Add” card to again prevent Kai from winning.

While Papa was going all out, Kai was barely paying attention, spending much of the game under the table, emerging to make a move, then ducking back under the table again until his next turn.

So, it was quite the moment when Kai popped up, played “Ohio,” which made it five in a row, and announced that he was the winner. Bubbe was delighted while the look of chagrin on Papa’s face was priceless.

I don’t know if Kai will beat Papa in any games on our visit this weekend. But, I am pretty sure that he will do something to make Bubbe, and Papa, too, smile in delight.

News Flash – Kai Had a Great Day at School!

It is not my intention to give daily updates on my son’s day at school. But, with relatives from as far away as Tokyo reading this blog and feeling down that he had a bad day on Tuesday, followed by another bad one (that I did not write about) on Wednesday, I cannot withhold the news: Kai had his first great day of the new school year on Thursday.

It was evident that the day must have gone well as soon as he got off the cab that brought him home. He was smiling! He was happy! He could not wait for Mom and I to open his backpack and look at the scoresheet that the school sends home every day. It was, indeed, a very good score. More importantly, it showed that he had been safe all day. Kai knew he had done well, and was proud of it.

Of course, now we are wondering why he had a good day today. We know that change in schedules is very hard for kids with autism. So, this could be an indication that he is getting used to being back at school after the break. It could mean that he is beginning to adjust to his new TAs. Perhaps it was the new compression shirt that he wore for the first time, the one that simulates the feeling of being hugged that his body so desires. Or, perhaps this is just an anomaly that won’t carry over.

We know that life is quite a rollercoaster with Kai, and it seems like the ups and downs are magnified during the first week of school. A few weeks into the semester, we probably won’t be reacting quite this much on a daily basis.

We try to tell ourselves to stay on an even keel on the bad days, and so, too, should we on the good ones. But, when I see the smile on my wife’s face and know that, if just for a day, her headaches are lessened, I can’t help but feel good about it.

Feeling Like a Bad Dad

I had one of those Bad Dad moments the other day.  You may be familiar with it yourself.  You yell at your child, then feel terrible afterward that you lost your cool and were not as patient as you know you should be.

On this particular occasion, it was haircut time at our house.  My wife gives Kai haircuts at home as we know that it is futile to expect that he will sit still at a barbershop.  Every month, it’s pretty much the same routine.  First, Kai resists and says he does not want a haircut.  Then, he will finally sit down in the chair, but, as the clippers draw near, he pulls away and says he is scared.  Finally, after much encouragement / cajoling / yelling, usually in that order, my wife can finally begin cutting his hair.  Even then, however, he keeps squirming, which makes it difficult to give him a nice, clean, even cut.

Afterward, it is my task to get him cleaned up.  He hates having the cut pieces of hair on himself so we thought that a shower would be the best way to get it all off of him.  That sounds good in theory.  Except that he hates showers. 

The whole process of getting him showered was quite an ordeal.  He kept yelling that he was itchy, but then refused to get into the shower.  When he finally got in the shower, he screamed when his face got wet.  He scrubbed himself with soap, but then did not want to rinse off for fear of getting his face wet again.  My patience wore thin and I yelled at him to get under the water. 

He finally rinsed off and cried the whole time.  After he was done, he quickly toweled himself dry and ran off to tell Mom how mean I was to him. 

Sometimes it’s hard to know when to be gentle and understanding, and when to use a tough love approach.  Should I force him to overcome his fears and just get in the shower?  Am I coddling him if I don’t?

With Kai, I wonder if it’s even more complicated than with most typically developing kids.  He seems to be afraid of almost everything.  He is afraid of getting water on his face, of even slow movement on a bicycle, of trying something for the first time.  How much of his anxiety is related to his sensory issues?  How much of it is due to his neurotransmitters not functioning correctly? How much is just normal fears that he simply needs to overcome?

I don’t have many answers to those questions.  But, I do know this.

Yelling at him when he is scared is not the solution.  I need to remember that and do better next time.

The Rollercoaster Ride Continues

It took Kai until the first period of the second day of school to have his first major incident of the school year. This one resulted when he got upset and acted aggressive after he was not the first student chosen during Calendar. He hit himself in the head and said that he wanted to hurt everyone.

Getting upset over not being first has been an ongoing issue with Kai so it wasn’t a surprise that he had another incident like this. We did not think that all of the issues he had during summer school would suddenly vanish now. It really was just a matter of time before something happened. We know that the school will continue to work with him on this, as we will at home. And, after this one incident today, he went on to have a pretty good day otherwise.

Still, knowing all this doesn’t keep you from being just a bit disappointed. But, I also know that it is important to keep in mind that this whole journey with Kai is a rollercoaster and there will be plenty of ups and downs along the way. Buckle up!

Book Provides Insights Into Our Son’s Mind

I often wish that I could be inside my son’s mind to know what he is thinking or feeling.  Although he speaks much more these days than he did not long ago, Kai still struggles with answering questions or expressing his thoughts in great detail.  And so, my wife and I are often left to try and guess why he is upset or feeling the way he is.

Therefore, we welcome the chance to gain insights from others on the autism spectrum who are able to articulate their thoughts and feelings.  A book we’re currently reading does just that.

Born On A Blue Day is the autobiography of Daniel Tammet, an autistic savant with Asperger’s Syndrome.  Tammet is perhaps best known for memorizing and reciting the mathematical number pi to over 22,000 digits. He also speaks ten languages.  

My son’s kindergarten teacher from last school year actually suggested the book to us.  She told us that as she read the book, she saw tidbits that reminded her of Kai.  And, as we read the book, we, too, saw some similarities between the author and our son. 

The most obvious is that like Tammet, Kai has an obsession with numbers.  While I doubt that Kai will ever do anything as outrageous as memorizing pi to 22,000 digits, he has memorized the highway exit numbers of many places he has traveled to, including places he has been to only once. 

Another thing that was familiar to us came out through an anecdote Tammet gives. When he was young, his parents were very reluctant to bring their son into stores because he would always have a tantrum.  When they found out that he was attracted to the Mr. Men books with their fascinating colors and shapes, they used these books as incentive to encourage good behavior in the stores.  It wasn’t long before Daniel had the entire collection.  Tammet said that he was comforted by the books’ page numbers and colored shapes.  We, too, used these books as incentive for Kai as he was hooked on them, perhaps for similar reasons. 

Although we found a number of similarities between Tammet and Kai, there are many differences as well.  Most striking are in personality where Tammet does not like to socialize whereas Kai does, although he has not yet developed the skills to do it well.


Tammet goes on to describe challenges he faced growing up.  Things like his difficulties in getting a job, and his first relationship.

What we like most is that the book gives us a relatively rare chance to gain insights into how Kai, and other children like him, may be feeling at times.  It is perhaps especially helpful in understanding how the brain and mind can work with heightened sensitivities in specific areas.

My fondest dream is for Kai to one day be able to articulate these thoughts himself. Until then, I am thankful to have books like this one.  

To see the amazing Daniel Tammet, check out this documentary.