Autism: Surviving and Thriving

Fourteen years ago my youngest 3 boys were diagnosed with autism within a 9 month span. Devastation and grieving followed. Doctors gave me little or no hope, but they didn't know me very well. I refused to believe that my boys were doomed.

My boys are now young men, adults with autism. They are thriving, but every day presents its turmoil and challenges.

My family: husband Mike, sons Ryan 23 yr, Nicholas 21 yr, and Cameron 18 yr. (Ryan and Nick have autism; Cam has recovered from autism.) Our oldest sons, Michael 34 yr and Stuart 25 yr, moved out of the house. Ryan has also moved out, and is still working towards complete independence.

Friday, November 30, 2012

Autism and Music: Another Door Opens - Part II

All five of my boys play the piano.  It has never been a question of IF but WHEN to start them.

I started teaching my oldest son, Michael, during the summer when he turned 4 years old.  It was a matter of keeping him occupied more than my thinking he was a musical prodigy.  Michael was a very active, curious boy, so I needed to give him "input".  He liked playing the piano, and he learned quickly.  I was impressed.

By Christmas time he was playing Old Little Town of Bethlehem.  Or so I thought he could play it.  Within a few days he was in tears.  He whimpered out that he was very frustrated.  ??  I learned that I could not be Mom and Piano Teacher simultaneously.  I had kept pushing him, even after his lesson.  I had to stop.  I didn't want him hating the piano as I did.

The first thing I did was wait to continue any lessons.  I waited until he started clunking on the keys again.  I decided, through an evolutionary process, that I couldn't teach him as a regular student.  Michael had learned enough music that he could start a song.  He naturally asked me for help when he had something new.  I taught him that particular element and then left him alone.  This worked.

As the years rolled on, Michael played.  The younger brothers imitated Michael.  Stuart pestered me, "What am I going to play for the next recital?"  Thus started Stuart on the piano.  He learned songs just to play for recitals.  I always gave students the choice of music to play for recitals.  This worked incredibly well for Stuart.

The color-coded notes
Ryan, Nick, and Cam followed suit.  They all banged on the piano.  To save my grand piano,  I purchased a book that had a keyboard.  It was color coordinated, so that the notes matched the keys.  They learned Christmas carols in this book.  Although Ryan couldn't talk, he did point.  I could teach him what he wanted to know.  This was critical for all the boys. They learned easily by "hands-on" and by "sight".

Michael met music with much success.  In junior high he provided the music for several musical performances.  He taught, played at church, and worked a few piano events.  He developed a reputation for being incredibly musically inclined.  As music technology increased, so did Michael's time on the piano.  I purchased a digital piano, and Michael ended up teaching me how to use all the tools.

The digital piano opened creative doors to Michael.  He started writing and recording his own arrangements to popular songs.  Again, Stuart followed suit.  The technology appealed them.  Although playing the piano at school wasn't cool with male peers, the piano did impress the girls.  Consequently, my boys continued to play!

The recent years will be covered in Part III.

Thursday, November 29, 2012

Autism and Music: Another Door Opens - Part I

Cam, Ryan, Nick after a recital
The apple doesn't fall very far from the tree.  I grew up playing the piano.  I never had a choice, and now I teach piano.  Rather ironic.  I hated practicing daily, and now I ask my students to do exactly that.  My boys are no exception.  I am mom.  I am also piano teacher.  They would rather not practice.  They can think of so many other things to do.

Bummer.

I remember the day I met my piano teacher.  My dad whistled, and my siblings and I fell in line from oldest to youngest.  If you've seen the musical, The Sound of Music, you know what I'm talking about.  My dad introduced this lady to us.  "Her name is Miss Sherry. She is your piano teacher.  Who is going first?"  My siblings and I looked at each other, wondering who wanted this.  No one answered.  My dad answered his own question then, "Oldest to youngest."  So started years of piano lessons, practice sessions, and recitals.

Over the years I grew to like the instrument, especially when I was able to play music of my own choice.  Music opened doors for me.  At a very young age I was performing and playing for people.  Whether I was playing at church or in school, I played the piano.  Sometimes I'd play for friends if requested.  I accompanied a few opera singers and other musicians.  I met close friends via music.  Little did I know this would become a way to communicate with my children with autism.  Looking back, I see I related to many people from all walks of life through music.

Teaching music was my first job.  At the ripe age of 14 I started teaching.  Of course, I became serious and earned my certification when I turned 30.  Teaching music has allowed me to stay home and be with my boys.  If there is ever a need at school or therapy, I am able to go immediately.  I can attend their dietary needs.

Music is also a therapy of sorts for me.  I can play Beethoven if I need to let off steam.  I can play Beatles or Queen to have fun.  Playing movie themes relieves stress.  I can have a few minutes of freedom. 

When the boys were young, they were never far away. They'd dance. They'd climb on my lap and play the piano via the "bang" method.  I'd let them plop their hands of the ivories, and their faces would light up on the sound they created.  Being around the piano was a way for us to connect when the boys couldn't talk.  We could smile and have fun simply by playing "sounds".  It didn't have to be music, per say.  Just sitting together and pushing the keys.  We had a good time.

Now the boys all play on their own.  They play and perform.  Teenage boys with autism can and do!

How do I get them to do that?  That will be Part II.

Wednesday, November 21, 2012

Husband's Birthday, But Who Is He?

Mike
Today is Mike's birthday.  I have known him for 24 years.  We met at the hospital where we worked.  We kept it quiet from most people.  The hospital grapevine was better, faster, more efficient than the twitter of today.  When I first met Mike, he always had a smile on his face.  No matter what he was doing, his smile beamed.  That's probably what drew me to him.  I like being around happy people.

Then there were Sam and Evelyn.  They were an older couple who volunteered at the hospital.  Although they were in their 80s, they were active, sharp, and witty.  Very astute and wise too.  Not much could pass their eyes as they sat at the front desk to greet visitors.  Even the people who would try to sneak in stuff to patients' rooms.  These two volunteers would gently, but firmly remind these people the rules of the hospital and the safety of their loved ones.

Mike with his sister Dana
I am not sure when Sam and Evelyn figured out there was "something about Mike and Sheryl", but figure it out they did!

Sam and Evelyn let me know exactly what they thought of Mike.  I couldn't pass their desk without hearing something about Mike.  Every time they talked about Mike, it was high praise.  "He is a quiet, hard working, clean cut young man.  He will take good care of you."

One time Sam scared me.  He grabbed my arm, and said he had to talk with me.  I thought there was trouble, but Sam just wanted to tell me how Mike helped him.  Sam ended with, "You have a good man."

Then there was Kim.  Kim was the person who knew every problem in the world.  If there was some negative vibe, she would "share" with everyone how wrong it was.  Kim, sadly, lived in a pessimistic world.  Nonetheless, when Kim told me about Mike, there was NOTHING bad she could say about him.  She assured me, "If there were something wrong with him, I'd let you know."  What a testimony!

Of course, there were others who voiced their opinions about Mike.  Most of it is positive. The only people who would say something negative about my husband are those who do not value honor, truth, family, etc.

Mike has been a great spouse.  I can't imagine what he thinks when I lose my temper or when I get frustrated dealing with aspects of autism.  He listens and guides me.  He encourages me to take time away when needed--something I never dreamed of doing until 18 months ago.  Mike has been the source of peace and strength for me.  Going through life with him has been a great joy.  Even with autism.

I am glad my boys have such a wonderful example!  Even though it is Mike's birthday, he has given us the gift of his love and life.


Tuesday, November 20, 2012

Autism: Understanding How To Vote

Two weeks ago was the presidential election.  This was Ryan's first major election to vote.  We decided to do it together.  This decision was based on previous experience!

In late August Ryan voted for the first time.  By mail.  He expressed that he wanted to vote without help.  OK.  So Mike and I presented the sample ballot, the pamphlets describing the local issues and candidates.  We both emphasized to Ryan that he needed to take his time reading and understanding all the information. , We showed him how to cast his vote on the ballot.  We instructed him to fold the ballot, and then sign and seal the envelope.

Within a few days, his ballot was ready to mail, and he did so.  I was impressed that Ryan took on the whole process.  He had asked a few questions, but he made a very clear point:  he wanted to be independent in his voting.  OK.

The day after the small election we received a ballot addressed to Ryan.  I was confused.  Why was he receiving a ballot after the election?  Then it hit me.  He must have checked "the box" which indicates that the ballot was no good, that he made a mistake.  When Ryan arrived home, I asked him if he had made a mistake on his ballot.  No.  I asked if he put an X in the box on the outside of the envelope.  Yes.

So much for his independent vote.  It was not going to count this time!

I explained to Ryan (again) what that box was for.  He said he understood.  I asked then why he checked it.  He thought he had to because it said to do so.  (Check box...)  This is classic.  He understood the concept, but it didn't carry over to application.

Consequently, we went through the voting process together.  Ryan was free to vote as he saw fit, but Mike and I explained each office, each proposition, each candidate.  When Ryan was done voting, we watched him put his ballot in the envelope, seal it, and sign it.  AND NO checking the box!  This time his vote did count.

Nothing like learning from experience.