Niagara Falls Vacation – Day 4: A Tumultuous Day

On our second of the two full days we had at Niagara, we planned to visit the final two attractions on our Discovery Pass: Aquarium of Niagara and Cave of the Winds. Of the two, we thought the latter would be more exciting and a great way to wrap up our visit. We wanted to save it for last.

So, that morning, we went to the aquarium.

It has been nearly five years since we visited an aquarium with Kai. At that time, he had little interest in seeing the fish tanks and we ended up leaving in a very short time. I was curious to see if he would be more interested now.

Kai was excited about going. And when we got there, he happily took in the penguin display. And then he eagerly went from tank to tank to look at all of the fishes. He was having a great time, and even asked that I take a picture of him in the cage that is used to protect divers from sharks.

Things could not have been going better.

And then it happened.

The thing that shattered our idyllic moment.

We learned that it was nearly feeding time for the seals. It sounded like a fun thing to see, so we went over to the seal tank and waited. Feeding time came and went with no seal handlers in sight. I went to the front desk to find out what the story was.

It turned out that some other seals were being fed in a different place, at a pool outside. I also found out that not only would the seals be fed, but, for a small donation, kids could get a cup of (dead) fish to feed to the seals.

We went made our way over to the correct place.

It was crowded. Many kids were already standing in front, throwing their fish at the seals below.

It actually didn’t look all that fun to me. The fish were slimy and many of the ones being thrown in the pool sank to the bottom uneaten. The seals did not appear to be too interested to go after the fish.

There was a long line of kids still waiting to get their cups of fish. I told Kai he would have to wait, and suggested that he could instead watch the other kids feed the seals. He insisted that he would wait to get his own cup.

A little while after Kai got in line, they announced that they would not be giving out any more fish to feed as the seals are on a strict diet. The kids still in line would be out of luck.

We explained this to Kai, and he did not react well.

This is a child who has extreme difficulty handling disappointments, as his string of torn shirts from school attest to.

On this occasion, he angrily screamed that he wanted fish. Then he started yelling that he wanted to hurt the aquarium workers and the other kids. When we tried to get him to calm down, he started to hit and bite us.

It was crowded, and we could not take a chance that he might get aggressive and hurt someone else, or himself. We tried to restrain him.

My wife was eventually able to wrap her legs around his torso and legs, and got ahold of both of his wrists. Before that, though, we both got bit.

And while holding him kept him from hurting himself or others, it only increased his anger.

He was shouting many things, like he wanted a new mom and dad, that he hated the aquarium, and that he wanted to hurt people. I am sure we were getting plenty of stares, but my wife and I both focused on Kai, trying to get him to calm down.

At one point, he got quiet, and we let go. But when he threw his hat into the pool where the seals were and then moved to do the same with our water bottle, we had to restrain him again.

It seemed to take forever for him to calm down again.

When he seemed less physically aggressive, we told him that we would only let go after he agreed that he would be safe. It took awhile longer for him to say that.

We finally let go, and told him that we would go back to the motel. He said he first wanted to go back into the aquarium to see a display of various chemical elements that he had passed when we went looking for the seals. Nervously, we went back in.

He looked at the display, and stayed safe. And then we retrieved his hat. But we couldn’t wait to get out of there. We breathed a sigh of relief when we got him on the trolley to go back to the motel.

But it was only after we were back in the safety of our room that we really started to relax.

I went out looking for lunch to bring back to our room, and when I got back, Kai was in a jovial mood. My wife was still drained.

We had lunch, and took a longer break than usual that afternoon. But we still wanted to see Cave of the Winds, so we eventually headed back out.

When we got to the attraction, we saw a huge crowd of people in line. I asked a Park worker how long the wait might be, and he estimated that it was an hour and a half. There was no way Kai would tolerate this wait, especially on this hottest day yet. The rest of us probably wouldn’t either.

So, instead, we walked over to the Canadian falls to see it one more time. And even though we had seen it several times by now, we still enjoyed it.

Then we rode the trolley to Three Sisters Islands, which are just upstream from the Falls.

It is a picturesque area, with far fewer tourists than the area right at the Falls. We took in the scenery, dipped our feet in a safe area of the Niagara River, and relaxed for a moment.

By the time we got back to the motel that afternoon, my wife nearly collapsed, from both the heat and from all the stress we had endured.

I took Kai over to the swimming pool so we all could relax for a while.

But soon it was dinnertime, and we made our way over to a local restaurant that had a nice outdoor seating area.

In the middle of our meal, it started raining.

At home, Kai gets anxious every time there is a thunderstorm, even when we are in the safety of our house. Here, though we were under the cover of an awning, he was even more frightened.

At first, only a small amount of rain leaked in to where we were sitting. But then the winds picked up, the rain became a downpour, and we were caught in a thunderstorm.

Restaurant workers rolled down clear plastic “windows” around the seating area. But still the water blew in. Most of the other customers seemed fine and continued with their meals. But Kai freaked out. He started screaming that he wanted to leave. We told him this was no time to leave, but perhaps the restaurant might move us to a table inside. So then he screamed that he wanted to go inside RIGHT NOW!

I was happy that the sound of the storm muffled his screams to the other patrons.

It was hard to get the attention of the workers as they were busy sweeping the water out to the sidewalk. But we found a manager who agreed to move us inside.

Once inside, Kai quieted quickly. Which was good, because we realized that the inside of the restaurant was pretty fancy, and not the kind of place we would ordinarily go with Kai.

We slowly finished our meal, and even ordered dessert, which we don’t always do, to delay having to leave the restaurant. Kai was remarkably well behaved.

When we finally finished eating, the storm had ended. We walked back to the motel in peace.

But this tumultuous day was not quite over.

As we were relaxing in our room, getting ready for bed, we heard a very loud alarm go off in the hallway. We opened the door and heard instructions to evacuate and go outside.

Kai was excited, but, fortunately, was not scared.

He followed our instructions and we made our way down the stairs and outside to the parking lot. A motel employee soon gave an all-clear to go back in, but we waited several more minutes until we saw the fire trucks leave. Apparently it was only a false alarm.

Once back in our room, we were finally able to call it a night. Our long day was over. We were exhausted.

It probably says something about our maturity as autism parents that we did not let all the challenges we faced that day completely overwhelm us, as it might have before.

Before we fell asleep, we set our alarm clock to wake up early for one more attempt to see the Cave of the Winds. We were not done with Niagara yet.

Tomorrow – Our Last Day
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Niagara Falls Vacation – Day 3: The Maid of the Mist and Other Adventures

Day 3 of our vacation was the first of the two full days we had to spend at Niagara. Having gotten a great first look at the Falls the night before, we all looked forward to seeing more.

We began the day with Kai and I taking our customary walk down the hallways of our motel so he could check out all the room numbers. We followed that up with breakfast in our room while watching a bit of the Olympics. Then, it was time to do some sightseeing.

Niagara Falls State Park offers a Discovery Pass that includes admission to five attractions for a discounted price. We decided to start out by heading over to the Niagara Adventure Theater to see a film about the history of the Falls before looking at it live again.

The film was a 40-minute IMAX movie that tells the stories of some of the daredevils who tight-roped across the Falls, rode over in a barrel, and even one boy who accidentally went over the Falls with nothing but a life jacket.

We got to the theater about ten minutes before the next showing. With only a few people ahead of us in line, we were glad that we would be able to see the movie without having to wait long. Unfortunately, there was some type of hangup with one of the groups ahead of us.

The attendant was alternating between looking something up on the computer and talking to the people. In the meantime, no one else was being served, and time was ticking away.

As is usually the case when he has to wait, Kai got anxious and impatient. “What is taking so long?” he grumbled. I wondered the same thing.

As it slipped past the start time of the movie, I got more impatient. A supervisor came out to help the first employee, and after awhile I was finally able to get her attention.

She let us into the theater, but the movie had already started. I doubt that we had missed anything important, but Kai did not understand that.

“I want to see the beginning of the movie!” he said somewhat loudly.

I tried to quietly explain that we did not miss anything important. That did not allay him.

“We have to see it again!”

Let’s just watch from here, I suggested.

“RRRRRRRRRR!”

I was getting a sick feeling that we would have to leave the theater, dragging a screaming child out with us.

But something in the movie caught his attention. He quieted down.

We ended up watching the entire movie, which he enjoyed. And by the end he had forgotten that we had missed the first few minutes.

Phew. We had averted a crisis. This time.

We next went over to ride The Maid of the Mist. Of all the attractions, I most looked forward to this boat ride that takes you up close to the bottom of the Falls.

As passengers get ready to board, each is given a blue plastic poncho to wear as protection from the mist from the Falls. We put ours on, but as the temperature was about 95 degrees, we immediately felt hot and sticky. Kai complained about how uncomfortable he was, and we took off his poncho. We told him he could leave it off and get wet if he so desired, which he said he wanted to do.

The boat first takes you to past the American Falls. You get much closer than where we viewed it the night before from the observation tower. It really is quite a sight and we all were thrilled.

Next, the boat traveled over to the Horseshoe Falls. By land, you cannot get a full view of these Canadian falls from the American side. But by boat, we saw the whole thing up close.

I do not have any photos from when we were at the closest points to the Horseshoe Falls as my camera is not waterproof and I put it away to keep from getting damaged. Contrary to the impression given by the name of the boat, the spray from the Falls here is not a mist; I’d say torrential downpour is more like it.

I was worried about how Kai would react. This is, after all, a boy who panics on the lazy river at waterparks when his inner tube floats too close to spraying water. On this occasion, he enjoyed getting wet at first. But when the drenching got really severe, he asked to put his poncho back on. Of course, he was already soaked. And he got a little upset.

But once we were out of the worst of it, I think he actually enjoyed it. Though it’s a little hard to tell from his expression here.

On the way back to the dock, we got another great look at the American Falls.

After that, we had lunch, went back to the motel, and rested up. Then we headed out for our next adventure: the Niagara Gorge Discovery Center.

The Discovery Center is a little farther away from our motel than the Falls, but still within several blocks. I considered that to be walking distance. We found out that Kai did not agree.

The intense heat likely had something to do with it, but Kai started grumbling about halfway there. By the time we were within a block, he was yelling that we should turn around and go home. Fortunately, we came within sight of the building, and, with much difficulty, we got him to continue walking the rest of the way.

The first thing we did when we entered was go to a small auditorium to view a short film. As the movie was getting started, Kai turned around and yelled at the little girl sitting behind us to “BE QUIET!”

I was mortified, and particularly upset with him considering how loud he had been at the film we saw just that morning. I grabbed him by the wrist and yanked him to turn him back around while shushing him.

He screamed about how mean Dad was, and proceeded to switch seats to the other side of Mom, away from me.

By the time the film had ended, though, we had both calmed down a little.

The Discovery Center is a small place, and there really is not much to it. If I knew more about it beforehand, I probably would have decided that it wasn’t worth the effort to go there.

But then, we would have missed out on one of Kai’s favorite places.

He found a display of rocks and minerals. And as he is obsessed with them from his flash card collection, the timing of this display was perfect.

He saw sandstone and diorite and quartz. And he loved it.

By the time we left, we were all in a good mood. And we bought tickets to ride the trolley back instead of walking in the heat. ☺

Back at the motel, we had our usual afternoon break, using the swimming pool and reading the rocks and mineral cards with Kai.

We had dinner at Hard Rock Café. The food was mediocre. But Kai seemed to like the loud music so all was good.

And after that, we rode the trolley over to Goat Island to get a look at the Horseshoe Falls from up top.

The Horseshoe Falls are much bigger than the American Falls. They are wider, and carry about 90% of the total volume of water. You can’t really see the whole thing from the top on the American side, but we had already seen all of it from the boat, and it was still impressive now.

As we had the night before, we stayed until it got dark. And we saw the light show, this time shining on the Canadian Falls.

As a bonus, we also saw the weekly fireworks show.

Sitting there next to the Falls, all of the difficulties we had that day were forgotten. We were happy we were there.

Tomorrow – A Tumultuous Day
See our Facebook page for photos from our entire trip

Niagara Falls Vacation – Day 2: On to Niagara

We said goodbye to Mama Dell and Papa Earl after breakfast and set off for the rest of our way to Niagara Falls.

Only an hour after we departed, Kai said that he had to use the bathroom. Or rather, he started screaming that he had to use the bathroom.

I told him that it was only an hour after he went last so he should be able to hold it for a little while until I found a gas station or restaurant. He insisted that he had to go RIGHT NOW!

I pulled off the interstate at the next exit. There was no gas station or restaurant in sight. But I did see a sign for a hospital so I headed in that direction. Kai said that he did not want to go to the hospital and wanted me to find a gas station instead. I have no idea why he was so finicky about where he peed.

Against my better judgment, I got back on the highway to look for a different exit. Immediately, Kai screamed that I get off and find him a place to pee.

I took the next exit. There were still no restaurants, but I saw another sign for the hospital. We drove to it, and I dropped Kai and my wife off while I parked the car.

We were somewhere in Cleveland, and now that I looked around, I realized that we were in an area that tourists usually do not visit. When Kai had done his business, we quickly got back in the car and went on our way.

About an hour later, Kai said he was hungry and wanted to stop for lunch. It was a little earlier than I had planned on stopping, but decided to look for a restaurant when my suggestions to keep going were met with loud protests.

My wife and I conferred and we agreed that we were not in the mood for fast food. I saw a sign for place called The Lodge at Geneva On The Lake, and thought that it sounded like a nice spot.

According to the sign, it was about 8 miles off the highway. When I passed up the McDonald’s that was right next to the highway, Kai started to complain.

Loudly.

His protests got more vociferous as we kept driving. He said he was hungry and wanted to eat RIGHT NOW! In the 10 minutes or so that it took to drive to the lodge, his anger grew immensely.

At the restaurant, we asked for a seat outdoors, while Kai yelled that he wanted to sit inside. The air conditioning inside was running too high, so we decided to take a table outside despite Kai’s protests. We had a beautiful view of Lake Erie (and yes, that is a genuine statement with no sarcasm.)

But it was hard to enjoy the scenery.

Kai kept complaining about everything. This was a bad restaurant, he said. He did not want to eat here, he kept repeating. I was tense, wondering if he would cause a big enough scene that we would be forced to leave.

After ordering our meal, my wife suggested to Kai that they take a walk, which he finally agreed to. They found a bench close to the lake. I wondered if Kai was starting to cool off. My wife kept turning around to check to see if our food had arrived, but fortunately it took a long time. By the time lunch was served, Kai had calmed down and they rejoined me at the table.

Kai’s mood had become jovial. “This is a great place,” he said. “We should come here again!”

He even let us take a walk around the grounds after lunch.

After that, we drove the rest of the way to Niagara. Kai’s favorite part of the drive was crossing the border into New York. His least favorite was the traffic on the toll bridge leading to the Falls area.

We checked in at the Holiday Inn. It was not luxurious by any means, but it fit our budget, and, most importantly, was about as close to the American Falls as any motel. We would be able to walk to the main sightseeing spots.

At any motel we stay at, Kai looks forward to seeing how many floors it has. He also loves to walk up and down the hallway of each floor to see all the room numbers. On this occasion, I got him to wait until the next morning to do so, as he wanted to use the swimming pool right away.

Besides looking at room numbers, Kai loves going to motel pools with Mom and Dad. It wasn’t a large pool, but it served its purpose.

Then we took quick showers and went to find a spot to have dinner.

An oddity of the area is the number of Indian restaurants there. There are no McDonald’s or Burger Kings, no Applebees or Olive Gardens, but there are five or six Indian restaurants nearby. We later noticed quite a few Indian tourists, so there must be something about the Falls that attracts visitors from India.

My wife and I like Indian food on occasion, but were not sure if Kai would eat any. He had never had any before. We also were not sure if the dishes would meet his GFCF diet (gluten-free, dairy free), but we figured there would at least be tandoori chicken.

We asked Kai if he was willing to try some Indian food, and when he said he would we chose the closest place.

Amazingly, they did not have any tandoori chicken on their buffet, or any satay as well. But the dishes they had were tasty. And Kai willingly tried several items without a fuss. After our lunch experience, I considered this a victory on many levels.

After dinner, we walked over to the falls. Niagara Falls is on the U.S.-Canada border and is split into two main parts – the Horseshoe Falls on the Canadian side, and the American Falls. We did not have a passport for Kai so we would stay on American soil. You can still see parts of the Canadian falls from the U.S. side, but on this first night, we went over to where we could get a good look at the American Falls.

Even before reaching the Falls, we could feel its power as we walked along the rapids of the Niagara River.

I was struck by the amount of water that was rushing down the river, and when we came upon the Falls, we felt the power of the water dropping over the edge. Relatives who have visited the falls have all commented about how spectacular it is. But until you see it for yourself, it is hard to appreciate its beauty and power. It was quite a feeling to be able to stand only a few feet away, to see it so closely, and to feel the spray of the mist. And it was especially nice when Kai seemed to enjoy it as much as we did.

After that, we walked over to the observation tower where we could get a better view of the entire American Falls.

And then we sat and waited for it to get dark.

Every night, colorful bright lights are shone on the Falls. And when the light show started, Kai got really interested.

This boy loves colors. And as the color changed, he kept commenting. “It’s red.” “Now it’s blue.” “I like yellow.”

The pictures do not do it justice. You’ll have to take my word that it was both exciting to see the colors, and calming to sit outside on this nice evening, listening to the sounds of the Falls.

I could have stayed all night. And we did stay for quite awhile. But as it got late, we eventually went back to our motel.

There was a crowd waiting for the elevators at the motel. When the next elevator came, we squeezed on.

The door shut. And then nothing happened. The elevator did not move. The doors would not open. It was hot. It was crowded.

Someone commented that there might be too many people on board. Kai saw the sign that said the capacity was ten people. He counted. We had 11.

He started to get anxious. We tried to keep him calm.

It was not pleasant being on a hot, crowded elevator, but that would be nothing compared to the agony of being on it with a screaming boy.

Somehow, Kai managed to stay calm enough for several minutes. And in that time, the elevator finally moved. When the doors opened in the basement, we got out and walked up the six flights to our room. And we never boarded a crowded elevator for the rest of our stay there.

The elevator was a bit symbolic of our up and down day. We had some bumpy moments. But in the end, we survived. And we were happy to be at Niagara Falls.

Tomorrow – The Maid of the Mist, and Other Adventures
See our Facebook page for photos from our entire trip

Niagara Falls Vacation – Day 1: Visiting Grandparents, Playing with Rocks & Mineral Cards

We just returned from a trip to Niagara Falls. As you might expect, there were plenty of highs and lows, and I will be writing about all of it over the next few days.

Our son has a three and a half week break between the end of summer school and the beginning of fall term. We typically like to use part of that time to travel – to give Kai exposure to new places, and also because he would drive my wife crazy if we stayed home the whole time.

After our experience on last summer’s vacation, we tried to scale back expectations. This year, we thought a shorter trip might work out better. We also wanted to pick a destination that would be fun and interesting for Kai, but not so jam-packed with sights to see that we would be tempted to do too much.

After much consideration, we decided on Niagara Falls.

As a kid, my family took driving vacations almost every summer. We saw most of the United States that way with my dad driving our station wagon from place to place. But one area of the country we never went to was the northeast. And so, I had never seen Niagara Falls myself.

I wanted to see it as I had heard from others that it is a place you must see at least once. But it was also hard to imagine that there would be so much to do once we had viewed it for five minutes. I thought there would likely be plenty of free time to go to the pool and take it easy.

In the days leading up to our trip, Kai was very excited. It reminded me of how excited with anticipation I used to get as a kid before my family’s vacations. In his last speech therapy session before the trip, he had a nice conversation with Alyson, telling her about his upcoming journey. I think he most looked forward to traveling to a state he had never been to before: New York.

On our first day, we drove to Kai’s grandparents house, as they live about halfway between home and Niagara. Kai was happy to see them, and they gave us a warm welcome.

After all the greetings, Kai could not wait to use the community pool.

He showed Mama Dell what an improved swimmer he is compared with our visit last summer. Though, to our chagrin, his form is never as good with us as it is when his swim instructor supervises him.

When we visit relatives, it is often hard to have a conversation, as Kai requires so much attention. On this visit, however, he was content much of the time playing with his latest obsession. When I was a kid, I collected baseball cards; Kai now collects cards about rocks. But there is no doubt that he enjoys his cards as much as I enjoyed mine.

Mama Dell was the person who first introduced Kai to Basher books a couple of years ago. This is a series of kids’ books on various science topics. The thing that makes these books different from others, and so appealing to Kai, are the fun, colorful illustrations that go along with the explanations of each topic.

Kai now has the Basher books on the periodic table, the human body, biology, algebra and geometry, and astronomy, among others. Recently, he discovered that the company also makes flash cards, and he has been collecting the set of Rocks and Minerals cards.

We have been using the cards as motivators to get him to do the online Thinkwell math program that I learned about from my blog friend Shiroi Tora. Without the cards, we struggled to get Kai to do one section a day. With the chance to earn cards, he eagerly does five or six a day.

Now, sitting by his grandmother’s coffee table, Kai busied himself by re-creating the entire set of cards.


Whenever Kai gets a new card, he wants us to read all of the information on the back. Some of the descriptions are not easy to understand, using words that are difficult for even my wife and I to pronounce. So, we wondered if he learned anything we read him. I was surprised when I quizzed him and realized that he had memorized many of the facts on the cards – things like pyrite is a look-alike of gold, that talc is one of the softest minerals while diorite is a hard igneous rock.

His preoccupation with these flash cards allowed us to have some serious conversation with Dell and Earl. It was funny, though, when every now and then, Kai would yell over from the living room to comment on something that we said. Even when he was engrossed in his own activity and not appearing to pay attention to us, he was listening. (However, when I want him to hear something, I may have to repeat it a dozen times to get his attention.)

Anyway, after great home-cooked meals, a good night’s sleep, and a nice time with the grandparents, we said our goodbyes and moved on to our next destination.

Tomorrow – On to Niagara!
See our Facebook page for photos from our entire trip

Working on Executive Function

Like many kids with autism, Kai has trouble with executive function. Executive function is what allows people to perform activities such as planning, organizing, strategizing, and managing time and space.

Kai’s speech therapist extraordinaire, Alyson, is working with him on this.

Kai usually loves to see Alyson. Who wouldn’t? She is enthusiastic, smart, has lots of energy, and makes the sessions fun for Kai.

And if that weren’t enough, she has a large supply of snacks to choose from. When Kai is in irritable mood, the opportunity to choose a snack he can’t get at home is usually enough to make him less of a grump.

At his latest session, Alyson used Kai’s desire to get a snack to work with him on executive function.

She developed a template that helps the child to organize their thoughts and plans. The template has three parts: Get Ready, Do, and Done. The entire activity is planned out step by step. For now, she helps Kai by prompting him to identify the next step, and then by writing down his comment. When the planning is done, they do the activity, following along the plan that was developed.

In her latest session, they made a school of fish out of dried apricots, pretzels, frosting, and chocolate chips.

Here is the plan that Alyson helped Kai develop:

And here is the result:

Neat, huh? I think that would motivate me to learn how to plan as well!

Stressful Times

Friday was the last day of summer school for Kai. He came home without his shirt.

Biting his shirts and ripping them to shreds is nothing new with Kai. He has done it many times now.

This summer, he actually had the best session of summer school of the three years he has attended. But even so, he destroyed about four or five shirts over the course of the past two months.

Earlier this summer, he got mad when his van was the last one to depart back to school after a field trip to the Jelly Belly factory. It did not help when the driver missed the exit and they were delayed further. And when he was back at school, he released his anger by chewing up his shirt. When I picked him up at school, most of the front of the shirt he was wearing was missing, with nothing there but the collar and sleeves. (He is pictured in it here, several hours later. He wanted to put it back on because he thought it looked like a superhero cape).

On this latest occasion, some of the kids were to be honored at the end-of-summer ceremony with a “gold medal” for being safe all summer, something Kai had known for some time now that he did not achieve. We also learned that he was anxious because the kids at school were competing in Olympic-type activities, and Kai has severe difficulty with the issue of being first, and with handling losing.

That combination apparently led to him getting angry and aggressive. He destroyed this shirt in the process.

The school is asking if we can find heavier shirts that are more difficult to rip apart. Umm, a knight’s armor, perhaps?

While we are somewhat used to hearing these types of incidents at school, the past few days he has been quicker to anger at home as well.

On Friday, he got angry when he and Mom were about to walk the dogs. He had trouble tying his shoes. Then he wanted to use the bathroom. Before we knew it, a little frustration turned into a big eruption. He told Mom to go walking without him, but then got mad when she did.

He threw to the floor all the things that were on the shelf in his room. He peed in the waste basket instead of the toilet. He said really mean things to me and my wife.

It took a long time, and more energy than I really had to expend that day, but he finally calmed down.

But the next day he had a similar eruption.

I’m not sure why he has had these episodes lately. Perhaps his medication needs tweaking. Or, maybe it is my own stress that is keeping me from being as patient with him as I need to be.

In raising Kai, it often feels like we take two steps back for every three steps forward. The past couple days, it has felt more like we are sliding back down the mountain after we had inched our way up.

Hopefully we can find a lift to take us back where we were before. Otherwise, I need to rest up for the long climb.

Walking With Dogs, Our New Favorite Family Activity

We have a new dog this week.

This bulldog has a very different temperament than the two miniature pinschers we had earlier. They were active; this guy sleeps a lot. The min pins barked a lot, especially before they got used to staying with us, whereas the bulldog is generally quiet.

But no matter the type of dog, Kai likes having them around. Sometimes he plays with them, but even when he is not actively engaging with them, he enjoys their presence.

Having the dogs has given us a nice twice-daily family activity: walking with the dogs.

We go every morning shortly after Kai wakes up, and then in late afternoon near dinnertime. (Additionally, my wife takes the dogs out when Kai is in school or therapy).

We live close to a nice wooded walking trail, but rarely used it before. Now, it is our favorite place to go.

Back when Becky and Lucy were staying with us, we even spotted a deer in the woods a few times. Here you can see it just steps away from us. Amazingly, it stood there watching us for about a minute before it walked away.

With our latest guest, Kai had therapy when Edoten arrived. But as soon as he got home, he wanted to take him for a walk.

We found out that Edoten does not always want to move along. So, we have had Kai hold the dog’s favorite squeaky toy, and walk ahead while squeezing it every now and then. Kai thought it was funny and it really motivated Edoten to get moving.

Having dogs around doesn’t eliminate all of our challenges. But I do think that getting out for a walk every day as a family does help to reduce stress for all of us. Even on the worst days, getting outdoors is a nice respite from whatever is causing tension at the moment.

When you raise a child with special needs, taking care of your own mental well being is one of the most important things to do. It is amazing how a little thing like this can help with that.

Picnic Fun Almost Wasn’t

My son and I went to a special picnic the other day.

Journey of Hope is a cross-country bicycle trek that raises funds and awareness for people with disabilities. This week, the riders passed through our area, where a picnic was held for families with special needs to meet the young men and have fun.

I wasn’t sure if Kai would enjoy it; these sorts of events are hit-or-miss with him. But, I wanted to at least stop in and see if he would like it.

As my wife was busy sitting with a couple dogs, I took Kai. As he had his usual therapy session first, we did not arrive until well over an hour after the picnic started. But when we got there, Kai was eager to explore what was going on.

He quickly found an area for water balloons. Unfortunately, there were none left.

I told him that we could do water balloons at home, and tried to redirect him to one of the other activities. But he when he wants something, it is hard to get his mind unstuck. He kept getting madder and madder as he thought of not having the water balloons. “Stupid picnic! I want to go home!”

I was exasperated. Would we leave after only a few minutes?

Another parent suggested that I might find an unused balloon amidst the rubble of popped ones on the ground. So, I began searching. And, amazingly, I found one. Just one.

Kai was happy and we went to fill it with water. I was wondering what we would do after we popped that one.

In filling the balloon, the end broke off. It became impossible to tie. Oh great, now what?

One of the young Journey of Hope riders told Kai that he could pour out the water from the balloon onto his head. Kai liked that idea. And so he did.

And then he wanted to do it again. The young man suggested that it might be easier to pour water from a plastic water bottle instead. He was quite a good sport as he let Kai soak his perfectly coiffed hair. And just like that, Kai’s mood shifted from anger to great joy.

He next went over to the woman who was making balloon animals. I was amazed that he waited patiently for his turn and spoke with the woman while she made creations for other kids.

And then it was his turn. He didn’t ask for anything in particular. He just said he wanted “something big.” And so that is what she made for him.

He kept his new balloon hat on and went over to where music was playing and he danced to the tunes. It was fun to see him bopping to the music while the balloon guy jostled around on his head.

After that, he went to play Buddy Baseball. He played only long enough to bat and run the bases once.

Then it was time to get a spray-on tattoo.



We got a bite to eat, before heading home.

Kai was in a great mood.

I was in a contemplative mood, thinking how fine the line was between having a bad experience and having a great time. In this case, one water balloon and a nice young man made all the difference.

When we got home, his mood again shifted. He got mad when he found out that Mom had taken the dogs for a walk without him, even though he had told her it would be alright earlier.

Sigh.

But later, he calmed down.

And the dogs joined us at bedtime for storytime.

And as you can see, Becky is now feeling quite comfortable around Kai, and vice versa.

Taking My Dad Home, For Now

I drove my dad back home yesterday.

I am not all that comfortable with the decision to take him back, and I know that many will second guess it. But, he is happiest when he is at his rural property, and I wanted to let him enjoy it there for a while longer before we possibly have to force him to leave. (And my sister will be driving there to see him next week, so he won’t be alone for too long before we see how he is doing.)

Before I left him, I did my best to give him supports that are intended to help him remember to do things that he has been forgetting to do. Our experience with visual schedules for Kai came in handy here. I created and put up laminated visual reminders around my dad’s house for him to take his medication, take showers, change clothes, and do laundry. I don’t particularly expect that he will be able to carry forth on these things without someone actually there to remind him, but I wanted to give him every opportunity to live independently for as long as he can.

If these visual reminders are not enough, and I suspect they will not be, we will have to resort to legal means to force him to accept the help that he so adamantly refuses.

On the drive back to his place, my dad talked a little bit about how much Kai has changed. With his failing memory, I wasn’t sure he actually remembered what Kai was like before. But when my dad said that this time he could have a conversation with Kai, I am inclined to believe that he did remember when Kai would not have answered him at all.

Not that it was easy for them to hold conversations this time.

It was kind of funny to see them get mutually frustrated. My dad would sometimes express exasperation when Kai did not respond to his inquiries, particularly when he was distracted from a video he was watching. Kai would get frustrated when Ojiichan did not answer him because his grandfather did not hear him or could not understand what he was talking about.

But still, they both tried.

One day we played the card game Crazy 8s. The rules are very simple, but we had to repeat them over and over for my dad. Kai kept trying to tell Ojiichan not to change the color to green as he had no green cards in his hand. But every time my dad played the Crazy 8, that is what he did, and then he wondered why Kai groaned at him.

On Saturday, we began dog sitting for the two active dogs we had earlier. When we took them for a walk, my dad picked up some colorful leaves that had already fallen off the trees. Well, picking up leaves often interests Kai, so he helped Ojiichan find the most interesting ones and gave them to him. It was great to see them interact over something so simple, yet interesting to them both.

* * * * *

I had planned to drive back home yesterday in time to see Kai before he went to bed. But I had spent so much time cleaning my dad’s house that I was not going to make it in time. So about the time Kai was getting ready to go to bed, my wife called me on my cellphone so that I could say good night to him. It was nice to hear his voice. And then they hung up.

But about 15 minutes later they called again. My wife said that Kai started crying and he missed me. I don’t know what triggered such an emotional response, although bedtime is when I always read with him. I told Kai that I missed him, too, and that I would see him in the morning.

Not too surprisingly, when I got home about 40 minutes later, he was still awake. I could barely get inside the house when he came over and gave me a long, big hug. It was the longest hug I remember ever getting from him. I saw that his eyes were still moist. He said that he really missed me. My wife was a bit jealous, wondering if Kai cried so much when she went to Japan earlier in the year. Of course, he really missed her then, but I was enjoying his affection now.

It probably won’t be too long before Kai is angry with me, and telling me that he wants a new dad, but I’ll long remember this hug and hold on to the thought that this is the better representation of his true feelings toward me.



(Note: I just updated my previous post with a family photo).

My Dad

I got a call from my dad’s neighbors on Sunday. They were concerned about his well-being.

My dad loves the beauty of the outdoors, and has chosen to live in a rural area that provides the serenity he enjoys. But that means he is not nearby, and so we don’t see him too often. And while we go to visit him from time to time, it has been years since he came to stay with us.

But when I got that call, I made the nine-hour round trip to pick him up and drive him back to our house.

I was shocked when he allowed us to take him to see a doctor. To my knowledge, it was the first time in his adult life that he so consented.

Actually, it didn’t happen so easily.

I had hurriedly scheduled an appointment for him, but he said he would not go. He was fine, he insisted. I told him he was not. He still refused to go. We argued.

My wife asked him to go. He likes her better than me. But he still refused. However, on the morning of the appointment, he told my wife, not me, that he would go see the doctor after all.

So we went to see that doctor, and the next day a neurologist. And the following day he went in for an MRI.

And when it was all said and done, we got the diagnosis that I knew was coming. My dad has Alzheimer’s.

Though I’ve known for some time that it was likely the case, as long as no doctor confirmed it, I was able to keep deluding myself that his problems were not so severe.

I will now have to accept it, even if my dad doesn’t. My dad is a tough old coot. He is independent. He is stubborn. He has never admitted a weakness in his whole life, probably because he never had a real reason to.

Even now, he insists he is fine. He believes that he can go on living by himself in the middle of nowhere with no assistance. He is adamant that the neurologist is wrong. That is, when he can remember that he even saw a neurologist.

Though, this morning, I saw a different side of him. As we sat waiting for him to be called in for his MRI, we talked about his situation. For the first time, he told me that he understood that I was trying to look out for his best interests, and that he appreciated it. He acknowledged that he might have to change his ways.

Of course, a couple hours later, he had forgotten that conversation and was back to saying that he was fine and nothing needed to change. But I will remember that little moment.

In fact, between all of the medical business, there have been other moments that I want to hang on to.

At dinner the other day, my dad regaled us with stories about his boyhood days growing up in Hawaii. This man, who forgets anything I tell him within minutes, has perfect memory of his youth. I enjoyed hearing him talk about how he and his friends made their own spear-gun out of scraps, and used it to catch fish and octopus in the ocean. I had no doubt the story was true because I had witnessed countless occasions throughout my life where my dad built things from scratch with no directions. He had ingenuity that I thought came naturally with all dads, but am finding is not so much the case with me.

As his dinnertime stories continued, I asked him when he first learned to hunt. He said that he was about eight years old, and my son perked up. Kai had not appeared to be interested in his grandfather’s stories, but suddenly piped up and asked, “When can I go hunting?” My dad told him there was no place to hunt here, but Kai said that he would go to his grandfather’s place so that Ojiichan can teach him.

There were a few other interactions between them. I don’t remember my dad ever being all that kid-friendly, especially when I was a kid. But with Kai, he made an effort to talk with him. And for a boy who doesn’t always speak clearly, and a man who has difficulty hearing, it was surprising to see how much they did connect.

My dad asked Kai questions, watched him at his swim lesson, and enjoyed seeing him play piano.

Aside from our arguments over his condition, my dad has been remarkably happy all week. In fact, I don’t remember him being this happy in years. I think being around Kai, and my wife, has a lot to do with it.

I know he will not remember the specific events of the week. I’m sure he has forgotten most of them already. But I’d like to think that the good feelings will stay with him.

I know they will with me.

For a week filled with doctor’s appointments and examinations, a terrible diagnosis and lots of discussions with my sister about what this means, the thing I will remember most from this week will have nothing to do with that.

I will always remember it as a week that my dad connected with us like never before.

More Dogs, and Our Fourth of July

We usually visit grandparents on the Fourth of July, but with the holiday falling in the middle of the week this year, Kai not wanting to miss any school (or more accurately his school’s afternoon social activities), and an opportunity to sit for more dogs, we decided to stay at home this year.

After our success hosting a dog over the weekend, a pair of Miniature Pinschers stayed with us for four days beginning Sunday afternoon.

Becky and Lucy were quite different than Kix. Whereas the toy poodle was mellow and quiet, these two were high strung. They barked every time I walked into the room. Forget that, they barked pretty much any time anyone moved. And when you have a boy like Kai who can be a whirlwind of movement and emotions, you can imagine how much barking we heard over the past few days.

There were times when it seemed like an endless loop. Kai would do something to get the dogs excited, and their barking would get him to laugh and run even more, which in turn would rev up the dogs further.

Fortunately, all the barking did not bother Kai at all. He was not scared at all, and actually rather seemed to like it. While they did not fetch balls for him too often, I think the barking satisfied some of his desire to interact with them.

As with Kix, Kai insisted on going along on every walk with the dogs, even with the oppressive heat we’ve had the past several days.

After a day or so, Becky and Lucy started to feel more comfortable in our house. Oh, they still barked, but they warmed up to us, allowing my wife, especially, to hold and cuddle them, something they resisted at first. They even were able to relax around Kai.

Kai was also excited about the Fourth of July holiday. This boy loves his holidays and this one was no exception.

He helped Mom make the cake for the little cookout we had.


Quite festive, don’t you think?

In the afternoon, we found relief from the 100-degree heat with a visit to the local pool.

And after that, we had friends over for our cookout. Kai enjoyed playing with their kids. Although Kai doesn’t interact with other kids the way typical children do, he looks forward to getting together with these boys.

After eating, Kai wanted to do water balloons. Usually, I am the one who does this activity with him. On this muggy evening, I did not feel like running around and getting soaked, so I was grateful that one of the boys agreed to do this with Kai.

Aidan is very understanding and patient with Kai. On this occasion, when Kai started to get frustrated that he could not get the other boy with the balloon, Aidan stopped running to allow Kai to connect. And then they took turns soaking each other with the hose.

When it was getting dark, we went to our town’s fireworks display. Kai was excited (I feel like I am writing that word a lot, but it is all true). He even wore his Uncle Sam/Yankee Doodle hat.

We found a good spot for viewing, and Kai occupied himself with the iPad while we waited.

And once the fireworks started, he provided a play-by-play.

“That’s a giant one!”

“That one looks like an eye.”

“That one looks like a Poké Ball. That’s my favorite.”

As Kai was speaking, I recalled the time when therapists worked to get Kai to say even one word to describe something. Now, he was prattling on with ease.

Afterward, it looked like we would be stuck in the parking lot for hours, but my wife knew of the rarely used back way out and we escaped the traffic and avoided car agony.

Back home, we lit up the backyard for a last bit of fun.

It was a fun, busy, Fourth. And now that the dogs are gone and Kai is back in school, it sure is quiet around here.

Ahhh. ☺

A Companion for the Weekend

We will be dog sitting periodically this summer. Fortunately, our son is excited about it.

Way back when he was at his first preschool, Kai liked the therapy dog that came to school every week. But, otherwise, he did not like being around dogs very much. He was scared of the various dogs that some of his aunts and uncles had. Some were bigger than him, and some barked a lot and were very active.

But as he has grown, Kai stopped being intimated by dogs. And in the past couple of years, he actually started to look forward to being with my sister’s dog, Emi.

His positive attitude opened up the possibility of our hosting dogs.

Kix was to arrive at our house early Saturday morning. The night before, Kai told us that he wanted to be awake when the dog arrived. And at 6:30 the next morning, he eagerly bounded downstairs when Kix arrived.

Kai greeted him enthusiastically. He couldn’t wait to take him for a walk.


We went to the park near our house. Kix had fun sniffing and exploring the new area. Kai enjoyed Kix’s company.

After we got back home from the walk, Kix mostly relaxed the rest of the day. He does not fetch balls and prefers mostly to lie next to someone while receiving tummy rubs. So it wasn’t like Kai was playing with him all day long.

But there is something about just having a dog in the house that lifts everyone’s spirits. Dogs are like babies or small children, so innocent and cute. And I think Kai felt that, even if he couldn’t articulate it.

Whenever it was time to take Kix outside, Kai wanted to come along. I don’t know if he will still be so interested by the end of the summer, but for now, he seems to want to take on the responsibility of helping to take care of the dog.

Kix’s stay with us is very short. His owner will pick him up shortly.

We all loved having him here. And for a boy who spends so much time with his parents on weekends, it was nice having another companion to keep him company.

Awareness of Colors Leads to a Conversation

Many children with autism seem stuck in their own world and don’t take much notice of their surroundings. It was like that with Kai for a long time. But lately, he seems to have a growing sense of awareness of the world around him, and is commenting on it more and more.

Kai has always had a fascination with colors. Not too long ago, he was obsessed with the 120 Crayola Crayon colors. This has now carried over into his observations.

When we are out driving, Kai constantly comments when he sees a car that has a bright or an unusual color.

“That car is lemon colored,” he will point out.

“There’s a kiwi Bug,” he will say as we pass a green VW Beetle.

I am using his newfound interest to interact with him more. I like to point out vehicles and ask Kai to describe the color.

“That’s mango, Dad,” he might say.

Sometimes we debate the colors.

“That truck is asparagus colored,” he would say. I’d respond, “I think it’s more like Pine Green.”

Parents of typical children may not understand the joy I get from discussing car colors with Kai. It is not just because it provides opportunities to make conversation with him about something other than Pokémon. It’s that having any conversation with him is a pleasure after thinking we may never have that opportunity when he was younger. Knowing that he is emerging out of the shell of his own world is a further bonus.

Yesterday, he noticed the color of something other than a car or truck.

We were sitting on our sofa in our basement. He was looking at me, then said, “Dad, you have some gray hair.”

He examined my head more closely.

“You have a lot of gray hair. Why do you have so much gray hair?”

I told him that I was not a young man and that people’s hair turns gray as they get older.

“You have some white hair.”

Oh, why couldn’t he have stuck to noticing colors on cars?

Then, he blurted out, “You have gray hair because I said I didn’t want to be your dad anymore.”

I don’t know where he got that idea from – it is possible that he heard my wife joking about how my hair turned gray after I married and became a dad.

I didn’t want him thinking he was causing me to age. So I told him again that everyone’s hair turns gray as they get older.

But then he started talking about how I had gotten angry when I was trying to help him with his Thinkwell math. I think he had connected that to my hair turning gray.

I told him that I should not have lost my temper. I apologized, and said I would try to be more patient when helping him.

We talked some more, with each of us acknowledging how we get angry sometimes, but how that doesn’t feel good. And how we will both try harder not to be like that.

From kiwi Bugs to gray hair to this. You never know what might come up when you listen to your child and try to engage with them.