Tuesday, August 31, 2010

Dating, With Autism

We’re several years away from having to worry about this with Kai, but it’s never too early to start thinking about what we will do when he wants to date.

‘Temple Grandin’ an Enthralling Look Into Autism

The HBO film Temple Grandin won seven Emmy Awards during this past Sunday’s ceremonies.  It is the true story of a woman who was diagnosed with autism at a young age because of her inability to speak or function socially like other children.  Temple Grandin grew up to earn a doctorate in animal science and become a university professor.  The film focuses on her experiences as a young woman that led to incredible advancements she made in the treatment of livestock.

My wife and I both loved this film.  It did an especially good job in helping us to understand how Grandin's mind, and perhaps our son’s too, works. Grandin sees the world in pictures, not in text. It also does a great job in illustrating how overstimulation in social situations is one of autism’s more devastating consequences.  As parents of a child with autism, it was inspiring to see that this woman with autism learned to function so well in “our” world even though she sees it in such a very different way. 

If I’m making this sound like a dry documentary, I have done the film a huge disservice.  This is as enthralling and entertaining a movie as we’ve seen all year.  Claire Danes gives an outstanding performance as Temple Grandin and is most deserving of her Emmy Award.  Go buy or rent this movie!

First Day of First Grade

The first day of school is now over and I’m sure you can feel the sigh of relief coming from my wife and I. Yes, Kai made it through Day 1 without a major incident.

Not that it was a perfect day. His teacher was nice enough to write us an email and fill us in on the details of his day. She reported that Kai got impatient with schedule delays and had trouble working with new staff. Change is difficult for him so adjusting to new TAs will probably take a bit of time.

As for schedule delays, that is another story. This weekend, my wife and I once again got to see firsthand how upset Kai gets when things are not on schedule. The thing is, on our camping trip, we did not even make a schedule and yet he got mad when we did not follow the schedule he had created in his mind. For instance, after going to the Alpine Slide, we returned to our campsite at 5:23. Kai was agitated that we were 23 minutes late in starting our campfire. Of course, we had not promised him any particular time that we would start one, but it was a minor crisis for him nonetheless. I can only imagine that if an actual schedule at school is delayed, it would be a huge deal in his mind.

Despite these issues, his teacher said that overall he did a nice job in readjusting to the school routine after the extended break. He seemed genuinely happy to return to school and see to his friends. He was excited about doing math and reading some new books.

He is now starting first grade, and it feels like this is the beginning of “real” school where academic learning really becomes important. As such, we feel more pressure for him to do well in school. I know many parents are happy to have their kids back in school after having them home all summer, but it is a time of mixed feelings for us, with the pressure of him doing well in school a constant weight on our minds.

But, knowing that his first day back was not a bad day makes us feel a bit better. It’s only one day, I know, but a good start to first grade.

Monday, August 30, 2010

Downhill Slide Before the Start of School

This was the last weekend before Kai goes back to school this morning so we wanted to do something special.  We went camping.

Last summer, we tried camping for the first time as a family.  I had gone a few times as a kid and always enjoyed it.  It was another one of those things that I did as a child that I wanted to pass along to my own family.

I was pretty sure that Kai would have fun as he will take any excuse to sleep in the same room/tent with Mom and Dad.  But, I wasn’t sure about how my wife would like it.  Actually, that is not true.  I knew she would hate it.  She hates bugs, mosquitoes especially, and getting dirty is not her thing, and let’s not even get into the whole public bathroom/shower thing.  There was no way she was going to like camping. 

It came as no surprise that Kai loved camping. He liked helping to set up the tent, making a campfire, and eating outside.  But, I think his favorite parts were just playing games in the tent with Mom and Dad, and getting to stay up late with us.

What did surprise me was that my wife did not hate it too much. I don’t think it was her favorite thing to do, but she had fun sharing in the experience as a family, and saw how much fun Kai had and even wanted to do it again for him.

So, on Friday, we packed up our car and drove out to the northwestern end of Illinois and set up camp in Mississippi Palisades State Park.

Now, getting ready to go camping with Kai is not easy.  In addition to packing up all the usual camping equipment and food, we also have to take Kai’s supplements and special GFCF (gluten-free/casein-free) foods, which take up a couple boxes by themselves.  Keeping on schedule with his supplements can be challenging enough at home, but it is more difficult when you’re working out of an ice chest and tent.  My intrepid wife deserves all of the credit for keeping so organized with that.

When we arrived at the park, we were surprised at how empty it was.  We had the pick of almost any campsite we wanted.

The mosquitoes were much worse this year.  As I sit here still scratching all the bites I got, I am reminded that it was almost more than I care to tolerate. 

But, Kai again had fun.  One of the highlights was making s’mores.  My wife had found the makings for GFCF s’mores.  (Kinnikinnick, Cracker Smoreable Grhm Wf, 8-Ounce (6 Pack)) Of course it’s always fun to roast marshmallows, but I was surprised how awesome the s'mores tasted.  I thought it tasted even better than ones made with regular graham crackers.

The first night, Kai was so excited that when it was time for bed, he kept talking and talking and would not fall asleep.  I was grateful that the campground was so empty and that our tent was far from the next nearest one.  Kai does not understand the concept of speaking in a soft voice, particularly when you really want him to be quiet, and he was quite the loud chatterbox that night.

On Saturday, we went for a hike in the morning and then drove over to nearby Chestnut Mountain ski resort in the afternoon. In the summer, they set up an Alpine Slide that is 2,050 feet long and runs the length of the longest ski hill.  It looks like a long, curvy toboggan run, and runs on parallel tracks so two sleds can race each other.  Riding on three-foot long sleds with wheels, you can go quite fast if you don’t apply the brakes. 

It’s funny that the boy who is afraid to ride on a bicycle with training wheels loves the Alpine Slide.  Kai kept yelling “Wow wee!” the entire way down and wanted to ride it again and again.  He rode mostly with me, but switched over to Mom for one run after she beat us down on her next-to-last run. 

We were tired by the time we got home on Sunday afternoon.  The fun of the camping dissipated as we all thought about the beginning of school the next day.  Kai expressed anxiety about going back to school.  My wife and I did not express our own anxieties, but could feel the OWIGTHISTS stress beginning to creep in already. 

I don’t know what today will bring.  I’m sure my wife and I will be a bit on edge until 2:30 when she picks him up at school. 

But, for one last weekend, we had a “wow wee” carefree, exciting time.  It was the perfect way to cap off the summer.

For more information about the Chestnut Mountain Alpine Slide, click here.

Friday, August 27, 2010

Spotting Jupiter at 3:30 AM

In our household, bedtime is when Dad reads a story with Kai. No matter what happened during the day, story time is one of my favorite times of the day.

When Kai was very young, Eric Carle books were a staple. As he got older, he really loved the Mr. Men books. We’ve also found some great books at our local public library during our weekly dad-and-son outings. (Perhaps I’ll highlight some when I have more time).

Lately, as I mentioned before, Kai has been really into the solar system. And, his reading preferences reflect that. Each week, on our library visit, we get a book about a different planet.

Last night, we were reading about the planet Jupiter at bedtime. I actually learn a lot from these kid-oriented books. Last night, for instance, I learned that Jupiter is one of the most visible planets in our sky. When I read that part, Kai said that it was most visible at 3:30AM. I didn’t see that in the book, so I’m not sure if he made that up or if he learned that somewhere else.

We finished the book and Kai went to sleep.

The next time I heard him was in the middle of the night. He called for me. I came out into the hallway to see what was up. He told me that it was 3:30 so it was a good time to see Jupiter! I grumbled and told him to go back to bed.

Soon thereafter, he came out again. From experience, I knew that he would not fall asleep again and would keep coming out to call me. I decided to lie down on the extra bed in his bedroom.

After our planetarium visit last weekend, we had hung models of the planets from the ceiling of his room. As I lay on the spare bed, looking up and knowing that I wasn’t going to fall back asleep anytime soon, I saw the model of Jupiter, glowing in the dark.

Kai was right. 3:30 is a great time to see Jupiter.

Addendum (added 9/8/2010)
It turns out that Kai did not make up that 3:30 AM was the best time to see Jupiter, and that it actually was true.

Little did I realize that the Chicago Tribune publishes the best viewing time for all visible planets every day on its weather page. Kai had spotted the information in small print located near the bottom of the page, and remembered it later when it was his bedtime. On that particular day, the best time to see Jupiter in the sky was indeed 3:30 AM.

It’s funny the things you can learn from your kids.

Thursday, August 26, 2010

Surprise at the Grocery Store

Until recently, my wife was very reluctant to take our son with her when she went to the grocery store. The risk of a severe tantrum and subsequent embarrassing public spectacle was just too great.

But, with Kai not in school during summer break, it’s harder to get to the store without him. And, since his behavior at home has gotten so much better, my wife has been bringing him to the store with her more often.

I’m happy to say that he has been darn near exceptional. He hasn’t had one bad incident all summer. My wife reports that Kai does not beg for anything and even helps her to pick out fruits and vegetables. Also, whereas before he used to obsess over numbers and insist on having to go through the entire store to see every aisle number, these days he is much more mellow about that and makes no such demands.

Despite these remarkable changes, we still were surprised at what occurred on a recent shopping trip.

While waiting for the cashier to check out all the groceries, Kai walked over to the woman who was bagging. “Thank you for helping us,” he said, totally unprompted. The woman smiled at him while my wife was simply stunned. After all, it wasn’t all that long ago that we were thrilled when he said any words, let alone something that involved such nice interaction with another person.

The Boy Who Did Not Speak surprises us again.

Wednesday, August 25, 2010

Riding a Bike a Different Rite of Passage

Learning to ride a bicycle seems like a mini rite of passage for many kids.  Along with becoming more mobile, it usually leads to a greater degree of independence.  It is a rite that my six year old son has not yet taken, though certainly not for lack of trying on our part.

When Kai was a toddler, he never got enjoyment from riding a tricycle.  While other kids pedaled as fast as their little legs can go, Kai hardly moved whenever we placed him on his trike. 

When he turned four, we got him his first bicycle.  It was shiny and blue and had a Thomas the Tank Engine picture on it.  He never wanted to ride it.

When he turned five, my wife thought that a new bike would get him more excited about riding.  Perhaps he needed one that was slightly bigger, and more comfortable for his growing body. We got one that was shiny and red and did not have any silly pictures on it.  He never wanted to ride that one either.

We tried hard to get him to ride.  One time, using his love of numbers as motivation, we created a series of small flags, each with a different number on them, and lined them up on the path at a nearby park.  The idea was that I would run alongside Kai, helping him as needed while he would be pedaling hard and excited about making it to each subsequent number.  My wife would be at the finish line, waving the final flag, and yelling encouragement. 

While Kai loved the numbers, he showed no inclination to pedal on his own and I was mostly pushing him the entire way.  After several attempts, I was out of gas.

Eventually, we accepted that riding a bike was not his thing.  We came to understand that issues with his vestibular system impair his spatial orientation.  He does not know where his body is in relation to the space around him, and that, in turn, makes movement difficult for him.  He is easily scared when he does not have his feet on the ground.  For that same reason, he doesn’t like to ride on swings.

This summer, we did not get a new bike.  We haven’t created number flags.  He hasn’t been on his bike once. 

Until Monday.

His new OT has been working with him on movement.  He’s been doing better at swinging on a rope when he is with her.  She got him to promise to try to ride his bike once before his next session with her.  When he came home that day, he asked me to get his bike out.

He got on and rode around the block.  Yesterday, he wanted to ride again.  He rode a little farther. 

He still has his training wheels on his bicycle.  He rides very slowly.  I’m not sure if he will ever ride the way most kids do. 

But, that’s okay.  It’s just nice to see that he is overcoming his fears and is beginning to have better spatial awareness. 

That is what I consider a rite of passage.

Tuesday, August 24, 2010

These Blissful Days of Summer

I know some kids are already back in school, but, for us, this is the last week before Kai goes back to school next week.  I wonder if parents of other kids with autism feel the same as I do about these waning summer days. 

I see them as among the most blissful days of the year. 

Kai seems very happy right now.  He’s enjoying having more time at home, playing with mom and me, going to the park, playing games, watching videos, and splashing around with the hose in our back yard.  As parents, we love to see our children so happy. 

But, I think our bliss goes beyond that.  My theory is that much of our seasonal joy is derived from a temporary lifting of a particular type of stress that seems to afflict parents of kids with autism to a greater degree than the general population.  The scientific name of this stress is Oh, What Is Going To Happen In School Today!?! Syndrome, or OWIGTHISTS as the professionals call it.   

When Kai is back in school, it likely won’t be long before we start getting reports from the school on how he pushed aside another child in line, or used angry, inappropriate language, or tried to bite a teacher, or deliberately hurt himself.  We will get that dreaded sinking feeling every time the phone rings, the one where we’re certain it’s the school calling to tell us of another incident. 

We will try not to let one or two of these incidents get us down.  We will tell ourselves to keep the big picture in mind and know that Kai has come a long way.  And yet, in time, I know that the peaceful bliss we are experiencing now will fade away and the OWIGTHISTS stress will descend upon us once again. 

But, that’s all for next week.  Right now, I’ve got a kid who wants Dad to come play outside.  I’m going to enjoy it while I can.

Monday, August 23, 2010

Planetarium Visit Eclipses Expectations

There is a familiar pattern to many of our weekend family outings.  First is the initial excitement about going to the zoo/museum/aquarium/etc. Second, we arrive at our destination and reality sets in.

Our worst experience was earlier this year when we went to the Chicago Children’s Museum at Navy Pier for Kai’s birthday.  Within five minutes, he was screaming to leave.  Between admission and parking, it was the quickest loss of $60 since I tried my hand at craps years ago.  Kai couldn’t articulate why he was so upset, but we think the environment was way too overwhelming for him. 

Not all outings are this bad, of course.  At Lincoln Park Zoo, he can usually tolerate things for about an hour before he wants to leave.  Though, there, his interest is more in the few rides they have than in seeing the animals. 

That we continue to periodically go on outings like these is probably due to three things:  1) forgetfulness (similar, I’m guessing, to women wanting to have another baby after memories of giving birth fade) 2) inherent optimism, and 3) an endless desire to give our child a fun learning experience.

Kai has really been into planets and the solar system in recent months.  On our weekly dad-and-son visits to our local public library, he invariably picks out a book or two on the topic.  This week’s choice is Jupiter, by the way.  And, with mom’s permission, he even created a solar system in his basement playroom using balls of various sizes for the sun, planets, and moons, and drawing the orbits of each on the carpet with chalk (hence, needing mom’s permission).

So it was that we decided on a visit to the Adler Planetarium this weekend.

Our visit got off to a good start when I found a metered parking space right in front of the planetarium.  These spots are still on the old system where you need to feed quarters into a meter (rather than the new boxes in the city that accept credit cards).  I initially put in four quarters.  One hour, that should do.  Oh, let’s be really optimistic and put in enough for two hours.

Inside the planetarium, we first caught the One World, One Sky show for kids ages 8 and under.  It is in the Definiti Space Theater which features comfy, La-Z-Boy type seats that recline back until you are virtually horizontal.  You feel like you are outdoors looking up as you see the sky above as well as 360 degrees around you. The show is for younger kids with Big Bird and Elmo coming out and talking about stars, constellations, and the moon. I think my son would have been able to handle more information, but he enjoyed the show and setting nonetheless.

Next, we saw a very cool, little exhibit called the Atwood.  There is room for no more than eight people, so we shared a cart ride with another family to the inside of a 15-foot sphere that darkens once you are inside.  You then see the Chicago night sky all around as it was when the Atwood was built in 1913.  An enthusiastic young guide is with you and, for about 10 minutes, he points out constellations and answers questions.  We were very fortunate to be there when the planetarium was not crowded, so our wait for the Atwood was minimal.

It has been years since I visited Adler and I was pleasantly surprised to find that the rest of the planetarium had plenty of things for younger kids to see and do. Kai loved the large planets hanging from the ceiling and also enjoyed the hands-on exhibits that give kids a taste of what traveling to space would be like.

We had so much fun that we lost track of time.  When we finally left and got back to the car, I had a bright orange parking ticket waiting for me.  We had overstayed our meter limit. 

While no one likes to get a parking ticket, as the price for an unusually successful family outing, this is one that I won’t mind paying. 

To learn more about Adler Planetarium, visit their website.

Children with Autism Process Sensory Information Differently

A new study shows that children with autism process sensory information differently than typically developing kids.  This isn’t shocking for us parents, but it is nice to know that research confirms that kids like Kai process information differently.

“The authors have identified defects in the way ASD individuals synthesize cues from different senses. In doing so, they have not only helped confirm the insights of parents and clinicians, but they’ve improved our understanding of how the behavioral differences in children with ASD may result from sensory anomalies.”

Read more here.

Saturday, August 21, 2010

A Crabby Choice Works for Vacation Curmudgeon

Though she’s never said so, I imagine that my wife thinks that I am a vacation curmudgeon because I frequently answer her suggestions of places to go with, “That sounds like a great place, but, what will Kai do over there?”

It’s not that I don’t like to travel. Quite the contrary, I’ve enjoyed traveling throughout the United States as well as to Europe, Asia, and Africa.

When I was a child, our family literally packed up our station wagon every summer and drove to all parts of the United States. In my idyllic recollections, the thought of roadside Stuckey’s and Holiday Inns evoke fond memories rather than pangs of recalled boredom. Those vacations were seemingly among the happiest times of my youth, and I would like to create similar experiences with my wife and son.

But, when you have a child with autism, it is not so easy to come up with great vacation ideas.

Among the things that need to be considered are that waiting is extremely difficult for my son. It is risky to go to places where he would have to wait more than a very few minutes to enjoy something. Well, that alone eliminates about 95% of the most popular family vacation destinations.

Eating out is another issue. While he does far better in restaurants now than he used to, it is still more of a tense experience than one of relaxed joy whenever we do eat out. You never know how impatient he will be if his food takes too long to come out, or what will happen if he gets frustrated with coloring his placemat, or so on. Also, with his gluten-free/casein-free diet, finding proper menu options can be challenging.

Furthermore, Kai’s interests are just not that broad. He is not that into aquariums or zoos or museums or other places that many kids are.

What he does like is going to the beach as, with his sensory issues, he loves the feel of the sand and waves. He also has a fascination with critters as he enjoys picking up bugs and worms in the backyard. And, he likes pounding on things.

It was with these things in mind that I finally came up with a vacation spot that would be worth trying: Ocean City, Maryland.

Ocean City has beaches. Miles and miles of beaches actually. I also found out that you can do crabbing there, which aligns with two of Kai’s interests: his love of critters as well as of pounding, which he could do after we cook the oodles of crabs we would surely catch.

My sister’s family lives within a half day’s drive of Ocean City and they were keen about joining us so we decided to get a condo together. That turned out to be a key to having an enjoyable time with Kai. It allowed us to skip restaurants altogether as we cooked and ate all our meals in the condo. It was also great having my sister’s family with us. Besides the camaraderie of doing fun activities together and just getting to spend time with family that we don’t see often enough, it was so nice to have others there to play with Kai or share the load with cooking or other chores. At home, my wife and I constantly feel stress as Kai requires so much attention. It was nice to have the extra support on our vacation.

As for the activities themselves, we went to a different beach every day. Kai loved being buried in the sand or splashing in the water. It was his first time in the ocean and he tried to sneak sips of the salty water whenever he could get away with it. At our last beach, he kept finding numerous small, shelled creatures that washed ashore.

Our crabbing experience was fun. We were thrilled that we actually were able to catch numerous crabs using chicken necks as bait. Most of the crabs we caught were so small that we threw them back. But, we kept some of the not-too-small ones to eat. Kai loved the whole experience and wanted to go crabbing every day. I think he enjoyed pounding open the steamed crabs with his wooden mallet even more than he liked catching or eating them.

My wife likes seafood so catching crabs also worked out in that she had a little taste of seafood. Although, I did “cheat” a bit by bringing back a dozen crabs from a local restaurant for us to eat back in the condo. While it was fun catching our own, the quantity of the meat in the much larger restaurant crabs was much more satisfying.

We also did other fun things like going to a water park and playing miniature golf. Ocean City must be the unofficial mini golf capital of the world with places galore. We also got to see the wild horses on nearby Assateague Island. Certainly not something you see very often.

There were a few stressful times, mostly in the car when Kai was yelling at the light signal for being red, or at the driver (me, mostly) for being in the wrong lane, the one that wasn’t moving. But, overall we all had a great time.

It was wonderful to have such a good experience, and to shed my curmudgeon image for this summer anyway. Now, I just need to come up with another great idea for Summer, 2011.

Friday, August 20, 2010

A Little Background About My Son

Before we get too far along in this blog, I should give you a bit of background about my son.

Kai was diagnosed with autism shortly after he turned two. At that time, he did not speak, made no eye contact, did not answer when his name was called, and did not respond to anything that was said to him. He rarely smiled, and got upset easily. Meltdowns were a daily occurrence at the very least.

As any parent would want their child to be happy and productive – or just plain normal – it was heartbreaking.

We began a rigorous regiment of behavioral and speech therapies, as well as biomedical treatments, most of which were either shunned or outright scorned by conventional medical practitioners.

Flash forward four years.

The Boy Who Did Not Speak has revealed an exuberant, chatterbox personality. His teacher said he was the leader in his class even though he was the youngest. His intelligence, so hidden when he was two that he could have been thought mentally impaired, has emerged with a flurry. This kindergartner does third grade math and reads at the second grade level. He learned the Hebrew alphabet in one week, and two weeks later had the Japanese hiragana alphabet down pat.

I don’t want to lead you to believe that everything is perfect. It is not. Kai still gets upset more often than we would like. He cannot easily tolerate change. Waiting is extremely difficult for him. He gets overwhelmed in chaotic places. He has difficulty answering questions.

And, because he now seems so “normal” in many ways, his autism is an invisible disability. To outsiders, Kai’s outbursts seem like those of a misbehaving child, rather than of a child who senses the world so differently from the rest of us.

On a day-to-day basis, when we’re dealing with our everyday challenges, it is easy to get caught up in all of our problems and to forget how far Kai has come. But, upon reflection, we see that it’s been quite a journey and he has made amazing progress.

On these pages, I hope to chronicle both the ongoing struggles and the successes in the months ahead. Thanks for coming along.

The iPad and Kids with Autism

Earlier this summer, while flying out east to attend my nephew’s high school graduation, I sat next to a college student who was using his iPad.  I hadn’t yet seen one up close at the time so it caught my attention.  The young man enthusiastically gave me a long demonstration of its capabilities.

I was blown away. 

My expectations were that an iPad would be fun and nice to have, but not anything more than that.  What I saw was that it had the potential to be so much more than just a fun toy.

Now, SF Weekly has come out with an interesting article on how iPads could help kids with autism.  The article profiles one particular family, but also gives information on various apps that have been developed that benefit kids with autism. 

Check it out here.

Thursday, August 19, 2010

Hanabi Boy

Hanabi is the Japanese word for fireworks.  Literally translated, it means “flowers of fire.” 

My six year old son, Kai, is the inspiration for this blog and its title.  Like hanabi, he is at times loud, often brilliant, and always beautiful. 

I should tell you that Kai has autism.  But, that is just one of many words you would need to describe him.  Funny, smart, persnickety, sensitive, and sweet are just some of the others.

I think some people have preconceived notions of people with autism, while others have virtually no conception at all.  Kai fits some of the stereotypes people may have, but certainly not all.  I think that is pretty much true of all kids on the autism spectrum. 

My hope is that, through this blog, you will see what a dazzling firecracker of a kid he is, and by extension, understand that all kids deserve to be seen for the unique qualities they all have.  Although this will not be an “autism blog” per se, my hope is that I can give you insight into one family’s experience with autism.
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