Noticing Growth Through the Giant Slide

My son capped off his best week of school since last Spring with Student of the Week honors. He’s now put together three good weeks in a row.

We are hoping that this is an indication that the medication he is on is helping him in a positive way now. But, after all the ups and downs we have been through, we are not assuming anything.

Still, it put us in a good frame of mind for a nice weekend.

This week, in addition to all of the usual activities, we made our annual visit to the local pumpkin farm.

Kai wasn’t into seeing the animals, and he has outgrown many of the kiddie rides, but he still loves going down the giant slide.

When we first went there three years ago, Kai was a bit scared, but wanted to try the giant slide. He sat in my lap, clung to my arm, and had a blast. And then we did it over and over again.

Now, he is too big to sit in my lap and he doesn’t want to cling to Dad so much anyway. So, this year, we raced down side by side. Kai won.

Of course, I had to take the picture by the “How Tall This Fall?” sign.

Oh my, our boy is growing up.

Respite

My son’s therapeutic school offers a wonderful program where teaching assistants come to your house and spend time with your child. At first, the TAs primarily just play with the child and begin to develop a relationship with him. Later, they may take him places to teach him proper behaviors in various real-life settings.

The goal is to provide both mentoring for the child, and respite for the parents.

We have been on a waiting list for about a year, but were recently notified that our participation in the program can begin.

The first time that Kai’s mentors came over, we stayed with them to ease the transition.

This past Saturday was the second time they came and this time we left them alone with Kai. They played some games and put up Halloween decorations outside. They seem to be off to a good start in getting to know him, and vice versa.

The idea for the respite is for the parents to get a break from their child. I’m sure most parents use the opportunity to get away for a meal at a restaurant or perhaps go for a romantic walk.

We did yardwork.

My wife and her father planted bulbs. I raked and bagged leaves. Not very romantic, I know.

But, it was wonderful.

I enjoy engaging with Kai when I am doing my yardwork. When he was younger, Kai liked following me around as I mowed the yard. And fall was especially fun as he loved jumping in the piles of leaves that I amassed.

But his interest in these activities seems to be fading each year. These days, if I can get Kai to come outside with me at all, he wants me to play with him rather than do my chores. And so, I rarely get the uninterrupted time to do all the yardwork that needs to be done.

And so it was quite nice to have some of that time this past weekend.

For most, yardwork is a chore. For me, getting a chance to do it was a good respite.

Visiting Aspiritech, and Meeting the Autism Army Mom

I had a chance to visit a very unique company recently, and I invited the Autism Army Mom to join me.

Aspiritech is the only company in America that provides gainful employment to adults on the autism spectrum. It was founded by Moshe and Brenda Weitzberg when their son with Asperger’s syndrome was fired from his job bagging groceries. Their son, Oran, like many others with high-functioning autism, had trouble finding meaningful work in the area in which he was trained.

The Weitzbergs discovered that these adults on the spectrum, with their amazing attention to detail and the ability to perform repetitive tasks, are particularly suited to testing software. And so, they formed Aspiritech, which now employs 15 people with high functioning autism.

One of the workers I met is Rick Alexander. Rick has been so successful that he recently was placed in the role of Team Lead. I feature Rick in my Patch article on the company, but in a Hanabi Boy blog extra, I want to add how interesting it was to get his perspective on being put in a management role for the first time.

Rick said that wasn’t very good at managing people because he didn’t know how to react to the confusing behavior of others. Hah, that was always one of my biggest challenges when I managed a team, too. I can only imagine how hard it would be for someone on the autism spectrum.

Anyway, please read my Patch article for the full story on the successes and ongoing challenges for this fantastic company. I know a lot of us parents are hoping that this business model will be successful. Hopefully, there are enough businesses out there that are willing to take a chance on hiring Aspiritech for their software testing. It would be wonderful to have companies like this when Kai is old enough to start his career.

* * * * *

In addition to meeting with the amazing folks at Aspiritech, I also had the pleasure of meeting fellow blogger Lynn Hudoba for the first time. Lynn is the renowned Autism Army Mom, who always has an insightful, and usually very humorous perspective on being the parent of a child with autism.

Sometimes you hear stories about people who meet celebrities and are let down that they don’t live up to the impression you have of them. In meeting Lynn, though, she turned out to be every bit as likeable as you’d expect from reading her blog.

Lynn also is responsible for Wit and Wisdom from the Parents of Special Needs Kids, the new book that features a great collection of original essays from over forty bloggers. If you haven’t gotten your copy yet, click on the link in the top right corner and check it out.

Having a Bad Time at a Birthday Party

I wrote earlier about some great moments from over the weekend. But, it wasn’t all good.

One of Kai’s classmates was turning eight years old and had a birthday party.

Kai looks forward to these parties. Though it has been our experience that he can either have an absolutely wonderful time, or he has an awful time.

This was one of the awful ones.

This party was held at the boy’s house. We arrived there at the same time as Kai’s best friend from school. We entered together and went down to the basement where several boys were already gathered.

By this age, most parents drop their kids off and leave. And even though Kai goes to a therapeutic school, only one other parent at this party stayed with their child. The others apparently felt that their kids would be okay on their own. But we have never felt comfortable leaving Kai at parties as there is always a chance that he would get upset.

Like this time.

When we went downstairs, all the kids were milling about, playing with various toys. Kai found a toy crossbow that caught his attention. He seemed fine.

But then the party started.

A young man asked the kids to pair up. He was leading them in some type of game. It seemed similar to Simon Says.

Kai refused, even when his best friend asked him to be his partner.

I first tried to encourage him to participate, but he was really upset so I thought it was best to just get him to sit down with me and relax. But, he wouldn’t.

He walked up to the young man who was leading the group of kids and shouted, “This is a stupid party.”

I was mortified, of course.

I pulled Kai away and tried again to get him to sit and calm down. But, he kept trying to go back to the group, not to participate, but to express his displeasure with the party. He continued to shout.

“I hate this party! This is a bad party!”

I wanted to leave. But, I wondered if I would be setting a bad precedent by calling it quits.

I saw that one other boy was not participating with the group. He was playing with Legos by himself. I told Kai that he didn’t have to do the group activity. He could play with Legos, too.

But, he did not want to do that either.

He had more outbursts. I told him that he could just say, “I don’t want to do this” instead of saying the mean words. And I let him know that if he continued to say the inappropriate words he would lose his computer and video time for the next three days.

I was hoping that the group would go on to a different activity. The invitation had said there would be a magic show.

But, as Kai continued to be upset, I realized that he wasn’t going to calm down. And so, rather than have him ruin the party for everyone else, we left.

I apologized to the birthday boy’s mother, who seemed understanding.

Looking back and trying to figure out why Kai was so upset, I think it was a combination of a couple of things.

The environment may have been too much for him. There were a lot of kids running around and being noisy in the relatively small space.

The other thing was that Kai has never done well at birthday parties where there are organized activities that require a lot of listening to a person who is giving directions. We had a similar situation a few years ago at a sports-themed party.

He does much better when he can run around at will, like at the places with the giant inflatable slides. And he did well at his own birthday party earlier this year when all he needed to do was look at animals.

But following along with the rest of the kids in an organized activity? Not so well.

He and I drove home. I explained to him that it was okay that he did not enjoy the activities, but it was not okay to say that it was a “stupid party.” I tried to get him to understand that it was nice of his classmate to invite him, and he shouldn’t get angry because he did not have a good time.

I don’t know if he understood what I told him. But, eventually he finally calmed down.

Later in the afternoon we went to a gymnastics class. He went on all the different apparatuses and expended all of his energy to his heart’s delight. His instructors there said he had a lot of fun and did a great job.

He’s got another birthday party coming up next month. I’ll be anxious thinking about it.

Our Starved Rock Camping Trip

“My wife is not the camping type. Before I came along, she had never gone camping in her life. Nor did she ever intend to…”

That’s how this week’s column in the Patch begins. To read the entire story, click here.

“My Dad Always Tells Me Never to Quit”

Over the past several weeks, my son has wanted to quit soccer, karate, and his piano lessons, among other things. Going back further, you could throw swim lessons in there, too.

When he wants to quit, it is not like Kai comes to us and calmly tells us that he is getting tired of the activity or that he’d rather do something else. No, instead he makes a public spectacle, throwing himself on the ground and screaming at us in front of other parents. He will shout that he hates soccer (or whatever) and that he is never doing it again.

On the occasions that I am with him when he does this, I tell him that he can take a break to calm down, but that he is not going to quit. I try to empathize with him about whatever struggles he is having on that particular day, and explain that if he quits, he will never overcome his difficulties. I remind him of other activities that he wanted to quit, such as swimming, that he really hated at first, but grew to not only become competent at, but also truly enjoy. I repeat that he will not quit, and tell him that if he becomes a quitter, he will never get anywhere in life.

Usually my words seem to have no impact on him as the spectacle continues for quite awhile. He almost never continues the activity nicely on that day. I’ve often wondered if my words had any effect on him at all.

It is not easy to deal with Kai when he is like this, and, at times, it gets to be too much for my wife. She has become frustrated and at various times said that we should stop the piano lessons, karate, and swim lessons. Each time I’ve implored her to continue, at least for a while. If we are to stop an activity, I want it to be on our terms, not because Kai raised a huge ruckus and said he was quitting.

This past Friday, Kai played piano nicely for his teacher. Then, Saturday morning, with my father-in-law in the stands watching for the first time, he did his best ice-skating ever as his skating class has started up again. He followed that up with a really good effort at his karate class. Then, in the afternoon, he had his best soccer game. Kai scored four or five goals, but what I was happy about was that he played with enthusiasm and ran up and down the field throughout the whole game.

Driving home from the game, with my father-in-law sitting next to me in the front seat, I heard him talking with Mom in the back seat. My wife mentioned how another boy did not participate much this week because he had gotten upset about something, much like Kai had a few weeks ago.

Kai then said, “My dad always tells me never to quit.”

I could hardly believe my ears. I actually had to confirm it with my wife later to make sure that I heard that correctly. But, yes, that is what he said.

What a revelation. Though I did not know it, I guess he sometimes listens to me after all.

S-O-S Best of the Best, Edition 11: Family Life – Fun, Loving, and Special

Danette Schott over at S-O-S Research has put together another great collection of posts for S-O-S Best of the Best (BoB). This month, bloggers were asked to share a special, funny, or loving moment from their family life.

Click here and go check it out!

Happy Garbage Day!

Today is garbage collection day in our neighborhood. And that makes it a special day for me.

Oh, it isn’t because I particularly enjoy taking the trash cans out to the street. Although, rolling those containers down the driveway is about as thrilling as it gets around here.

No, the real reason for my fondness for Garbage Day is that my son wants to join in the fun.

“Kai, I’m taking the garbage out to the street. I’ll be back in a minute,” I tell him.

“I want to come with!”

His excitement is palpable.

You may be thinking that it is so sweet that this little boy wants to share an activity with his dad. And it is.

But, his excitement isn’t due to the fun of being with dear old dad.

No, it is because he loves garbage stickers.

In our community, we have to attach stickers (which we purchase for $2.35 each) to each container of garbage we put out for collection. Each sticker has a unique number code printed on it. As my son loves numbers, he can’t wait to see what the number on the sticker is each week.

This morning was particularly special, as not only did we have our usual container of garbage, we also had two bags of fallen leaves as well. So, it was a three-sticker day.

Many dads and sons bond over a game of catch, or shooting some hoops. My son and I bond over garbage.

But that’s okay with me. It’s nice to have a shared experience with him, even if it is just over some trash.

******

This post is part of this month’s S-O-S Best of the Best Series: Family Life – Fun, Loving, and Special. Best of the Best is a collection of bloggers who come together on the 15th of each month to write on one topic pertaining to “invisible” special needs. Check out this month's edition by clicking here.

Take a Hike!

It looked to be the perfect weekend for camping. The weather was great, the fall colors were nearing their peak, and my son had a three-day weekend with the Columbus Day holiday. What could go wrong?

We returned to Starved Rock State Park, where we went a year ago. Starved Rock is the exception to the drab landscape of most of our state.

This year, we hiked to a few places we did not see last year, including Council Overhang, a large “amphitheater” carved naturally out of the rocks over time.

The waterfall at the end of Ottawa Canyon was mostly dry, but it must be spectacular in the spring.

Kai’s grandfather came with us. He kept up on all the hikes.

But Kai wasn’t much for hiking, at least on the trails that I wanted to go on, and that frustrated me a lot. He seemed fine about walking all around our campground where he could look at the numbers of every campsite.

But, when I wanted to expose him to more of the canyons and bluffs and beauty of the area, he loudly protested. His whining reminded me of the similar time we had this summer when we tried to hike in the Smoky Mountains.

It wasn’t until we went to an apple orchard/pumpkin farm later in the weekend that Kai really smiled a lot. Here you see him enjoy the corn barn where he could meet all of his sensory needs by rolling around in a big pile or corn kernels.

I’m exhausted, more mentally than physically. And when I think of going on another vacation with Kai, the foremost thought in my head is “take a hike!” to that.

I’m sure that will change over time. But, for now, I’m happy to be back in our boring home where we have some peace.

A Weekend with Grandfather

“My dad is a throwback to a previous century. Or two.”

So begins my latest Patch article where I recount more of the angst that went into planning a weekend visit with my dad. Click here for the whole story.

And come back here tomorrow for details on our latest weekend adventure where we went camping.

The Beginning of My Story

“I met my son shortly after he turned two years old.”

That is how I begin my original essay for the new book, Wit and Wisdom from the Parents of Special Needs Kids. My story tells the beginning of my journey with Kai, as told in print for the first time.

To read the complete essay, along with other great ones from about forty other special needs parents, click on the link below and buy the book. You'll be glad you did.

Jiji is Here

It is our big week for grandfathers. We started the week at my dad’s place in the country. Now we are back home and my wife’s father has arrived from Japan.

In Japanese, the word for grandfather is Ojiichan. And that is how we refer to my dad. We call my wife’s father Jiji, a shortened form of the word.

Kai developed a bond with my wife’s father early on. Jiji visited often during Kai’s first two years, and helped to raise Kai during some difficult times. I don’t think Kai remembers anything specific from back then, but I have to believe that the bond he formed with Jiji still exists, even though Jiji now visits only once a year.

When Kai was younger, it didn’t matter that Jiji did not speak much English. After all, Kai did not speak at all. And so the communication was non-verbal, and mostly in one direction. Jiji comforted Kai when he needed it, and gave him lots of love. Kai mostly just cried or sat quietly without response.

As Kai has gotten older, he has become quite sociable. But, in a way, I think that has made things more difficult for Jiji. The language barrier is now more evident. As Kai chats endlessly about Pokémon, Jiji can’t make out what he is saying. And when he tries to speak to Kai, it is sometimes hard to know if Kai understands what he is saying. My own Japanese is pretty limited, so if my wife is not around to interpret, it is hard to foster communication between grandfather and grandson.

But that hasn’t stopped Kai from trying to interact with his grandfather. I’ve already heard Kai’s sweet voice call out “Jiji!” many times as he tries to track down his grandfather.

Yesterday, Kai found his grandfather fixing the blinds in his bedroom. A handy man, my wife had a long list of things around the house for her father to work on. Without even taking any time to get over jet lag, he started right on the list. And Kai had to “help” of course. Jiji patiently worked around Kai’s distractions, smiling at his grandson’s energy.

After spending much of this week with two grandfathers, Kai seems to have a handle on both of them. As he watched Jiji fix a kitchen cabinet, out of the blue he said, “Ojiichan is the expert at nature, and Jiji is the expert at fixing things.”

Hah, succinct but so true.

It’s going to be fun seeing how much more Kai learns about Jiji on this visit.

(Note: The photo was taken the last time Jiji visited, about 16 months ago.)

Knock Knock Is No Joke

“I heard the familiar knock on our bedroom door. It was 2 a.m. “

Our son’s sleep issues have arisen again, and are the focus of this week’s column in the Patch. Click here to read the full story.

A Surprising Weekend

It had all the makings of being a difficult weekend.

We were visiting my dad. Not a particularly easygoing man to begin with, he has gotten crankier with age. Set in his ways, he doesn’t want to hear about how he needs to adapt now that he has gotten older.

His eyesight has gotten bad, he has hearing difficulties, and his short-term memory issues are severe. Among other things, those issues make it difficult to communicate with him.

Now throw a boy with autism into the mix.

Kai often doesn’t respond to questions or greetings, and sometimes speaks softly when he does. So, communication with him is a challenge.

He also can be very active. My dad has things scattered throughout his house. It’s a mess, really. But he doesn’t want anyone messing with his mess. And I pictured Kai going through my dad’s stuff, and not listening to us telling him to stop.

Another worry is that my dad lives in the middle of nowhere. He doesn’t have a computer. My son has been hooked on the internet lately. How would he be able to go a weekend without it? What would he do the whole time?

And yet, somehow, it wasn’t nearly as bad as I thought it would be.

In fact, it was pretty darn good.

One feature of living in the country is that there is a lot of room to run around. My dad’s place has some wooded area and open areas, and Kai enjoyed walking around the whole place.

Perhaps Kai’s favorite places to walk to were the various apple trees that my dad has. They were all loaded with fruit. My son loves eating apples and picking apples. It was a good match.

Kai also loves numbers, of course. And my dad has an electronic dartboard in the basement. The numbers on the board are the attraction. We showed Kai how to throw the darts and he was hooked. He kept returning to the dartboard after other activities. He is really too small to throw it well, but he improved a lot as we played.

But aside from the activities that we enjoyed, what made the trip most worthwhile is that my dad made the effort to try to interact with Kai. And Kai responded.

It wasn’t always easy. We had to prompt Kai a lot, and my dad frequently didn’t understand what Kai said so we had to repeat it for him, but they each made the effort and communicated. It was great to see them get to know each other better.

Before we went, Kai told one of his therapists that Ojiichan is the oldest person that he knows. Now, he knows a few more things about him.

And that made for a good weekend.

Yoohoo!

My son is off from school today due to Rosh Hashanah. As I am trying to work in my office, I hear him calling out from the basement:

“Mom, come here! Yoohoo!”

I still recall the days when he didn’t speak. When he wanted Mom he went to get her and then took her hand.

“Yoohoo!” makes me smile.

L'shanah tovah to all of our family and friends that celebrate Rosh Hashanah.

A Perfect Score Means a Good Week

“As the parent of child with autism, one of the things that I always struggle to keep in mind during the tough times is that things always change. When my son’s problems seem to get worse by the day, it is hard to imagine that things will ever change for the better. Yet, they always do.”

This week’s column in the Patch takes a closer look at the ups and downs of parenting a child on the autism spectrum. Get more details about the good week we experienced last week after the tough times we had earlier. Click here to read all about it.

Return to the Ice Rink

You know that winter is right around the corner with the start of my son’s ice skating class over the weekend.

A year ago, Kai took this class for the first time. He could barely stand up on his skates. He was very wobbly on the ice. He was scared, and wanted to clutch onto the girls who were helping him learn.

By the end of the class in the spring, he was able to skate on his own and even skated in an ice show.

Still, I wasn’t sure how he would react to the start of the class now. Sometimes he has anxiety about things that he hasn’t done in a little while. So I was relieved when he was happy to go to the class on Saturday morning.

And when we got there, he didn’t show any signs of the nearly five-month layoff from skating. He skated easily on his own.

On Sunday evening, we always have him do his homework where he has to write about one thing that he did over the weekend. He doesn’t like to write, so it is hard to get him to do this assignment at times. Other times he can’t decide what to write about.

This time, he knew right away that he wanted to write about his skating class. He wrote that he had fun and that it was his favorite thing over the weekend. Thinking about how far he has come in a year, it was my favorite thing, too.

A Nice Finish to a Good Week

“It’s a new day. It’s a new week. Hopefully, it is a new beginning.”

That is how I closed my entry at the beginning of the week.

After weeks of tough times, we had some positive experiences last weekend. Still, we weren’t sure if it would carry over to school. After all, Kai had been having major incidents on an almost daily basis since the beginning of summer.

As the week started, it looked like nothing had changed as far as school was concerned. Kai had three major incidents in the first three days.

And then yesterday, out of the blue, he earned a “100%” on his school point sheet. That meant that he was safe all day. That he followed directions in every period and stayed on task for every class.

Where did that come from?

Surely, it was just a one-day wonder.

Today, he earned a “98%.” That means he had two great days in a row, no longer an aberration.

He also was named Student of the Week for the first time in many months. Obviously the school overlooked his incidents earlier in the week in order to give positive reinforcement to his improved behavior later on.

I don’t know why this sudden change. I can only speculate that he may finally be adjusting to the medication he has been taking.

But, regardless, it is a great way to end the week.

Have a great weekend, everybody!

Loose Tooth

My son had a loose tooth the other day. “Had” being the key word.

Kai gets agitated about the most minor things sometimes so it is not surprising that he got annoyed when his tooth got loose.

He started to pick at it and soon was constantly moving it with his fingers. He wanted me to get it out, but when I felt it, it seemed like it wasn’t yet ready to come out.

So, we told him that it would be awhile and that he should just try to ignore it. Yeah, that wasn’t going to happen.

He kept picking and picking at it.

My wife used the occasion to motivate him to eat his dinner. Eat all the meat, she told him, and your tooth may come out. He ate all of his dinner very diligently that evening, but was perturbed afterward when his tooth was still hanging on.

The next morning, he was still perseverating on his tooth. Oh, this is not going to be good for school, we thought. I could just picture him not paying attention during class, and complaining about his tooth all day.

And then, just like that, he pulled it out.

He was very happy. But no more so than we were.

Still, kids grow up fast. And I’m guessing that it won’t be too long before we look back and fondly recall these days when Kai was still a kid, and laugh about how agitated he got with his loose tooth.

It’s all just a matter of perspective, right?

A Great New Book Just Came Out, and I Am In It!

I am very excited to tell you about a new book about the challenges and rewards of raising children with autism and other cognitive disabilities. Written by parents, this book contains more than forty fabulous essays.

One of my essays is among those included. I’m thrilled to be included in such a special book.

You can get your copy by clicking on the link.