Friday, July 29, 2011

25 Meters

25 meters.

That is the length of the swimming pool where my son as been taking lessons.

This week, for the first time, Kai swam the length of the pool completely on his own, without wearing a noodle, without stopping, without any help.

My wife was very excited to tell me the news when she got home from his lesson. On his first attempts, he got scared and paused along the side of the pool. But then he gained confidence and went the whole way from one end to the other. His form wasn’t perfect, she said, but he did it.

I was thrilled to hear the news, of course. But I think my wife was even more overjoyed. And that is because, months ago, she was very skeptical that Kai would ever be able to do it.

Back then, he was literally kicking and screaming not to go to his lessons. He didn’t want to get into the water, let alone try to swim. And when he did get into the water, he was very anxious. He had to have his security blanket, a foam noodle, around his body as it helped keep him afloat.

To try to overcome his resistance, my wife had promised Kai that if he ever swam the length of the pool on his own, he would get a certain very special reward (which shall not be mentioned here). I was upset when I found out about that promise. The reward was much more than I wanted to promise. But she said that I had nothing to worry about. Kai would never be able to do it, she said.

I wasn’t quite as skeptical. But I have to admit that the progress he has made has come even faster than I thought.

25 meters.

At the beginning, it could have been a mile. Now, it doesn’t seem so far.

Don’t you just love it when your kids exceed expectations?

P.S. Fortunately, Kai has not mentioned the prize, so I am hoping that he has forgotten all about it. And I don’t want anyone to remind him of it!

Thursday, July 28, 2011

Noticing A Change

About ten months ago, I wrote about my son’s reaction to being asked to switch seats in his cab to school. He had always sat in the same seat and the sudden change raised his anxiety and he strongly resisted.

Since then, he has been back in his usual seat in the cab.

Until this week.

Kai’s usual taxi driver is off for a few days.

On Monday, we waited for the cab to pick him up to take him to school. It was late.

Usually, when the cab is even a couple minutes late, Kai starts to get upset. It makes for a rough start to the day as it is difficult for him to wait and then he is in an anxious state when the taxi arrives. And sometimes that can carry over to his performance at school.

But on this morning, he stayed calm. In fact, as the time passed, I was the one to get anxious, not Kai. I worried that the new driver had forgotten to pick Kai up, or that the driver had gotten lost. I was concerned that Kai would be late for school.

Fifteen minutes after the time that our usual driver arrives, I could not take it anymore. I told Kai that I would take him to school.

He remained calm in the car as I drove. And he was happy when he got to school.

The next morning, the taxi arrived at our house on time. But the substitute driver had the kids she picked up first in different seats than usual. That meant that Kai would have to sit in a different spot also.

Uh oh. I was sure that would set Kai off.

But, it did not.

He accepted his new seat without protest.

The next morning, the driver had him sit in another different seat. Again, he was okay with the change.

It seems like such a small thing. But, showing flexibility where there wasn’t any before is quite a nice step in his progress.

Amidst some recent challenges, it is important that we notice the positive changes Kai is making as well.

And so this increased flexibility is duly noted.

Wednesday, July 27, 2011

Collecting Pokemon Cards

So much for pennies.

I wrote last week about my son wanting to collect pennies and how we used that as motivation to get him to dramatically reduce the snorting he has been doing.

But after a few days, he lost interest in the pennies. Perhaps he caught wind of the debt crisis and figured out that his pennies won’t be worth anything in a few years anyway.

Without the motivation to collect pennies, Kai’s snorting returned, though not as much as before.

It again made us wonder if the snorting is a tic that can be controlled for short periods of time, but sooner or later will emerge again.

This past weekend, Kai told Mom that he was interested in collecting Pokemon cards. He showed some interest in them before when he saw his cousins in Virginia play with their cards. But, he hadn’t mentioned the cards again until this weekend. I think his renewed interest is because some of the kids in his class have them.

And so, this weekend, we told Kai that he could earn a Pokemon card for every hour he went without snorting.

I had a stack of cards that one of his cousins had given me back when he saw how fascinated Kai was. I had never given them to Kai because I couldn’t figure out how to play the game and didn’t want to deal with Kai’s frustration of not being able to play. But, for now, he only seems interested in collecting the cards and not in playing the game.

I think Kai likes the Pokemon cards because they have numbers that indicate each character’s respective strengths and weaknesses. The colors and pictures of the amusing looking characters also are attractive. He has never seen any of the videos.

So, with Pokemon on the line, Kai snorted only once the whole weekend. I went through nearly the entire collection of cards that my nephew had given me.

My wife had to rush out on Monday morning to get more cards. I think we were the only people in America who did not know where to get Pokemon cards so we were in a mild panic about not finding any. But, it turns out that they are available everywhere.

My wife got two decks with 60 cards per deck. That should last a good long time, I thought.

As I handed Kai his first card from the new deck, I expected that he would be excited.

But before he even looked at the card, he said that he now wanted to collect Yu-Gi-Oh cards instead.

Sigh. Do they have those at ToyRUs?

Tuesday, July 26, 2011

New Twist On An Old Hobby

When I was a kid, I collected baseball cards. My son’s collecting preferences, however, are in a different area. Check out my latest column in the Patch for the full story.

Monday, July 25, 2011

Best Friends

Our son’s best friend and his family came over for a play date this weekend.

A few months ago, we didn’t even know that Kai had a friend, let alone someone who would be considered a best friend. But we had heard from his teachers how much Kai liked this one boy in his class. And then we saw them together on a few occasions since then and it was obvious that they had a special bond.

On this occasion, they were clearly happy to see each other. They didn’t interact with each other all the time, but they did so often. And that was a lot more than Kai interacted with other kids on play dates we had set up for him when he was younger.

My favorite moment was when we started walking back to our house after they had played at a nearby playground. The two boys held hands. And they maintained the embrace all the way home.

My son has a good friend. It’s enough to bring a tear to my eye.

Friday, July 22, 2011

The Magic Show

My son’s school had a magic show this morning.

Kai was the greeter, welcoming all the parents at his classroom door. And while he did that job well, I think he also wanted to be the emcee. When the show began, he kept announcing the next act from his seat next to us. My wife tried to get him to be quiet, but it was a futile effort.

And then it was his turn to perform.

“Kai the Incredible” performed a trick called The Very Hungry Bag. He hesitantly read some parts of his script as he put a coin into a paper bag. But, when it came time to wave his magic wand, he dramatically adlibbed a countdown before revealing that the coin had disappeared. Then, with some flair, he flipped his magician’s top hat away.

My favorite part came after he finished his trick. He stayed standing up at the front of the room and loudly and confidently began to announce the next performer. The boy who was actually the emcee came up, tapped Kai on the shoulder, and told him to go sit down. I think Kai would have been happy to do the whole show all by himself.

The boy who once did not speak could not be shut up. It wasn’t magic that got him to speak. There was a lot more work these past five years than just saying abracadabra. But, now, with his exuberant personality unleashed, I think it would have taken a real magician to get him to be quiet.

Thursday, July 21, 2011

Budding Pharmacist?

My son is a collector. I recently wrote about his introduction into his grandfather’s hobby of collecting tins. More recently, Kai has taken an interest in accumulating pennies. In addition to these, he has his collection of Ugly Dolls.

But perhaps his most eclectic collection is his stash of used medicine containers.

We have been doing biomedical treatment with Kai since shortly after he was diagnosed with autism. As such, he gets a steady dose of supplements including vitamins and minerals, fish oil, and other natural supplements, in addition to some prescription drugs. These treat things like gut issues, food sensitivities, immune system deficiencies, neurotransmitter malfunctions, and yeast overgrowth, among others.

We mix most of these with apple sauce and give it to him at various times of the day.

Lately, he has become more interested in preparing the supplements. He is particularly excited when a container is running low. When it runs out, he takes the empty container and puts it on a shelf in his bedroom.

He is amassing quite a collection. (The supplement containers shown here are in front of Ugly Town that his grandfather in Japan made for him the last time he visited).

This week, we had another appointment with our DAN (Defeat Autism Now!) doctor. For the first time, Kai initiated a conversation with him.

“Um, excuse me,” he said. “Can you give me more medicines?”

He asked the doctor for different supplements, not because he enjoys taking them, but because he wanted new containers for his collection. And when the doctor happened to oblige with recommendations for a few new supplements, Kai was happy.

When we got home, Kai opened his “medicine store.” He took all of the new supplements and arranged them on the kitchen table. He didn’t want to go to bed; he wanted to keep playing with all of his medicines.

Hmm, I wonder: Is this how most pharmacists get started?

Wednesday, July 20, 2011

A Bonding Moment

I experienced an incredible connection with my son the other day. And it arose out of one of our most frustrating moments.

With my son enrolled in a bicycle riding class this summer and making more of an effort to learn to ride, I took him out for more practice over the weekend.

After my last exhausting practice session with Kai, I realized that balance was the biggest issue with his riding. I was doing all the work of keeping him on the bike. He did not try to adjust his body to maintain his balance and he depended on me to keep him upright. I thought that as long as I held onto the bike as he pedaled, he would never really learn how to balance himself properly.

And so, this time, I decided to try a different technique.

This method employs a modified bicycle with no pedals on it. The idea is that the child sits on the bike with his feet on the ground, and then moves by pushing with his feet. Once he becomes adept at scooting along, he is told to pick up his feet and coast. When scooting and coasting are mastered, the child can learn turning and steering.

Because the child can put his feet down at any time, the risk of falling is minimal. And when he masters scooting, coasting, and turning on this modified bicycle, he is ready to ride with pedals.

I had Kai get on a small, modified bike that we got from a friend just for this purpose. Our friend successfully taught her two kids to ride using this method.

Kai took just a few steps with the bike and immediately got frustrated. He had a hard time moving along.

From what I could tell, his balance was so bad that even with his feet on the ground, his bike leaned to one side and made movement and steering difficult.

I told him to sit straight. He kept leaning to the left.

I advised him to take slow steps. He was angry and took quick steps. That only made it more difficult for him.

I tried to encourage him to keep stepping. He kept stopping.

I pointed out a landmark, just a short distance away, and told him we would turn around to go home from that point. He threw down his bike and said he wanted to quit now.

I was surprised at how hard this seemingly simple action was for him. And I was frustrated with his frustration.

I told him sternly that he would not quit. I acknowledged that this was difficult for him but tried to explain the importance of not giving up. I don’t know how much of that he understood.

When he threw down his helmet and started to walk home, I resorted to making a threat. I told him that I would take away his penny collection if he did not keep trying.

And that really angered him. He spit at me. When his spit didn’t reach me, he walked up right next to me and spit again. I told him that he shouldn’t spit at people and pushed him away.

When Kai is mad, he tells me that I am not his dad anymore. And that is what he shouted to me then. He said that Mom would find him a new one. I told him that it didn’t work that way; I was his dad and he was stuck with me.

Though he was mad, he got back on the bike and stepped the short distance that I originally wanted him to. I gave him props for completing the activity, though I wasn’t feeling too happy about the whole thing.

Once we got home, we both calmed down and had a nice evening.

But I wanted to reflect with him on how things had gone that afternoon.

At bedtime, after I turned out the lights and tucked him in, I told him that I was hurt that he spit at me and that he said that he didn’t want me to be his dad anymore. He started to cry.

I told him that his mom and I do everything we do because we love him and want him to grow up to have a good life. I said that I know that I can be tough on him and that I understood how hard it was for him to ride the bike, but that I didn’t want him to quit because I want him to develop good habits so that he can grow up to be a happy young man.

By this time, he was really crying hard. He told me that he was sorry, and he seemed really sincere about it. It was one of the few times I had seen true sadness and regret from him.

I told him how much I loved him, and we said good night.

Shortly after I left his room, he came out and said that he couldn’t go to sleep until he wrote me a letter telling me how sorry he was. I told him that he didn’t need to write me a letter, but that I would take a big hug.

We hugged a good long time. I told him how happy and proud I am to have him as my son. We both said, “I love you” several times.

The psychologist who works with Kai has told us that he is afraid to have sad emotions and often gets angry or acts silly to hide his true feelings. On this night, he faced his emotions. And because of that, we connected.

I never will forget that feeling.

Now I just need to find a way to help him with his balance on the bike.

Tuesday, July 19, 2011

Easy As Riding A Bicycle?

This week’s column in the Patch takes a look at our long history of trying to teach Kai to ride a bicycle. Read all about it here.

Monday, July 18, 2011

The Price of Peace and Quiet

I recently mentioned that Kai has been making loud, very annoying snorting sounds lately, the frequency and severity of which had increased when we put him on ADHD medication. It also seemed worse when he was feeling stress, leading me to doubt that it was purely a physical problem.

When we took him off the drug last week, the frequency of the snorting decreased, though it did not disappear entirely.

At its worst, his school contacted us, wondering if it was a physical problem, so we made an appointment to have him checked by an Ear/Nose/Throat (ENT) specialist.

We couldn’t get an appointment right away but we finally saw the ENT this past Friday. He said that there was no physical reason for Kai to be making the snorting sound. In his opinion, it was a voluntary act. He recommended that we see a behavioral specialist to work with him not to do that anymore.

That evening, Kai found a penny and added it to his piggy bank. He then took out all the coins from the piggy to see how many he had accumulated. Before long, he was trying to organize them, seeing what year each was from.

That gave my wife an idea. Kai could earn a penny every time he went ten minutes without snorting or loudly clearing his throat. (A soft clearing was acceptable). Kai was eager to begin.

At first, he forgot and snorted and then we would remind him of his opportunity to earn pennies. And by the end of the evening, he had added a few to his collection.

The next day, he snorted a few times early in the morning, but then went the whole rest of the day without doing so again. He was really motivated.

With Mom’s help, he created a timeline chart and taped all of his pennies to it, with the oldest penny to the left and the pennies dated 2011 to the right. He even allowed room on his chart to go all the way up to the year 2060. I laugh at the thought of him still collecting pennies over the next fifty years.

On Sunday, he again went most of the day without snorting. He had accumulated dozens of pennies over the weekend.

All these months, asking him to stop snorting had no effect. Yelling at him to stop snorting had minimal effect. But the chance to earn something that he desires has had a great effect.

Who says that a penny isn’t worth anything these days? For us, it bought us peace and quiet. Now that is a bargain.

Friday, July 15, 2011

S-O-S Best of the Best, Edition 7: Sleep Issues & Bedtime and Special Needs Kids

This month’s S-O-S Best of the Best (BoB) takes a look at sleep issues that affect so many children with special needs. Twenty bloggers share their experiences.

My own post on the topic is from when Kai was waking up in the middle of the night on a regular basis. Since then, we’ve had some good streaks, too. Lately, he has been sleeping through the night about as often as he doesn’t. But he is much more tired in the morning, even when he sleeps through the night, which is a change from before when he was full of energy all day even when he did not sleep much at night.

I don’t know if Kai will ever consistently sleep well. But we’ll keep trying to find ways that might help.

And so I’ll take a look at what the other bloggers have done. And you can too, right here.

Thursday, July 14, 2011

Bad Morning, Good Day

My son has had a series of awful days at school this summer, perhaps due in part to the medication he was taking. He’s had major incidents almost every day, and sometimes more than one.

His latest bad day was this past Tuesday. And this one cannot be blamed on the medication.

This week, our area again suffered wide-spread power outages though thankfully our house was mostly spared this time.

However, that did not mean that we did not have any consequences. Many major intersections had inoperative traffic lights that made driving a nightmare. And though Kai had been doing much better in the car lately, the backups from the non-working lights was too much for him to bear.

On Tuesday morning, as his cab took far longer than usual to get to school, he got anxious and then verbally bullied the cab driver. When they finally arrived at school, he struck her. Furthermore, his frustrations apparently carried over as he later flipped over his desk in the classroom.

Coming after many other incidents at school this summer, dealing with one more was extremely frustrating. It is challenging not to be negative about everything we are doing, and to doubt if we are making the right choices for our son.

Yesterday morning, as I was haranguing him to eat his breakfast and get on the trampoline before the cab came, Kai had a huge meltdown, one of the worst we’ve seen at home in a while.

We could not put him on the cab in that state. I was frustrated and flustered.

My wife stepped in and spoke to Kai in soothing tones. She gave him deep pressure hugs and squeezes. Eventually he calmed down. He said that he was “almost ready” to go to school. And then a few minutes later he got into the car and Mom drove him there.

He ended up having the best day of school in recent weeks. And when I worked with him on some computer learning programs later in the day, he did a fantastic job, staying calm and focused through the difficult parts.

I’m not sure what happened there. But it was a good day following a bad morning, which followed a whole lot of bad days.

Hopefully that is a sign of better days to come.

Wednesday, July 13, 2011

How Many Google Doodles Have There Been?

My son came home from his after-school activities yesterday and went straight onto the computer to surf the Internet. When I didn’t hear anything from him for several minutes, I thought I better check to see what he was up to. After all, I remembered what unsupervised Internet usage could lead to.

This time, Kai had found a site that showed all of the Google Doodles, the Google logos that commemorate holidays and events around the world.

Some of the logos have been shown worldwide, while others are particular to a specific country. I see them from time to time, but had no idea there were so many of them. How many were there, you ask?

Well, I can now tell you since Kai wasn’t just looking at the logos, he was counting them.

As of yesterday, Google had created 1,094 Doodles.

And now you know.

Tuesday, July 12, 2011

My Part Penguin Son

Today’s Patch article takes a closer look at Kai’s love of water. Hot or cold, it doesn’t matter. My son loves going to the beach. Click here for the full story.

Monday, July 11, 2011

Rocks at the Beach

It was hot and humid this weekend. Beach weather!

My son has always enjoyed going to the beach, but in past years he only waded slightly into the shallow water and splashed a bit, mostly preferring to play in the sand. It wasn’t all that long ago that he screamed in protest every week when it was time to go to his swim lessons. So, we are amazed at how comfortable he now is in the water.

Although he doesn’t yet have good arm strokes, Kai loves putting his head in the water and diving under.

Our local beach is convenient, but there are a lot of small rocks near the shore that make it a bit painful to walk. It didn’t bother Kai, as he spent most of his time diving down and bringing up rocks.

He amassed a large collection, going back down, bringing up a handful of rocks, and then carrying them back to shore. After awhile, he smartened up and had Dad lug them back to our beach blanket.

After awhile, I realized that he was going to want to bring them all home. I didn’t want to carry all of them back to the car, let alone have them take up space at home. So, I told him that the rocks have to stay on the beach. He got mad, as he had been looking forward to keeping his collection. I reconsidered, and told him that he could pick out ten to bring home.

At National Parks, you are not supposed to take anything, but I don’t know what the official policy is for this municipal beach. I was a bit embarrassed, though, to be seen bagging up the rocks and carrying them out. My wife, though, thought it was cute that Kai swam so well and worked so hard and wanted to bring them home. After thinking about it more, I agree.

I relented and let him pick out a lot more than ten. We ended up filling about three bags. I asked him who would carry these heavy things and he insisted that he would. And he tried. Though seeing him struggle, my wife and I took his share and let him carry the lighter sand toys.

Hopefully we didn’t break any city rules by taking the rocks. Heck, I think maybe they should pay us for cleaning up the beach a bit. But, regardless, I will treasure the little rock garden we’ve started in our backyard as a small symbol of the progress Kai has made with overcoming his fear of the water.

Friday, July 8, 2011

Our Initial Experiences With Medication

About two months ago, I wrote that we were considering anti-anxiety and ADHD medication for our son. A couple weeks after that, we decided to go ahead and give them a try.

The early results are not encouraging.

Our son’s psychiatrist started out by prescribing a very low dose of an anti-anxiety drug, then increased it a bit a couple of weeks later. He added on an ADHD drug shortly after that.

We thought the greatest change in behavior would be noticed at school or during his therapies, so we told Kai’s teachers and therapists about the medication and asked them to closely monitor his behavior to see if they saw any changes.

During the first few weeks, when Kai was only on a low dose of the anti-anxiety drug, they said that he seemed more relaxed. He endured some stressful situations, such as the start of summer school, fairly well. But the truth of the matter is that the initial dosage was very low and the medicine probably hadn’t really taken affect at that point. It is difficult to say with any degree of certainty that the medicine played a part in his early summer school success.

Since then, we’ve increased the dosage on the anti-anxiety drug and added the ADHD medication. We have noticed more changes in his behavior. Unfortunately, none of them have been good.

Kai has been tired in the mornings, and his teacher reports that he seems lethargic. Instead of being more focused on schoolwork, he is having a harder time staying on task. Worse yet, he seems more irritable and quick to anger. He has had a major incident at school every day over the past couple of weeks. Many involved trying to hurt the staff working with him, or trying to hurt himself.

At home, he has at times been less respectful, as if the release of his anxiety freed him up to be more defiant.

Perhaps the most annoying change is an increase in a loud snorting sound that Kai makes. He’s made this sound before at times, and it may have started when he had a cold or allergy. But it seems clear to me that these days the problem is not a physical one.

Kai could be sitting at the computer, contentedly looking at his favorite YouTube videos, with nary a peep out of him. But then when we ask him to read, he suddenly cannot go more than 10 seconds without this horrendous pig-like noise. It appears to me that anxiety brings this on. Is it a bad habit? Is it a tic? Is it an OCD? Whatever it is, it is driving my wife crazy, and I’m not exactly happy hearing it either.

With these developments, we called Kai’s psychiatrist to update him on how things are going. He is having us stop the medication, at least for the time being. We will see if the snorting, aggressive behavior, and tiredness eases with the stopping of the medicines. If it does, that will be an indication that the medication was the cause and the doctor will need to adjust.

This is the doctor who scoffed at the biomedical treatments that we have done. If we had these results with the biomedical medicines, I would not have been surprised to hear the doctor give us an “I told you so.” But we are finding out that conventional medicine is not an exact science either.

It is too early to give up. We will give the doctor a chance to analyze and adjust. And hopefully we will see better results later this summer and into the fall.

But one thing is for sure. We are finding out what we really already knew. When it comes to autism, there is no sure thing. There is no easy answer.

Thursday, July 7, 2011

A New Hobby

Kai’s grandfather has a passion for collecting. He loves going to antique fairs to look for things that piqué his interest. His collection includes a variety of eclectic items ranging from old boxes of laundry detergent to postcards from bygone days. Perhaps more than anything, he has a lot of old tin containers of everything from typewriter ribbons to peanut butter. (Peanut butter used to come in tin containers? Who knew?)

On our visit this past weekend, Papa told Kai that he could choose three tins from his Fossil collection. These are tin containers that once held watches, sunglasses, or other Fossil products. Unlike most of Papa’s collection, these aren’t true antiques; rather, they are modern pieces that resemble old ones and are made for nostalgia than anything.

But for Kai, it was his introduction into his grandfather’s beloved hobby. He was getting his first tins.

I wondered how Kai would react. In past visits, he had seen tins that Papa put on display, but never seemed overly interested in them.

But the chance to pick out his own excited him. And he wanted more than three. I was embarrassed. I don’t want my son to be greedy. I want him to be appreciative for anything he receives and to not ask for more. I tried explaining that it was special for him to receive any tins from Papa and that he should be thankful for what he had.

But he kept persisting and Papa agreed to let him have five tins. Make that six. No, ten.

And so Kai enjoyed picking out his ten tins. And the rest of our visit, he took notice of the tins Papa had displayed around the house, something he hadn’t done much of before.

When we got home, Kai wanted my help in setting up a display of the tins in his room.

It looks like Papa has started Kai down the path of tin collecting. Knowing Kai’s obsessive personality, there is no telling where this will lead. Maybe he will memorize the dates that each tin came out. Perhaps he will create a catalog that shows the value of each one. I’m pretty sure he will want more.

I smile at the thought that one day they will go to an antique fair together, each picking out their favorite tins.

Tins: the bond between a grandfather and his grandson. Who would have thunk it?

Wednesday, July 6, 2011

Las Palmas Offers More Than A Good Meal

This week’s column in the Patch is about our experiences eating in restaurants with Kai. Click here for the full story.

Tuesday, July 5, 2011

Fourth of July Weekend

We made it over to South Haven, Michigan for the holiday weekend.

Kai loves going to the beach, and the one we go to in South Haven is our favorite within a few hours drive of our home.

Kai is increasingly showing how comfortable he is in the water.

Nothing like a little face-painting to celebrate Independence Day.

Kai loves going to the pick-your-own fruit farms. This weekend, we went cherry picking for the first time. And, as we've been seeing more of this year, he now likes climbing on ladders.

We enjoyed an evening on the beach where we watched the sky light up, first from the beautiful sunset, and then later with fireworks.

All that, plus some great fun with grandparents, made for a truly wonderful weekend.

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