Friday, April 29, 2011

If the Royal Couple Had a Child With Autism

The world has a new princess today. She’s a beautiful bride. And, from all indications, she seems like quite a fine young woman who will represent her country well.

Seeing the young couple, I couldn’t help but feel a sense of optimism about the world this morning. It’s a silly feeling, I know, as nothing has really changed for the rest of us. But there’s something about a wedding that brings hope to all who are touched by it.

Though when my thoughts came back to the reality of my own life, I started to wonder, what would happen if the Royal Couple had a child with autism?

Forgive me if that offends any of you. On wedding days, we are not supposed to think such thoughts, are we? We are supposed to think only of ‘happily ever afters.’ After all, how many of you thought of the possibility of having a child with autism on your wedding day? Not many, I presume.

And yet, I can’t help but wonder what it might be like if Kate and William had to deal with the same challenges that we deal with every day.

With all of the paparazzi and media outlets these days, it would be difficult to maintain privacy. How awful would it be to deal with all of the emotions of learning about your child’s autism with the whole world watching? And think about reaction on all of the social networks. They would be abuzz with people commenting about every move. Everyone would be second-guessing diets and medications, therapies and treatments.

“Why are they doing Floortime and not ABA?” “Why are they wasting their time with that special diet?” “Why are they doing all of those quack treatments?”

But after the couple began to accept their circumstances, I wonder if they would embrace the opportunity to share with the world their experiences in raising a child with special needs? It certainly would build awareness better than any organized campaign ever could. A Royal Child With Autism would personalize the disability for those who have yet to experience it in their own lives. And then maybe, this still-hidden disability would not be as hidden.

Ah, but those thoughts are really for another day, right?

Best wishes to the Prince and his new bride. May you be happy together.

Thursday, April 28, 2011

Seeing Things Anew

It’s amazing what you can learn about your child by watching a videotape with a professional who points out things that you see with own eyes every day.

We had a meeting with our son’s psychotherapist the other day and she showed us video from a recent therapy session with Kai.

The session that we watched was one where the therapist and my son were doing a science experiment together. As the video started playing, the therapist was trying to get my son’s attention. She was reading him the instructions for the project and he paid no attention to her. He was goofing around and not listening. I know the feeling well.

After a little while, however, he became focused and ended up happily working on the project. How did that happen?

We watched a second time, but this time, instead of viewing it uninterrupted, the therapist paused it at several points along the way so that she could explain what she observed.

During the beginning of the session, when Kai did not appear to be following along, the therapist had given only verbal instructions. But, as soon as she began gesturing with her hands, he became clued in to her. She explained that Kai is a visual learner and that it is helpful to give visual cues in addition to the verbal ones.

As they began the science experiment, my son again appeared to lose focus. The therapist reached out her arm and lightly touched her hand to my son’s shoulder. She also brought her face into his line of sight as she spoke with him. He got back on task right away. He had needed a little visual reminder that she was talking and that he needed to listen to her.

Another time, she read his body language and could tell that he did not understand what he needed to do. She pointed at a particular object and he immediately caught on to what he needed to do.

It was illuminating to see all this.

There are many times when I am working with Kai on his homework, just to name one example, when he seems to lose focus. I get frustrated and may raise my voice. I realize now that, since he is such a visual learner, I need to give my son more visual cues, and that increasingly loud audio cues do not help the situation.

Seeing this also helped me better understand why my son had so much trouble learning in a regular classroom even though he is a bright kid.

The therapist went on to explain other situations where, by looking at Kai’s expressions and behaviors, we can see the cues he is giving off. Oftentimes, he will be communicating to us non-verbally because he does not yet know how to express what he is feeling.

For example, when he becomes disregulated when asked to do a more complex problem, he may be saying that the situation is too much for him and that he cannot take in all of the information.

We see things like this every day but until someone points it out, you sometimes don’t notice it.

We appreciated the feedback and will practice reading our son’s non-verbal cues and trying to be more visual with him.

Now if only we could record all of our interactions at home and have a professional analyze what else we can do.

Wednesday, April 27, 2011

Ping-Pong Versus the Periodic Table

It was an epic battle. Strength against strength. Body versus mind. Mom versus son. Ping-pong takes on the periodic table.

We were playing the table tennis return challenge on the Wii the other day. The game involves returning serves for as long as you can. If you return the ball successfully, you score one point, the next ball is served, and you keep going. But, one miss and your turn is over.

I was up first. I missed the very first ball. My score was zero.

Kai was next. He did better than me, which of course is not saying anything. But, at least he got his score into the teens.

Then it was Mom’s turn. Now, compared with teens, gamers, or anyone with a modest amount of coordination, none of us are really all that great at any of the Wii games. But my wife does pretty well at table tennis, at least by our meager standards.

My numbers-loving son gets excited when it’s Mom’s turn to do the return challenge as he knows he may see the score get pretty high. Sometimes, he counts along. And, that’s what he did this time.

Except that he didn’t count with numbers. He counted with elements.

Instead of one, two, three, he said, “hydrogen, helium, lithium” which, by atomic number, are the first three elements in the periodic table.

As my wife’s score got into the 20s, Kai got more excited. “Calcium, scandium, titanium!”

As the streak went on, Kai got progressively louder. “GALLIUM, GERMANIUM, ARSENIC!”

My wife started to get annoyed. “Kai, stop counting! You’re distracting me!”

I, however, was very amused. I was pretty sure that my son had not yet learned all 118 elements. Would my wife be able to keep her streak going until she got to the point where he would no longer be able to give the name of the element?

My wife’s score went past 50. “TIN, ANTIMONY, TELLURIUM, IODINE, XENON…”

I could see the tension on my wife’s face. The elements were getting to her.


At 69, she missed. Kai didn’t. “THULIUM!”

Elements had defeated ping-pong.

My son remains the undisputed lightweight champion of the periodic table.

Tuesday, April 26, 2011

Hole-y Earth Week T-Shirt

Our son’s school asked all students to wear green yesterday as part of the Earth Week activities they are having. The last time he wore green, for St. Patrick’s Day, Kai bit a big hole in the only green shirt he has. And so, we had to decide if we should get him a new one for Earth Week.

The truth is that we sometimes send our son to school in shirts that have holes in them. Does that make us bad parents?

When Kai gets upset, he bites. He has bitten me, but I am now pretty good at keeping his mouth away from my body. The staff at his school is, too. But that doesn’t mean he doesn’t try. And, when he can’t bite people, he still wants to bite something.

It is common for kids with autism to have sensory issues. Many crave oral stimulation and end up chewing on their clothing. In my son’s case, this tendency increases when he becomes disregulated. And when he is really upset, he doesn’t just chew; he bites with such fury that he often rips a hole right through his clothes.

We try to get him to chew on other things. When he starts to get agitated, we often give him gum. They do the same at school. We also have tried various sensory chew toys. Although they can work well, you have to remember to keep them with you at all times because you never know when you will need it. And when Kai is really mad, sometimes he will just throw it back at you when you offer it to him.

Similarly, we’ve tried Chewlery® which are chewable bracelets. The idea is that he can wear it and so it will be with him whenever he has the need to chew. But, he doesn’t seem to like having it on his wrist, so he takes it off. We’ve lost so many that it just doesn’t seem worth it.

As a result, many times he ends up biting a hole in his shirt.

If we were to throw out every shirt that had a hole in it, we would be replacing his wardrobe every few weeks or so. It just is not practical. And so, he often goes to school wearing a shirt with a hole in it.

With yesterday’s ‘wear green for Earth Week’ celebration, we had to decide whether to send him to school in non-green clothing, let him wear his old green shirt with the hole in it, or get him a new one. We decided to get him a new one.

He came home with a hole in it.

As is often the case, a change in the usual schedule may have thrown him off enough to get him upset.

As part of their Earth Week activities, the entire school had gathered to watch some videos about the environment. Just as it was to start, Kai started shouting that he was hungry. It was after lunch so there really should have been no reason for him to be hungry, let alone be shouting about it. I think the disruption to his routine overwhelmed him.

Of course, the staff had to escort him away as he was disrupting the movie for everyone. And, that just made him more upset.

Whenever he has to take a timeout at school, Kai expects everything to stop for him until he can return. But, of course, it doesn’t work that way. Class goes on without him, or, in this case, the movie started without him. As he was serving out his timeout, he got furious that he was missing out on the film. And his new shirt paid the consequences.

It is now a not-so-new looking shirt with a big hole in front.

We won’t throw it away, though. Hey, it’s Earth Week. We are just doing our part to recycle.

Monday, April 25, 2011

Easter Fun

These pictures say all there is to say about our weekend.

Okay, so the real story is that I do not have time to write anything today, but I think you’ll enjoy the pictures more than anything I would have written anyway.


Friday, April 22, 2011

Motivation or Coincidence?

Is it a coincidence that my son has put together three good weeks of school since we have been using element playing cards as incentive?

Yesterday, when Kai came home from school on this holiday-shortened week, we found out that he had again been honored as Student of the Week. That makes it twice in the past three weeks.

His good day yesterday earned him four more element cards – lead, tin, iron, and mercury. At this rate, we will run out of cards before the end of the school year.

Of course, I am thrilled that he is doing so well. But, the analytical side of me questions why the change compared with the previous two months when he seemed to have angry outbursts at school on a daily basis.

Is the motivation of earning the element cards really keeping his behavior in check? That would imply that even though so many of his outbursts seem impulsive, Kai actually could control his behavior if he really wanted to. I’d love for that to be the case, but I’m somewhat skeptical.

I am more inclined to believe that this period of good behavior has coincided with a time where there have been no unexpected changes at school to throw Kai off. Oftentimes, his school incidents occur when there is some divergence from the usual routine – a new TA, a special program, lining up in a different order. We haven’t heard of anything like that recently, so it may be that this has just been a less stressful time for him in that respect.

Perhaps there is another reason. Although we have made no changes recently, maybe his body is responding well to the biomedical treatments we are doing.

Whatever the case, I wish I could definitively identify the reason behind the positive change so that we would know what we are doing right, if anything.

But, in the absence of knowing for sure, we will keep our positive reinforcement program going for as long as it might be working. And so, if any of you are scientists, could you please discover a few more elements before we run out of cards? Thank you.

Thursday, April 21, 2011

How Much is Too Much?

Regular readers know that my son has an affinity for math and loves anything to do with numbers. His current passion has been to learn all of the elements on the periodic table.

Last night he discovered a video on YouTube that shows the order that each element was discovered. He spent the rest of his evening looking at the video, pausing it every second or so, and writing down the name of each element in the proper order. I’m sure it will be only a matter of days before he has it all memorized.

Yesterday, my wife and I met with the clinical psychologist who has been evaluating our son over the past several weeks. She gave us a preliminary overview of her findings. Not surprisingly, one of his strengths is that he has phenomenal math skills; “off the charts” was how she described it.

That is all well and good, but she also described Kai’s many areas of deficits. These include his abstract reasoning and problem solving skills, social comprehension and awareness, inflexibility, difficulty staying regulated, and high levels of anxiety, among others. And so, we know that he needs a lot of work in many different areas.

The challenge is finding some balance between maintaining his strengths while working on his weaknesses, fostering his special talents while boosting his deficits.

Knowing all of the elements of the periodic table will be of only limited value if he cannot do abstract reasoning. That could be the difference between getting a minimum wage job and becoming a scientist, for instance.

So, do we limit how often he can do things involving numbers? After all, every moment spent on numbers is a moment that he is not developing social awareness. Ideally, we can leverage his passion with numbers to work on the other skills that need work. But how? That is our challenge.

For one more evening, though, it was fun to see him cranking away at his numbers. Did you know that Zirconium was the 25th element discovered, in 1789?

Wednesday, April 20, 2011

Being Brave: Update

Last week I wrote about our son’s experience in getting his blood drawn for a blood test. Unlike previous times, he was brave. But the technician had trouble getting blood to flow out of his arm, and she had to stick him with the needle in a different spot. After three attempts, we gave up, leaving Kai upset about the whole experience.

Yesterday, my wife took him back to try again.

Last week was not the first time that professionals had trouble drawing Kai’s blood. It has happened several times before. We’ve been told that he has extraordinarily small veins. Having to be stuck with a needle multiple times each time he has this procedure has contributed to his fear of having his blood taken.

The only place we’ve had any success getting his blood with just one poke is the same clinic we went to last week, though with a different technician. So, rather than going to the nearby hospital where we’ve had no success, my wife made the one hour drive back up to the clinic in Wisconsin. The technician who had been successful in the past would be there this time.

I was surprised to find out that Kai again showed no fear at the clinic. My wife tells me that he cooperated beautifully, willingly sticking his arm on the table. It was the first time that he did not have to be restrained at all. And this time, they were able to get the blood flowing with just one poke. And though the flow slowed after a couple of vials, the technician did a few maneuvers and got it going again.

In the end, my son gave five vials of blood without shedding any tears. It is a sign that he is starting to grow up.

Tuesday, April 19, 2011

Passover, Pac-Man, Progress

Our son had a wonderful time at the family Seder last night.

Things got off to a good start when Kai thanked his Aunt Karolyn for inviting him. That he said it clearly enough for her to hear and understand him was especially nice. Things like that may be something that parents of typical kids can take for granted (then again, maybe not), but we really notice when Kai communicates well with others. He also happily greeted the other family members.

He couldn’t wait to get started with the Seder. I was a bit relieved to see the same Haggadah booklets on the table that he was familiar with from last year, the one that takes you through the Seder in 20 easy steps. I had some anxiety about Kai getting upset if a different booklet did not lay things out the exact same way.

As we got started, the other kids, and the adults, too, for that matter, wanted to go straight to step #16 – eating dinner. But, Kai, of course, was happy to go through all of the steps.

We took turns reading the Haggadah. Some of the steps were written in both Hebrew and English, though most of us read only the English parts. But when it was Kai’s turn to read the Four Questions, he insisted on reading both in English and Hebrew (which was shown in both Hebrew and Roman characters). I won’t vouch for his pronunciation, but his effort was outstanding.

When step #10, the Ten Plagues, was completed, Kai began singing Dayenu, the traditional song of Passover, which was step #11. The rest of us were happy to have that be a solo, and let Kai go on with his enthusiastic version.

He enjoyed eating his gluten-free matzo, and the charoset was his favorite food. As we settled into dinner, Kai was behaving remarkably well.

But, for my wife and I, no matter how well our son is behaving at the moment, we always have an inner nervousness that things will change. When Kai finished his meal before anyone else, my nervousness rose.

We hadn’t brought our portable dvd player or Kai’s element cards or anything else to keep him entertained. Being done with dinner, he said he wanted to watch tv. The television had been on when we arrived, but it was turned off when we began the Seder.

We told Kai that he would have to ask Aunt Karolyn if he could watch tv. She explained to him that it would stay off until everyone was finished with dinner but then he could watch. I was surprised that Kai seemed okay with that. A couple times he came back to the dinner table to check to see how much longer it would be before everyone was done eating, but he didn’t hover like a waiter who is hoping to turn over a table.

When dinner was over, he politely asked for the television to be turned on. Though, he really didn’t watch much of it. He was more interested in taking turns playing games on his cousin’s iPhone and iPod.

This boy, who hates to wait, waited nicely for his turn while his cousins played. This boy, who usually doesn’t want to play electronic games, as he prefers to watch Mom or Dad play instead, wanted to play the games on the iPod.

He was especially enthralled with Pac-Man. I hadn’t played Pac-Man since I was in college but it was funny to see that it was still addictively fun for this new generation of kids.

After that, it was time to leave. We all had had a wonderful time.

Later in the evening, my wife recalled how Kai had behaved when we had gone to Karolyn’s house for Passover when he was four years old. He couldn’t be left alone for one second. He didn’t interact with anyone. He wouldn’t be happy unless he was watching a dvd.

And, so, we realize that, despite our day-to-day frustrations, he has come a long way. He is making a lot of progress.

The word "Dayenu" means approximately "it would have been enough for us.” Having a pleasant evening with family would have been enough for us. Seeing our son’s remarkable progress makes us have even greater appreciation.

Monday, April 18, 2011

Anticipating Passover

You can get a good idea of what our weekend was like by seeing the books and dvd my son picked out at the library this weekend:
  • The Elements: Hydrogen 
  • A Child's Picture Hebrew Dictionary 
  • A Seder 
  • Chanuka and Passover at Bubbe's (DVD)
    The upcoming arrival of Passover had Kai excited all weekend. He was still into the elements, but, for one weekend, his passions were shared with thoughts of Passover.

    Last year was the first time that he understood, at least a little bit, of what a Seder is about. He was enthralled with the entire ritual. I think he was hooked from the time he saw Bubbe’s booklet that gave the “20 easy steps” for a family Seder. The Seder plate, with its six symbolic foods, also fascinated him.

    We are not able to make it to Bubbe’s house this year so she sent us her Seder plate, the booklets, and the toy representation of the ten plagues.

    From our Saturday trip to the library, Kai was revved up about Passover once again. He spent much of the weekend watching and re-watching the dvd where muppet-like characters learn about Passover. He insisted that either Mom or I sit with him so that he could teach us about Passover, too.

    On Sunday morning, he told Mom that he wanted to go to the grocery store so that he could help her buy the foods for the Seder plate. When they got back, he wanted to set up the plate and eat some of the food. I tried to tell him that it wouldn’t be Passover until Monday night, but eventually decided that there was no harm in letting him try some of the foods ahead of time. Of course, being Kai, he spent much of the rest of the day asking us over and over which item on the Seder plate is our favorite.

    This was to be the first Seder that we would do on our own, which we likely would not have planned if not for Kai’s passionate interest. My wife was happy to have found all of the necessary food items, including gluten-free matzos. Later, however, we got a call from Kai’s aunt, inviting us over. It will be nice to celebrate this holiday with family beyond our immediate small group.

    Last night, after Kai went to bed, my wife and I were discussing our son’s interest in Passover. It doesn’t seem like the kind of holiday that would excite most kids. There are no presents like Christmas or Hanukkah or birthdays. There is no dressing up and collecting candy like with Halloween. There are no parades or fireworks like the Fourth of July.

    But, for Kai, it is glorious.

    There are numbers: 4 cups of wine (or grape juice, as the case may be); 10 plagues; 4 questions.

    There is the order of the Seder plate with each item in its proper place.

    There is structure in the ceremony, from the drinking of the wine, to dipping a vegetable in salt water, to reading the text of the Haggadah.

    And there is the story behind all of it, the freeing of the Jews from slavery in ancient Egypt. The muppet version, at least, is so fascinating for Kai.

    And so, I realize, that if my son does not become a scientist, perhaps his calling is as a rabbi.

    Happy Pesach, everyone.

    Friday, April 15, 2011

    Sodium, Jack of Spades

    We have tried various incentive programs in an attempt to encourage good, safe behavior for our son at school. We’ve had some successes, but have found that the reward has to be changed every now and then to keep Kai motivated.

    For the few weeks prior to Spring Break, his reward was die-cast NASCAR miniatures. The week we introduced that, he was very excited and I think it helped to motivate him to have a good week at school. But, after earning his first car, his interest in NASCAR waned and his motivation seemed low after that.

    With Kai’s newfound obsession with the periodic table, we found a new reward for him – element playing cards! The cards are actually a double deck of playing cards with the name of an element, and corresponding information, on each card. Each day, depending on whether he had safe behaviors and how well he did on his point sheet at school, he can earn up to four cards.

    Since we started this latest program, he has put together his best two consecutive weeks in nearly three months. Today, he came home with another 100% score for the day. That earned four more element cards – silicon, sulfer, chlorine, and argon for those of you keeping score at home.

    How long will this keep him motivated? His interest in elements seems far stronger than his interest in NASCAR was. My guess is that he will want all of the cards so this has the potential to keep him going for more than another month, close to the end of the school year.

    Will we go crazy by then? Maybe. But, if it helps to keep our son motivated for school, it will be worth it.

    Thursday, April 14, 2011

    Thinking About the Unthinkable

    As parents, it is something we really don’t want to think about. But, we should. What would happen to our child if something happens to us?

    My wife and I went to get a heart scan the other day. We went to a place that was having a “couples promotion” where they give you and your spouse a free heart scan just for coming in together. The catch is that you have to sit and listen to their pitch about the other services they offer which include a variety of preventative medicine techniques including a bone density scan, lung scan, virtual colonoscopy, and full body scan.

    In our area, this company is well known among those who listen to AM radio as their commercials run quite frequently. The ads always feature a man in seemingly good health who gets a heart scan at his wife’s behest. Sure enough, the scan reveals a condition that could have led to a heart attack if not treated right away.

    In their pitch to us, they said that we could have a full body scan that day if we signed up for their 10-year membership for an extra low fee. With this preventative health package, we could get the scans we need that may reveal cancer and other potential problems that often are not detected until it is too late.

    I’m not usually one to respond well to these types of pitches. But, since I became a family man, I’ve accepted that taking care of my health is an important part of my responsibility to my wife and son. Knowing that my son has autism has only strengthened that commitment to maintaining good health.

    Over the past few months, my wife and I have been thinking about our wills, and discussing what would happen to Kai in the event that both of us passed away. Who would we entrust with the responsibility to take care of our son in our absence? This is an extremely difficult question for any parent; it is a particularly important one for parents of a child with special needs who may need support long after most other kids become independent.

    Unfortunately, we have yet to come up with a great answer.

    Kai has wonderful grandparents, but it wouldn’t be fair to think that they could take on daily care of a child that we barely have enough energy to keep us with ourselves.

    Many folks think of siblings for these situations. Unfortunately, that is not ideal for us. My wife has no brothers or sisters. And, my only sister is pondering retirement with her kids finishing college soon; it would be asking a lot for them to take on a young child with autism who would take their lives in a totally different direction.

    We have other relatives who are younger and live closer, but they seem very busy with their own lives and haven’t gotten to know Kai very well.

    We have even considered non-relatives. For a child like Kai, perhaps a great therapist or teacher would be the best guardian. Or, similarly, another family that has experience raising an autistic child might be suitable. But, it is hard to think about asking someone outside your own family to possibly take on what may be a huge burden for them.

    Sometimes families that have older kids often have some expectation, stated or not, that these older kids would take care of their younger or special needs siblings if need be. But, as Kai is an only child, that is not an option for us.

    And so, we continue to think about our options. Perhaps we just need to trust that someone will step up and do right by our son if the occasion arises.

    But, in the meantime, my wife and I are thinking that we need to keep ourselves as healthy as we can for as long as we can.

    We had the body scans done right away, and already received the results for our heart checks – great scores for both of us. Now we are awaiting the other results.

    There are no guarantees when it comes to health. But, you do what you can. Especially when your son is depending on you.

    Wednesday, April 13, 2011

    Beach Day, Sick Day

    Sunday was the first time that we had really nice, warm weather here in the Chicago area this year, and my son wanted to go to the beach. Kai loves the feel of the sand and the water and so, even though I’ve not always been a big fan of going to the beach, we go quite often with him.

    On this day, the air temperature was in the 80s, but the water temperature felt like it was about 33°. One quick step in the water was enough for me and my wife. But, Kai loved it. He was constantly going in and splashing around. I was thinking that he is part penguin the way he tolerated the cold water.

    But then, he started to get a little cough on Monday evening that turned a bit more persistent by early Tuesday morning. Do penguins catch colds?

    Anyway, with his little cough, we thought it best to keep him home from school yesterday.

    For most kids, sick days off from school are spent lounging around watching tv or taking naps. But our son rarely does things the way most kids do.

    With Kai, being home meant more time for thinking about elements. He wanted to play his new element game. He wanted to label the stones he brought home from the beach with the names of different elements. He was having a grand time.

    In fact, after about two hours, he didn’t seem sick at all. His cough had stopped. He was hyperactive. He was chatting away.

    Unfortunately, the better my son seemed, the sicker my wife got.

    I don’t think that she caught our son’s cold. I think it was just the stress of entertaining him at home on a school day. After all, how much talk of elements is one person expected to take?

    And so, it fell to me to keep him occupied for the rest of the day. I was able to get a bit of work done while he filled a calendar with each state’s “birthday,” the date they became part of the United States.

    After that, though, I was out of luck. He bombarded me with talk about the elements. For instance, he asked me what my favorite lanthanide is, and then we watched the Element Song on YouTube and tried to pause it every time a lanthanide was mentioned. We even discovered a different element song on YouTube, this one set to Billy Joel’s “We Didn’t Start the Fire.”

    Today, he is back in school. I’m glad. I don’t think I would have made it through one more sick day.

    Tuesday, April 12, 2011

    Brave, For What?

    Yesterday, we had our regular visit to our son’s DAN (Defeat Autism Now!) doctor. On some of these visits, Kai has to have his blood drawn for various tests that need to be done. Yesterday was one of those visits.

    Kai absolutely hates being stuck with a needle and having his blood taken. In the past, those occasions have been among my most unpleasant experiences. Kai screams and cries and moves around, resisting as hard as he can. I feel like I am contributing to his torture as I hold him down and try to keep him still while the nurse attempts to stick him and get the blood.

    Last fall, my wife and I took Kai with us when we went to have our own blood drawn. We wanted to set a good example for him to show him how quickly and painlessly the whole process can go when you don’t resist. He was really interested in watching us go through the procedure, and I was hopeful that our lesson resonated with him.

    Yesterday was the first time he had to get his blood drawn since then. I reminded him about how Mom and I did not scream. We did not feel pain because we did not make a fuss, I told him.

    When we got to the clinic, he was nervous about going into the room where the blood would be drawn. I reassured him again that it would all go well if he cooperated.

    He resisted a little bit, but not like before. When it came time for the nurse to prepare him, he merely asked questions and did not cry. When she stuck him, he did not scream. I was surprised, and very proud, about how brave he was.

    Now, you are probably all smiling about how heart-warming this story is and what a happy ending it turned out to be.

    Unfortunately, this isn’t the end of the story.

    As legendary American radio broadcaster Paul Harvey would have said, “and now, the rest of the story.”

    The nurse was unable to draw blood from the first vein she tried so she changed arms and stuck him again. Kai became a little more scared and began to resist more, but still not as much as he had done in the past.

    Unfortunately, this second attempt also failed to draw blood.

    So, the nurse tried once more, this time lower down near the hand. Now Kai was really resisting. He was screaming and crying, saying that it was hurting him and that he wanted to go home. He said some mean words to the nurse.

    The nurse tried to maneuver the needle but nothing she did could get the blood flowing. With every second that passed, Kai’s screams grew louder. And so, not finding success, we gave up for the day.

    Kai will have to go back again next week for another attempt. We scheduled the appointment for a time when a different, more experienced, nurse will be present.

    As a dad, I feel like I let my son down. I told him that if he were brave and cooperated nicely, the procedure would go quickly and with little pain. Kai was all that and more, and yet, the process ended up getting drawn out and he felt a lot of pain, at least in his mind.

    And so, I’m frustrated. What is the lesson he learned here? That having your blood taken really is scary? That grown ups will tell you something to trick you? That Dad was wrong about blood thing so what else is he wrong about?

    After the no-blood ordeal was over, we met with the doctor. I sat with Kai so that my wife could focus on speaking with the doc. Kai asked me to massage his arm. It took quite some time, but he finally stopped crying and saying that he wanted to go home. When he seemed calm, I tried to stop massaging his arm. But, whenever I stopped, he asked me to continue.

    I realized that I wasn’t so much massaging the physical pain out, but rubbing away the emotional scars. But I don’t know if a little massage will rub out the memories of how Dad told him that all will be okay, and it wasn’t.

    Monday, April 11, 2011

    Our Periodic Weekend Fun

    My son had a fun weekend. Well, by his standards anyway. It was filled with elements.

    It started when he got home from school on Friday and couldn’t wait for us to open up his backpack. That was a sign that he had done well at school that day. On days where he’s had an incident, he is reluctant to let us see the point sheet that his school sends home every day. But, on Friday, he was anxious for us to see how he had done.

    Sure enough, he had a great day. He had gotten a 100%, which is very rare for him. And not only that, he was recognized as both the Student of the Week and P.E. Student of the Week at the weekly school community meeting. It was a triple play in terms of great feedback.

    Over the past couple months, with Kai having so many issues at school, we have been trying positive reinforcement to reward good behaviors at school. So, on this extra special day, my wife gave him the best reward he could imagine: a periodic table game.

    The game, called Periodic Quest™, comes with 118 cards, one for each element, and a game board of the periodic table. Each card has the name of an element, its atomic symbol, atomic weight, and other information such as boiling point, melting point, density, and whether it is radioactive or not, among other things.

    You can play several versions of the game, including some that involve forming compounds out of the elements, but we started with a beginner version where you move around the periodic table and collect as many elements as you can.

    Kai was in heaven with all the element cards. Before this, he was frequently asking us what our favorite elements were. Now, with all of these cards, he was even more relentless with his questioning. “Which is your favorite element that starts with the letter ‘P’?” “Do you like boiling point better than melting point?” “Which element has the highest melting point?”

    When we played the game, we found out how many of the elements he already knew. My wife and I would roll the dice, move our marker, and then struggle to figure out which element the symbol stood for. Kai, on the other hand, would usually quickly just call out the name. He is well on his way to learning the name, atomic symbol, and atomic weight of all 118 elements. Hopefully this knowledge will have more practical use for him one day than some of the other information he has collected, like the order in which the 50 states entered the U.S.

    Yesterday, the 100th day of the year for those of you who do not have a personal day-counter at home, Kai’s element glow reached a new level: He discovered a Japanese version of the element song on YouTube.

    He watched and listened to it over and over. As I watched it with him, I, too, found it strangely addicting. And so, if you want to get a taste of how weekends are at our house, give a listen to this song. But, be forewarned, you may find it to be hypnotic.

    Friday, April 8, 2011

    Doesn’t Look Like Autism

    I don’t know if I should be happy or mad when people say that my son doesn’t look like he has autism.

    On one hand, I suppose it’s a good thing. After all, for a time after he was diagnosed, I don’t think too many people would have made such a remark. Back then, he didn’t speak or make eye contact so his autism was more readily apparent. Nowadays, he can be quite the chatterbox – though usually just when talking about elements or numbers – and because he doesn’t show some of the other stereotypical signs of autism, he can seem like a typical kid at times.

    But, that is true of many kids on the spectrum. And so, autism is often an invisible disability. And it makes me upset when people don’t realize it, as if autism has to “look” like a certain way.

    But, about the time I’m jumping on my high horse and expressing frustration over others’ insensitivities, I realize that I, too, sometimes don’t see the autism in my own son.

    Take last night for instance. We were having a great evening. I was helping him with his homework and he was doing it nicely. All was well.

    But then I discovered a mistake on one of his math problems. I suggested that he check his work. He started to get frustrated. Without just telling him the answer, I tried to explain where he went wrong and what he needed to look for.

    He didn’t seem to pay any attention to me. I tried to get his attention. He didn’t respond. His mind was wandering off elsewhere. After awhile, I got frustrated. He got upset. I ended up yelling at him to listen to me. He ended up biting a hole through the sleeve of his shirt.

    If his autism was more apparent, perhaps I may have been more patient with him. But sometimes he seems so much like a typical kid that I, in that moment, forget about his autism. I forget that it might be contributing to his inability to focus or stay on task. I forget that I need to be patient and perhaps take a different approach.

    And so, I’m not going to throw stones at others who don’t see or understand my son’s autism. I need to do a better job of that myself first.

    Thursday, April 7, 2011

    A Song in My Head

    Do you know how when you hear a song you sometimes associate it with something completely unrelated to what the song is about? That’s what I’ve been doing lately.

    When we were in New Mexico last week, in addition to letting our son watch movies on the portable dvd player, he also listened to tons of music on our rental car’s cd player. Most of the songs were about the alphabet.

    Now, I keep hearing them in my head and I think of the Sandia Mountains. That’s not a bad thing because I’m having trouble accepting the notion that our vacation is over and we are back here in the dreary Midwest.

    One of my favorite “New Mexico songs” is by They Might Be Giants, a band that has done songs for both children and grownups. Just close your eyes and give it a listen. Can you see the sunshine and mountains?

    Wednesday, April 6, 2011

    Back to Reality

    Vacation is over and we are back to our daily routine – arguments over homework, whining about breakfast, and googling the dates that various elements were discovered. Can we go back to New Mexico?

    I did not realize how stress-free I felt last week until it all started settling back in during the past couple of days. Now it feels like my relaxed state is fading from my body like an old photograph that blurs over time.

    My son actually seems to be handling the transition back to real life better than I am. After a so-so first day of school, he had a very good day yesterday.

    And he doesn’t seem to miss being on vacation. Maybe that is because he’s been able to continue to do what was his personal highlight of our trip – watching YouTube videos of pool trick shots, which we first did while enduring our long delay at the airport coming home. These days, he’s gone from asking what our eighth favorite element is to asking which pool ball is our sixth favorite.

    Well, while I ponder that question, I’ll ask you another one: is it too soon to go on another vacation?

    Tuesday, April 5, 2011

    An Unconventional Vacation Destination Turns Enchanting

    New Mexico is known as the “land of enchantment.” But it is a rather unconventional Spring Break vacation destination for a family with a seven year old child. On the other hand, our son is unconventional.

    Many of the most popular vacation spots don’t work so well for us precisely because they are so popular. Crowds and autism often do not mix well. We have learned to avoid places where Kai would have to wait long for a turn on a ride, or places that may overwhelm him.

    Disney World was a wonderful exception in that they make accommodations for kids with autism. But, we did Disney last year and wanted to do something different this year.

    My wife had never been to New Mexico, and I wanted her to see another part of our beautiful, vast country.

    We found that this is a great time of year to travel to New Mexico. Since it is not a popular choice for Spring Break, we got a bargain rate on our hotel. Billed in the guidebooks as a place to stay when you really want to splurge, we got a rate that was cheaper than what we paid at a nondescript Red Roof Inn in a small town in Ohio last November. Though, to get the special rate, we did have to book ahead without the possibility of canceling or changing our reservation.

    Coming from the Midwest, where temperatures are still commonly in the 30s or 40s during the day, the mid-60s afternoon temperatures we had in New Mexico was wonderful, as was the abundant sunshine. Personally, I’m not a fan of hot and humid weather, so I found the conditions we had on this trip to be near perfect.

    Perhaps the best benefit of the traveling to New Mexico this time of year is that there were no crowds anywhere we went. We never had to wait long for tables at restaurants, which is always important for us. And, we were able to see all the sights easily. I could not imagine Kai having the patience to wait long for a turn to climb up the ladders to the cliff dwellings at Bandelier National Monument, or to climb down into the kiva at Jemez State Monument. Going now, that was never an issue.

    If you like southwestern cuisine, there are great choices for dining out. I had enchiladas at three restaurants, all prepared differently, and all delicious. We also had burgers with green chiles, huevos rancheros, and other regional favorites. And for a child with autism, there is no better restaurant to go to than one that brings chips and salsa to the table right away.

    I know, you are thinking that is all well and good, but is there really anything to do there with your kids? Well, I think that depends on what you are looking for. Disney World it is not.

    But if you want to introduce your kids to a beautiful area of the country, and give them a taste of our continent’s history, then there is plenty to do.

    There are the gorgeous landscapes in the mountains, mesas, and gorges. There are the archeological sites at places like Bandelier National Monument. You can visit the Native American community of Taos Pueblo. Or go to quaint villages along the High Road to Taos or the Turquoise Trail. Our son may not have been as excited as he was seeing the 3D movies at Disney World, but he enjoyed the trip quite a bit. And hopefully, this experience adds to his growth as a person who has seen more than just the world of his everyday life.

    We actually ended up wishing we had a longer stay as we did not see everything we wanted to. We ran out of time and never made it up the Sandia Tramway, the world’s longest passenger tramway. We only got a small taste of Santa Fe. We wished that we had visited the Georgia O’Keeffe Museum.

    A return visit to New Mexico may be in our future. It could become our retirement destination now that New Mexico has risen to the top of the list of places my wife wants live. Or maybe, we will all move there when our son becomes a scientist at the Los Alamos National Laboratory.

    Now that would really be enchanting.

    To read about our trip from the beginning, go to the first post.

    Photos of our trip can be found on our Facebook page.

    Monday, April 4, 2011

    New Mexico, Day 5: Delayed Flight, Going Home Blues

    The last day of a vacation is bittersweet. You try to enjoy it to the end, but it’s not fun packing up, going to the airport, and thinking about resuming your everyday life.

    On our last morning in New Mexico, we took a hike on one of the peaceful trails outside of our hotel. It was a beautiful sunny morning, just like we had every day. We paused at the banks of the Rio Grande to take in the Sandia Mountains for the last time. The thought of leaving gorgeous New Mexico behind and going back to our cloudy, cold home was not a happy one.

    We wanted to have one more New Mexican meal so we made our way over to a restaurant most politely described as an authentic place that the locals love. When we saw that the waiter we had a couple nights earlier from another restaurant came in here to eat, we knew that the food had to be good.

    My wife and I had Huevos Rancheros, which my wife had never had it before. It was something she had to have before we left, and we picked a good spot to try it. It was spicy and full of flavor. Kai had a rolled taco, another first for us.

    After breakfast, we went to the airport, returned our rental car, and went to check in. We to got to the terminal more than 90 minutes before our scheduled flight time only to discover that our flight was delayed by two hours. Uh, oh, this will be bad.

    A boy who hates waiting, a delayed flight: A recipe for disaster.

    I got out Kai’s favorite storybook of the moment and read it as slowly as I could while also drawing out my most silly persona. Kai laughed and laughed and was in a good mood. But, when I finished, only 20 minutes had elapsed. Still many more to go.

    And then, we heard that the wait would be even longer. The plane that was supposed to take us home was broken. They would have to get another one. It would be a four-hour delay.

    It was time to turn to newer technology. I turned on my laptop and accessed the internet through the free wifi the airport offered. Through the miracle of YouTube, I found a way to keep my son entertained. Of all things, Kai wanted to see pictures of pool balls, because of the numbers, of course. And that led to finding YouTube videos of pool trick shots.

    Kai was engrossed. But, for how long?

    I was thankful that I had upgraded to a new laptop just before our trip. My old, outdated one would never have had the battery life to last for the duration of our wait.

    From the pool shot videos, we somehow transitioned over to videos of Wii games that people recorded. Who puts this stuff on YouTube? Who watches it? And yet, with Kai enjoying every one of them, I was thankful that they were there.

    The boy who had constantly whined about the time it took to drive to Taos just a few days earlier did not complain one bit about the four-hour delay at the airport.

    Eventually, we made it onto the plane and flew home. We arrived at our house well after Kai’s usual bedtime, but he still was full of energy. He wanted to play the Wii games we had watched on YouTube. My wife and I, on the other hand, were exhausted and couldn’t wait to go to bed.

    Now we are home. The cold and grey weather is like a slap in our faces after all the sunshine we had in New Mexico. Post-vacation blues is setting in.

    I open up my digital photo album and take a look at the pictures of our trip. In my most optimistic moments, I couldn’t have dreamed that we would see so many interesting places and that it would all go so well overall. We had a truly wonderful time. And, with that, my mood brightens.

    Tomorrow: Final thoughts

    To read about our trip from the beginning, go to the first post.

    Photos of our trip can be found on our Facebook page.

    Sunday, April 3, 2011

    New Mexico, Day 4: Tunnels, and Ladders, and Salsa

    On our last full day in New Mexico, my wife and I wanted to visit the preserved ruins of the cliff dwellings at Bandelier National Monument. At the hotel, the man who drives guests out to their cars on the shuttle bus suggested that we take a different route than we were originally planning. He pointed us toward the Jemez Mountains.

    We have seen many interesting and beautiful sights in New Mexico. I am coming to understand that the term ‘scenic route’ may be redundant as there is beauty in most every place we go. But, our latest drive topped them all.

    We went to a place called the Gilman Tunnels. Blasted out of the rocks along the gorge of the Rio Guadalupe River, the tunnels were created in the 1920s for logging trains. The trains have long since stopped running, and car traffic to the tunnels is extremely sparse with its remote location and the fact that it is not mentioned in any of the guidebooks we have.
    The drive to get to the tunnels is spectacular. And of all the natural beauty we have seen on this trip, this is the one that excited Kai the most. Our son loves tunnels of all kinds, and to see some on the side of a mountain got him revved up. He couldn’t wait to get out of the car and walk into the tunnels to see them up close.

    After the tunnels, we stopped at Jemez State Monument, the site of a former Pueblo Indian village and Spanish Mission. As with our visit to the Taos Pueblo, a trail guide was the key to our being able to see entire place. Kai led us methodically from points 1 to 24, with our highlight being number 4, an example of a Kiva, an underground home of the Pueblos.

    Making these stops along the way, we didn’t arrive at our original destination of Bandalier until early afternoon. But Kai didn’t pester us with questions about when we would get there, at least not as much as when we made the drive to Taos a couple days earlier. Though he was thinking about the periodic table again and kept asking us what our fourth, fifth, sixth, seventh, and eighth favorite elements were.

    At Bandalier, we had a quick lunch and then hiked the main loop trail. Fortunately, Bandelier also marks their trails with numbers. We saw the stone wall remains of the ancestral Pueblos’ village plaza. The highlight of the walk, though, was seeing the cave homes dug out of the cliff walls. You have to climb on ladders to go inside these dwellings. We saw some young children having difficulty, but Kai, surprisingly, eagerly sprang up each one.

    In the evening, we went out for one last New Mexican dinner. Overall, Kai did remarkably well in the restaurants we went to on the trip. Well, there was one time in Taos where he started yelling that it was a bad restaurant because their salsa was too spicy for his liking. But, otherwise, he did well.

    I must say that Mexican/New Mexican restaurants are becoming my favorite places to eat out with Kai. At most restaurants, the wait for our food is always an issue. But, at these places, the immediate delivery of chips and salsa to the table keeps Kai occupied and happy.

    At this particular restaurant, El Pinto, they sell jars of salsa and taco sauce to take home. Kai was intently eyeing them as we were waiting for our table. When we finished dinner and were about to leave, the hostess came up to us and gave us a free jar of the salsa to bring home because Kai had been so interested in it earlier.

    Tunnels in gorges, ladders to cave homes, and free salsa; it was an A+ day.

    Tomorrow: Going home

    To read about our trip from the beginning, go to the first post.

    Photos of our trip can be found on our Facebook page.

    Saturday, April 2, 2011

    New Mexico, Day 3: Rocky Road Leads to Tinkertown

    After driving all the way up to Taos and back, we thought we would follow it up with a more relaxing day.

    We decided on following the road from Albuquerque to Santa Fe known as the Turquoise Trail. It gets its name from the turquoise mines that once were abundant in the area, but is now known for its beautiful vistas, and revived ghost towns that are home to artists and craftspeople.

    From our hotel, we had two choices for getting to the beginning of the Trail. We could drive on benign interstate highways that take a roundabout route. Or, we could take the direct route: a one-lane dirt road over the Sandia Mountains. I opted for the short cut.

    You will have to take my word that it was a spectacularly beautiful drive. I say that because my wife and son will not be able to confirm that for you. They were too scared to notice how beautiful the scenery was.

    Kai is easily upset, and the constant bump bump bump of the road that, in actuality, was more rocky than dirt, was too much for him. He started screaming that he wanted to go home.

    My wife, meanwhile, is understandably nervous about flat tires after getting several the past few winters while driving on our pothole-ridden streets at home. As the tires on our rental car bumped over every rock in the road, I could see her tension mounting. Kai’s loud expressions that “we are going to die” only increased her anxiety and seemed to vocalize her fears.

    As time went on, the dirt/rocky road seemed to go on forever. Just when we thought we were near the end, it started rising again to go over another peak. This “short cut” was taking longer than the roundabout way.

    Kai’s protests that “we are going to die” became “WE ARE DEAD!” My wife responded, “If you are dead, you can’t talk. Since you are screaming so loudly, you must still be alive.”

    Of course, you know that we did not die. We also did not get a flat tire. But, I did breathe a sigh of relief when we finally came to a paved road.

    Our first stop on the Turquoise Trail was a place called the Tinkertown Museum. When we arrived there, Kai was simultaneously still claiming to be dead, demanding to go back to the hotel, and proclaiming that I was a bad driver. He refused to go into the museum. I had just about given up hope when we finally got him to go in.

    His mood soon brightened.

    The Tinkertown Museum is unlike any place I had ever seen. Frommer’s guidebook describes it as “mostly a miniatures museum, featuring dollhouse-type exhibits of a mining town, circus, and other venues, with push buttons to make the characters move.” But a simple description doesn’t really do the place justice.

    The proprietor told us how her late husband spent 40 years collecting the artifacts and building the museum. The building itself is a sight, constructed with thousands of glass bottles, and other things including wagon wheels, horseshoes, and license plates (which were Kai’s favorites). The displays were nostalgic, charming, and just plain fun.

    The museum is a lasting tribute to the man who created it, a man who must have had the heart of a child and the talent of a visionary.

    Tinkertown turned all of our spirits around. We left there smiling, feeling good about the world.

    We enjoyed the drive down the Turquoise Trail. The scenery was beautiful and the little towns were quaint. The small town of Madrid, especially, had a nice little row of charming shops.

    At the end of the day, we had Kai work on his journal for school. He only wrote that he went to Tinkertown. But his picture was more descriptive. He made a crude drawing of three people lying next to a sign that read “Die Road.”

    Ah, the things that make a lasting impression on a child.

    Tomorrow: Another scenic route

    If you missed Day 2, click here.

    To read about our trip from the beginning, go to the first post.

    Photos of our trip can be found on our Facebook page.

    Friday, April 1, 2011

    New Mexico, Day 2: Culture, Beauty, Letters

    One of the main things my wife and I wanted to do on this trip to New Mexico was to take in some of the local history and culture. And so, on our second day, we took a road trip up to Taos to visit the Taos Pueblo, a Native American community comprised of multi-storied adobe buildings that have been continuously inhabited for over 1000 years.

    The drive up to Taos is beautiful. We took the route known as the “High Road to Taos,” a scenic road that winds through mountains, deserts, forests, small farms, and tiny villages.

    Taking the scenic route is nice, but the trip took almost four hours on the way up, including some missed turns and stops for pictures. And for our son, taking four hours to get somewhere is about three and a half hours too long. I tried to explain, “The trip is not just about getting to our destination; it is about enjoying the ride. Look at the beautiful scenery!” He responded that he already looked at the scenery and just wanted to get to Taos already.

    Still, the portable dvd player kept him occupied much of the time.

    I feel somewhat like a bad parent – here we are in New Mexico; he should be looking at the sights, not watching some video for the 700th time. But, this is one of those tradeoffs you make as a parent. You let your kid watch a movie so that you can enjoy the trip yourself.

    We finally got to the pueblo. We were worried that Kai would not have much interest and would want to leave right away. That worry dissipated as soon as we received a map that labeled every building with a letter from “A” to “W.”

    Kai made it our mission to visit every building. And that allowed us to see the entire pueblo, which was great.

    What wasn’t so great was that he kept asking, “What letter is this building?” And rather than taking in the building we were at, he wanted to rush over to the next letter.

    His preoccupation with the letters was embarrassing at times. We would be in a shop talking with the Native American proprietor and Kai would ask if this was building L or M. I wondered how this person felt about their community being reduced to alphabet letters.

    We tried to instill a bit of the culture of the place so that Kai wouldn’t simply think of everything as letters. “This is the church.” “This is a home.” “These are the racks where they dry meats.” I don’t know how much sunk in. For his Spring Break journal that he has to keep for school, he wrote that he went to Taos; but for the accompanying picture, all he drew were the letters A through W.

    Still, we were happy that we were able to see so much of the pueblo. And, some of the culture had to sink in, right?

    * * * * *

    After we had a late lunch in downtown Taos, we visited some art galleries and shops. In one shop, as I tried to wrangle Kai before he cost us thousands of dollars in damaged pottery, the owner came over to talk with him. No, she did not scold him. She engaged him in conversation. She talked to him about dinosaurs, and then explained the different gemstones to him.

    It turned out that in addition to running this shop, she is a special education teacher. Her daughter has autism. She had recognized that in Kai right away. She could see how bright he is, and spoke to us encouragingly about his future. We found a little treasure in that shop, and it had nothing to do with the jewelry they sold.

    * * * * *

    Afterward, we drove a few miles out of town to see the Rio Grande Gorge. At 650 feet over the Rio Grande River, it is one of the highest bridges in the United States, with a spectacular view that rivals that of any bridge in the world. We parked just prior to the bridge so that we could walk across. My wife made it about a quarter of the way before the height was too much for her and she turned back. Kai and I went all the way out to the center. He got a little scared when we were in the middle, but more from the strong winds than the height, I think. Still, he was able to smile long enough for a photo.

    We made the long drive back to the hotel after that, tired, but happy with all we had experienced.

    We are loving New Mexico.

    Tomorrow: Taking another scenic route

    If you missed part 1, check it out here.

    Photos of our trip can be found on our Facebook page.
    Related Posts Plugin for WordPress, Blogger...