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.

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.

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.

Cacti Garden: Project Done!

Before the work began.  Dead plant.

The boys finished the cacti garden the next day.  It’s just taken me a few weeks to get the photos.  They worked well together, although they did ask if they could stop and finish “later” or “tomorrow”.  I kept them on task.  When they were done, they were very proud of their work.

Each boy had his own cactus or succulent that was special to him, but they worked together to space out the plants.  Ryan figured out quickly how not to get pricked by the spines.  He used the plastic container that the cactus came in.  He simply flipped the container over and guided the top of the plant where he wanted it.  Then he quickly filled in the dirt around the plant.  Cameron tried not to use anything, but in the end, he admitted he needed gloves.  Nick just kept quietly digging and filling dirt without a word.

Ryan in front.  Cameron in the red shirt.  Nick in the back.

It’s been two weeks, and they are very concerned about watering the cacti garden.  I have to remind them that cacti don’t need water.  Hence, one of the reasons we picked to add them to our landscape.  Less water, less $$ out.

They periodically go out to check on the growth of the garden.  Ryan is especially proud of his saguaro.  It’ll be the biggest cactus in the garden in a few years.

I can’t wait to see how the plants progress and how each boy looks after garden in the coming months and years.

Finally done!

Autism and Sensory Issues: Cacti Garden

In the Southwest, this is the perfect time of year to enjoy outside activities.  The boys agreed to pull out a huge, dead vine and put in a cactus garden.  The dead plant didn’t receive enough water, so what else would make sense but to plant items that don’t need much water?

Secretly, I had an ulterior motive.  I have noticed that some sensory issues are creeping back.  It has been over a year since Ryan and Nick have received any occupational therapy.  This type of therapy has helped them overcome a vast array of sensory issues.  For example, they can now wear jeans.  When they were younger, all they could tolerate on their skin was cotton.  Jeans were too itchy and heavy for them.  It took about 5-10 years for them to overcome clothing issues.

Anyways, at the autism conference last month I noticed Ryan could not wear his name badge.  It was attached to a cord that was suppose to go around his neck.  It lasted 10 minutes on his neck.  Throughout the day he tried to wear it because it was “required” to get in and out of the conference rooms.  Nonetheless, it never stayed around his neck for more than 10 minutes.

To deal with the sensory issues, I decided to use soil.  However, I needed to be creative.  The boys are not big fans of “therapies”.  Thus, the idea of a cactus garden was born.  Dry dirt, wet mud, hard clay, icky weeds, and dead vines were attacked today.  The boys tolerated most of these items as long as I kept them busy.  If one stopped with the chore, suddenly the gunk on his hands bothered him.  Each one wanted to take a break and wash his hands.  I knew if they stopped, there’d be no getting them back on task.  Consequently, I was a benevolent dictator today.

I worked side by side with them.  Cut, pull, dig.  It took a few hours, but we finished pulling out the weeds and the dead plant.  We filled two garbage cans with the debris.  I was amazed at how well this team of autistic teens worked together.

After cleaning up and eating any food available, we went cacti shopping.  We found a wonderful array of inexpensive succulents and cacti.  Nick made the request for blue plants, and we actually found two blue cacti.  Cameron found a beautiful plant called a silver torch.  Cam discovered the soft, white “cotton” on the cactus belied the hidden sharp spines.  “Ouch,” he exclaimed with astonishment.

Tomorrow we plant the new arrivals!  I have a feeling tomorrow will bring a new round of sensory issues:  planting and avoiding the spines.

photo credit:Clinton Steeds’ photostream (200)

Autism and Balancing Life: Mary vs Martha

Mary and Martha with Christ

Mary vs Martha? 

It has been a very busy week with the end of the quarter.  My younger three boys are in junior high or high school.  Projects, tests, assignments abound.  Autism in the mix makes for a wonderfully chaotic week!

Today is Friday, and now I get to catch up on the necessities of running the house.  Bills, paperwork, follow-up on insurance, doctors, prescriptions, bank accounts, housework, laundry, etc.  I stress to the boys that work needs to be done before they can pursue fun activities.  My problem is I never seem to get to the fun activities myself.

A friend called this the Martha vs Mary syndrome.  I laughed.

Who are Martha and Mary?  They are sisters out of the New Testament.  Jesus visits them.  Mary chooses to listen to Jesus.  Martha works to prepare the meal.  Martha is disappointed that her sister leaves the preparations to Martha.  Consequently, Martha asks Jesus to instruct Mary to help with the workload.  Jesus responds, “Martha, Martha, you are anxious and troubled about many things; one thing is needful.  Mary has chosen the good portion, which shall not be taken away from her.” Luke 10:41-42

I guess you can say that the moral of the story is that the spirit needs to be fed first.  Then all other matters can be tended.   It comes down to priorities.

I used to lean towards Mary.  I could easily give up housework and chores for whatever reason.  Now I lean heavily towards Martha.  Duties need to be done. DONE.  Maybe I’m becoming obsessive-compulsive myself.  I see so many things needing my attention, and I’m overwhelmed.  So many things.

I teach my kids about balance. Sometimes I even say they need to do an hour of yard work (or homework) before an hour of leisure. I need to take my own advice.  I need to balance obligation and fun.  The cure to the Mary vs Martha syndrome is not one over the other.  Tis the balance of Mary AND Martha!

photo credit:http://www.danielim.com/2011/06/13/integrating-two-sides-mary-vs-martha-or-mary-and-martha/

Getting Through The End Of The Quarter Workload

Nearing the end of the quarter is not fun for teachers or students.  For an autistic teenager, it’s an anxious-ridden, turbulent time.  If autism is coupled with OCD (Obsessive Compulsive Disorder), it’s a nightmare for the family. 

This last weekend Nicholas presented me with the work he had to accomplish.  He had a huge project due on Monday.  He also had a major test in that same class on Monday.  He had another project due later in the week.  This particular project required drawing and writing:  the two weaknesses of Nicholas.  There were other assignments and tests, also due on Monday.

Monday Morning Blues awaited, but we could lessen that impact with hard work.  The trick was to not let Nicholas feel anxiety.  Once that hits, game over.  That means he can’t focus anymore.  Literally.

I spent the weekend working with Nick.  We prioritized.  What had to be done immediately?  What could we use as a “break”?  When I saw how much information this one test was going to cover, we instantly started studying.  I learned with him.  We focused on major concepts.  Then we added details.  Memory is Nick’s strength.

When we had to take a break, we focused on the projects.  We alternated memorizing and projects.  Until 5pm Saturday evening.  I could see stress starting to build in Nick.  We had covered so much, yet we had much more to do.  I had to pace us–to keep going slowly but steadily.

By 6pm Nick’s eyes revealed signs of anxiety.  We stopped.  I made a decision.  No more project work.  Nick’s eyes widened.  I told him enough was enough.  He had to focus on one item.  I said the test was more important that the project.  I told him I’d email the teacher right away.  He was unsure, but he immediately sighed.  Really.  His shoulders relaxed.

I emailed the teacher about the situation, even saying that I assumed she would be understanding and generous.  I received a reply Sunday morning.  The teacher agreed to let Nick have an extension on the project.  She enlightened me that she knew Nick had been working on it since the project was assigned.  He was asking her questions daily.  So this definitely was not a case of procrastination.  I showed Nick the teacher’s email, and he was happy.  Nick was happy.  🙂

Nick came home yesterday, and he said that he thought he did well on the test.  It hadn’t been graded, but he wasn’t concerned.  Which is unusual.  He said he had to focus on the projects.  Last night we drafted three pages of his project, and he completed them.  Tonight we’ll do the graphs and the written assignment.  That will be one project done.

Then the next project awaits.  Always, one at a time!

Sweet Sixteen Is Nicholas

Nick’s 16 with Ryan, Mike, and Cam

Today is Nick’s birthday.  We celebrated yesterday because Dad had a day off.  We kept it simple.  Nick chose a restaurant specifically for their gluten free pizza crusts and gluten free desserts.  He opened a few presents at home, and he was very happy with his new treasures.

Nick is now very happy that he is one step closer to getting his driving permit. He is taking drivers ed in school, but I’m not sure when he’ll get that permit.  That is one decision we won’t worry about today.

His band class sang happy birthday to him this morning.  Otherwise, Nick reported that it was a quiet, yet fun day.  We have a few little surprises left for tonight.  I didn’t let him open every gift yesterday.

Happy Birthday, Nick!

Autism and Signing Documents

Paperwork!! Nobody likes paperwork, but it is one of those necessities of life.  Especially for kids with autism.  Adults with autism too.

Yesterday, Ryan signed his first set of legal documents.  He signed powers of attorney.  One was 13 pages long!  The others were only a few pages.  He diligently read each section that he was asked to initial.  He took his time.  At the end of each document he signed his name.  Carefully.  In cursive.  We rehearsed that.

For several weeks Mike and I have been talking with Ryan about growing up and taking responsibility.  That is something that Ryan isn’t really keen on.  He definitely wants freedom and independence, but he’s not really keen on the responsibility that comes with the territory of adulthood.

That can spell disaster for a typical 18 year old, but for an adult with autism who might be easily swayed, this is not something to take lightly.  Any wrong decision could be life altering for him.  And us.

I researched the different avenues we could pursue, as parents, for Ryan.  We want to protect him, while continuing to teach him about his choices in life.  We want him to continue to become independent from us, while minimizing risks.  It’s really an oxymoron in logic.

I attended a few seminars about guardianship and “transitioning into adulthood”.  I learned about the various types of guardianship that would require going to court to prove to a judge that Ryan is incompetent, completely or partially.  That would remove all or some rights for Ryan, like driving, voting, etc. I also learned about power of attorney that doesn’t restrict Ryan’s rights at all.  He authorizes us (or whomever he chooses) to make decisions or help him make decisions.  He retains his ability to make his choices independently, as well.
 
My gut reaction was the option of the power of attorney.  Mike agreed.  We explained the power of attorney concept to Ryan, and he liked that idea!  I found a special needs estate planner to draw up the documents.  Although I could have used any attorney, I want someone who specializes in this field.  It took a couple of weeks, and yesterday, Ryan signed those documents.

His first signing as an adult.

Autism and Adulthood

Ryan turned 18 a few weeks ago.  With that milestone, he transitions from childhood to adulthood.  When we’re children, we can’t wait for that big day!!!  However, as a parent, I could wait a bit longer.

Ryan is the third child of our five boys.  Since Mike and I have had two older boys turn 18, this transition was nothing knew.  Nonetheless, a son with autism turning 18 is vastly different.  Ryan has all the rights and responsibilities of an adult, and so many questions loom?  Does he have the maturity and capability of understanding choices he makes?  Will he take the initiative to solve problems he faces?  Can he make inquiries if necessary?  Can he handle his money efficiently?  How good are his life skills?  Some of these questions can be asked of neuro-typical (NT) teens.  The answers become even more vital for adults with special needs.

The first sign that concerned me was at a family gathering.  An uncle asked Ryan if he were ready to be an adult?  Ryan answered yes.  The conversation continued in typical question and answer style, ie relatives asking questions, and Ryan answering either yes or no.  UNTIL this question was posed:  “Do you want to do something different, take on more responsibility?”  Ryan answered with a sentence, “I want the least amount of  responsibility possible.”

Really?  Reality check.

Since then I have been researching what are possibilities for Ryan in all aspects of life:  living arrangements, schooling, working, finance, etc.  Not that I haven’t been doing that type of research already, but it became more intense and specified. What can an adult with autism potentially do?  Not just survive, but thrive?  There are so many cases of abuse and bullying adults with autism in group homes and in the work force.  It can be scary, but like everything else, we approach it as an adventure.

So onto another journey of life!