My son didn’t sleep well last night. I think he was too excited about Mom being on her way home.
Kai was very happy as he left for school in the morning. He knew that he was finally going to see Mom again.
And when school let out, she was waiting for him.
He was happy to see her. He told her he had missed her.
And he was also happy to get the presents that she brought back from Japan, including his coveted maze ball.
But in the midst of all the excitement, he also had a bad day in some respects.
I don’t know if it was a coincidence, but he had his worst day in school in many weeks. He also had a terrible piano lesson after playing so nicely the past two weeks while Mom was away.
Perhaps it was the excitement. Maybe he was distracted by the presents. It could have been just the change in routine of having Mom back.
Whatever it was, it will be interesting to see if settles down again over the next few days.
My wife was tired after her long journey back. She went to bed early so Kai and I played with a chemistry game that Mom brought back from Japan.
He enjoyed playing with me.
But he also talked about looking forward to playing with Mom tomorrow. And trying out a new miniature golf course this weekend now that she is finally back.
For Kai, his performance at school did not matter. He piano lesson was no big deal. This was the day that Mom came back. And that made it his best day in weeks.
Monday, April 30, 2012
Sunday, April 29, 2012
Father-and-Son Time Winding Down
It is almost over. After fifteen days, Mom will be back from Japan tomorrow.
I would not want to be a single parent on a regular basis, but I have to say that this was a wonderful experience for me.
I treasured all the time I had with my son, and tried to enjoy every minute of it.
It helped that Kai was very well behaved during this time. He barely had any moments where got angry. He was mostly calm and happy, other than when he was missing Mom, of course.
I doubt that it would have been this easy for me had we had tried this a couple of years ago. But, Kai has come a long way.
I felt comfortable taking him to the grocery store with me. He was happy to pick out some items, and never made a fuss or created a scene.
I was relatively stress free the couple times I took him to a restaurant for dinner. He waited patiently for his food to arrive and ate his meals nicely.
He was a joy to be with in all of the activities we did – from our regular visits to the library to our special activities like going to the movies and playing miniature golf.
Perhaps as recently as two years ago, I doubt that I would have felt comfortable taking Kai out in public to these places all by myself. But as he has made much progress, so probably have I as a parent as well.
On our last father-and-son day, we went miniature golfing one more time. This time, Kai was all smiles, even as we got behind a large group and had to wait several minutes on each hole.
After we got home, Kai was thinking of Mom, and wanted to finish a ‘Welcome Home’ banner that he had started with one of his therapists last week.
It was funny that in one part of the banner, he created a “contract” to Mom from he and I. I asked him what the contract was for, but he couldn’t really articulate what was on his mind. He said something about being a family, so I am surmising that it has something to do with all of us staying together, and no more trips away for Mom.
Note that on the contract, he insisted on using my wife’s name, but he and I are referred to as “Kai & Dad Fukunaga.”
As Kai was getting ready to go to bed tonight, I told him that Mom’s plane was just taking off in Tokyo. It will be landing here just about the time he gets to school in the morning. My wife has promised to pick him up at school in the afternoon.
Kai seemed a bit skeptical that Mom was really on her way home. I reassured him that she would be home tomorrow, but I don’t think he will feel secure until he sees her.
Then, he will be a very happy kid.
And I will be happy for him.
But I will always remember these past two weeks as a time when I got to know my son better, spent a bunch of quality time with him, and had some of the best Dad moments of my life.
I would not want to be a single parent on a regular basis, but I have to say that this was a wonderful experience for me.
I treasured all the time I had with my son, and tried to enjoy every minute of it.
It helped that Kai was very well behaved during this time. He barely had any moments where got angry. He was mostly calm and happy, other than when he was missing Mom, of course.
I doubt that it would have been this easy for me had we had tried this a couple of years ago. But, Kai has come a long way.
I felt comfortable taking him to the grocery store with me. He was happy to pick out some items, and never made a fuss or created a scene.
I was relatively stress free the couple times I took him to a restaurant for dinner. He waited patiently for his food to arrive and ate his meals nicely.
He was a joy to be with in all of the activities we did – from our regular visits to the library to our special activities like going to the movies and playing miniature golf.
Perhaps as recently as two years ago, I doubt that I would have felt comfortable taking Kai out in public to these places all by myself. But as he has made much progress, so probably have I as a parent as well.
On our last father-and-son day, we went miniature golfing one more time. This time, Kai was all smiles, even as we got behind a large group and had to wait several minutes on each hole.
After we got home, Kai was thinking of Mom, and wanted to finish a ‘Welcome Home’ banner that he had started with one of his therapists last week.
It was funny that in one part of the banner, he created a “contract” to Mom from he and I. I asked him what the contract was for, but he couldn’t really articulate what was on his mind. He said something about being a family, so I am surmising that it has something to do with all of us staying together, and no more trips away for Mom.
Note that on the contract, he insisted on using my wife’s name, but he and I are referred to as “Kai & Dad Fukunaga.”
As Kai was getting ready to go to bed tonight, I told him that Mom’s plane was just taking off in Tokyo. It will be landing here just about the time he gets to school in the morning. My wife has promised to pick him up at school in the afternoon.
Kai seemed a bit skeptical that Mom was really on her way home. I reassured him that she would be home tomorrow, but I don’t think he will feel secure until he sees her.
Then, he will be a very happy kid.
And I will be happy for him.
But I will always remember these past two weeks as a time when I got to know my son better, spent a bunch of quality time with him, and had some of the best Dad moments of my life.
Labels:
miniature golf,
Mom
Friday, April 27, 2012
Perplexus
The most popular toy in the waiting room at one of the places where my son goes for therapy is a 3D maze ball called Perplexus. It never seems to be left alone as one child or another is always playing with it.
Kai is hooked on it, too. Whenever he goes there, he looks forward to trying it. He has never taken to puzzles much before, so it is curious that he is obsessed with this one. I think a lot of it has to do with the numbers that are assigned to each step in the maze.
At home, Kai spends a lot of time looking at YouTube videos of people successfully navigating the ball. I think he has it memorized by now.
With Mom in Japan, she wanted to bring back a few special gifts for Kai. One of the things she found is the Perplexus puzzle.
She showed it to Kai on one of our first Skype sessions to give him something to look forward to when she returns.
Since then, every time we Skype, he asks her how far she has gotten in the maze. I think that he thinks that Mom is spending all of her time in Japan working on it. Probably because that is what he would do.
When Mom returns on Monday, I’m sure he will be very happy to see her. But I also think that one of the first words out of his mouth will be to ask her where the puzzle is.
Welcome home, Mom! Now where is that puzzle?
Kai is hooked on it, too. Whenever he goes there, he looks forward to trying it. He has never taken to puzzles much before, so it is curious that he is obsessed with this one. I think a lot of it has to do with the numbers that are assigned to each step in the maze.
At home, Kai spends a lot of time looking at YouTube videos of people successfully navigating the ball. I think he has it memorized by now.
With Mom in Japan, she wanted to bring back a few special gifts for Kai. One of the things she found is the Perplexus puzzle.
She showed it to Kai on one of our first Skype sessions to give him something to look forward to when she returns.
Since then, every time we Skype, he asks her how far she has gotten in the maze. I think that he thinks that Mom is spending all of her time in Japan working on it. Probably because that is what he would do.
When Mom returns on Monday, I’m sure he will be very happy to see her. But I also think that one of the first words out of his mouth will be to ask her where the puzzle is.
Welcome home, Mom! Now where is that puzzle?
Monday, April 23, 2012
A Temporary Lift
Just when we needed it, Kai’s grandmother visited us today.
She helped me out by picking Kai up at school and taking him to his therapy sessions. And while that was very nice for me, it was Kai who was most happy to have Bubbe over.
He was in great spirits throughout Bubbe’s visit. During the entire time, he was smiling and laughing and chatting away. The gloom from over the weekend had dissipated.
He even stayed in a great mood as he played the piano for Bubbe, as well as for Mom and his grandparents in Japan via Skype.
Everyone marveled as he played a difficult piece (for him) very nicely, having practiced diligently all week even without Mom around to help him.
Alas, the Skype call ended, and Bubbe had to leave.
Kai went downstairs to use the computer and I took the opportunity to clean up the kitchen from dinner.
A few minutes later, Kai came back upstairs.
“Dad, I really miss Mom.” He looked really really sad.
I tried to comfort him.
“Did Mom go to heaven?”
I couldn’t help but smile a bit at that one. No, I told him, she went to Japan. She will be coming back.
“Am I in heaven?” Where is all this heaven stuff coming from?
No, I said. You are home. And Mom will be home next week, too.
I hugged him. But it wasn’t until I came up with the idea of watching a Muppet dvd together that his spirits lifted again.
The Muppets and Bubbe: the best medicine for a heartsick boy.
She helped me out by picking Kai up at school and taking him to his therapy sessions. And while that was very nice for me, it was Kai who was most happy to have Bubbe over.
He was in great spirits throughout Bubbe’s visit. During the entire time, he was smiling and laughing and chatting away. The gloom from over the weekend had dissipated.
He even stayed in a great mood as he played the piano for Bubbe, as well as for Mom and his grandparents in Japan via Skype.
Everyone marveled as he played a difficult piece (for him) very nicely, having practiced diligently all week even without Mom around to help him.
Alas, the Skype call ended, and Bubbe had to leave.
Kai went downstairs to use the computer and I took the opportunity to clean up the kitchen from dinner.
A few minutes later, Kai came back upstairs.
“Dad, I really miss Mom.” He looked really really sad.
I tried to comfort him.
“Did Mom go to heaven?”
I couldn’t help but smile a bit at that one. No, I told him, she went to Japan. She will be coming back.
“Am I in heaven?” Where is all this heaven stuff coming from?
No, I said. You are home. And Mom will be home next week, too.
I hugged him. But it wasn’t until I came up with the idea of watching a Muppet dvd together that his spirits lifted again.
The Muppets and Bubbe: the best medicine for a heartsick boy.
Labels:
grandparents,
Mom
Sunday, April 22, 2012
Weekend Without Mom
My son has felt sad at various times during the past week as he missed his mom who is away for a couple of weeks. But overall he has been doing well.
This weekend, however, his melancholy seemed more prevalent.
It is not surprising that the weekend would be the hardest time for my son. He didn’t have school or therapy to distract him. And it is a time when he usually has some fun with Mom.
It wasn’t all gloom and doom. We did have many fun moments. But, he just wasn’t the same happy kid he normally is.
On Saturday, we went to a birthday party. Kai worked very studiously to make a nice card for the birthday boy.
The party was at one of those places with the giant inflatables. We have been to places like that many times and Kai has always enjoyed it. But this time, he was not nearly as excited as usual. He seemed bored and did not want to do anything. I tried to get him to play, but he just wasn’t very interested. Even on the big slide, he went down just a couple of times.
The only time he got excited was when he got to “box” a boy who had irritated him before when they accidentally bumped on the obstacle course. I had to caution Kai not to get too aggressive, but he took great pleasure in knocking the boy down. Fortunately, the other boy just thought it was fun.
After the party, we went to a favorite miniature golf course. We played all 18 holes, but he just did not seem as excited as he usually is.
This morning, he indicated that he had a stomach ache. I asked him if he wasn’t feeling well. He said he not feel good, but then added that he he did not feel good because he missed Mom. Then he said, “Maybe we should get a new mom.”
I tried to comfort him, letting him know that Mom missed him, loved him, and would be back next week. He replied that maybe we should find a new mom until then.
Later in the morning, we went for a walk at our local nature center.
He picked a dandelion flower head that had turned to seed. He said that you make a wish and it would come true if you blow all the seeds off. I was a bit surprised when he said that he had wished for new crayons. Though, later, he did it again and this time wished for Mom to come back early.
When we came back from our walk, we played a game of 8-ball billiards on the Wii. And while we were playing, he forgot about his sadness. Especially when I lost the game by hitting the 8-ball into the pocket before I was supposed to. I gave a big “Oh no!” reaction and got him to laugh and laugh.
In the afternoon, he went swimming with his mentors from school and they reported that he had a great time.
And then he and I had more fun.
But when I left him alone for a few minutes to begin preparations for dinner, he got dejected again. He came over to the kitchen and had the saddest look on his face as he told me that he really missed Mom.
I comforted him, and told him I understood. But this time I chose not to “silly” him out of his depression. Sometimes, I think it’s okay for a boy to feel sad about missing his mother. I think his psychotherapist would agree that it is better that he feels his emotion instead of hiding it.
Soon it was time for our daily Skype call with Mom.
Kai was quiet at first. He did not want to say much. It was very different from our first Skype call where he was so happy to talk with Mom.
But we stayed on the line a long time, and eventually he talked more. He started acting silly. He was more himself again.
I think it helped for him to see and talk to Mom.
And after the call we had a nice dinner. He laughed a lot. We had a nice evening.
My hunch is that the worst is over. During the week he will be busy, and by next weekend he will be looking forward to Mom’s imminent return.
Which is not to say that he won’t feel sad sometimes. I’m sure he will.
But the Skype calls help. And time passes. And then Mom will be home.
This weekend, however, his melancholy seemed more prevalent.
It is not surprising that the weekend would be the hardest time for my son. He didn’t have school or therapy to distract him. And it is a time when he usually has some fun with Mom.
It wasn’t all gloom and doom. We did have many fun moments. But, he just wasn’t the same happy kid he normally is.
On Saturday, we went to a birthday party. Kai worked very studiously to make a nice card for the birthday boy.
The party was at one of those places with the giant inflatables. We have been to places like that many times and Kai has always enjoyed it. But this time, he was not nearly as excited as usual. He seemed bored and did not want to do anything. I tried to get him to play, but he just wasn’t very interested. Even on the big slide, he went down just a couple of times.
The only time he got excited was when he got to “box” a boy who had irritated him before when they accidentally bumped on the obstacle course. I had to caution Kai not to get too aggressive, but he took great pleasure in knocking the boy down. Fortunately, the other boy just thought it was fun.
After the party, we went to a favorite miniature golf course. We played all 18 holes, but he just did not seem as excited as he usually is.
This morning, he indicated that he had a stomach ache. I asked him if he wasn’t feeling well. He said he not feel good, but then added that he he did not feel good because he missed Mom. Then he said, “Maybe we should get a new mom.”
I tried to comfort him, letting him know that Mom missed him, loved him, and would be back next week. He replied that maybe we should find a new mom until then.
Later in the morning, we went for a walk at our local nature center.
He picked a dandelion flower head that had turned to seed. He said that you make a wish and it would come true if you blow all the seeds off. I was a bit surprised when he said that he had wished for new crayons. Though, later, he did it again and this time wished for Mom to come back early.
When we came back from our walk, we played a game of 8-ball billiards on the Wii. And while we were playing, he forgot about his sadness. Especially when I lost the game by hitting the 8-ball into the pocket before I was supposed to. I gave a big “Oh no!” reaction and got him to laugh and laugh.
In the afternoon, he went swimming with his mentors from school and they reported that he had a great time.
And then he and I had more fun.
But when I left him alone for a few minutes to begin preparations for dinner, he got dejected again. He came over to the kitchen and had the saddest look on his face as he told me that he really missed Mom.
I comforted him, and told him I understood. But this time I chose not to “silly” him out of his depression. Sometimes, I think it’s okay for a boy to feel sad about missing his mother. I think his psychotherapist would agree that it is better that he feels his emotion instead of hiding it.
Soon it was time for our daily Skype call with Mom.
Kai was quiet at first. He did not want to say much. It was very different from our first Skype call where he was so happy to talk with Mom.
But we stayed on the line a long time, and eventually he talked more. He started acting silly. He was more himself again.
I think it helped for him to see and talk to Mom.
And after the call we had a nice dinner. He laughed a lot. We had a nice evening.
My hunch is that the worst is over. During the week he will be busy, and by next weekend he will be looking forward to Mom’s imminent return.
Which is not to say that he won’t feel sad sometimes. I’m sure he will.
But the Skype calls help. And time passes. And then Mom will be home.
Labels:
Mom
Friday, April 20, 2012
Missing Mom
I have been trying to be extra patient this week.
Although, I must say, my son has been pretty good for the most part, so I haven’t had my patience tested too often.
He has practiced piano when I’ve asked him to. He has eaten his meals without too much of a fuss. He does his homework with no more than the usual whining.
But still, with Mom in Japan, I wanted to make this as good of a time for Kai as possible. I didn’t want to get upset with him.
In addition to being patient, I’ve tried to make things as fun as possible for Kai.
I got him mini pepperonis for his school lunch. We played Frisbee golf. I made homemade popsicles for the first time in ages. We played games that we haven’t played in a long time. I’ve tried to act silly and make him laugh.
And he does laugh. And he has had a good time. And he continues to do well at school.
But he also is very sad at times.
Which is understandable.
He misses Mom.
I comfort him when he is sad. But nothing quite makes up for Mom being there.
Not even homemade popsicles.
As parents, you’d like to think that your child must love you, but still, you wonder sometimes as they don’t always express it every day.
Well, there’s nothing like Mom being gone for it to be obvious. Kai misses his mom very much, and he will be a really happy kid when she is back.
Although, I must say, my son has been pretty good for the most part, so I haven’t had my patience tested too often.
He has practiced piano when I’ve asked him to. He has eaten his meals without too much of a fuss. He does his homework with no more than the usual whining.
But still, with Mom in Japan, I wanted to make this as good of a time for Kai as possible. I didn’t want to get upset with him.
In addition to being patient, I’ve tried to make things as fun as possible for Kai.
I got him mini pepperonis for his school lunch. We played Frisbee golf. I made homemade popsicles for the first time in ages. We played games that we haven’t played in a long time. I’ve tried to act silly and make him laugh.
And he does laugh. And he has had a good time. And he continues to do well at school.
But he also is very sad at times.
Which is understandable.
He misses Mom.
I comfort him when he is sad. But nothing quite makes up for Mom being there.
Not even homemade popsicles.
As parents, you’d like to think that your child must love you, but still, you wonder sometimes as they don’t always express it every day.
Well, there’s nothing like Mom being gone for it to be obvious. Kai misses his mom very much, and he will be a really happy kid when she is back.
Labels:
Mom
Monday, April 16, 2012
Skype-ing with Mom – Amazing!
We have been using Skype to communicate with my wife’s parents for about a year now. Every week – Sunday evenings for us, Monday mornings for them – we see and talk with them.
It is really nice for them to see their grandson on the other side of the world. But Kai doesn’t really speak much with them.
Of course, a boy with autism is not expected to speak much with anyone. And the limited English of his grandparents further hinders any attempts at conversation.
Now that Mom is in Japan, we plan to Skype almost every day, and I was curious to see if Kai would talk any more with her than he does with Jiji and Baba.
Tonight, we had our first Skype call with Mom.
Kai had had another pretty good day at school today. So he is not letting his mother’s absence affect his performance in school.
But he was looking forward to seeing her on the computer.
From the moment we connected, he started talking.
He told her what he did in school today.
He talked about the Bulls scoring 100 points in their game yesterday.
He answered her questions about going miniature golfing.
He asked her what kind of present she was going to get for him.
His grandparents sat nearby during the call. They marveled with a tinge of jealousy about how much he spoke with Mom.
But they weren’t the only ones who were surprised. I was astounded at how well he spoke and how long he carried on the conversation.
They talked for 25 minutes, which has to be a record for him. Not just a Skype record, but the record for the longest conversation he has ever had.
It wasn’t all that long ago that we were thrilled when Kai could answer some basic questions with one or two word responses. But we could not imagine then that he would ever have a real conversation with back-and-forth exchanges.
But that is exactly what he did tonight.
For a guy who grew up with a rotary phone in the house, the technology of Skype is still amazing to me. But it is not nearly as amazing as the progress my son has made in his ability to hold a conversation.
As we finally neared the end of the call, Kai wrapped his arms around my laptop to give Mom a big virtual hug, and then pressed his lips against the screen to give her a kiss.
It was a fitting conclusion to the most amazing phone call I’ve ever experienced.
It is really nice for them to see their grandson on the other side of the world. But Kai doesn’t really speak much with them.
Of course, a boy with autism is not expected to speak much with anyone. And the limited English of his grandparents further hinders any attempts at conversation.
Now that Mom is in Japan, we plan to Skype almost every day, and I was curious to see if Kai would talk any more with her than he does with Jiji and Baba.
Tonight, we had our first Skype call with Mom.
Kai had had another pretty good day at school today. So he is not letting his mother’s absence affect his performance in school.
But he was looking forward to seeing her on the computer.
From the moment we connected, he started talking.
He told her what he did in school today.
He talked about the Bulls scoring 100 points in their game yesterday.
He answered her questions about going miniature golfing.
He asked her what kind of present she was going to get for him.
His grandparents sat nearby during the call. They marveled with a tinge of jealousy about how much he spoke with Mom.
But they weren’t the only ones who were surprised. I was astounded at how well he spoke and how long he carried on the conversation.
They talked for 25 minutes, which has to be a record for him. Not just a Skype record, but the record for the longest conversation he has ever had.
It wasn’t all that long ago that we were thrilled when Kai could answer some basic questions with one or two word responses. But we could not imagine then that he would ever have a real conversation with back-and-forth exchanges.
But that is exactly what he did tonight.
For a guy who grew up with a rotary phone in the house, the technology of Skype is still amazing to me. But it is not nearly as amazing as the progress my son has made in his ability to hold a conversation.
As we finally neared the end of the call, Kai wrapped his arms around my laptop to give Mom a big virtual hug, and then pressed his lips against the screen to give her a kiss.
It was a fitting conclusion to the most amazing phone call I’ve ever experienced.
Labels:
conversation,
Skype,
speaking
Sunday, April 15, 2012
“Terrible Day” Turns Out Okay
“Today’s a terrible day.”
So said my son as he woke up this morning. The reason was clear: Mom was leaving for a two-week trip to Japan. And Kai was not going with.
My wife had not been to her native land in six years, which is a long time without seeing friends and favorite places. She was scheduled to travel there a year ago, but with the earthquake, tsunami, and subsequent nuclear disaster, she canceled her trip.
We would love to go to Japan with Kai one day, but we don’t think that is feasible right now. Vacations here in the U.S. are hard enough. Taking a 13-hour flight to a foreign land where they speak a different language, a place with extremely crowded cities and small residences, well, that just isn’t going to work with Kai right now.
So, my wife is making this trip alone.
We had told Kai about Mom’s trip several weeks ago, and he did not react much. He did say that he wanted to go, too. But when my wife explained that she would go by herself, he seemed to accept it.
But now that the time for her to leave had arrived, it all finally hit home. He was sad as he hugged Mom before we all got in the car to go to the airport. He asked her to sit next to him in the car.
When we arrived at the airport, he did not get out of the car to say his goodbyes. He just wanted to go home.
But a stop at the grocery store on the way home lifted his spirits. I let him pick some of the items to buy and he happily chose papaya, watermelon, and corn on the cob.
At home, I tried to keep him busy. We played with a marble run. We went to the park. We watched a favorite video together as we adapted our video night tradition for a special lunchtime version.
In the afternoon, I gave him a choice of special activities. He chose miniature golf. But, he did not want to go to a new course. “Not without Mom,” he said. So, we went back to one we went to two weeks ago. And we had fun.
Later, he helped prepare dinner by husking the corn we had gotten earlier. And then we shared some laughs over dinner.
After dinner, he joined me in watching the end of the Chicago Bulls basketball game. Usually, I am happy to catch just a few minutes of games by myself while washing dishes. Kai sometimes likes to see the score, but rarely watches for more than a couple minutes.
This time, however, he shared my excitement as the Bulls made a basket to send the game into overtime, and then kept watching the entire overtime period as the Bulls went on to win the game. It was a father-and-son sports bonding moment that so many dads have all the time, but was a rare one for me.
So we had had a nice day. And for the most part, Kai did not seem sad.
But Mom was never far from his thoughts.
When the Bulls scored their 100th point, Kai shouted with glee. He said that 100 points meant that Mom has to come back early. I told him that wasn’t true, but he said that he couldn’t wait to tell her when we Skype with her.
I guess I can't expect him to get over Mom in one day, no matter how good it was.
So said my son as he woke up this morning. The reason was clear: Mom was leaving for a two-week trip to Japan. And Kai was not going with.
My wife had not been to her native land in six years, which is a long time without seeing friends and favorite places. She was scheduled to travel there a year ago, but with the earthquake, tsunami, and subsequent nuclear disaster, she canceled her trip.
We would love to go to Japan with Kai one day, but we don’t think that is feasible right now. Vacations here in the U.S. are hard enough. Taking a 13-hour flight to a foreign land where they speak a different language, a place with extremely crowded cities and small residences, well, that just isn’t going to work with Kai right now.
So, my wife is making this trip alone.
We had told Kai about Mom’s trip several weeks ago, and he did not react much. He did say that he wanted to go, too. But when my wife explained that she would go by herself, he seemed to accept it.
But now that the time for her to leave had arrived, it all finally hit home. He was sad as he hugged Mom before we all got in the car to go to the airport. He asked her to sit next to him in the car.
When we arrived at the airport, he did not get out of the car to say his goodbyes. He just wanted to go home.
But a stop at the grocery store on the way home lifted his spirits. I let him pick some of the items to buy and he happily chose papaya, watermelon, and corn on the cob.
At home, I tried to keep him busy. We played with a marble run. We went to the park. We watched a favorite video together as we adapted our video night tradition for a special lunchtime version.
In the afternoon, I gave him a choice of special activities. He chose miniature golf. But, he did not want to go to a new course. “Not without Mom,” he said. So, we went back to one we went to two weeks ago. And we had fun.
Later, he helped prepare dinner by husking the corn we had gotten earlier. And then we shared some laughs over dinner.
After dinner, he joined me in watching the end of the Chicago Bulls basketball game. Usually, I am happy to catch just a few minutes of games by myself while washing dishes. Kai sometimes likes to see the score, but rarely watches for more than a couple minutes.
This time, however, he shared my excitement as the Bulls made a basket to send the game into overtime, and then kept watching the entire overtime period as the Bulls went on to win the game. It was a father-and-son sports bonding moment that so many dads have all the time, but was a rare one for me.
So we had had a nice day. And for the most part, Kai did not seem sad.
But Mom was never far from his thoughts.
When the Bulls scored their 100th point, Kai shouted with glee. He said that 100 points meant that Mom has to come back early. I told him that wasn’t true, but he said that he couldn’t wait to tell her when we Skype with her.
I guess I can't expect him to get over Mom in one day, no matter how good it was.
Labels:
Mom
Biomedical Update: Leucovorin
Kai has been in great spirits for the past few weeks. He rarely angers, and seems more flexible. Beyond that, his communication skills have taken a leap forward as he responds much more often and quickly to our attempts to interact with him. And I have noticed increased communication when he is with other kids as well.
His school noticed the change as well, even telling us the other day that he is “a completely different Kai.”
So the question is why?
I have a couple of theories.
Of course, the therapy that Kai receives at school and with private therapists has to be a factor. But the timing and dramatic nature of the change indicates that there may be something else at work.
As mentioned before, we changed psychiatrists and medications earlier in the year. The new psychiatrist currently has Kai on a combination of a non-stimulative ADHD drug, along with a small amount of Resperidone. The amount of Resperidone is apparently small enough not to trigger the side effect of massively increasing his appetite that we saw before under a higher dose. And I believe that the reduction in anger and increase in focus is, in part, due to the medication.
But I think there is also something else having an impact.
A few weeks ago, we started a new biomedical treatment after tests suggested by our DAN! doctor indicated that Kai was deficient in folate receptor antibodies.
A relatively new study indicates that low folate levels in the brain are common among children with autism, and that this condition can result in an array of neurological dysfunction.
The treatment for this is a very high dose of folinic acid in the prescription form leuvocorin, and a dairy-free diet. In this early-stage research, the children treated with leucovorin had significantly higher improvement ratings over a mean period of 4 months than the control group in verbal communication, receptive and expressive language, attention and stereotypical behavior.
Kai has shown improvement in exactly those areas, and the timing of it ties more closely with the introduction of leucovorin than with the traditional meds. And so, I believe that the leucovorin is having a big impact.
I am usually not one to say that about any of the treatments we have pursued. Usually I am cautious about attributing improvement to new treatment we have pursued. But in this case, I am encouraged.
Of course, we will keep monitoring it. And I will try to keep you posted.
His school noticed the change as well, even telling us the other day that he is “a completely different Kai.”
So the question is why?
I have a couple of theories.
Of course, the therapy that Kai receives at school and with private therapists has to be a factor. But the timing and dramatic nature of the change indicates that there may be something else at work.
As mentioned before, we changed psychiatrists and medications earlier in the year. The new psychiatrist currently has Kai on a combination of a non-stimulative ADHD drug, along with a small amount of Resperidone. The amount of Resperidone is apparently small enough not to trigger the side effect of massively increasing his appetite that we saw before under a higher dose. And I believe that the reduction in anger and increase in focus is, in part, due to the medication.
But I think there is also something else having an impact.
A few weeks ago, we started a new biomedical treatment after tests suggested by our DAN! doctor indicated that Kai was deficient in folate receptor antibodies.
A relatively new study indicates that low folate levels in the brain are common among children with autism, and that this condition can result in an array of neurological dysfunction.
The treatment for this is a very high dose of folinic acid in the prescription form leuvocorin, and a dairy-free diet. In this early-stage research, the children treated with leucovorin had significantly higher improvement ratings over a mean period of 4 months than the control group in verbal communication, receptive and expressive language, attention and stereotypical behavior.
Kai has shown improvement in exactly those areas, and the timing of it ties more closely with the introduction of leucovorin than with the traditional meds. And so, I believe that the leucovorin is having a big impact.
I am usually not one to say that about any of the treatments we have pursued. Usually I am cautious about attributing improvement to new treatment we have pursued. But in this case, I am encouraged.
Of course, we will keep monitoring it. And I will try to keep you posted.
Labels:
Alternative medicine,
biomedical,
Leucovorin,
medication
Friday, April 13, 2012
“A Completely Different Kai”
We had our semi-annual parent-educator conference at our son’s school this week. In the past, we’ve somewhat dreaded meetings with school as we learn in more detail about Kai’s outbursts or other struggles.
But, this meeting was completely different.
Kai’s teacher showed us a chart that tracked his academic progress. As we knew, Kai is far above grade level in math. But he is above average in reading as well, although that is mostly for fluency and not comprehension.
His problem area is writing. But Kai has made progress in recent weeks.
The school recently started a new program to teach writing to students. They hold a Writer’s Workshop every day, and students learn the steps to good writing, from preparing their thoughts, to choosing a compelling way to begin their composition, filling in the details, and wrapping it up at the end.
I know that Kai really dislikes writing, so we were very pleasantly surprised to find that he actually enjoys the workshop and participates nicely. The teacher showed us examples of his writing and the quality was much better than I thought he would be able to do.
Another thing that was encouraging was learning about the school’s new program to teach students not to be rigid in their thinking. That is one of the big hurdles for kids on the spectrum, and for many of the other kids at this school as well.
The school is using Superflex and the Unthinkables, which uses comic superheroes as a fun way to teach flexibility. Leafing through the materials, it was easy to see why the students were so eager to participate in learning a topic that would otherwise seem so mundane.
I feel fortunate that our son is able to attend a school that is finding smart, new approaches to teaching their students.
Besides all of the information about Kai’s academic progress, perhaps the most encouraging news was hearing how well he has been doing in terms of behavior, attitude, and communication. The staff said he has been like “a completely different Kai”, being very flexible and not getting upset over things that would throw him off so much before.
In an otherwise stressful week, it was such a joy that the one area of our life that usually provides the most stress instead provided us with a welcomed respite.
But, this meeting was completely different.
Kai’s teacher showed us a chart that tracked his academic progress. As we knew, Kai is far above grade level in math. But he is above average in reading as well, although that is mostly for fluency and not comprehension.
His problem area is writing. But Kai has made progress in recent weeks.
The school recently started a new program to teach writing to students. They hold a Writer’s Workshop every day, and students learn the steps to good writing, from preparing their thoughts, to choosing a compelling way to begin their composition, filling in the details, and wrapping it up at the end.
I know that Kai really dislikes writing, so we were very pleasantly surprised to find that he actually enjoys the workshop and participates nicely. The teacher showed us examples of his writing and the quality was much better than I thought he would be able to do.
Another thing that was encouraging was learning about the school’s new program to teach students not to be rigid in their thinking. That is one of the big hurdles for kids on the spectrum, and for many of the other kids at this school as well.
The school is using Superflex and the Unthinkables, which uses comic superheroes as a fun way to teach flexibility. Leafing through the materials, it was easy to see why the students were so eager to participate in learning a topic that would otherwise seem so mundane.
I feel fortunate that our son is able to attend a school that is finding smart, new approaches to teaching their students.
Besides all of the information about Kai’s academic progress, perhaps the most encouraging news was hearing how well he has been doing in terms of behavior, attitude, and communication. The staff said he has been like “a completely different Kai”, being very flexible and not getting upset over things that would throw him off so much before.
In an otherwise stressful week, it was such a joy that the one area of our life that usually provides the most stress instead provided us with a welcomed respite.
Labels:
school
Thursday, April 12, 2012
Reward Earned: Scrambled States of America
Kai loves geography and has had an affinity for the United States for quite awhile now. From the time he was about four years old, he could already identify each state by its shape.
One of his favorite games over the past year or so has been The Scrambled States of America. It features the states as colorful characters. Players try to win each state by being the first to give correct answers to various questions.
The game is based on a children’s book of the same title. We got the book for Kai for Valentine’s Day and he loved it. The story is about the fifty states lamenting that they are tired of being in the same place all the time, and deciding to mix things up so they could each see a different part of the country. The story is told an drawn in a very fun, creative way.
We found out that there is a sequel to the book called The Scrambled States of America Talent Show. As Kai really wanted it, we decided to use it as incentive.
We printed out a map of the United States and told him that he could color in one state each time he had a safe day at school, practiced piano nicely without complaining, or ran 13 laps (just over one mile) at the Rec Center. When he had all 50 states colored in, he would earn the book.
We have had the program in place for about a month, and for a long time, he wasn’t as motivated as we hoped he would be. But in the past week, as he saw how close he was to earning his prized book, he finally got excited about the possibility. He even volunteered to go running with me, and then did so nicely with no whining at all. It was a remarkable change from my previous attempts to get him to run.
The other day, when he practiced piano nicely, he got to color in his last state.
He had done it. He had earned his reward.
And as you can see, he was a very happy kid.
One of his favorite games over the past year or so has been The Scrambled States of America. It features the states as colorful characters. Players try to win each state by being the first to give correct answers to various questions.
The game is based on a children’s book of the same title. We got the book for Kai for Valentine’s Day and he loved it. The story is about the fifty states lamenting that they are tired of being in the same place all the time, and deciding to mix things up so they could each see a different part of the country. The story is told an drawn in a very fun, creative way.
We found out that there is a sequel to the book called The Scrambled States of America Talent Show. As Kai really wanted it, we decided to use it as incentive.
We printed out a map of the United States and told him that he could color in one state each time he had a safe day at school, practiced piano nicely without complaining, or ran 13 laps (just over one mile) at the Rec Center. When he had all 50 states colored in, he would earn the book.
We have had the program in place for about a month, and for a long time, he wasn’t as motivated as we hoped he would be. But in the past week, as he saw how close he was to earning his prized book, he finally got excited about the possibility. He even volunteered to go running with me, and then did so nicely with no whining at all. It was a remarkable change from my previous attempts to get him to run.
The other day, when he practiced piano nicely, he got to color in his last state.
He had done it. He had earned his reward.
And as you can see, he was a very happy kid.
Tuesday, April 10, 2012
A Columnist Says Goodbye
I am facing a crisis of my own making at home, and will be stepping away from my column on Patch. Today’s will be the last.
I hope to continue to write on this blog periodically, but it likely will not be as often or as regular as before. Thank you to all who have stopped by.
To read my final Patch column, please click here.
I hope to continue to write on this blog periodically, but it likely will not be as often or as regular as before. Thank you to all who have stopped by.
To read my final Patch column, please click here.
Labels:
Patch
Monday, April 9, 2012
Gardening, Golf, and Growth
We had an Easter egg hunt yesterday morning, and then it was time to get outside and enjoy the beautiful day out.
With the exceptionally warm Spring we have had, we decided to start our vegetable garden earlier than usual this year. We put everything in pots or planter boxes so we will be able to move them to shelter if the forecast calls for freezing temperatures.
Kai enjoyed helping me this year. He picked out the seeds for the various herbs and vegetables and chose the container for each one. He helped me prepare the soil, and then planted all the seeds with my guidance.
It was nice that he did not get overly silly or impatient. It was a nice way to spend an Easter Sunday morning.
In the afternoon, the three of us found another miniature golf course in our area that we had not gone to before. Miniature golf has become one of Kai’s favorite weekend activities.
Like last week’s course, this course was a lot of fun. Our favorite hole was number seven, which featured a roller coaster that carried your ball to the green.
Although the place wasn’t exceptionally crowded, we did end up having to wait on nearly every hole. In the past, that would have been a recipe for disaster. But this time, Kai stayed very calm and we enjoyed all 18 holes.
He also played nicely, taking more time to aim the ball when he putted, instead of playing ‘hockey style’ like he has in the past where he just kept chasing after the ball and hitting it before it stopped rolling.
We hope these little things are signs of growth and maturity. Regardless, it made for a very nice day.
With the exceptionally warm Spring we have had, we decided to start our vegetable garden earlier than usual this year. We put everything in pots or planter boxes so we will be able to move them to shelter if the forecast calls for freezing temperatures.
Kai enjoyed helping me this year. He picked out the seeds for the various herbs and vegetables and chose the container for each one. He helped me prepare the soil, and then planted all the seeds with my guidance.
It was nice that he did not get overly silly or impatient. It was a nice way to spend an Easter Sunday morning.
In the afternoon, the three of us found another miniature golf course in our area that we had not gone to before. Miniature golf has become one of Kai’s favorite weekend activities.
Like last week’s course, this course was a lot of fun. Our favorite hole was number seven, which featured a roller coaster that carried your ball to the green.
Although the place wasn’t exceptionally crowded, we did end up having to wait on nearly every hole. In the past, that would have been a recipe for disaster. But this time, Kai stayed very calm and we enjoyed all 18 holes.
He also played nicely, taking more time to aim the ball when he putted, instead of playing ‘hockey style’ like he has in the past where he just kept chasing after the ball and hitting it before it stopped rolling.
We hope these little things are signs of growth and maturity. Regardless, it made for a very nice day.
Labels:
Easter,
miniature golf,
weekends
Sunday, April 8, 2012
Passover and Easter
Friday night, there were a few times when Kai wanted to take over his grandfather’s role in leading the Seder. The next day, he asked when he would be able to lead it. I told him that when he was grown up and had his own family, he could be in charge of the Seder.
He did not want to wait that long.
At lunchtime, he wanted to repeat the Seder, this time with him in charge. And so we did.
_______________________________________________
A few years ago, we took Kai to our local Park District’s Easter Egg Hunt. It wasn’t much of a “hunt” as all the plastic eggs were distributed in plain sight in a big open field. When the signal was given, the throng of kids stormed the field and grabbed all the eggs they could. It was an Egg Grab more than an Egg Hunt.
At that time, Kai was still more in his own world. He did not communicate much. He did not listen to commands well. So, when the other kids started running onto the field and going for the eggs, Kai did not move. Mom had to take him by the hand and pull him onto the field. And when they were in the field, it was all she could do to get him to pick up a few eggs before the other kids grabbed them all.
We did not go to the big Easter egg hunts in the years after that.
But, this year, Kai saw a poster for the event the other day and said he wanted to go. With a bit of trepidation, I took him yesterday morning.
This time he waited patiently for the signal. And when it was given, he ran amidst the huge throng of kids and had no problem quickly filling my hat with ten eggs. (I had forgotten to take an Easter basket with us).
He has changed so much since that last egg hunt, and it was a joy to see.
Kai could have easily gotten a lot more eggs. But he had heard the announcement that each child was limited to ten, and he obeyed the rules. I was disappointed when we saw other kids with a lot more than ten eggs. I had to praise him for following the rules, even as he said that next time he would go for more.
In the afternoon, it was time to color eggs. Kai looks forward to it, and had a hard time waiting until we were all ready. But once he had colored about eight or nine eggs, he had had enough and it was up to my wife and I to finish coloring the three dozen eggs we had.
But it was a fun time.
This morning, Kai looked forward to seeing what the Easter Bunny brought. He enjoyed his Easter basket somewhat, but as he doesn’t eat chocolate or most candy, the Easter treats are not all that exciting for him.
It looks like a nice day out. We hope you are enjoying your Easter Sunday.
He did not want to wait that long.
At lunchtime, he wanted to repeat the Seder, this time with him in charge. And so we did.
_______________________________________________
A few years ago, we took Kai to our local Park District’s Easter Egg Hunt. It wasn’t much of a “hunt” as all the plastic eggs were distributed in plain sight in a big open field. When the signal was given, the throng of kids stormed the field and grabbed all the eggs they could. It was an Egg Grab more than an Egg Hunt.
At that time, Kai was still more in his own world. He did not communicate much. He did not listen to commands well. So, when the other kids started running onto the field and going for the eggs, Kai did not move. Mom had to take him by the hand and pull him onto the field. And when they were in the field, it was all she could do to get him to pick up a few eggs before the other kids grabbed them all.
We did not go to the big Easter egg hunts in the years after that.
But, this year, Kai saw a poster for the event the other day and said he wanted to go. With a bit of trepidation, I took him yesterday morning.
This time he waited patiently for the signal. And when it was given, he ran amidst the huge throng of kids and had no problem quickly filling my hat with ten eggs. (I had forgotten to take an Easter basket with us).
He has changed so much since that last egg hunt, and it was a joy to see.
Kai could have easily gotten a lot more eggs. But he had heard the announcement that each child was limited to ten, and he obeyed the rules. I was disappointed when we saw other kids with a lot more than ten eggs. I had to praise him for following the rules, even as he said that next time he would go for more.
In the afternoon, it was time to color eggs. Kai looks forward to it, and had a hard time waiting until we were all ready. But once he had colored about eight or nine eggs, he had had enough and it was up to my wife and I to finish coloring the three dozen eggs we had.
But it was a fun time.
This morning, Kai looked forward to seeing what the Easter Bunny brought. He enjoyed his Easter basket somewhat, but as he doesn’t eat chocolate or most candy, the Easter treats are not all that exciting for him.
It looks like a nice day out. We hope you are enjoying your Easter Sunday.
Saturday, April 7, 2012
Our Passover
As expected, our son’s excitement over Passover increased as the week went on.
Yesterday morning, as soon as he awoke, Kai wanted to read his book on the history of the alphabet. I think he thought of it on this morning because the Hebrew alphabet is an early precursor to our modern alphabet. After we read the book, Kai got his set of magnetic Hebrew letters and brought them to the breakfast table.
There, Kai reminded us that as it was Passover, we could not eat regular bread, and that we had to have unleavened bread instead. He was in great spirits throughout breakfast with his Hebrew letters, gluten-free matzo, and his favorite children’s dvd about Passover.
After breakfast, he finished making a set of the Ten Plagues hand puppets. He is getting quite good at crafts, doing most of this on his own.
Of course, the highlight of the day was going over to his uncle and aunt’s house for the Seder.
Kai was really revved up, sometimes just a tad too much as he almost tried to take over leading the Seder from his grandfather at times. But mostly he followed along nicely, and was very cute with his enthusiasm.
Here he is with Mom drinking the first cup of wine (grape juice)…
He also read very nicely his part of the Four Questions.
And, when we got to the part about the Ten Plagues, Kai was ready to demo them all with his hand puppets.
It was a very nice ceremony and the food was wonderful.
Perhaps the most interesting part came afterward. Kai’s young cousins, ages 9 and 11, invited him to play a game of Mousetrap, which they knew he liked. When they spoke to him, he answered. They actually had bits of back-and-forth conversation. It wasn’t the same as the conversation the two cousins had between them, but it was a giant leap from his abilities to converse with kids before.
Today, our Passover celebration continues. Kai enjoyed it so much that he wants to do the Seder one more time. This one will be just ourselves at lunchtime.
Then, on to coloring Easter eggs!
Yesterday morning, as soon as he awoke, Kai wanted to read his book on the history of the alphabet. I think he thought of it on this morning because the Hebrew alphabet is an early precursor to our modern alphabet. After we read the book, Kai got his set of magnetic Hebrew letters and brought them to the breakfast table.
There, Kai reminded us that as it was Passover, we could not eat regular bread, and that we had to have unleavened bread instead. He was in great spirits throughout breakfast with his Hebrew letters, gluten-free matzo, and his favorite children’s dvd about Passover.
After breakfast, he finished making a set of the Ten Plagues hand puppets. He is getting quite good at crafts, doing most of this on his own.
Of course, the highlight of the day was going over to his uncle and aunt’s house for the Seder.
Kai was really revved up, sometimes just a tad too much as he almost tried to take over leading the Seder from his grandfather at times. But mostly he followed along nicely, and was very cute with his enthusiasm.
Here he is with Mom drinking the first cup of wine (grape juice)…
He also read very nicely his part of the Four Questions.
And, when we got to the part about the Ten Plagues, Kai was ready to demo them all with his hand puppets.
It was a very nice ceremony and the food was wonderful.
Perhaps the most interesting part came afterward. Kai’s young cousins, ages 9 and 11, invited him to play a game of Mousetrap, which they knew he liked. When they spoke to him, he answered. They actually had bits of back-and-forth conversation. It wasn’t the same as the conversation the two cousins had between them, but it was a giant leap from his abilities to converse with kids before.
Today, our Passover celebration continues. Kai enjoyed it so much that he wants to do the Seder one more time. This one will be just ourselves at lunchtime.
Then, on to coloring Easter eggs!
Tuesday, April 3, 2012
Getting Excited for the Passover Seder
Passover doesn’t seem like the kind of holiday that would excite most kids. But, for our son, it is a glorious time.
This week’s column in the Patch takes a look at Kai’s excitement over Passover Seders. Click here to read all about it.
This week’s column in the Patch takes a look at Kai’s excitement over Passover Seders. Click here to read all about it.
Sunday, April 1, 2012
Miniature Golf
After a week of visiting grandparents, followed by a visit from my sister, brother-in-law and their dog, things got awfully quiet when our houseguests left. It always feels like a letdown when the special activities are over and things are back to the usual routine.
But we still one last day of Spring Break so we decided to take Kai to a miniature golf course that we had never been to before.
The place we went to had two different courses, and they were among the most unique we had ever played.
The first course had fun features such as a slide…
and a dune buggy right in the middle of the fairway.
The second course took us around the world, from Easter Island…
to the Eiffel Tower…
to the Serengeti…
and to Egypt.
On this Spring Break, we did not travel too far, at least not other than through the miniature golf course. We did not go to new, exotic locales. But we had fun, perhaps even more fun than had we gone on vacation. And what could be better than that?
But we still one last day of Spring Break so we decided to take Kai to a miniature golf course that we had never been to before.
The place we went to had two different courses, and they were among the most unique we had ever played.
The first course had fun features such as a slide…
and a dune buggy right in the middle of the fairway.
The second course took us around the world, from Easter Island…
to the Eiffel Tower…
to the Serengeti…
and to Egypt.
On this Spring Break, we did not travel too far, at least not other than through the miniature golf course. We did not go to new, exotic locales. But we had fun, perhaps even more fun than had we gone on vacation. And what could be better than that?
Labels:
miniature golf,
vacation
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