Mamas On The Run

My mom and me

My mom and I have escaped to her hometown in Michigan.  I was pregnant with Nicholas when I last visited my relatives, 18 years ago.

When I was growing up, my family and I visited Michigan every other year, on average.  Our vacations always included visiting cousins, grandparents, and extended family.  We usually drove throughout the country and stayed with family members.  It was rare to stay at a hotel. The best parts of our vacations were not the activities or sight-seeing tours.  The best parts were being around family, or doing those sight-seeing excursions with family.

I wanted to continue these outings with my own family.  Unfortunately, travelling with kids with autism is difficult as their schedules are interrupted.  Staying with extended family is tough because the relatives don’t quite understand what can trigger a meltdown or tantrum.  Relatives are not usually aware of sensory issues or lack of communication skills my boys have.

In the last couple of years, we have started to travel with our boys.  They have learned to adapt well.  I have include them in planning, so they will know what to expect.  They usually look forward to the adventures.

This trip is without the kids.  Unlike most vacations, this trip has a purpose:  to see my Godparents, who are my mom’s brother and sister-in-law.  Too many years have sped by, and we are all much older.  Most of our time is spend sitting and chatting, catching up.  Not the type of activity that my boys could endure for long.  So, it’s just my mom and me.

photo credit:  Michelle Nicolai-Hoffmeyer

Champions: Everyone Loves A Winner

Cameron

Cameron’s baseball team won the championship 24-9.  That may sound as if Cam’s team had an easy win.  No such luck.  They worked hard and earned every run.  The game lasted 3 1/2 hours.  The boys played their hearts out.  Stamina, endurance, patience.  All paid off.  It was in the last two innings that Cam’s team brought the win home.  The other team seemed to burn out.

Their opponents were worthy. The score in the game was actually very close for most of the game. The lead switched a few times, pending who was up to bat. Suspense loomed.  No win was predictable. We were ahead. We were behind. Parents stood, clapped, and cheered. Then sat in disbelief and shock. Up and down. We got our exercise!!

Some of the umpires’ calls were debatable too.  That became a series of lessons of good sportsmanship. Even Cam’s run over home plate was a point of discouragement.  We ALL plainly saw Cameron touched home plate seconds before the ball came within reach of the catcher’s glove. The ump saw it differently.  Ouch.

The beginning of the season brought together a bunch of kids.  The team had one practice and then three scrimmage games.  This was a different league than Cam’s league of last year.  The kids were a bit older and experienced.  Poor Cameron had only one year of baseball under his belt. He was determined to be a good as the rest.

This was a kid who had to relearn how to walk and talk at 13 months. Cameron suffered a major set-back after the MMR shot.  He lost physical coordination, let alone communication.  I was very impressed that he persevered in this sport!

If the first few games were indicative of the season’s outcome, Cameron’s team should have been at the bottom.  They tied and lost.  And lost badly.  Throughout the weeks, they slowly improved.  Enough to put runs on the score board.  Enough to eek out wins.  Eventually enough to blow the other teams away.

I love what competition has taught Cameron.  Life is tough.  Not everyone gets a trophy.  Wins are earned through slow progress.  Spontaneous gratification is not a given.  Although we love the wins, they are not everything.  How the game is played is vital.  Teamwork is as important as individual effort.  Keeping one’s principles in tact is just as valuable as that win!!

Go, Cam!!

Stuart Moving Out

The mission of a mom’s love is to say good-bye.  Pure and simple, that is what a mother wants:  to raise her child to become an adult who can go into the world and be the best that he or she can be.  Of course, that is oversimplified.

My son, Stuart, has officially signed a lease for an apartment.  He’s moving out of the house.  Stuart is more than ready, yet not quite.  I don’t think anyone is really ready to move out.  The only full proof way to learn how to be on one’s own is to be on one’s own, like on the job training.

He’ll have to meet deadlines, plan his time, budget his money, etc.  Oh, and those choices.  He’ll have to make wise choices.  The School of Hardknocks is a tough one, but it employs one of the best teachers:  Experience.

Stu’s moving out is really a bittersweet moment for me.  Stuart was diagnosed with a speech delay in first grade.  The kindergarten teacher was the first to point out that Stu seemed to stray in conversations.  Mike and I had noticed some variances from normal conversation, but nothing really askew.  The most noticeable issue with Stu was his word choice.  He’d use a related word instead of the usual word.  For example, “How many pounds are you?” vs “How much do you weigh?”  I often wondered if Stuart will ever understand the proper words to use.  Will strangers be able to understand him?

His speech delay hampered his development of vocabulary.  He was very literal.  He understood synonyms, antonyms, and homonyms, but he studied them to understand the relationship of the words. When it came to homework, he had to work twice as hard as his peers to learn half as much. Nonetheless, he was always on the honors list.

At school, I met with teachers before school started to explain Stuart’s learning disability.  Because Stuart didn’t “present” any disability, most teachers would assume nothing was wrong.  Once I pointed out the issue, teachers would realize and acknowledge the unusual way he interpreted lessons.

When Stuart went to the junior high school, life became a battle.  With the change of teachers for each class, Stuart had to work even harder to maintain being on the honors list. The teachers denied Stuart had a disability.  Teachers even challenged the last psychologist’s report.  I had to go to the district level to resolve this problem.  Funny part of this was that the school psychologist who had tested Stu was now the head of the psychologists in the district.  When she called the junior high, I had no more problems.  For the most part.

Stuart decided he wanted to be home schooled for high school.  I tried to talk him out of it as my youngest was going into first grade–school for a full day.  I thought I might have some time to myself. HA.  Stuart presented very sound reasons for being home schooled.  Hence, he was home schooled all four years.  During his freshman year, he tested at par regarding his speech.  Thus, he had no more speech therapy.  Language-based classes were difficult, but he studied independently.  He also pursued and received a piano scholarship and earned his massage therapy license too.

He has completed his AA in business and is continuing his education at the local university.  He’s working two jobs to pay for his tuition.  He’s had a steady girl friend for three years.

Stuart is moving out.  I’ll still worry, but I smile.  Mission complete.

Michael Graduates

Michael and Brandy
My oldest son, Michael, graduated from college last weekend. Quite an accomplishment!  Like all of us, there have been obstacles in his path.  Not to be deterred, Michael has overcome them.  On his own. It’s taken a long time, but that doesn’t matter.  The end result outshines all else.
I used to think that the quicker a goal could be achieved, the better.  I was very young when I started college.  I was 16 and still in high school.  I crammed a four-year degree in 3 1/2. Hating school was a great incentive–get it over quickly. However, I applied the quick-is-better mode to a lot in life.

Autism has taught me that speed means nothing.

I have learned that getting there is just as important as an accomplishment. Throughout my son’s college career, Michael has been a role model for his younger brothers with autism.  He has been a wonderful, supportive son–offering reprieve when he sees me wiggin’ out.  I can’t imagine attending collegiate classes and being available to hang out with littler brothers or a crazed mother.  Michael has done it all.

I am a very proud mommy!
Congratulations, Michael!!! 
Michael and his cousin Yesi with diplomas

photo credit:  Yesi Russo

Happy Mama’s Day Surprise

“I’d love to receive beautiful flowers, tasty chocolates, even floating balloons and bubbly champagne,”  I stated emphatically.  Commercials say don’t buy proverbial flowers, chocolates, and the like.  I say, “Wrong!”  What’s wrong with flowers and chocolate?

Out with friends the other day, we were talking about gifts for weddings, graduations, and other occasions.  Mother’s Day came up.  I commented that I don’t need gizmos and gadgets.  Don’t need anything at all.  BUT IT’D BE NICE to be surprised.

My husband was there, and he paid attention!!

No, I’m not particularly materialistic; I don’t like clutter.  The less furniture and knickknacks, the less to dust and clean. When it comes to celebrating occasions, big or little, I don’t expect or want a lot of stuff.

I suppose I am a lucky wife and  mother.  My boys and husband know me well.  So they don’t get me anything huge (or anything at all sometimes).  However, this mother’s day, my husband surprised me with all–beautiful roses, bubbly champagne, chocolate covered strawberries, and a floating balloon!

Very thoughtful gifts.

…and there’ll be nothing left to dust!!

It’s Japanese To Me

Ryan and Jennifer, his Japanese teacher

For so many years I have had to figure out how to teach “normal” tasks to my boys.  My boys can do most of the normal chores expected from teenagers now.  As they have mastered tasks, of course, new goals are set.  To make life easier for me, I’ve encouraged the boys to pursue interests or classes that I had some background or experience.  Therefore, I could help them if necessary.  As the boys grow up, they are expanding their horizons, beyond MY comfort zone.  I can’t help them, and that is a good thing.

Ryan has developed an interest in Japanese. His interest has grown to include many aspects of Japanese culture.  I find myself listening to Japanese music. I dodge a swinging katana, a traditional Japanese sword, if I enter Ryan’s room.  He’s taken lessons to learn to speak the language.  He’s totally independent of me in this endeavor.  I can’t help him figure out anything if he’s confused.  So he has to think for himself.  Not a bad thing by any means.  But I have to stop myself from trying to help him.  So many years of MY programming as a mom with special needs kids have to be undone, or re-programmed.

My role of MOM continues to change as these young men with autism continue to progress toward independent life!

First Paychecks for Ryan and Nick

Ryan in his new role

Easter has come and gone, and so has the Easter Bunny.  Literally. Ryan and Nick’s jobs are finished as the Easter Bunny moves on, but not without some unexpected surprises.  Ryan was able to fill in as “The Bunny” when needed.  He loved it.  He liked to interact with the kids, but he didn’t have to talk!  A dream job for someone with autism!!

Saturday was also pay day.  Both Ryan and Nick received their first paychecks.  Smile they did.

This has been a wonderful learning experience for both of them.  They had to learn to speak up to get information.  They were guided on their duties throughout the few weeks.  Mike and I transported them to and from the job.  Sometimes they didn’t like the wait, so their driving becomes paramount now.

Tis one more step towards independence!  (Theirs and ours!!)

A Miracle?

“To one who has faith, no explanation is necessary.  To one without faith, no explanation is possible.” ― St. Thomas Aquinas

Four years ago I experienced an amazing event.  It’s a matter of healing and faith.  I can only describe what happened, and leave the conclusion to the reader.

About 17 years ago I began to lose function in my left hand. This greatly effected my playing the piano.  As the years progressed, pain accompanied the loss of action, and my right hand experienced the same loss and pain.  The type of pain was never consistent.  I eventually lost strength and the ability to hold things. Teaching the piano was coming to an end.  I couldn’t imagine life without music, let alone my livelihood.

My family had witnessed my loss.  I remember getting strange looks when I accompanied my dad.  I couldn’t hide my wrong notes as he sang.  Consequently, I stopped playing in public.  I used CDs and DVDs to aid in teaching my advanced students at the piano. At dinner my sons ran to catch their meal if I yelled, “Help!”  They did not like it when I dropped the dish full of food.  

In late 2009 I announced that I would retire in May, 2010.

Totally unrelated to this ongoing matter, something else was brewing.  The economy was bad, and Christmas approached.  Money was tight.  I tried to think of how I could put something out of nothing under the Christmas Tree for my young boys.  Something simple. I recognized I was not a creative person, but I refused to give up.

And I prayed.  Not necessarily for presents, but for my family.  I found myself praying the rosary.  Now to some, that may be an old prayer for old ladies or an outdated set of worry beads.  Oh well.  I decided to pray because it certainly couldn’t hurt.  This particular day in December I ended up praying all four sets of the rosary (20 decades).  I was stuck in the car all day, and I had plenty of time.

That night I felt such peace–indescribable.  Peace, nonetheless.

I liked that peace, so I dared to repeat the 20 decades of the rosary a few days later.  The peace returned that night.  Thus, a habit formed.

A month later, I met with a friend who was a priest.  He noticed I couldn’t hold my coffee mug, and I briefly explained my incapability of doing so.  He offered to bless my hands.  I accepted, but with the thought, “It couldn’t hurt.”  I was not expecting any great results.

I played for my niece’s wedding Feb, 2014

I continued my rosary daily, saying all the mysteries of the rosary.  I prayed for my family.  I never asked for any healing for myself.  Within a few weeks of the blessing, I noticed the pain in my hands and wrists had subsided.  Function returned.  As of April 16, 2010 my hands and wrists were pain free.  I had also regained all use of my hands.


The story doesn’t end there.  The summer of 2010 I found myself being offered a position as a pianist at our local church.  Four years later, I have full strength, no pain, and play more music than ever.

Getting The Job

Second day on the job

Who knew that a young, 20 year old woman with no college or special training could get my 19 year old, autistic son employed faster than a professional expert with college degrees and years of experience?

I am amazed and stumped that this is the reality for my son.  I have had several positive experiences with government agencies, but I’ve had just as many negative experiences. I find private enterprise wins again.

Here is an example:

Vocational Rehabilitation is a part of our state’s department of economic security.  We have been working for two and half years with our local voc/rehab office to help Ryan get a job. Well, not even a job.  Just ideas for a job.  Our first goal was to acquire opportunities to job shadow.  The experts evaluated and questioned Ryan at length.  To no avail.  Unless you count that their conclusion was for Ryan to work at a facility that was obviously for lower functioning adults.  


I protested, but I agreed to visit this place.  I went alone.  I had an idea of what I was to encounter because I had done some research on the internet.  However, I still was not prepared for the reality.  This facility probably was a blessing to the disabled employees who worked there, to provide meaningful work and a sense of independence.  However, this was not an appropriate place for Ryan.

I was appalled that the “experts” confidently recommended this place to my son.  I put experts in quotes because Ryan’s voc/rehab counselor used that word.  The exact phrase was, “We are experts who work with special needs adults to get them jobs.”  

I responded, “You may be an expert with special needs and employment, but you are not an expert in my son.  I am.”  I then added, “I thought we were a team.”  The counselor agreed, but it didn’t matter.  The job coach and the counselor were convinced that Ryan belonged at this facility.

My husband took Ryan to visit the facility.  The visit lasted less than ten minutes.  Ryan said that he didn’t belong there because he wouldn’t fit in.

I won’t go into the history of just getting to this point of having a job coach through the counselor.   I really thought that the professionals could help steer Ryan in finding a career.  I was happy that doors would finally open for Ryan to explore.  My sources were limited in getting Ryan to observe and experience various jobs.  Anyone knows that first hand experience is the best way to learn.  That is acutely needed for young adults with autism.  We had hoped that Ryan would be able to job shadow several jobs, ask employees questions, and experience Corporate America at some level.

But no doors were opened for Ryan.  Not until this young lady approached me and asked if Ryan liked working with kids.  Ryan and I both told the voc/rehab counselor this fact early on, but that didn’t yield any path.  So private enterprise found my son a job.  Correction:  my sons…

This experience illustrates that answers can lurk in the most unexpected places with the most inexperienced people.  An open mind and a willing spirit often provide the best opportunities.