Halloween Treats for Boy of Mystery

I’m not sure what the best age is for enjoying Halloween, but being six years old has to be near the top. My son is more excited than he has ever been about Halloween, but he still has the youthful innocence about it that makes it all so charming.

When Kai was three years old, we all dressed up as pirates for Halloween. That year, we had some fun at home but did not take him out for tricks-or-treat. With his gluten-free/casein-free (GFCF) diet, we thought that Kai might get upset about not being able to eat most of the candy he would receive. Also, back then he was really busy every afternoon with his ABA therapy so he really did not have time to go trick-or-treating anyway. Kai did his therapy at home, but also enjoyed answering the doorbell and greeting the kids who came to our house.

The next year, with his love of numbers, we dressed him up as The Count from Sesame Street and took him out for tricks-or-treat for the first time. He enjoyed it – for three houses. After that he wanted to come home and just greet the visitors at our house. My wife had planned ahead and gotten him a lot of GFCF treats that he could eat, so he was satisfied with those and did not seem to mind that he couldn’t have most of the candy he received.

Last year, for the first time, Kai was excited in anticipation of Halloween. He really likes the Peanuts specials which we have on dvd, and the Halloween one is a favorite. Perhaps because of that, or maybe because he was older and just more aware of things, he was very attuned to the upcoming festivities. It was the first time that he decided on his own what he wanted to be for Halloween.

As with his love of numbers, Kai has long had a fascination with letters. When he was younger, he played with letters the way other boys play with trains or trucks. He rarely made animals or other shapes with Play Doh, preferring to make letters instead. He’d also spend hours drawing letters in all sorts of creative ways. For a long time, if you'd ask Kai who his friends were, he'd tell you a letter rather than another child.

With this love of letters, it was not exactly a surprise that the first time he expressed an interest in what to be for Halloween, he said that he wanted to be a letter. At first he wanted to be the letter A, but then he decided on the letter Q.

We realized that it was an odd choice, but, as parents are wont to do, we wanted to him to be happy with his Halloween costume. And so, my wife, who really does not like to sew, made the coolest costume for him – a satin black vest and a matching cape with a shiny red Q on the front and a question mark on the back. And, with that, Kai was Super Q, boy of mystery!

Kai loved his costume. He wore it to school and marched nicely in the school parade. And, for the first time, he really wanted to go trick-or-treating. We went to a few houses on our block and then he had enough. But, after taking a break, he wanted to go back out again. We ended up staying out long after it got dark.

This year, he’s already marked up a map with the route he wants to take for tricks-or-treat. He even wants to walk the route this afternoon to practice for Sunday. If we hit every house on the route, we’ll be trick-or-treating until Thanksgiving.

Kai wants to be Charlie Brown this year so my wife has a shirt with the familiar zig-zag stripe all ready for him. I’ll kind of miss the Boy of Mystery, but Charlie Brown fits him, too.

Good ol’ Charlie Brown. Good ol’ Kai.

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Does Low Barometric Pressure Affect Kids with Autism?

I had the radio on the other day while driving back from my son’s swim lesson and all the talk was about the record low barometric pressure we were having in our area that day. Many folks were calling in and telling stories about how the low pressure system was affecting people’s behaviors.

As you may recall, my son had his worst day of the year at school that day. I had attributed his poor day solely to his anxiety about the swim lesson he would have after school. However, after doing research on the subject, I am wondering if the barometric pressure also had some effect.

Apparently this link between the weather and behavior has been known for some time. The BBC reported that “researchers in the Ukraine have found that slight low-frequency atmospheric oscillations can influence human mental activity, causing significant changes in attention and short term memory functions.”

An article in yesterday’s examiner.com said that “low barometric pressure is associated with an increase in impulsive behaviours” and that children on the autism spectrum seem to be the most affected. The article goes on to give tips on handling the situation, including using sensory integration techniques.

I’m still not sure how much of Kai’s poor behavior at school the other day was because of the weather, but it’s something to be aware of. I’m curious to hear if teachers or other parents notice a difference in their kids’ behaviors. As for me, I’ll be paying a little bit closer attention to the weather reports to see if I can detect a pattern with Kai.

Update on 11/10/2010:  I collected barometric pressure readings for the past seven weeks and compared my son’s school performance on high versus low pressure days.  See the results here.

Drowning Fears of Swimming

I previously wrote about our son’s success with his new swimming instructor, James. Unfortunately, since then, James had to cancel twice and another time we had a long-standing doctor’s appointment for Kai. So, Kai has had only one swim lesson in the past month. Disruptions in the regular routine are hard on kids with autism, and, with these lessons still being new to Kai, the result was that his fears about swimming returned with a vengeance.

Kai started talking about being scared of swimming several days ago. By Sunday, his anxiety had increased and he spoke of Tuesday, swim day, being a bad day. On Monday, he told his teachers that he would not be coming to school the next day. That afternoon, as he was leaving school, he said, “See you on Wednesday” to everyone on his way out as he was planning to be sick the next day.

We tried to be extremely positive with him, telling him that he would be alright, have fun, and that James would take good care of him. But, his anxiety only grew stronger.

Our own anxiety had grown, too. His fears were even worse than before he started his lessons with James. How long would it take to just get him back to square one? How would he perform at school with all his anxiety about swimming?

Tuesday morning came and he did not want to go to school. It took a lot of coaxing to get him into the cab in the morning. Our fears were realized when Kai ended up having his worst day of the year at school. It was so bad that his social worker called us to find out if something was going on at home that she should know about.

I knew that it would be hard to get Kai over to the swim lesson so I volunteered to pick him up at school and drive him over to the health club. Kai smiled when he saw me at school. Perhaps, he thought, swimming would be canceled again. But, when he found out that was not the case, he ran back into his classroom. One of the teaching assistants retrieved him but Kai still refused to leave school. He kept saying that he was scared of swimming and that he would die. I tried to reassure him while his TA employed some helpful calming strategies. After much soothing on both of our parts, we walked Kai out to the car.

I drove him over to the health club where we would meet Mom. Kai did not want to get out of the car. So I playfully carried him from the car into the club and over to the locker room. He laughed the whole way, but when it came time to change into his swimsuit, he resisted again.

When I finally had him ready, I walked Kai over to James who was already in the pool. He spoke to Kai in a reassuring, steady voice. Kai kept saying that he was scared and did not want to get into the pool. James kept speaking calmly to Kai. I was surprised when, a few minutes later, Kai voluntarily went into the pool.

James reviewed the three steps of swimming with Kai: Number one, kick fast; number two, extend your arms; number three, make the “wooooo” sound to breathe properly. He got Kai to perform all three parts, first one at a time, then all together. Within ten minutes, he had Kai swimming out to the middle of the pool.

At that point, James stopped to ask Kai, “Is swimming scary or is it fun?” Kai responded that it was fun and said he wanted to do more.

During the rest of the session, James got Kai to do a lot more, including putting his head further into the water than he had done before. After Kai did that, he called over to us, “Mom, Dad, I did it!” We gave him a big cheer.

Once again, I was amazed at how much James was able to accomplish with Kai. It gives me hope about the things that Kai might be able to achieve, not just in the swimming pool, but in life.

At the end of the session, James asked Kai if Tuesdays would be a day to look forward to or a day to be scared of. Kai said that he would look forward to it.

Now that my own anxiety has been relieved, I will too.

“Don’t Feed the Monster on Tuesdays!”

On our weekly dad-and-son trip to the public library last week, we found a book that I think is well worth mentioning. “Don’t Feed the Monster on Tuesdays!: The Children’s Self-Esteem Book” is a self-help book for kids in the form of a fun, children’s story.

The monster in this book is that voice inside all of us that “makes us think negative thoughts” about ourselves. It is the voice that says, “You’re dumb” or “you’re fat” or “no one likes you.” With colorful illustrations, the book depicts this voice as a green monster who literally takes bites out of our self-esteem every time we think badly about ourselves. The more negative thoughts we have, the bigger the monster grows and the smaller we feel as he eats away at our self-esteem.

Within the context of a funny story, the book goes on to give kids constructive tips for building self-esteem. It suggests starting with just one day – Tuesdays – where we stop being negative and, instead, be positive about ourselves. As we stop feeding the monster, he gets smaller and smaller while our self-esteem grows bigger and bigger.

I think that kids with autism may be more likely to be faced with self-esteem issues, so I want to begin to address it while my son is still young. I wouldn’t know how to explain about self-esteem on my own. This book use simple language to explain the concept in a way that kids can understand. Best of all, Kai laughed in many places, and was thoroughly interested throughout.

It’s Tuesday; don’t feed the monster today!

26,283 Jack-O-Lanterns, One Satisfying Time

Our neighboring community of Highwood had a pumpkin festival this weekend.  The spotlight of the event was an attempt to break the Guinness Book of World Records of 30,128 jack-o-lanterns set by Boston, MA in 2006.

With history in the making, I thought we should check it out.  How fun it would be to partake in the festivities and show Kai 30,000 pumpkins.

The drive over to Highwood was short, but as soon as we turned onto the main street of this tiny town, we were caught in a long traffic tie-up.  Within moments, Kai started his back-seat driving for me to park the car.  I had flashbacks to the small-town traffic torment we unexpectedly encountered at the Burgoo Festival a couple of weeks ago.

But, Kai held it together just enough while I managed to drive out of the quagmire and found a place to park several blocks away.  We were all determined to see the history-making pumpkins, so we walked back into the heart of town. 

We found a LOT of jack-o-lanterns.  Many were quite creative.  Kai liked the ones with letters carved in them.  I just liked that the community had come together to work on this.

There were about as many people in the main festival area as there were pumpkins.  It was hard to get around as the crush of the crowd surrounded all the various booths that were set up.  Besides the many large displays of jack-o-lanterns, we didn’t see much of the festival as Kai quickly got overwhelmed and insisted that we leave. 

We made the trek back to our car.  Just as we got there, it started to rain hard.  My wife thanked Kai for getting us out of the festival in time so that we didn’t get soaked. 

The next day, I discovered that Highwood had ended up with 26,283 jack-o-lanterns.  They had fallen short of the world record. 

I’m sure that was at least somewhat disappointing to all those who worked so hard.  Still, I have a feeling that there was a great deal of satisfaction out of making such a valiant attempt. 

And that is sometimes how it is with raising a child with autism.  You don’t always accomplish your big goals, but you often find satisfaction in the journey nonetheless. 

On this night, Kai got upset at times, but didn’t have a major meltdown. We didn’t see a world-record number of jack-o-lanterns or very much else at the festival, but we got to see 26,000 pumpkins and stayed dry.  All things considered, that’s not a bad evening.    

Karate Test Measures Progress

My son has been doing karate for a little over a year through a program for kids with special needs.

When we observed the class before enrolling Kai, we could hardly believe that all of the kids we saw had special needs, as most seemed indistinguishable from typical kids.  Kai would surely stick out, we thought, because he wouldn’t follow directions or be able to do the things the other kids were doing.  At that time, he had just started kindergarten at our neighborhood school, and the school was reporting problems with his behavior every day.  If he could not pay attention and follow along with other kids at school, we were skeptical that he would be able to do so in the karate class.

To our surprise, it did not take long before Kai was participating in the class just the way the other kids were.  The instructor, or sensei, at this dojo has a presence that commands the students’ attention and respect.   Sensei has a way of both encouraging and goading the kids to accomplish things they had never done before. 

Each class includes a series of exercises, activities, and karate techniques.  Besides learning karate, the kids work on building strength, balance, and coordination.  But, in addition to the physical activity, what I like is that Kai is learning to listen, follow directions, and participate in a group setting. 

Yesterday, the class was tested for their belt promotions.  Kai has been a yellow belt for quite awhile now.  Six months ago, he tested for orange belt but did not succeed as he was not able to do the required karate movements, or kata, without Sensei giving him all of the steps.  At that time, his movements lacked precision, and his fun-loving personality too often made it appear that he did not take karate seriously.  He has made progress since then, but we were not sure it was enough to be able to pass the test.

To prepare for this exam, my wife practiced the kata with Kai every night.  She had memorized the movements herself and worked with Kai until he knew them as well.

As we sat in the bleachers of the dojo watching the students go through the routines for the test, most of the parents appeared to be more tense than the kids.  My wife was particularly nervous.  The exam began with a series of exercises where the students had to perform according to Sensei’s instructions.  At one point, Kai struggled to lift a bar and my wife whispered her encouragement, “Come on, Kai.”  His left arm appeared to be particularly weak and for a few moments it looked like he wouldn’t be able to do it.  I think we were both afraid that he would get frustrated which might then lead to a meltdown.  But, he finally got the bar up and my wife breathed a heavy sigh of relief.  

The test moved on to the karate portion. First, they had to listen to Sensei’s commands and execute the proper movement.  Kai did this very well.  It was amazing how much better he was able to listen and respond compared to six months ago. 

When it came time to do the kata, Kai looked very comfortable and confident as he went through the entire routine.  Here, the practice sessions with Mom paid off particularly well.

Finally, he had to sit quietly and watch the other kids perform.  It was no small accomplishment that he was able to contain his goofy, chatterbox personality while watching the others.  His restraint was indicative that he is gaining more self control. 

After everyone finished, the parents in the stands anxiously awaited Sensei’s verdicts.  As he came to Kai, my wife held her breath.  When he announced that Kai had earned his orange belt, she had tears in her eyes as we cheered Kai on. 

As Sensei put the orange belt around Kai, we could hear Kai telling him that he worked “really, really, really, really hard” for this. 

Yes, Kai, you really did.  And, so, too, did Mom.

Congratulations!

Planning a Good Surprise

Like many kids with autism, my son has trouble adapting to schedule changes or other disruptions to the usual routine. Although Kai has had some great days at school lately, including earning 100 points on multiple days, he still has major incidents on other days.

A frequent cause of these incidents at school is when there is an unexpected change in the class schedule. For example, usually on the days when his class goes to the school library, they first return to their desks from their previous activity before lining up to go to the library. But, the other day, because they were running a bit late, the teacher asked the students to line up without returning to their desks. It seems like such a minor change, but, it was enough to set Kai off. He ran up to one of the teaching assistants, struck her, and was verbally inappropriate toward her.

We mentioned this problem with rigidity to Kai’s longtime speech therapist. Alyson gave us an intriguing idea for addressing this.

At home, knowing that Kai has difficulty with change, we have tried to plan everything out for him and let him know the schedule of events at least a day in advance, if not more. We almost always stick to a routine, and it’s been pretty effective at keeping him at peace. However, it may also be keeping him from learning to be flexible.

In life, he is going to have to deal with changes in schedules as there is no way to have everything go according to plan 100% of the time. Toward this, Alyson suggested that we occasionally plan a “good surprise” for Kai. The idea is that we would, on occasion, spring an “unplanned” activity onto his schedule, but, it would be something that he enjoys. So, while he would have to deal with a disruption in the routine, he would get to do something fun, which, hopefully, will mitigate how upset he gets.

We liked this idea and passed it along to Kai’s social worker at school. They are going to look for ways to plan a “good surprise” there as well.

I think the reason that change is difficult for kids like Kai is because they have so much anxiety, and anything that takes them away from the comfort of the routine raises fear that something bad will happen. But, if change can lead to something good, perhaps that will lower his anxiety and help him become less rigid.

For us, that would be a really good surprise.

The Thrill of Learning to Type

My son’s latest passion is learning how to type. Last week, as a reward for getting 100 points at school, my wife gave him a computer game that teaches kids how to type. Since then, that has been his activity of choice whenever he has free time.

When Kai was younger, all he wanted to do at times was to write letters. He would go through reams of paper, often getting very artistic with drawing letters in various forms. He was so obsessed with it, that we sometimes had to restrict or even totally stop him from doing this as it seemed to hinder him from social interactions.

So, it is no surprise that he would like this Disney computer game that involves using letters.

The program teaches kids proper hand positioning and finger usage. It starts with the easiest letters to type, f and j. Kai was fascinated as he typed fff, followed by jjj, then various combinations of the two. Before long, d and k were added.

At the end of each lesson, there is a test. With his love of numbers, seeing the score of his number of words per minute and percentage for accuracy added more excitement. 91%! All right!

When Kai passed the level one test and made it to level two, he was motivated to get to level three. He really got excited when a vowel, the letter a, was among the next set of letters he learned. That meant he could type real words. Along with the letter a were the s, l, and ; keys. I never before saw a six year old so happy to learn about semicolons.

He couldn’t wait to finish level two so that he could find out what the next letters were. It took him another day, but when he made it to level three, he was happy to learn they were g and h. Level four was even more thrilling, as that brought two more vowels, e and i.

As he has progressed, the program is getting a bit harder now so he’s not going to advance as quickly as before. But, he already knows that level five will bring the SHIFT key so he can’t wait to get there. After all, that will mean he can type upper case letters. For a kid who loves letters like he does, that is nirvana.

Unsung Hero

I think that in many families, dads get a lot of the glory while the moms are doing much of the underappreciated tasks that keep the household running smoothly.  Dads are often the ones to play ball with the kids or take them on fun outings while the moms may do more of the mundane tasks such as cooking, cleaning, shopping, and laundry. 

At our house, my wife does all that, but she’s also the driving force behind most of our son’s treatments and activities. 

My wife researches therapies, biomedical advancements, GFCF recipes, play opportunities – really anything that will give our son an opportunity to improve the quality of his current and future life.  She’s also then the one to put all of her research into action, whether by driving Kai to his swim lesson or battling with the insurance company about paying for therapy. 

Kai has come a long way since we first learned of his autism.  There is absolutely no way he would have made all that progress without my wife’s unceasing devotion. 

When you live with autism every day, the support of a loving spouse is incredibly important.  I am uplifted by my wife’s dedication.

And, so, to my dear wife, I wish you the happiest birthday today.  Thank you for everything you do.  I am unbelievably fortunate to have you as my partner in this adventure.   

Bee is for Birthday

Tomorrow will be my wife’s birthday, but we celebrated it this weekend.

My son loves birthdays, and has been thinking of Mom’s for quite a while now. On Saturday morning, while we were driving from his ice skating class to his karate class, Kai asked me to stop at Walgreen’s so he could get Mom her birthday present. He knew just what he wanted to get.

We went in the store and he dashed to the cosmetics section. There is a brand of lipgloss called Wetslicks Fruit Spritzers that comes in many different flavors/colors. My son loves colors, but the real attraction for this particular product is that each flavor has a different number on the package. For Mother’s Day, he got 525 Tangerine, and 530 Watermelon. For the past five months, he has been thinking about what different numbers he would get for Mom’s birthday. He decided on 520 Papaya and 535 Raspberry, and also picked out a Peanuts birthday card for her.

On Sunday morning, while my wife was out working, Kai and I prepared for the birthday dinner we would have that evening. We started out with the birthday cake. Last year I tried to bake one but this time I took the easy way out and picked up a gluten-free, dairy-free cake from Whole Foods. All we had to do was to add the frosting and decorate it. Kai used decorating “pens” to write “Happy Birthday Mom.” We also wrapped his lip gloss presents and started preparations for the dinner.

In the afternoon, after my wife came home, he wanted to play ten different sports together with me and Mom. We had all ten picked out and started with football, before proceeding to baseball (or, at least, his Kai Ball version of baseball), then basketball, hockey, and golf. It was a beautiful day out and perfect for playing all these sports.

But, we never got past sport number five.

As we were cleaning up the golf equipment, we suddenly heard Kai scream, “A bee!” When we turned to look at him, he was clutching his finger and screaming, “I NEED A BAND-AID!” We did not see a bee, and I managed to unclutch his hand long enough to see that there was no stinger in his hand. He did not appear to be having any type of allergic reaction.

Still, the screaming was relentless. We took him inside. While I went on the internet to google “bee sting,” Kai was in panic mode as he emptied the contents of the medicine cabinet looking for a box of band aids. While my wife attempted to calm him, I discovered that as long as there is no allergic reaction, there is nothing to do except use ice to reduce the swelling.

I returned to the terrorized one and tried to gently put ice on his finger. In the midst of all his blood curdling screams, my wife asked him, “Are you sure it was a bee?” This boy, who usually takes forever to answer any of our questions, immediately replied, “YES, I’M SURE!”

The screaming continued. “I NEED TO GO TO THE HOSPITAL RIGHT NOW! I NEED TO GO TO THE EMERGENCY ROOM!” We told him that he would be all right and that there was no need to go to the emergency room.

With tears in his eyes, he looked up at me and said, “Dad, I’m not going to see you anymore” as if he was about to depart for the hereafter.

The whole episode lasted for several minutes, though I’m sure it seemed much longer to Kai. When he finally started to calm down, I said, “If the pain was 100% at its worst, how much is it now?” He replied that it was 70%. A little while later it was 50%. Before too long, it went down some more. After that, worn out by his bee trauma, he took a rare afternoon nap.

When he awoke, I made dinner and we had our birthday celebration. We ate dinner, Kai and I sang the “Happy Birthday” song, and Mom opened her presents. Mom liked the lip gloss and birthday card that Kai picked out. We all liked the cake from Whole Foods.

But, best of all, my wife and I both loved that Kai was so enthusiastic about celebrating Mom’s birthday and did so much to make it fun.

Now, that’s really worth screaming about!

To see more pictures, visit Hanabi Boy on Facebook.

100!

My son’s school sends home a “point sheet” every day that shows how his behavior was during school. Kai is scored on ten criteria which include things like follows direction, stays on task, accepts feedback, and respect for adults, peers and property. During each of his ten periods at school, he can earn one point for each of the ten criteria he does well. So, the highest possible score for a day is 100.

We’re pretty happy if he scores 90 or more. He’s seldom gotten more than 95 because he often loses points for not staying on task or not following directions. When he has a major incident that involves unsafe behavior such as biting or hitting, his scores are usually much lower as he loses points in a lot of different areas, particularly those involving respect for others.

Last week, my wife promised Kai that if he got a 100, he would get a “special prize.” Kai was really excited about the thought of a special prize and set himself a goal to get it. I was glad to see him motivated, though I did not think that he would be able to get 100 points, at least not for now.

I was wrong.

On Wednesday of last week, he was bursting with excitement when he got home from school. He could not wait for us to open his backpack and look at the point sheet. We took it out and, there it was, all 10s every period with a total score of 100. We could hardly believe our eyes. 100! He stayed on task and followed directions every period, and had safe behaviors all day. Hurray! That fact that it happened on a Wednesday, the day where he has to go last for lunch and PE, made it all the more impressive. We gave him huge hugs and many high fives. The look on his face was priceless, as he was beaming with pride.

Of course, he asked for his special prize. Mom brought out an inexpensive little game that you would find at a dollar store. It teaches kids about different coins and how to count money. Most of it was way too easy for him so it didn’t hold his interest for too long. But, he didn’t seem disappointed. I think it’s because he knew that his real prize was in knowing that he did really well and accomplished his goal to get a 100.

I could end here, but there is more. He followed up his 100 last Wednesday with a 98.5 on Thursday. Then, this week, after the 3-day weekend, he got another 100 to start the school week on Tuesday. That earned him another prize, this time a computer game that teaches kids how to type. (My wife found it for just $4 at a store that sells used books and software.) To top it all off, yesterday, he got his third 100. That makes three 100s and a 98.5 in the last six school days.

It was just over a week ago that I thought getting a 100 was not possible. Now, he’s gotten three of them. At this rate, my wife will soon be all out of cheap prizes. We may have to raise the bar on his prizes.

My son has amazed me once again. And that is the best prize of all.

Anxiety Over Sleep Issues

We have been doing biomedical treatment with our son since shortly after he was diagnosed with autism when he was two years old. Kai has made a lot of progress in many areas, but sleep remains a persistent issue. His two-night streak of sleeping through the night when we went camping this past weekend was an extremely rare occurrence. Now that we’re home, he has resumed waking up in the middle of the night.

Many kids with autism have sleeping issues. Kai usually wakes up some time between midnight and 3AM. He will come knocking on our door and I’ll go out to see him and put him back to bed. Sometimes he will just say, “good night” and lay down in his bed. Other times, he will start talking to me about all sorts of different topics including planets. And, then there are times when he seems really anxious, and he may tell me he had a bad dream and can’t sleep. When he is more talkative or when he says he can’t sleep, it is almost certain that he will come knocking on our door again. On those nights, I often end up sleeping in the extra bed in his bedroom.

Before, I never wanted to stay in his room as I thought that it was just an emotional over-dependency on his part to want to see me or my wife in the middle of the night. I thought we would just be coddling him if we stayed in his room. A tough love approach would teach him to be more independent.

But, tests done by our DAN (Defeat Autism Now!) doctor show that Kai’s neurotransmitters are not functioning correctly, and his glutamate levels are particularly high. Glutamate is the most excitatory neurotransmitter in the nervous system. Abnormally high amounts of glutamate can result in disruptive sleep and bring on high levels of anxiety. As Kai is fearful of so many things, it is likely that his glutamate level is at least partially responsible.

Knowing that his anxiety and sleep problems are the result of a physical condition rather than simply an emotional issue, I’ve softened my stance about taking a tough love approach. I’ve tried to place myself in his shoes. How would it feel to wake up in the middle of the night, feel very anxious about something, and not be able to fall back to sleep?

Is it bad to soothe your six year old child in the middle of the night? Would it be better to take a tough love approach and leave him alone, even if he is unable to fall back asleep?

When I stay in his room, he usually becomes calm, stays quiet, and eventually falls back asleep. But, at some point, he may wake up again after I have fallen back asleep.

Three nights ago, some time after I fell asleep in his room, he woke me up. “Dad, stop snoring!” Apparently, I was sleeping too noisily for him.

Two nights ago, some time after I fell asleep in his room, he woke me up. “Dad?” “Huh?” “You can go back to sleep.” Apparently, I was sleeping quietly and he was just checking to make sure that I was still in the room.

Then, earlier this morning, he again woke me up. “Dad?” “Huh?” “You can sleep for 15 more minutes.” “Uh, thanks, Kai.”

And then, 15 minutes later, the human alarm clock went off. “Time to wake up, Daddy!” “Grrrumph.”

You know, on second thought, maybe that tough love approach is not so bad.

* * * * *
This post was submitted for S-O-S Best of the Best, Edition 8: Sleep Issues & Bedtime and Kids with Special Needs, which will be published on July 15th, 2011. You find more information and read other submissions here.

The Soothing Roar of the Interstate?

On our recent camping trip, our son slept better than he usually does at home.  Unfortunately, the same did not apply to me and my wife.

Yesterday, I mentioned the huge crowds at the Burgoo Festival as we attempted to drive through small town Utica to get to Starved Rock State Park.  Well, I neglected to mention that there were a lot of people at the State Park as well.

The main parking lot there is quite vast, but, even so, it was overflowing with cars parked in all sorts of places that were not intended for parking.  We did the loop around the lot hoping to get lucky and be in the right spot when someone else was pulling out.  After sitting in traffic for so long just to get to the park, we were in no mood to do the Parking Lot 500.  Fortunately, we found victory lane after only a few laps as a minivan pulled out at just the right time.

With all those people there, it was no surprise that the campground at the State Park was completely booked.  But, I called a private campground a few miles away and secured the last campsite.  I had some trepidation about staying in a private campground, but it turned out to be quite nice.  It had lots of large trees and was arguably more picturesque than the campground in the State Park itself.  The only potential issue was that it was kind of close to the interstate highway, about a mile away.  But, when we arrived, the highway sounds did not bother us at all. 

Or, so we thought.

Kai fell asleep soon after we turned the lights off in our tent at 9:00 PM, and did not awake again until 6:00AM.  For a kid who gets up in the middle of the night ninety-nine days out of a hundred, this was highly unusual.  I don’t know if it was the cool night air, having less anxiety because he was sleeping in the same tent as Mom and Dad, or because he was tired out from all the hiking, but, for whatever reason, he slept great.  He slept well again the second night, so it wasn’t a fluke. 

My wife and I, though, had more of a restless sleep.  The sounds from the highway that we did not notice at all during the day became annoyingly loud once all else was quiet and we wanted to sleep.  It was a distant, but persistent roar of trucks and cars as they sped past. 

As I was lying awake, I wondered if that is how all sounds are for my son.  I’ve heard that children with autism can be hypersensitive to various stimuli, including noises.  It can be hard for them to maintain focus and attention because they can be distracted by sounds that most people do not notice.  For Kai, I imagine that it would be like hearing these highway sounds all day long in his head while he was trying to listen to other things.

Once we returned home, my wife and I slept more soundly in our quiet home.  Our son, on the other hand, resumed waking up in the middle of the night.  Maybe I need to pitch a tent in our backyard for him.  Perhaps, I need to take him for more hikes before dinner.  Or, maybe he needs more “highway sounds” at night to match those in his head all day.

Perfect Getaway for Fall Camping

Outstanding weather.  Gorgeous fall colors.  All the elements of a nice, weekend camping trip were in place.

With our son being off from school for Columbus Day yesterday, we took advantage of the three-day weekend to get away for another camping trip.  Our destination this time: Starved Rock State Park in northern Illinois.

In a state where the predominant landscape is flat cornfields, the beauty of Starved Rock stands out like an ear of Indian corn in a bushel full of feed corn.  Starved Rock has breathtaking bluffs, colorful forests, and impressive canyons.  Located just two hours from downtown Chicago, it is a popular getaway destination for the urban and suburban crowd.

The crowds this weekend were even greater as the nearby town of Utica had their 41^st annual Burgoo Festival.  The name Burgoo, I later learned, refers to the stew served at the festival.  According to Kai’s grandfather, possum is the key ingredient. 

We had no interest in trying the stew or attending the festival.  Or rather, we knew that Kai would have no tolerance for the crowds there.  And what a crowd it was.  According to the sign entering Utica, it has a population of 1,000.  But, this weekend, I would not be exaggerating to say that there were more than 100,000 people at this giant craft fair/flea market/outdoor party that encompassed the entire little town.  As a veteran of many Taste of Chicago festivals, the crowds at the Chicago affairs have nothing on this shindig in Utica.

Our problem was that the only way to get to Starved Rock is to travel through Utica, which basically only has one primary road that goes through it.  As we waited in incredible traffic in a town that has no light signal, Kai got increasingly agitated.  Somehow we managed to get through the town and reach the State Park while we still had some semblance of tolerance for each other.

Once at Starved Rock, our weekend was wonderful.  My wife and I most enjoyed the spectacular scenery while Kai loved camping in a tent.  It was the perfect time of year for camping.  In our area, the leaves are at their peak of vibrancy, and the weather this weekend warmed to 80 degrees.    

Starved Rock is now my wife’s favorite spot for camping.  The trails, besides taking you to and through amazing sights, are well-marked, with plenty of trails being easy to walk for novice outdoors-people like ourselves.  Fall is also a great time to camp because there are virtually no bugs and the humidity is low.

In addition to the camping and hiking, we took a break and went to an orchard about a half hour away to do some apple picking.  It is the tail end of apple season, but Boggio’s Orchard & Produce had enough for us to fill up one bag with Red Delicious apples.  We also picked out a giant pumpkin to bring home.  Plus, they had some fun play areas for kids, with Kai’s favorite being a large “sandbox” that was filled with kernels of corn instead of sand.  My wife and I liked that it wasn’t as messy as sand, and Kai loved the sensation of the corn against his body.

When we returned home yesterday, we were tired but also feeling relaxed.  It was great to have weekend that was fun for all of us.  We will definitely be going back. However, unless we develop a taste for possum stew, I think we will try to avoid the Burgoo weekend next time.

To see more photos, visit Hanabi Boy on Facebook.

Starved Rock State Park has a nice website.  For planning where to hike, I particularly like the detailed information they give on all of their various trails.

To learn more about Boggio’s Orchard & Produce, visit their website.

“We Can Make It Better”

We were at our son’s school the other day when the speech therapist there told us about a book they will be using to help teach kids how to solve social problems.

She explained that there are three components to problem solving.  First, you must be able to look at a situation and identify facts.  This is a called doing a situational evaluation.  Next, from this evaluation, identify what problems exist.  Finally, infer possible outcomes to the situation. 

Most of us can often take the first two steps for granted, especially when the problem seems readily apparent to us.  However, she explained that kids like Kai have trouble with things like reading body language or understanding relationships between people.  That makes it hard for them to even assess the facts of a situation, let alone be aware that there is a problem for which they need to come up with a solution.  It can also lead to frustration on their part when they do know that there is a problem, but cannot identify the source of it in order to solve it.

The book they will be using at school is called “We Can Make It Better!” It contains twenty-one stories where there is some type of social dilemma related to the context. Examples include someone making inappropriate comments or quitting a game when losing.  The reader is then invited to find ways to “make it better.”  In our son’s case, the speech therapist will be facilitating a discussion with him and another child to help them problem solve and come up with a more preferred outcome to the story.  Through this process, the students will develop a better understanding of how one person’s behavior can positively or negatively affect a relationship between people. 

At school, once the students get practice at “making it better” through the stories in the book, the staff will be using the same approach to help students problem solve real situations that develop during the day there.  Later on, that will be something we can do with him at home as well. 

What a great approach, and a nice philosophy of life, too.  “We can make it better!”

Slowly Obeying Another Rule in the Car

I’ve talked before about my son’s backseat driving in the car.  Well, things are about to go to a whole new level.

Kai has discovered the speedometer.

My intrepid wife is usually the one who drives our son to his various therapies, karate class, swim lesson, and doctor visits.  The drive from his swim lesson to karate class is particularly tough because the time in between is short.  Since Kai always has anxiety about being late, this drive can bring out the worst of his backseat driving. 

This week was not any different.  Fearing that he would be late to karate, Kai implored Mom to drive faster.  My wife pointed out the speed limit sign and told Kai that she could not go faster because you have to obey the speed limit rules. 

Now, my son is a stickler for rules.  I think that many kids with autism see things in black and white, which, when it comes to sticking to the rules, is generally a good thing.  He knows that he will be held to the rules, and expects others to as well.  He sometimes will talk about another child at school who did not obey a rule and received a time out.  At home, if I raise my voice, he will tell me that I am breaking the rule about not shouting.

So, on this occasion in the car, he seemed satisfied with having to obey the speed limit and was quiet for the rest of the drive to karate class.

On the way home, while driving along the same road as before, Kai spoke up.  “Mom, you’re going too fast.  The speed limit is 35 and you are going 40.”  Uh, oh.

Busted.

Again.

We want our son to obey rules.  So, how do we explain about speed limits? 

“Well, I know the sign says the limit is 55, but that means that you can go 60.”  “I know you are supposed to obey all rules, but it is okay to not obey this one.” 

Nah, I’m even having trouble with that one. 

So, it looks like we will be driving a little slower from now on.  I guess I will have to get more comfortable in the right lane of the interstate highways.. 

But, what I want to know is, how can I put a dimmer on the speedometer?

Mainstream vs. Special School – Part 3

Here are the top ten differences between our son’s therapeutic school and his old neighborhood school:

1. The staff at the therapeutic school are specifically trained to work with kids like Kai. The staff at his neighborhood school mostly are not.
2. The environment at his old school was not conducive for a child with many sensory issues. His new school environment is designed for kids like him.
3. At his neighborhood school, Kai was assigned one untrained aide, and his teacher had too many students to be able to provide a lot of one-one-one attention. At his current school, there are three well-trained aides besides the teacher for a class that is half the size.
4. The near-daily incident reports at his old school made us feel guilty about our son’s behavior. His incidents at the therapeutic school are reported to make us aware.
5. At the regular school, he did not have much success learning in a regular classroom environment. At the therapeutic school, he gets a lot of individual attention which helps him excel.
6. At his old school, he was instructed along with the other kids in class, most of who were behind him academically. At his current school, he advances at his own pace and is now doing 4th grade reading and math.
7. At his old school, his behavior would sometimes preclude him from participating in special activities. At his new school, special activities like working in the Snack Shop are set up specifically to provide him with learning opportunities.
8. At his neighborhood school, he stuck out for all the wrong reasons. At his current school, he was described by his teacher as being the leader in his class.
9. When he attended his old school, Mom and Dad were constantly stressed out. Now, our stress levels are lower.
10. At his old school, he felt like a failure for his inability to behave like other kids. At his new school, he often comes home smiling and cannot wait for us to open his backpack to check out his scoresheet to see how well he did that day.

Now, all of this is not to say that all kids with special needs are better off in special schools. I am only reporting the experiences that we had. It would be wrong to generalize for everyone else.

Ideally, we would like it if our son could get the same type of supports while also benefiting from being in a mainstream classroom. So that raises the question of how kids with autism can be successful in mainstream environments. I think the keys to success are providing the supports they need, which includes having adequate numbers of well-trained staff, making adjustments to the classroom and school environment, and changes to routines and procedures. With the realities of the public school system these days, how likely is all of that to happen? Our neighborhood school is a good school, with good teachers and staff, and they do a good job of educating most kids. It just wasn’t the place for Kai, at least for now.

We are fortunate that we found an alternative that is helping him learn, both academically and behaviorally.

If you have not already done so, you may want to check out Part 1 and Part 2.

Mainstream vs. Special School – Part 2

Change of any kind is hard for six year olds with autism.  Changing schools in the middle of his kindergarten year was going to be a huge adjustment for our son, we figured.  If his last day at his old school was any indication, it was going to be a long transition. (If you have not yet read Part 1, click here.)

Our son started attending a public, therapeutic day school in February.  We tried to prepare him for the transition from our neighborhood school.  With the help of the social worker at his old school and other therapists who worked with Kai, we created a social story about changing schools.  We also drove to his new school before his first day, and he got to spend a bit of time seeing his classroom and meeting his teacher and other staff.

When he started at his new school, he had a bit of difficulty during his first week, but, somewhat surprisingly to us, already did much better his second week.  He took to his new teacher right away.  Since he was one of only two kids in the class at the very beginning, that allowed his teacher to work individually with Kai quite a bit.  She was patient and enthusiastic.  She saw great promise in our son, and wanted to bring those to fruition.  For a child with so much anxiety, finding a trusted source of support in an unfamiliar place was very comforting.

About a month after he started at his new school, we had our first parent-teacher conference.  Besides his teacher, we met the classroom teaching assistants and the social worker assigned to Kai.  We were very pleasantly surprised to learn that the staff there was actually able to get Kai to do some schoolwork.  We found out that he was reading at a second grade level and doing third grade math. 

We also noticed that Kai seemed happier.  I’ve got to believe that he was aware that he wasn’t being successful at his old school, whereas now he was fitting in and knowing that he was doing pretty well.  His teacher told us that even though he was the youngest, Kai was the leader of his class, which had grown by then to five kids. 

At the Open House we went to last week, we saw that his growth has continued.  He is now in first grade and is doing 4^th grade work.  He has a new teacher for first grade, and she and the assistants in that class seem just as committed and capable as his previous teachers.

I don’t want to paint an overly rosy picture and imply that his behaviors have magically improved and there are no longer any issues.  That is not true.  There certainly have been many incidents at his new school, too.  But, the difference is, the staff there are trained and prepared to deal with those behaviors.  They use it as an occasion to teach the child.  And, I believe that he is learning.

There is a saying to be careful what you wish for because you just might get it.  We wished for our son to be mainstreamed, and while the wish came true, things did not end up the way we hoped.  On the other hand, sometimes good things come along when you least expect it.  Our son ended up in a much different place than where we dreamed, and he is better off for it. 

Tomorrow: Summing up the differences between a mainstream and therapeutic school environment.

Mainstream vs. Special School – Part 1

It was Open House at our son’s school last Thursday.  Kai was so excited to show us his classroom.  It was great to meet with his teachers and staff, and to see what he has been working on.  Kai is going to a therapeutic day school, has been since February.  The teachers there all seem enthusiastic, energetic, and very capable.  The Open House made me think of how much has changed in terms of school in the past year. 

A year ago, Kai had just finished his first month of kindergarten at our neighborhood school.  He was in a mainstream classroom, which, at one time, was a dream for us.  But, the reality was already starting to show that the dream was not going to turn out the way we hoped.

From my personal observation, I think that most parents of children on the autism spectrum want their kids to be mainstreamed in regular classrooms at their neighborhood schools alongside neurotypical peers.  We certainly did.

 “Least restrictive environment” is the battle cry often heard.  It is our son’s right to be in a mainstream classroom, our thinking went.  How will he ever learn to function in the real world if he is isolated from neurotypical peers and not allowed to attend a regular school?  How will he learn to communicate and socialize with other children if he attends a “special” school full of kids like him who have trouble in that regard themselves?

I now realize that mainstreaming is not a panacea, and that it is not the best choice in all cases.  Before we get to the reasons behind this change in thought, let’s backtrack a bit.

For the first year or two after Kai was diagnosed with autism, my wife and I never dreamed that he would ever be able to attend regular classes at our neighborhood school.  After all, Kai did not speak or respond to anyone, and he had many behavioral issues.

But, as time went on and he improved in so many ways, we started to think more and more about the possibility that perhaps our son could be mainstreamed.  Our behavioral therapists worked hard to prepare Kai for school.  They drilled him in academics so he would not be behind the other kids.  They practiced school routines like calendar time and lining up and raising your hand and taking turns. 

Our lead therapist recommended that Kai attend a regular preschool as preparation for attending a mainstream kindergarten class.  She found us a wonderful school that was very accepting and supportive of our son.  With Mary accompanying him as his aide, Kai adjusted well to preschool and was able to function fairly well.  As time went on, he was even able to attend a few days a week without Mary, who faded her support so that Kai would be more independent. 

With his success in preschool, we began to hope that Kai might have a chance to be mainstreamed.  We had the support and encouragement of all of his team of therapists, psychologists, and social workers.  We braced ourselves for a fight with our local school officials who we thought would try to place Kai into a special school.  When they agreed without a fight to allow Kai to attend our neighborhood school in a mainstream kindergarten class, it was a joyous day and quite a milestone in his road to recovery. 

The joy of our son being allowed to go to a regular school, however, did not last long.  On what seemed to be a daily basis, we got calls from the school about some incident that he had.  He would hit himself or kick another student or try to bite a teacher.  Often, this was precipitated by having to wait for something.  Sometimes he protested having to do something.

The school attempted to make accommodations for him.  An aide was assigned to him.  He would enter and leave the building separately from his classmates to avoid the chaos in the hallway.  He could ask for breaks and take timeouts in a different, quieter classroom.  The school social worker worked tirelessly to develop social stories, brainstorm ideas on how to address issues, and work with him personally to try to teach him acceptable behavior.

There were some successes.  His teacher said that Kai was well-liked by his classmates, and he liked them as well.  He had some good days.  But, all too often, his days were considered good when he had only a minor incident instead of a major one.  His success or lack thereof was defined by his behavior, and not at all by academics.  In terms of schoolwork, this kid, who everyone agreed was very bright, produced almost no actual work. 

As the weeks went on, our stack of incident reports that the school sent home was growing into our own little War and Peace, minus the Peace part.  It was taking a toll at home.  Stress levels were high.  We felt frustration with the school – they don’t know what they are doing!  We felt frustration with our son – why did you hit/scream/bite/say mean words?!  We felt frustration with each other.

Along with our own stress, we could tell that Kai was feeling anxious as well. While he could not fully express his feelings, I think he felt like a failure for not being able to stay in his classroom as he was taken to the class next door after each incident.  He felt singled out for his behavior, one time asking Mom, “How come the other kids don’t go there when they do something bad?”       

Over time, we got the notion that the school administrators and staff were stressing out as well.  They seemed frustrated about being simply unable to effectively deal with Kai.  It was apparent that most of them had little experience in dealing with kids like him, and that the school was not able to teach him, let alone get him to behave properly.  The aide assigned to Kai even quietly admitted to us one day that she was not trained to work with kids like him.

A little past the halfway mark of the school year, the school suggested to us that things were not working out and that Kai should attend a different school.  A part of us wanted to fight this – try harder!  But, we were worn down by the constant stress.  Perhaps we should try something different.

Along with officials from his school, we visited several schools that were candidates for placement.  After the visits, we agreed on the choice – a public therapeutic day school in a nearby suburb that specializes in kids like our son.  It would be a totally different environment for him.   

Kai didn't have much of reaction when we first told him that he was changing schools. I wondered if he really understood what that meant. But, by his last day at his old school, it had sunk in. Despite all the difficulties he had there, it was still his school, and his friends, and he was going to miss them all.  As he was leaving there for the last time, it was heart-wrenching to see him so unhappy as he shouted, "I'm so sad!" as he ran out the door crying.

Tomorrow: Attending a therapeutic day school

Date Night For Parents, Great Night For Grandmother

With many of our family members living in a different part of the country from us, or even on the other side of the world, it is always a treat whenever we do see them.  My wife and I both came from small families and did not have a lot of cousins or other family members that we saw very often.  So, we really appreciate it when our son has opportunities to spend time with members of his extended family.  It is particularly nice because he gets very excited about seeing his relatives. 

Since the middle of last week, Kai’s grandmother has been in town on business and has been staying with us.  We don’t get to see Mama Dell too often, so she always notices how much Kai has changed since her last visit.  This time she was quick to point out how much he is interacting with her, making great eye contact, and behaving so nicely.

Often, when Mama Dell comes to town, she is so busy with work that she doesn’t have much time to spend with Kai.  This time, however, she wanted to give my wife and me a break, and offered to watch Kai one evening.  It has been many, many months since my wife and I had a date night, so we took her up on her offer. 

The evening was a win-win-win all around.

My wife and I had a nice night out, a pleasant break from our usual routine.  Kai had a great time with his grandmother; they played fun games and laughed a lot when she read him a funny book and sang a sweet, silly song at bedtime.  And, when we later returned home, Mama Dell was glowing about how much she enjoyed spending the evening with Kai.  She had earlier lamented that since she lives so far away, she doesn’t feel as connected with her grandkids as she would like.  So, the chance to spend quality time with Kai was very special to her. 

At one time, Kai couldn’t interact with others.  He was difficult to handle.  It was hard for all of us, but particularly his faraway relatives, to see what a sweet, remarkable child he really was.  But, I am happy to say that is changing by the day.

And so, I paraphrase the famous credit card commercial: A night out for Mom and Dad – sweet!  A chance for grandmother and grandson to really bond – priceless!

Are You Ready for Some Kai Ball?

The turning of the calendar reminds me that we are entering that special time of year – prime sports season!  When I was single, October was one of my favorite months.  My two favorite sports are in high gear.  Baseball season comes to an exciting finish with the playoffs and World Series while football is ramping up into mid-season.  As an avid sports fan, you can’t do better than that.

As a father though, I haven’t had time to watch many games.  My attempts to interest my son in sports have been met with only limited success.  In fact, the most success I had actually happened by chance. 

In June, while Kai was getting probes attached to his head for his 48-hour EEG, we turned on the television to keep him distracted.  A baseball game was on.  Although he previously had not shown much interest, this game caught his attention when it went into extra innings.  With his love of numbers, the discovery that a game could go to two-digits was positively thrilling for Kai.  It took quite a long time for the technician to attach all the probes and I was concerned that the game would end and so would Kai’s patience with the getting the probes put on.  But, we were lucky that the game lasted long enough for the technician to finish up.

For the next several weeks, Kai wanted to watch baseball at dinnertime instead of his usual videos.  It was my good fortune that his interest coincided with the White Sox’ best hot streak of the season.  I actually was able to watch several games as the Sox moved into first place.  But, as the summer went on, Kai’s interest in baseball faded, as did the Sox’ winning ways.

Kai’s interest in playing sports is, so far, only mildly more than in watching it on television.  We recently had the bad, and then good experience with soccer.  But, overall, he just has not been too interested in playing.

So, it’s been my pleasant surprise lately that he has asked me to go play baseball with him in the front yard.  Now, playing baseball with Kai is not like playing baseball with other kids.  In fact, it’s not really baseball at all.  I call it Kai Ball.

The only part that resembles baseball is that a ball is pitched and the batter hits it.  What happens after that is more a combination of tag and football.  The batter, usually Kai, runs around while the pitcher, usually me, grabs the ball and chases him.  There are no bases, just a lot of running all over the yard.  For a little guy, he runs really fast.  But, eventually I’ll chase him down and grab him.  If I’m not too exhausted, I’ll spin him around before gently “tackling” and tickling him.  Between the running and spinning, I’m usually dizzy and ready to pass out, but he sure loves it.  The best part for me is hearing him laugh and laugh throughout all the chasing and tackling. 

This October, I am not sure how many football games I will watch.  I probably won’t see too much of the World Series.  But, if I get in a few more games of Kai Ball, I will be happy.  After all, it’s now my new favorite sport.