Wednesday, May 30, 2012

Dad’s Birthday

My son loves birthdays. His own, of course, but others’ too.

For the past few days, he had been very excited about my upcoming birthday. I think the thought of having birthday cake provided the most anticipation.

Yesterday, my wife and I had a meeting at his school. Every staff member who saw us in the hallway wished me a happy birthday. Kai had apparently told all that it was my birthday.

After school, he came home and wanted to get right to decorating my birthday cake.

And that night, we had my birthday celebration. He gave me a sweatshirt on which he had drawn some of the Scrambled States of America wishing me a happy birthday.

My wife made us a great dinner.

And then Kai helped me blow out the candles on the cake.

Finally it was time to eat the cake, and that was the highlight of Kai’s day.

It was yummy cake for sure.

But the highlight of my day was feeling the love from my family. It was a happy birthday indeed.

Monday, May 28, 2012

A Long Day at the Waterpark – In a Good Way!

Three summers ago, we got season passes to the Six Flags amusement park that is not far from our home. Kai was five years old at the time, and we went quite often that summer. We hung out mostly in the section for very young kids, both in the amusement park and the waterpark section.

In the subsequent two summers, we did not go one time. Kai had outgrown the little kid rides, and was too small and/or too scared of the full-size roller coasters and water slides.

But after our fun weekend at the indoor waterpark a couple of weeks ago when we celebrated Kai achieving Level 3 at school, Kai indicated that he wanted to go back to the waterpark at Six Flags.

With temperatures hitting the mid 90s on this holiday weekend, yesterday provided a good opportunity to make our return.

We got there early to minimize the wait time in what we expected would be an extremely crowded park. With Kai having to pee up to several times an hour lately, we were nervous about possibly being stuck in the car for a couple hours.

Fortunately, though, the line to get in was much shorter than expected.

We got to the main entrance and had our picture IDs made for our season pass, and then made our way over to the waterpark. It opens later than the rest of the park, and we would have to wait about 20 minutes for it to open.

Kai was restless waiting. It was a challenge to keep him calm. Was it going to be like this all day waiting in long lines for every water slide?

But when the gates opened, he was content.

We started out on the lazy river. It is supposed to be relaxing, as you float on tubes down the slow moving waterway. But my son was the only kid who thought of it as a thrill ride.

Even though Kai can swim, and enjoys diving underwater for rocks and shells, he hates being splashed in the face with spraying water. On the lazy river, there are several spots with fountains of water spraying the riders. Kai was terrified each time we approached those areas, urgently telling us to move in the direction away from the water, and approaching a state of panic if we didn’t move away fast enough.

After one loop, we decided to try something less scary – a six-story tall waterslide.

Kai was a bit nervous as we waited in line. But he did not approach the panic he had on the lazy river. And when the three of us got in the big round tube and started down, he was thrilled – in a good way. He loved the ride and wanted to do it again.

Later, we tried other slides, and he enjoyed them just as much and he wanted to go again, over and over… well, in between going to the bathroom anyway.

It was hot. And as the day went on, I got very sunburned. (My wife had made sure Kai had sunscreen, but I was frying). I was constantly thirsty (though I made sure Kai stayed hydrated). I was getting tired. But I wasn’t about to stop or suggest going home as long as Kai was having fun.

A few times, the wait in the lines got a little too long for Kai and he got angry. But then the line started moving and we avoided having to leave. And each run down the slide made him forget his anger and he wanted to go back in line to do it all over again.

When we finally made our last run, we were surprised that the workers were shutting down the waterpark. It was closing time.

We had been there eight hours.

When we got home and I was grilling up a late dinner, Kai looked at the map of the park as he reminisced about the day. He told my wife, “I love Six Flags.”

My wife and I were surprised at how well he had handled the conditions. Kai had tolerated the heat and the lines and had a lot of fun. It was not something that he would have been able to do before.

And so, for us, it wasn’t just a fun day at the waterpark. It was another little milestone achieved.

Wednesday, May 23, 2012

Medical Problem or All in His Mind?

My son has been asking to use the bathroom to pee quite frequently lately. Sometimes he will pee four times in a less than an hour. A couple weeks ago, we had him checked out by his pediatrician.

The doctor took a urine culture and examined him. He said that there was no physical problem with Kai. In his opinion, this is a behavior issue.

I wondered if he would have come to the same conclusion if he had not known that Kai has autism.

Not that I necessarily disagree.

One of the challenges of having a child with autism is deciphering symptoms and trying to figure out if there is a medical problem.

For instance, Kai will frequently say that his stomach hurts, but often we will think that it is his way of trying to get out of an activity he does not want to do, or to keep from eating something he doesn’t want to eat.

In similar ways, he will complain that his leg hurts or his back hurts or something similar. How are we to know for sure whether or not he is really feeling any pain?

With this latest issue with the frequent bathroom visits, we do not see a pattern of him trying to avoid activities. He just seems to really have to go. Sometimes, he will go to pee only a few minutes after he just did. But his need to urinate does not seem to be only in his mind; even when he goes again so soon, he does pee a fair amount most of the time.

We discussed our latest quandary about the frequent bathroom visits with his therapist at school. Kai had been asking to use the bathroom quite frequently there as well.

Since the doctor ruled out a medical problem, the therapist and staff at school decided to treat this as a behavioral issue. They said that this behavior is not uncommon, particularly with boys.

They told Kai that he would be allowed to use the bathroom once every other period. They set up a visual schedule for him, but he became very anxious about having to hold it for so long. After a day or two, the school eased the schedule to permit one visit every period.

Earlier this week, Kai went to the bathroom four times during a 45-minute session with his speech therapist. At one point, he looked extremely uncomfortable and said that he was in pain. And then, even though he used the bathroom right before leaving, he could not hold it and wet his pants in the car on the drive home.

So now we have made an appointment with a specialist.

There is a part of us that hopes the doctor finds a medical problem. That way we would know what is going on and, hopefully, be able to treat it.

If this doctor finds that nothing is physically wrong with Kai, we will have to find ways to change his bathroom habits. And that will not be easy.

Tuesday, May 22, 2012

Field Trip: Learning to Fly, Without Crash Landing

My son’s school has taken him to some interesting places on field trips. The latest, yesterday, was to a place I never knew existed until we heard about the excursion.

The students went to The Actor’s Gymnasium, a school for circus and performing arts. Their tagline is “learn to fly – physically, emotionally, intellectually, and creatively.”

In addition to teaching people the skills to become physical theater artists, they also occasionally put on performances that showcase their work. When I was a kid, we never went to such fascinating places.

Field trips are always dicey with Kai. He always looks forward to them, usually enjoys them immensely, but often has trouble with his behavior, as the trips are a departure from the usual routine.

When Kai came home from school yesterday, I eagerly greeted him and could not wait to hear about his day. But before he could say anything, my wife broke the news to me – Kai had had a bad day.

He walked in the door and threw his hat down. Something had happened on the field trip and he was still angry.

We opened his backpack and found a note from his teacher. She explained that Kai did a wonderful job during most of the trip. He was very patient on the bus going down there, and was very engaged and entertained during the 30-minute performance.

After the performance, the kids participated in group and partner activities. Kai was enthusiastic and patient for the first two stations (juggling and silks), but then became very upset when he was not called first at the third station (tumbling). After that, his behavior deteriorated as he became verbally abusive throughout the remainder of the time.

It is still sometimes hard for me to believe how he can go from being engaged and patient to angry and abusive in a moment’s time. What happened in his mind to change him from being happy to mad so suddenly?

I guess Kai is still very early in the process of learning to fly emotionally. We have a lot of work to do yet to cut down on all the crash landings.

Monday, May 21, 2012

Completing Another Incentive

When Kai was motivated last month to earn The Scrambled States of America Talent Show book, we knew that we had to set up another incentive program for him using the dvd of the book as the prize.

Similar to the last program, he could earn one state each day he was safe at school, or for doing certain non-preferred activities. Each time he earned a state, he could color it in on his map. And, when he had all 50 states colored in, he would receive the dvd.

This time, we gave him an additional way to earn a state – for not knocking on our bedroom door in the middle of the night. I thought it was about time for us to try to break him of that habit.

Alas, the incentive of coloring in an additional state was not enough. Night after night, I heard the knock, knock at our door, and I continued to tuck him back in bed, and then slept in the extra bed in his room.

Until this weekend.

On Friday night at bedtime, with only a few states left before he could finally get his new dvd, he decided that he would not wake me up for the next two nights so that he could watch the dvd over the weekend.

He followed through on his intentions and I got two nights of uninterrupted sleep.

When we woke up on Sunday morning, Kai was able to color in the last state on the map.

He was really excited to watch the dvd. We had a special breakfast edition of our traditional Video Nights, as we had donuts, fruits, and green smoothies while watching the video.

For fans of the book, you will be happy to know that the video does a great job of bringing all of the fun little aspects of the book to life. We all enjoyed it, and Kai wanted to watch it over and over again.

Now that we had a little success with him not waking me up in the middle of the night, we are looking to continue to motivate him in the hopes of breaking that habit once and for all.

Hopefully I will be well rested and have good news to report in another week and a half.

Wednesday, May 16, 2012

A Big Brother at School

When we were at our son’s school last week, another student came up to my wife while she was with Kai and told her, “This guy is a genius!” He was effusive in his praise of Kai, and seemed genuinely happy for Kai that he had made Level 3.

We later found out that the boy is a fifth grader. As Kai is accelerated in math by three years, they are together during math class. A staff member at the school told us that Anthony is like a big brother to Kai, always encouraging him and complimenting him for being so smart. They also said that Anthony enjoys playing with Kai during the after-school program.

We hear so much these days about bullying, and with a child with special needs, it is especially a concern.

So, it is great to know there are kids like this who look after their younger peers. How many kids would even speak with a far younger student, let alone take them under their wings?

So, big thanks to Anthony! We appreciate it!

Monday, May 14, 2012

Celebration Weekend

We often use positive reinforcement to encourage Kai to continue to perform well in areas that are a challenge for him. So, of course, we wanted to give him a big reward for achieving Level 3 at school last week.

This weekend, we traveled to Wisconsin for an overnight visit to a waterpark.

Kai loved the idea of staying at a motel, but I don’t think he was particularly excited about going to the waterpark itself.

Before we went to the waterpark, we took a quick look around the town of Lake Geneva. Kai especially enjoyed the blue sorbet. Here he is showing how his tongue matches his hat and jacket.

Then, we went to the waterpark. We were deflated when Kai was too scared to go on any slides. He has become a pretty good swimmer and does well in the pool when he is under the supervision of his swim instructor. But he seems to lose all of his confidence, and abilities, when he is in the water with us.

I finally coaxed him to go down a very small slide, one for much younger kids. And even on that one, he kept grabbing the sides to keep from going fast, or, at least as fast as you can go on a baby slide.

He then asked for a life jacket. At first, I refused, as he certainly knows how to swim well enough that he shouldn’t need one in such shallow water where he can touch the bottom of the pool.

But I finally relented when I decided that I’d rather he wore it and had fun than be anxious the whole time.

And after that, he seemed more comfortable on the baby slide.

At this waterpark, the next slide up from the baby slide is a very high, long, winding slide that you ride down while sitting in an inner tube. I first figured that there was no way we were going to get Kai to try that.

But my wife and I wanted to try it so we rode down together while Kai watched. It was really fun, and I thought that Kai might actually like it if we could only get him to try it.

And so, I decided to try to coax him to go down one time.

I conferred with my wife, and then we made an offer. Kai would get one of his beloved Icky Stikeez if he went down the big long slide just once.

He was scared. But he wanted the prize. And when we reassured him that he would be safe, he finally agreed to try.

It was a long walk up to the top of the slide.

When we reached the starting point, Kai slowly sat in front of the two-person inner tube. He was apprehensive. He clutched the handles. And then we were off.

He screamed, but it sounded like it was as much because of joy than of fright.

And when we got to the bottom, he was laughing, and gleefully said that he wanted to do it again.

And we climbed back up to the top and did it again. And then he wanted to ride again, and again, and again, each time alternating between riding with me and riding with Mom.

At some point, he took off his life jacket, saying that he did not need it anymore.

My wife and I were exhausted from climbing the stairs over and over. But it was a good kind of exhaustion. Too often we are exhausted from trying to get Kai to do something with us on a vacation. This time, we were exhausted because he was doing it, and having such fun.

That night, we had dinner in our room while watching a dvd. It was a great time.

And then, the next morning, we went back to the waterpark again. And had just as much fun.

On our last run before we had to leave, Kai asked if he could go down in a tube by himself. We said sure, as we smiled at how his attitude toward waterslides had shifted from when we first got there the day before.

We were on this mini vacation because Kai had overcome some major hurdles at school. Now, on this trip, he overcame his fear and had a great time.

His accomplishment at school, followed up by the great time we had on this trip, was the best Mother’s Day present of all.

After his last run down the slide, Kai talked about how he wanted to come here again. He asked if we could come back when he made Level 4 at school. Of course, we said yes.

Level 4 will be another big challenge for him. But he is motivated. Let’s see what he can accomplish.

Sunday, May 13, 2012

Kai’s Mother’s Day Thoughts

On this Mother’s Day, here are 13 things about Mom, from Kai. Gotta say that he is right on target with all of it.

Happy Mother’s Day to my wife, and to all of the moms out there!

Friday, May 11, 2012

A Huge Milestone

My son’s therapeutic school uses a level system to measure students’ progress. When children first enter the school, they are classified as Level 1. When they reach Level 5, they are deemed ready to begin transitioning back to their home school.

Progression from level to level is determined mostly by quantitative measures of behavioral performance. To attain the next level, students must achieve a specified average on their daily point sheet that measures things like following directions, staying on task, and having respect for staff, peers, and property.

Students also must not have more than a specified number of major incidents for a set period of time that increases with each level.

Kai achieved Level 2 way back in November of 2010, about ten months after he started attending the school. It was a major milestone, and we were hopeful that it was a sign of progress.

But for most of the year and a half since then, he has not come close to attaining Level 3.

Kai’s behavior at school had deteriorated. For many months, he had a major incident nearly every day. The staff at school tried to find ways to get his behavior back on track, while we at home sought help through medication, among other things.

For the longest time, it did not look like progress was being made.

But, a couple of months ago, things started to improve dramatically.

Kai started doing much better at school. His major incidents became rare, instead of routine.

And though we knew that he had been doing much better at school, we had not given the Level progression any thought. So, it came as a bit of a surprised when Kai told us at the beginning of this week that he would make Level 3 if he went the whole week without a major incident at school.

We were excited about the possibility. But we were also a bit wary of getting carried away with our hopes. After all, a whole week without a major incident is no sure thing for a boy who was having one or more a day for much of the past year. If he achieved it, it would be because he went two months without more than two major incidents.

Each day this week, after he got home from school, we opened Kai’s backpack to see if he had had a safe day. And, until today, each day he had. We breathed a sigh of relief each time, and got a bit more hopeful by the day.

Late this morning, we spoke with Kai’s therapist at school.

No, it wasn’t bad news.

She invited us to attend the school’s weekly Community Meeting. Our son would be honored for achieving Level 3.

Of course, we wanted to attend.

And when we got to school, we found Kai helping his teacher set up for the meeting. He was smiling and in great spirits. They said that he could sit with us during the meeting. He was beaming the whole time.

During these meetings, there are a number of announcements. Kai’s progression to Level 3 would be one of the last, meaning that he would have to wait, something he has difficulty with. But, this time, he waited very nicely, mostly holding our hands the whole time.

And then it was his turned to be honored.

His therapist called him up front, announced his achievement, and handed him his certificate. Our son had achieved the milestone that appeared unattainable only a couple months ago.

Congratulations, Kai! Well done!

We could not be prouder of our son. It is truly a happy day for us.

Monday, May 7, 2012

Latest Motivator: Ickee Stikeez

Inclement weather postponed our planned miniature golf outing but we had no shortage of activities this weekend.

For our weekly Video Night, we had taco pizza in honor of Cinco de Mayo:

We also played a chemistry game that Mom brought home from Japan:

The goal of the game is to take various element cards and make molecules out of them. It was fun that Kai memorized all of the elements last year, but knowing how they come together to make molecules will be much more useful to him in the future. From just a few times playing the game, it looks like he already knows several compounds including ammonia (NH3), Hydrogen Cyanide (HCN), and Acetylene (C2H2), among others.

* * * * *

Kai and I also went to the birthday party for one of his classmates. It was a pool party held at a park district pool.

I was one of the few parents who wore a swimsuit and got in the water.

Many of the parents dropped their child off. And of those who stayed, most wore street clothes, even the parents of other special needs kids.

I felt conspicuous.

My choice was because I was unsure that Kai would participate if I wasn’t there to prompt and help him. Of course, when he started off the event clinging to me, I wondered if my presence kept him from interacting with the other kids.

It wasn’t until I got him and the younger sister of the birthday boy engaged in a game of catch with a squishy football did he really have fun with another child. Bailey is younger than Kai, but can catch and throw much better than he can. But she was his perfect play partner as she interacted with him quite a bit. When the ball came to him, she would jump on him. And when she threw the ball backward to me, she and Kai would laugh and high-five each other. It was great to see them laugh and play together.

When it came time to eat, they sat next to each other. But, Kai got mad at me when I did not let him eat the pizza, as we have him on a gluten-free, dairy-free diet. Though he was happy when I made an exception and let him have a piece of the birthday cake.

* * * * *
When Kai’s grandmother visited us when my wife was in Japan, she gave Kai a present – funny looking, one inch-high, rubber-textured creatures with suction cups on the bottom called Ickee Stikeez. They are inexpensive (about $2.50 for a pack of three), but Kai was hooked as soon as Bubbe gave him his first ones.

It didn’t take him long to get on the Internet and research them. He found out that there are 24 characters in Series 1, and Series 2 has yet to be released. Bubbe gave him 12 of the characters, and he really wanted the rest of them.

This provided the perfect opportunity to exploit his desires motivate him.

We told him that he could earn one new Ickee Stikeez for every two times he ran a mile at the Rec Center. I never saw him so motivated to run.

This weekend, we ran on Friday afternoon, then he wanted to go right back on Saturday morning to run again so that he could earn his first new character.

On Sunday, we ran in the morning, and then he wanted to run again in the afternoon. I did not want to put my 8-year old through two-a-days so I told him that once was enough. He would have to wait until Tuesday to earn his next character as his after-school schedule on Monday would be too busy to have time to run. He did not like having to wait.

When we came back from the swim party, he insisted that he was not tired and wanted to go running again. I held firm, and he was not happy.

Mom came up with the idea to wake up earlier this morning and go running before he left for school. Kai loved the idea.

We did not want to take the time to drive over to the Rec Center. So, this morning, we all went for a run in our neighborhood.

Kai ran nicely. And he was very happy to have earned his second new Ickee.

I think he will want to run every morning this week.

Of course, with only ten more characters to earn, the morning runs won’t last for too much longer.

Kai wants to write the company and tell them to come out with Series 2. With his motivation running so strongly, I think that I may write to them, too.

Friday, May 4, 2012

Picnic at the Beach

It was a warm day in our parts yesterday. After an exceptionally warm winter, April returned to the norm, with cooler, rainy weather. So, when the sun came out yesterday and the temps warmed into the 80s, Kai asked if we could go to the beach.

It was late in the afternoon before we could leave the house, so we decided to have a picnic dinner on the beach.

When we got to the lakefront, we found only one other family there.

Kai enjoyed playing in the sand for awhile.

My wife and I tried unsuccessfully to fight off the flies. I normally don’t mind flies too much, but these were the kind that bites. I was bitten all over my feet and legs, but, for some reason, they left Kai alone.

Dark clouds started hovering over us when we started to eat our dinner. And when the first drops of rain started to fall, we decided to pack up and head back home. Frankly, I was happy to find an excuse to get away from the bugs.

Kai didn’t mind… he has a fear of thunderstorms so he was glad to leave.

Despite the bugs, it was nice to do an activity all together as a family again. With my wife having been away, and then still exhausted from her trip for the past few days, this was our first family outing in a few weeks.

Kai loved it, and can’t wait to do more this weekend. He has been looking forward to trying a new miniature golf course, as he had wanted to wait until Mom was home. He also did not want to get a new movie for our Video Nights until Mom was back.

So, I’m sure this weekend will be a fun one. Can’t wait!

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