Sunday, July 29, 2012

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.

Thursday, July 26, 2012

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.

Sunday, July 22, 2012

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.


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.

Monday, July 16, 2012

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).

Thursday, July 12, 2012

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.

Thursday, July 5, 2012

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 Pok√© 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. ☺

Sunday, July 1, 2012

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.

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