Turning 5 - Becoming a big boy

Kael turned 5 on November 8th, which officially makes him a BIG BOY!  

He had lots of family members and his good friend Alex, who shared in this celebration.  I am really excited because now he understands that he is a big boy, and knows it is time to start acting like a big boy.  So, it is his responsibility to get dressed by himself, to get a glass of water by himself, and to clean up by himself.  O.K., truth be told, it has only been two days and I find myself still wanting to help him with some tasks, but I am surprised at how independent he has become simply for having a birthday!

Kael amazes himself by how much he has grown in the last year.  His pants are shorter, he can reach the bathroom sink faucet without the need of a step stool, and he can put on his own shoes without help.  The Genesis Church gave him a pair of Converse shoes, which has laces, and will be the next step in proving that he is a big boy, when he learns how to tie them properly.  His teachers and I have recognized his increase in vocabulary, although he still uses "dah, dah, dah" to fill in the words he doesn't know.  His fine motor skills are improving while coloring at table time in class, and he has more patience to make sure not to color outside of the lines.

I wonder if he is ready to learn about being Autistic.  He already knows that he is special, and different.  In class, he is the only one that doesn't have to sit on the floor during circle time.  Instead, he has a chair with a picture of himself on it, which helps him tremendously to sit calmly and to pay attention during story time.  He also knows that he is the only one in his class that gets to have a special toy bucket that sits on his desk in front of him.  This has helped him overcome his fixation to clasp a small toy in his hand at all times.  Now he knows that it is right in front of him, his classmates won't take it, and it allows him to do other things with his hands like using scissors.

He knows he is different, and that he gets special treatment, but he may not know why and I wonder if now is a good time to tell him.  Is his mind able to comprehend the distinction between what is normal and what is different?  Does he recognize that other kids speak very well and can communicate their thoughts to get what they want?  I am sure of it, because it hurt me to hear him say "I not smart", when he couldn't figure out how to put the Spider Man puzzle together, that Alex gave him for his birthday.
I didn't know what to say, I was so shocked, and just ignored the comment.  But inside of me, my heart sunk, and I wondered, "Is now the time to tell him?"

Halloween

Halloween - A time to be something else for a day

Kael was a Robot this year for Halloween, in a custom made costume that allowed Kael to be something else for a day, and he loved it!  In fact, I had a hard time telling him it was time to take off the costume.  It took me a week to design and build it, and he enjoyed putting it on every time I needed to make an adjustment.  Then came the hard part, asking him to take it off so I could alter it to fit better, or to get the lights working.  

For the entire week before Halloween Kael got to be something other than himself.  He got to play the part of a Robot, and he played it well too, making sounds and moving like a robot would.  He terrorized the cats as he chased them around the house with "beep, boop" noises, while bumping into tables, chairs and people.  I liked seeing how engaged he became with the costume on.  Maybe we should look into trying other costumes on and role playing along with him.  Hmmm...  maybe this could be a new form of therapy for kids on the spectrum, to let their imagination grow by being something else for the day.

Finding a Friend

Kael, along with most kids on the spectrum, has a hard time associating with other kids his age, and finds it hard to make friends.  Don't get me wrong, there are plenty of kids that like Kael, it is just that he has a hard time liking them back.  He seems withdrawn when it comes to play time at school, as he is more interested in playing by himself.  A lot of that may be from the fact that he doesn't like to share his toys, I think most of it comes from not having the communication to let the other kids know how he would like to play.

Other kids his age are able to express themselves through words, how they would like to play with certain toys, where as with Kael, he can not let them know what it is he would like to do, furthermore, he doesn't comprehend what other kids are doing when they play, and can't easily jump in and join them.  If he does, it seems even more difficult for him to understand how the other kids want to play.  They can tell him what they are doing, he just doesn't understand all of their words, so for Kael, it may seem easier to just play alone.

Until recently.

Brady is a kid in class that shows a lot of compassion towards Kael, and has really bonded with Kael like no other classmate has.  Sure, Kael has friends from his Preschool class that were strategically positioned to sit next to Kael in the classroom to provide him with a comfort zone, by surrounding him with familiar people.  And Alex and Yulie do like Kael and have bonded with him before, but not on the level that I witnessed Brady.  For example, Brady was kind enough to cash in his good behavior points to Principal Sitkins for a brand new backpack, which he graciously gave to Kael.  And this was something Brady planned on doing.  He told Mrs. Hasse that he wanted to give a backpack to Kael before he went searching for one in Principal Sitkins' office.

And today, I saw how patient Brady is toward Kael when he let Kael wear a beaded necklace that he brought to class.  Not only did he let Kael wear it, he put it on and fastened it for Kael, who was having trouble doing it by himself.  Kael is not known for his patience, and if something takes long, he is gone.  Also, Kael has never liked having anything around his neck, which was evident the first day of preschool when he ripped off his bus pass away from his neck.  So this is quite a hurdle, as small as it may seem to others, a giant leap for Kael.

Now, for a kid to share one of his valuable possessions says quite a bit, but also to take the time and patience to help him with it on, to me shows that Brady is such a caring and understanding kid.  He also does something for Kael that not every classmate does, he talks to Kael, and repeats himself over and over until Kael understands.  He reaffirms his understanding by asking "O.K.?" until Kael replies "O.K."  I hope that the two of them grow in their friendship, and that Brady continues to nudge Kael out of his shell and helps him progress socially.

Kael pulled the fire alarm again!

I don't know what the urge is inside of Kael that makes him want to do what he knows is wrong, but he pulled the fire alarm again.  I stopped by the school at about 3:30 to drop off a check at my brother's classroom only to find that his wife and kids were there too.  I asked what was wrong.  "Roger was stung by a bee again."

He was stung by two bees earlier this summer and had a dramatic reaction that left him breathless and gasping for air.  He had developed an allergic reaction to the bee stings that almost shut down his respiratory system, and he started to feel the same reaction when he jabbed the EpiPen into his thigh.  That was shocking to hear about, but what was more shocking to find out is that it was indirectly caused by Kael.

After pulling the fire alarm, the students had to rush outside and wait, before getting the "All Clear" to come back in, at which time Roger was unfortunate to get stung by a bee.

How do you punish a kid who may not know the devastating results of his actions?  Well, we started with "time out", for the same 4 minutes as recommended, but this time we added a harsher sentence. After his time out, he had "time away" from all of the things he loves to do.  No t.v., no toys, and no books.  The sad part is that he just got a book from R.I.F. (reading is fundamental) and was excited to read it when he got home.  It was a Scooby Doo picture book, his favorites!  So, without the fun things to do, he did the only thing a bored kid could do, he took a nap.

Only, his nap turned into a slumber, as we tried to wake him for dinner, he rolled over and went back to sleep.  We woke him up, so that he could go to the potty, then he went back to bed.  I think he knew that he could not do the things he loved to do and was too sad to do the things he needs to do like eat.  Well, it may sound cruel and unusual punishment, but if it got the point across, I didn't mind being the bad dad and sending my kid to bed without dinner.

This morning I talked to him again about the severity of pulling the fire alarm, and without provocation, he held his head down and said, "I sorry", and that was enough for me to know that he understood he did wrong.  I still wanted to get my point across and had him apologize to his uncle and his teacher Mrs. Hasse, which he did, and unlike his apologies to get out of time out which is usually a quick "sorry" then off to play, he took the time to say an entire sentence of " I sorry I pulled  fire alarm", and you could hear the remorse in his voice.

First Day of School

Kael had is first day of Kindergarden today in Mrs. Hasse's class.  He had gotten plenty of sleep the night before, but he still woke up somewhat grumpy and discontent.  I made him some french toast with syrup and he felt better.

When he jumped on the bus with Tyla, Erica and I jumped in the car and drove up to the school to watch as he got off.  Mrs. Nancy was their, if only for a brief moment, to welcome him to his new school.  We walked the long way around to the playground and then to his classroom, and showed him the B that marked the door.

He was happy to see Mr. Mitchel waiting for him at his seat, along with the Shark and Tractor he left on his desk during roundup.  We showed him where to hang his book bag, and said our good-byes.  I wanted to stare through the window to make sure he was o.k. but something in side of me knew he would be just fine.

Yesterday Kael went to Kindergarden Roundup at the elementary school.

When we were anticipating the worst, Kael showed us his best.  He wrote his name on his name badge and politely sat in his seat proudly displaying "KAEL" on the paper taped to the top of his desk.

We were pleasantly surprised to see Yulie's name on the desk next to him.  She is one of Kael's best companion last year in Mrs. Nancy's class, and I am comforted to know that she is in his class again.
I know that Nancy and Mrs. Haase had a conversation about Kael before and found it wise to have Yulie sit next to him.

She is his friend.  She cares for Kael, and watches out for him.  I've seen her direct him into line, invite him to sit next to her at circle time, and play with him in the gym.  I hope that they continue to be friends all through school and afterward.  Only time will tell, but for right now it is definitely cute.

Preschool Failures

OK, now that I have described the wonderful things that Kael has accomplished in his Preschool year, let me give you an insight into some of his failures.  They are not real failures at all, however I do have to list them as  opposites to accomplishments.

Erica and I were very nervous putting Kael on the school bus, but we were reassured having Tyla, his older sister guiding him on and off the bus.  And I am sure Tyla didn't realize how much work it would be trying to control Kael.  The reports from Tammi the bus driver indicated that he was running up and down the isle punching the kids along the way.  He eventually was kicked off from the bus at the end of his third day of school.  The problem was not because he wasn't able to sit still, or the fact that he disrupted Tammie by hitting the other kids on the bus.  The final straw was when he spit in a parent's face as she was taking her child from the bus.

It took over a week before the teachers and bus driver devised a plan of action that would eventually allow Kael to return to riding the bus.  The first thing they devised was to issue the first seat to Kael, so that he knew every day which seat was his and the rest of the students understood as well. Then Tammie gave Kael a special toy he would only get if he stayed in his seat.  It was enough to keep him occupied throughout the entire ride to and from school.  Another tool his teachers devised was the use of a picture book which described what will happen on the bus.  It showed a picture of the bus, Tammie, his seat, the school, and his teachers.  This help aid Kael in understanding what would happen next to help reduce his anxiety, which may have led him to be antsy and run through the isle.

The only thing worse than getting kicked off the bus for spitting was the time he pulled the fire alarm at school.  This resulted in the fire department showing up to confirm there was no actual fire.  Although the teachers talked to Kael about the severity of pulling the fire alarm, he did not understand, because he did it again.  Yep, this time wasn't so bad because ironically there was a scheduled fire drill to be held that day.  Only, because it was raining outside the teachers decided not to have the drill.  Of course that is when Kael pulled the alarm.

Preschool Success Stories

Kael successfully completed Preschool and has impresses both his teachers and his parents. There were some bumps along the road, which made us nervous, however he pulled through and is ready for next year. 

Lets review some of his accomplishments and some of his epic failures which will be retold for years to come.
First, we are all proud that he was able to break out of his shell and become a sociable kid.  And when I say that, I mean he is able to play with other kids.  He doesn't yet initiate play, but he is able to join in and continue playing with the kids in his class.  He still has trouble talking, so play is limited to actions like building blocks or playing cars.  His teachers say his favorite social game is to play chase, where he gets to chase and be chased by his classmates.  When I spent some time in his classroom, I was surprised to see him in the gym interacting with other kids who found it fun for him to pull them across the gym floor using a hoola-hoop.  It really brings me joy to see him having fun with other kids, I have heard of many stories of Autistic children who are anti-social.

Second is the fact that he is now potty trained!  Such a big relief not having to put him on the toilet, hoping he will go.  It started as a routine of sitting him on the toilet between activities until he produced something, even the smallest tinkle would do. Often this was a major chore to break him from his focus and pull him away to the bathroom. Once he grasped that concept, he would go to the toilet after being asked if he had to go.  And now, he goes all by himself without being prompted or bribed.  Now we need to teach him how to wipe.

Third success is his ability to communicate more effectively.  Kael has broken out of his speaking shyness and is able to use multiple words in a complete sentence.  Albeit, the sentence may be hard to understand and may be filled with "filler" sounds, (he may not know the proper word so he will fill it in with taht tee toe sounds) we are still able to understand his point and complete his request.  He still has issues with a full back and forth conversation, but for right now, we are considering it a complete improvement from before he started school.

The fourth success story is his ability to sound out all of his letters.  From the help of Leap Frog's Letter Factory and Leap Frog's Talking Words, that my sister Cheri bought for him.  He picked up the sounds quickly because each letter has an action with the sound.  For example the letter W shows the letter dressed as a rapper saying " whuh whuh whuh" like a rapper would.  Or the letter T making the "teh teh teh" sound as it tap dances around.  This program seemed to work more effective than the ZooPhonics that the preschool taught.

And the fifth success story of his preschool year would be his newly acquired skill of writing his name.  He would, each and every day write his name in his Name Log which would show his progression from simple squiggly lines to actual letters.  His teachers would also tell stories of Kael writing his name with his eyes closed.  Of course this made him upset because it never looked as what he envisioned it to be when he opened his eyes.  Probably because he hasn't mastered the grip of the pencil quite yet.  Still, we will mark it as a victory, because he can recognize his name and write it down (somewhat) legibly.

Proud Papa

     I heard about horror stories, the one about Autistic children not being potty trained even after their 10th birthday.  Today I am a proud papa, because I can rightfully claim that Kael is potty trained!  He has shown so many improvements and has impressed Erica and myself tremendously.  You may never truly understand the significants of knowing what this milestone means for parents of an Autistic child.  Kael's therapists would even tell us to prepare ourselves for the reality, and to expect Kael to not be potty trained for a few years.  And here he is, within the last week he has made managed to go by himself with no help or direction for either parent.

     Before, it would take us forcing him to sit on the toilet, and he would kick and scream until he was placed upon the potty.  Then, he would stop fighting, pee, and act if nothing ever happened.  Not loving this routine of his, I was at one point willing to accept the fact that he will be in diapers well into middle school.  But Kael's councilors suggested Kael wear underwear until he learned to potty and it worked!  It was very tough on Erica and I to remember to stop what we were doing every hour to put Kael on the potty, and the screaming and fighting did not help at all, but we did it!  And he is doing it!

Now the next challenge... Bed Time!

Improvements

Kael has shown significant improvements since the begining of this mmonth. I am not shure what has changed with him... not his diet, or any other physical factors, so I must think that it is the support that he gets from school.

For some odd reason, Kael has dramaticly impoved his speech. He is now able to articulate words more clearly than ever before, and because we are able to understand him more, he is able to carry a conversation. Albeit a short one, maybe two or three sentences worth, but still... his brain is starting to work with his mouth. And his ears are more keen and can hear the differences in the sound his mouth makes. I can feel as if the cloud around him is clearing... and I am happy, with Kael. I'm not so happy with Erica.

Erica has applied a colorful bumper sticker to the back of her car that says "Its not Autism, its "AWE"tism." Now, this bumper sticker nags at me in a couple ways. One of which is the vagueness of the crude pun. Is Autism like awesome? Cause it's not. Or is Autism like a cute little kitty, "Awe"tism? Cause it's not that either.

Another reason this sticker gets to me is that it ANNOUNCES to the world that we have a child with Autism, look at us! Hey, we have a child with Autism, we are special! Yoohoo, hey look, over here, yeah us... Our son is Autistic. Now, if our son was born with no legs, would we have a sticker that said "Being Crip is Hip"? NO. How about any other abnormality or deficiency for that matter. NO!

She says it is to show your support. So, the bumper sticker stays. Even though I don't know what we are supporting. A greater cause? A cure? Or just to spread the word about Autism. I'm not sure.

But... I digress.

Kael has shown so much improvement and has even spent the last nights without a diaper.  

Kael's Journey

A memoir about a boy.

But not just a boy, a young boy stricken with Autism.

But not just a young boy stricken with Autism, but more importantly, my son.

Kael, at the time of this writing, a young boy, in his 2nd month of being a 4 year old.

And when I say stricken with Autism, I mean Autism Spectrum Disorder. And on this "spectrume" or scale of severity, Kael ranks in the "mild" part of the spectrum. In fact for some tests, he tested just below the "Qualifying" margins, which qualifies him as Autistic. My sister Cheryl calls it "Labeling". Erica my wife and I called "It", much sooner, at about age 2... we knew. We knew our Son Kael was "Special", we knew he was "Different". Maybe just "Slow" or "Stubborn", or maybe even "Lazy", but we knew.

Labeling Kael is hard, because he is more than just those words. And Kael is more than words. However, if I did have to define him, I do like the word "Unique". It does capture what I witness with in him every day. A person, just as complex and interesting as you or I. A being that is fun and personal, loving and cheerful. Mostly happy but sometimes sad. Just like us all. He feels love... and pain, in the mean while, giving his love and being a pain, sometimes. Just like us all.

The "People" call him Autistic.

He calls himself "Kael".

And this is his story.

A journey, through his "Diagnosis" into what truly describes himself, UNIQUE.