Recalling Our Wedding

We will be attending a wedding this weekend. It will be our first since our own wedding.

Kai was three years old when his mom and I got married. I had met them a little over a year earlier. (You can read about that here.)

We decided to have the wedding in our house as we wanted a setting that was as comfortable for Kai as possible.

At that point, my bond with Kai was not yet strong. But with Mom out all morning getting ready, I was in charge of watching Kai.

I didn’t really understand how difficult a disruption in the routine would be for Kai.

A bunch of strangers came into our house to set up for the wedding. When guests started arriving it got more chaotic. But worst of all, of course, was that Mom was not there until just prior to the start of the ceremony.

His grandparents tried to help me soothe Kai. But he could not be soothed. Even his beloved babysitter could not calm him.



When Mom finally returned home, he clung to her.



We tried to take several photos with him prior to the ceremony, but every attempt ended up similar to this one:



For the ceremony, the plan was for Kai to sit in the front row with his babysitter, dvd player, and lollipop. And for a very short while, he seemed content.



But shortly after Mom walked down the aisle, his babysitter took Kai away. I’m not sure what happened, but we could hear Kai’s loud screams from the next room.

To this day, my wife does not want to watch our wedding video as hearing Kai’s screams still make her cringe.

I recall that my friend who officiated the wedding kept glancing at me as if to ask if he should continue or stop. We continued, and eventually Kai’s screams ceased. His babysitter must have gotten him engaged with a toy or a movie in the playroom.

We ended up having a beautiful ceremony. I was disappointed that Kai was not there for most of it. But he was there in our hearts. And ears.

Afterward, he was finally reunited with Mom.



It took a while, but he did start smiling again and was a happy kid.



And at the reception, he was very happy sitting on Mom’s lap.



Looking back at our wedding day, I can see that it was, in some ways, a microcosm of our life to come.

We would face many challenges. There would be difficult times.

But we would come through it together. We were a family.

It will be interesting to see how Kai does at the wedding this weekend. Here’s hoping there will be less screaming and more smiling.

Dealing with Alzheimer’s

I am always hoping that people will be understanding and tolerant of my son with autism. But I struggle for that same tolerance with my father who has Alzheimer’s.

Being with my dad is like living a real-life version of Groundhog Day, except there’s nothing humorous about it.

I can be somewhat patient with listening to him say the same things over and over again. When he mentions the “beautiful weather” for the tenth time in an hour, I can usually manage a nod of the head and a tired response to him.

But when his complete lack of memory is combined with his naturally ornery personality, things get more difficult.

He gets argumentative every time we make a suggestion that would benefit him. Everything is fine, in his mind, even though it is obvious to anyone who has seen his house, or come within a few feet of his smelly clothes, that it is not.

Last week, my wife took him to get new eyeglasses made. But when he found out the price, he refused to buy them. His mind recalls the prices of eyeglasses from 20 years ago. So, even the cheapest place today seems too expensive.

Refusing to get glasses that he really needs is bad enough. But the worst part was that he later totally forgot that he had refused to buy the lenses, and he kept pestering my wife about when they would go to pick up his new glasses. After about the hundredth time explaining that he did not order the glasses, my wife couldn’t take it anymore.

Remarkably, my son was more patient with my dad than we were.

And that was despite my dad not being patient or understanding of Kai.

My dad often badgered Kai when he did not promptly answer a question. I’ve long since stopped trying to explain to my dad that a back-and-forth exchange like that is still challenging for Kai, instead opting to prompt Kai to respond to his grandfather.

At one point, when Kai overheard my wife and I talking about my dad, he looked up the BrainPop movie on Alzheimer’s.

He also noticed that my dad repeated things.

“You always say that,” Kai grumbled, when my dad told him once again how much he enjoyed his meal.

And yet, despite all that, Kai still wanted to go to the Botanic Garden with Ojiichan.



And play games with him.



Perhaps Kai’s autism makes him less aware of all the challenges his grandfather poses.

But perhaps it is something else.

Is it possible that the pure heart of a child is more forgiving and understanding than our adult ones?

Mother’s Day and Other Weekend Activities

It was another busy weekend.

I brought my dad over for another visit. Kai made it his mission to bring him up to speed on his latest collection, Trash Pack cards.



Of course it was Mother’s Day yesterday. Kai presented Mom with a hat and shirt that he had painted.



The three of us walked three dogs. I had the biggest dog, the Border Collie, Emi. Mom had the next biggest, the Cavalier King Charles, Momo. And, Kai had the smallest one, the Chihuahua, Shandy.



This weekend was the ice show that Kai and his special needs class has been practicing for. He ended up skating in three performances. Kai is in the purple shirt in the center.



The group performed a routine to the song We Are Family, and every member of the group wore a shirt that proclaimed a different member of the family. Some of the girls were Sister or Aunt. Some of the other boys were Brother, Uncle or Father. A few of the buddy skaters were Cousin.

Kai? He was Mother. Which I thought was odd, at first. I think whoever assigned the shirts didn’t realize that he was a boy. But given that it was Mother’s Day, I thought it was a nice tribute to Mom.



My sister and brother-in-law returned from their trip in time to join us for a Mother’s Day dinner at a teppanyaki restaurant. That is one of those Japanese steakhouses where the chef prepares the meal for you right at the table.

We had gone there once before, a couple years ago, and Kai’s lasting memory of that occasion was when the chef creates a huge flame at the table before cooking the meat. It’s intended to be exciting, but for my boy who is anxious about everything, all it did was get him scared. From the time the order taker first came to the table, he asked everyone, several times each, when the fire was going to happen.

And when it was finally time, he ran into Mom’s arms for safety.



But once that was over with, he enjoyed his meal.



I hope your weekend was just as nice!

Weekend Snippets

We went to see a play on Saturday morning. It was a Chicago Children’s Theatre production of a very creative, unique show called The Elephant and the Whale.

The story was told in three parts. In the first part, the actors used a cantastoria to tell this part of the story. The Cantastoria is a big bicycle that also shows pictures of the story.



In part two, they used toy theatres with puppets to tell the story.



And the last part of the story was projected on a screen at the back of the stage.



Besides the creativity of the play itself, this particular performance was unique as it was Chicago Children’s Theatre’s first autism-friendly performance. They sent out a social story ahead of the performance that walks children through the experience of attending live theater to try to help minimize anxiety. They also had a quiet room in case anyone needed to take a break. And, most importantly, the performance was deemed “judgment free.”

Each of us who attended felt welcomed. And as the woman who did the pre-show announcement explained, this was a “shush-free” performance meaning that the kids were welcome to laugh or talk.

And that took off a lot of the pressure we normally feel at occasions like this. When Kai commented on something that happened, we didn’t have to worry that he was being too loud.

Kai enjoyed the experience very much, though probably not as much as my wife and I did. We loved the creativity of the show, and the accommodations that allowed us to attend.

Here is Kai with two members of the cast afterward:



* * * * *
That afternoon, Kai had his usual soccer game. His friend, Nick, attended this week. I reminded Kai to be nice to him, though he seemed to have forgotten his anger.

At one point, Kai laid on the ground, saying he was tired. Nick came over and encouraged Kai to get up, extending a hand to help his friend. That is pretty typical of Nick. I hope Kai can learn from examples like that.

At halftime, Coach told me that Kai was saying he was tired because he went on a “really long walk” that morning. Uh, that walk from where we parked the car to the theater was about three blocks. Yeah, really long.

Still, Kai played nicely for the most part. A couple parents commented to me how Kai has become such a good player. I agree that he has come a long way from when he rarely ran after the ball. These days I sometimes want him to be less aggressive at taking the ball away from the more severely disabled kids who need help in getting a chance to kick the ball.

* * * * *
On Sunday, I got out the hose to clean our deck furniture. Though once my wife let my sister’s dog out of the house, there was no more cleaning to be done. Emi loves “attacking” the water coming out of the hose.

And when Kai came home from his weekly workout with his swim instructor, he wanted to join in the water fun as well.

Here is Kai handling the hose:



But mostly he wanted me to chase after him and get him wet. With the dog competing to get sprayed, it was like having two identical kids.

* * * * *
My wife found a good deal on clams at Costco so she prepared them as the first course of our Sunday dinner. But Kai liked them so much that he didn’t want to have anything else. He’s not much for meat, but he does like steak. But on this occasion, he only ate clams, about 20 of them.



* * * * *
And so it was a good weekend.

A boy, two dogs, and a lot of fun.

Fighting His Emotions

My wife regularly joins my son’s weekly psychotherapy session. Yesterday, Kai said he was hungry so he and the therapist went to the clinic’s snack room. When they returned, the therapist told my wife that Kai told her that he wants to have a fight a particular boy in his class.

“R___ is going to make Level 4 tomorrow,” he said as explanation.

My son’s public therapeutic school uses a level system. Students transfer to this school because of behavioral challenges they have had at their neighborhood school. When they first enter the therapeutic school, they are considered Level 1. As they pass progressively tougher standards, they attain higher Levels. When they reach Level 5, they may start the process to transition back to their neighborhood school.

Several of Kai’s former classmates have gone back to their old school. All of those kids arrived at his school after he did and made enough progress to go back, while he is still there.

Kai came close to making Level 4 himself last month before he had a major incident three days shy of the threshold. Now, with R___ due to hit the milestone today, Kai will be the last child in his class who has been at the school for more than a couple years who has not yet reached Level 4.

For a boy who has trouble linking all the pieces together in his mind, the result is that he wants to fight R___.

He doesn’t understand that R___’s achievement really has nothing to do with him. That he should not be angry with R___, and should instead be a good sport and congratulate the other boy. That he, too, can make Level 4 if he continues to have the good days that he has had lately. And that he will damage his chances if he chooses to take out his anger by starting a fight.

The psychotherapist who was with my wife and Kai at the time he declared his intention to start a fight explained that Kai gets angry because he doesn’t want to feel sad. She said that it is difficult for him to feel sad emotions, and so he channels it into anger instead.

And so, my wife, especially, is feeling sad for Kai. She wonders how he feels seeing so many of his classmates being lauded for their accomplishments while he finds it so difficult to stay safe even for one day. She wonders if he thinks less of himself for still being at the school while other classmates have moved on.

In the past, Kai never seemed to care too much when he told us about another student achieving a Level change. Whether his feelings about it have changed, or he is just now able to better express his feelings, it is apparent that he really does care, and that it bothers him a great deal.

Last night my wife emailed Kai’s teacher. She gave her a heads up about how Kai is feeling. And she asked her to take extra care of Kai today.

We understand the value of a Level system. We know that Kai has to earn his achievements.

But I think it’s also important to understand how a child may be feeling, and to provide a little extra support at times.

And today might be a time for him to get a little extra TLC.

A Safe Month, and a Good Start to May

Kai stayed safe at school on Tuesday and achieved another challenging milestone for him – a safe month.

In the three plus years he has been attending his therapeutic school, this is only the third time he has gone a whole calendar month without a major incident. Many of his classmates have been able to accomplish this, some fairly regularly, which only made it all the more frustrating for Kai.

“I can’t do it!” he has said many times.

Well, he did it. And hopefully that gives him confidence to know that he can do it again.

And he did get off to a good start on the first day of May.

Yesterday, his school had a fire drill.

Fire drills, and similar disruptions, have been very difficult for Kai in the past. Besides just the break of the routine, he would get very nervous, as if he were afraid that a real fire was happening. He would not be able to focus on the academics, and sometimes might lash out at staff or engage in unsafe behavior.

To try to reduce his anxiety, the school started giving him advance notice of fire drills. But they stopped that when it became apparent that the early warning only made him anxious for an even longer period of time. He would be anxious for the several hours until the drill occurred.

Yesterday, he received a heads up only a couple minutes before the drill. I’ll let his teacher’s email describe what happened:

“I just wanted to contact you about how amazing Kai was today during a fire drill that was unannounced to both staff and students. Ms. B___ did come in about 2 minutes before the drill to inform Kai (because of his past anxiety lasting for a few days from the surprise lock down drill a month or 2 ago). Kai started to tense up and get nervous but right when the fire drill was called he lined up, was quiet the whole time, and was a role model for the rest of the classroom. In addition, we told him there was going to be no alarm sound; it was just going to be called over the walkies. However, there was a mistake and the alarm went off. Kai remained calm and put headphones on until we were outside. I was so proud of him and gave him a ton of positive feedback on how flexible he was and how well he followed directions. Just wanted you to know how wonderful he was in a situation that is sometimes hard for him. Have a good night!”

It was great to get such encouraging feedback, and we are grateful to Kai’s teacher for thinking of us and sharing the news.

And, of course, we are happy that Kai seems to be on a good track right now.

He is making progress right before our very eyes.

Achieving the Impossible, Again

A week ago last Friday, Kai achieved what he thought was “impossible,” scoring 100% on his daily point sheet at school. Regular reader Linda commented then, “Now that Kai has achieved the impossible, it wouldn’t surprise me if he did it again."

Well, this past Friday, that’s exactly what he did. He had another 100% day.

And that was not his only good day at school last week. He did pretty well all week.

And for that, he received a Student of the Week recognition.



But that’s not all. Today is the last day of the month. If Kai can stay safe at school today, he will have achieved a safe month, another rare feat for him.

Kai was very upbeat last night. He seems very confident that he will do it.

Spring is here. We are having a series of sunny days.

But what is brightening our household these days has nothing to do with the sun in the sky.

Our son right here on earth is shining brightly.

Spring Weekend With Guests

My sister and brother-in-law visited for a couple days this weekend. Kai really looks forward to seeing everyone.

One of his favorite things is engaging in silly horseplay with Uncle Frankie.



Kai’s outgoing personality really emerges with Uncle Frankie. Usually his uncle initiates the fun. These days, with Kai’s communication skills so improved, he kept trying to engage Uncle Frankie in more fun. I think Frank was exhausted after awhile, but Kai kept persisting.

When we weren’t having fun at home, we were out with Kai doing our usual weekend activities. Kai was active at his soccer game.



Kai’s grandmother made it to her first soccer game so it was a good afternoon. All of us, including my wife and our latest dog, Momo, enjoyed the action.



Though Kai’s friend Nick did not come to the game this week so we didn’t have a chance to get help Kai reaffirm their friendship.

Later, we all went back to our house for movie night. The grownups didn’t really understand the movie, but Kai didn’t care. He just liked that everyone was there.

And that he got presents – a new Lego from his grandmother and another from his aunt and uncle.



By the next morning, all our guests had gone. Well, except for Emi, my sister’s dog that is staying with us while they do more traveling.

And so the three of us, and the two dogs, enjoyed our first really nice spring Sunday with a walk along a park trail.



When we got to the end of the trail at Lake Michigan, Emi barked and barked at the waves as if they were living creatures.



Emi kept trying to tug me and Kai into the water.



I think Kai enjoyed the excuse to get his shoes wet.

By evening, the dogs were finally tired.



My wife and I felt the same way.

But it’s funny how Kai never seems to get tired, at least not when it comes to doing things he enjoys.

And that he did all weekend.

“Nick Is Not My Friend Anymore”

How do you explain something to a child who doesn’t think the same way that you do?

My son’s school held a fundraiser last weekend. My wife contributed some items for the silent auction, and volunteered us to deliver pizzas that were donated by a restaurant near our house.

Kai came with us to the event as we made our pizza delivery, and we stayed for a short while to browse the items that were being auctioned.

I put in a written bid on a basket of gardening supplies that Kai’s classroom put together.



On Monday evening, when it was time for Kai to tell us about his day at school, he said, “Nick is not my friend anymore.”

As Nick has been his best friend at school for a couple years, we asked what happened.

“Nick’s mom won the auction.”

We were able to piece together that Nick’s mom was the high bidder on the gardening basket, and because of that, Kai was angry with Nick.

We explained that there was no reason to be angry. Nick’s mom must have really wanted that basket and was willing to bid more for it than we were.

That did not sway Kai at all. He said he no longer wanted to be on the same soccer team as Nick.

I said that there was no reason to be angry with Nick because of something his mother did.

That had no impact on Kai either.

I made the point that he should be happy that the basket that his classroom put together attracted a high bid, and that it went to the family of someone he knew. Wasn’t that better than it going to a stranger?

He did not agree with that either. All he knew was that Nick was a bad guy and no longer his friend.

In time, I tired of trying to change his mind. I successfully changed the subject instead.

But the next morning, as I was about to go to work, he again spoke about how angry he was at Nick.

Sigh.

Kai’s ability to articulate his feelings continues to get better and better. And because of that, I am gaining more insights into his anger.

He thinks differently than most of us do. He seems to react to the very last thing that happened – in this case, that Nick’s mom won the basket instead of us – rather than putting everything into context or understanding the big picture. And simply explaining it to him does not help him understand.

And so we have to figure out how to do that.

It won’t be easy, as I obviously cannot assume that what makes sense to me will make sense with him.

But understanding something is the first step toward dealing with it.

Let’s see what we can do about it.

“That’s Impossible!”

We use a Point Store as extra incentive for our son. Kai earns points for specified good behavior, which he can then exchange for items ‘on sale’ in the store.

We occasionally vary the achievements for which he can earn points, but currently the primary ways are through his behavior in school as measured by his school’s daily point sheet, and for going through the night without knocking on our bedroom door.

Sleeping has always been an issue for Kai. We still haven’t figured out how to get him to consistently sleep through the night, but we are trying to get him to be more independent when he wakes up. If he can keep from knocking on Mom and Dad’s bedroom door, he can earn 200 points.

We did start using a white noise machine after we got back from our Spring Break vacation. And along with the ear plugs, Kai does seem to be sleeping better. It’s not perfect, but the ‘sleep machine’ as we call it, seems to have a positive psychological effect on him, in addition to blocking out extraneous sounds.

This past week, though, we had some major storms in our area. And so Kai was more anxious than usual. The sleep machine blocked out most of the noise, but Kai still heard the thunder. He had a lot of difficulty sleeping and woke us up two nights in a row.

He had had his eye on a particular prize in our Point Store, and was hoping to earn enough points for it by the end of the week. But on Friday morning, he realized that because he woke us those two nights, he would fall ten points short, even if he scored in the 90s at school that day (which is very good for him).

He was not happy.

He begged Mom for a chance to earn an extra ten points. My wife agreed to think of something he could do.

I stepped in and said that we shouldn’t give him the extra points. My wife said that it wouldn’t be “giving” it to him; he would have to earn it. But I argued that creating a new goal just because he had fallen short on the original ones would be almost the same as giving it to him.

My son was not happy with that decision.

He said he really can’t sleep when it’s stormy.

We explained to him that he doesn’t he has to wake us up when he can’t sleep.

And besides, it’s not even about just that. He had other opportunities to earn points up until then. For instance, he could have a better day at school just a couple days earlier when a mediocre day cost him 100 points.

I told him that he could earn more points the next night if he did not knock on our door. He said that he would not be able to do it if it stormed.

In that case, he would have to wait until Monday to earn more points through his behavior at school.

He did not like the thought of waiting a whole three more days.

There actually was one other way he could earn the points that very day. I hadn’t mentioned it because I thought the chance of it occurring was very slim.

I told Kai that he would have more than enough points for his prize if he attained 100% on his school’s point sheet that day as we give a bonus for such a rare accomplishment.

“That’s impossible!” he declared.

In my heart, I thought that was probably true. But I couldn’t let him know that.

I told him that if he tried very hard, he could earn his 100%. Kai did not believe it.

“Dad, I am really mad at you!”

I then had to leave for work, leaving my wife to deal with a very upset boy.

I had quite a busy day at work, but I often thought of my wife and son and worried how the day was going for them. It is fine in theory for me to set a tough standard, but during the week, my wife is the one who is with Kai more often and has to deal with the consequences.

When I got home, I wondered what sort of mood everyone would be in.

My wife called out to Kai.

“Dad’s home. Come show him your point sheet.”

Huh?!?

Kai didn’t come over. I walked over to the family room where he was engrossed in a new toy.

What’s this?

Kai started chattering what the toy was.

My wife called from the kitchen and again asked Kai to how me his point sheet.

He finally brought me over to the kitchen and showed me his point sheet.

“I got 100% today.”

And so he did.



Sometimes the impossible happens.