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.

Sunday, March 31, 2013

Happy Easter

 The end of Holy Week culminates on Easter Sunday.  We celebrate the Risen Christ.  Lots of prayer.  Lots of forgiveness.  Lots of patience.

After Mass, we spent the morning at home, nothing doing but relaxing.  Mike spend time with the boys.  Then we went to my parents' home.  We spent the afternoon with family.  Saw extended family too.  Two new baby boys, my grand nephews.  My sons, particularly Ryan, enjoyed the babies.  The boys wasted no time finding the table full of foods too.
It is really enjoyable going to family events, celebrating holidays, birthdays, etc.  It's taken many years to get to this point.  Everyone knows the dietary restrictions of the boys.  My boys don't have major sensory issues that require close supervision.

We all go through major transformations.  Whether it's spiritual, mental, emotional, we grow.  I hope change brings us all to be more compassionate to each other.

Prayer, forgiveness, and patience describe a lot of my time, past and present, dealing with autism and related issues.   Today brings to focus what really matters, the reality of our lives, and our purpose on Earth.

God bless!  Happy Easter! 

Monday, March 25, 2013

Two Run Double

Cam in the official uniform on opening day
Cameron walks up to bat.

Bases are loaded.

Quickly, he faces the pitcher, with full count.  Ball is pitched.  He swings.  SMACK.  That ball flies.  Flies to outfield.  His fellow teammates run.  One scores.  The crowd cheers.  Then the next crosses home plate. The crowd roars. The outfielder finally throws the ball to the infield.  Cameron makes it to second base.  He is psyched.  Big smile on his face.

Tis the highlight of his day!

No one would ever guess this was a kid who loved to beat his head against the tile floor or cement ground.  It is so nice to hear the sound of the baseball making contact with a bat instead of Cam's head against the ground.

Cam and teammates--practice game
Cameron's team won. 7-2.  Celebration forthcoming!

In A Hurry To Go Nowhere



Working full time leaves little time for errands and tasks.  My weekdays are filled with the “job”, piano lessons, dinner, homework, and sleep.  Saturdays have become the” hurry to wait" day.  I have so much to do, and only Saturday to complete them.  I don’t like waiting in line, but that is the reality:  hurry to wait at the gas pump, the bank, grocery stores, etc.

People ask me what is wrong with doing something on Sunday.  Well, I need down time, and if the Good Lord determined that we needed a day of rest, who am I to argue?  (and I'm too tired to!)

So Saturday is the day to tend to household chores, cooking for the week, and running all those errands.  Last Saturday I woke up at 6 a.m.  No, I am not crazy.  After getting up at 6 a.m. all week, I didn’t need an alarm.  However, I didn’t get up for a few hours.
Up at 8am, I started grinding wheat.  Made sourdough.  Used up old sourdough to make pizza.  WIN.  The boys love pizza for lunch.  Pulled out meats to defrost.  Made small grocery list.  Went to one store.  Realized I forgot checks to cash at bank.  Went home.  Grabbed boys.  Went to next store.  Got gas.  Realized I forgot checks again.  Went home.  Went to farm.  Stopped at bank to get cash out of ATM—because I forgot the checks. Again.  Farm only takes cash.  Wait in traffic.  Construction on roads.  Wait.  Wait.

Then I arrived home.  Make dinner.  No, make 5 dinners.  With boys’ help.  Each of them is responsible for making dinner.  We freeze food.

That’s part of Saturday’s agenda.  I’ve left out a ton.  Can’t even remember the last half.  Except sleep.

Wednesday, March 20, 2013

Joining The Workforce--Again

Yep.  I am working full time again.  Life with autism isn't cheap.  Therapies, foods, doctors, supplements, etc. are expensive.  Insurance doesn't cover a lot of what we do.  However, the boys have thrived best with what insurance doesn't pay.  Figure that one!

SO the saving account is depleted.  The credit card balances are climbing.  A financial adviser would think that we are insane.  Nonetheless, Mike and I agreed long ago that we'd do whatever we could for our boys--to help them learn to be independent.  Money would not be an object.  Our boys are priceless!

The most expensive  item we ever purchased for the boys was the pool.  The doctors and therapists all agreed that a pool would be the best therapy for the boys.  We were not disappointed.  The boys learned to swim.  They played and socialized. They received their physical therapy in the pool for a few years. Now they hang out in the pool.

Getting back to work--I've been working at the same place for about six years.  It is seasonal, temporary, full time work. It's good to exercise my brain. I work on projects.  This current project is scheduled for five weeks.  I have worked here long enough to make friends.  The "regulars" are like a family.  Of course, as in all work places, some people are more important than others.  It is good to connect with these people.

Last year I had the opportunity to work from home.  It was great.  It was bad.  I loved being able to work at my leisure.  I actually took off to the beach last year, and I was able to work at coffee house, at the beach, or at any quiet place I chose.  The bad part was having to discipline myself to follow a work schedule--even if it was the schedule that I set.
 
After this project, I'll be able to pay off a credit card.  That is the upside.  The downside is life is more chaotic, but that is good for the boys.  They are learning to do things on their own.  I am always surprised as to what they have done.  Or not done.  I am not saying the surprise is always good, but yes, I am always "surprised".  HAHAHA  A good, no-- a great sense of humor helps in this realm.

Yes, I do look forward to payday!

Sunday, March 17, 2013

Autism and Religious Events

Grandpa as sponsor, Nick, Bishop Kicanas
Today Nicholas was confirmed.  In the Catholic faith, Nick is now a full member of the church.  Of course, that is oversimplified.  The point is that Nick understands some wonderful abstract thoughts.  He understands the important elements in life are not material.  Not black and white.

Happiness. Joy.  Love.  Prayer.  He gets these realities.

Many people advised me not to waste my time teaching my boys with autism about religion.  There were too many abstract ideas, and kiddos with autism will never, never get it.  In fact, it will only cause frustration and confusion for everyone involved.

Well, that is not true.  I won't go into how involved my boys are in their faith.  Not yet.  I'm not even sure I can describe that, as that aspect is a very personal, subjective observation.

What I do want to promote is that teen boys with autism can and do have a relationship with God.  Out of all my boys, Nick has demonstrated the most perseverance in his spiritual life.  Do know that Nick is not a  "yes man".  Nick has no problem expressing NO.  Nick can express if he doesn't want to participate in something.

So today is a day to celebrate.  This is a huge milestone in Nick's life.  It is a "headline" in the history of Nick's world, as the bishop indicated in his homily.  Today's event is a culmination of Nick's dedication and perseverence to his spiritual life.

This shows that the "experts" don't know it all.  This is a great example of such potential in these teens with autism.

Moral of the story:  Never underestimate the potential of the human spirit!

Tuesday, March 5, 2013

Autism and Grandparents: Inspiration

Grandma Lucia
I've often been asked how I constantly keep up with the demands of my life, especially with teens with autism.  My answer always includes prayer, supportive spouse, wonderful family and friends, etc.  However, there is one person who has inspired me before I ever heard of the word "autism".

My grandmother, Lucia.

She was an immigrant from Holland in 1912.  She was eight.  Her father had also moved to the USA a year prior to get established.  Then came the family via ship. The Titanic had sunk before their voyage, so that thought was constantly on her mind.  She was very happy when they docked.

She went to school, worked as a translator, and met my grandfather.  Their first date was a Fourth of July picnic at church.  They married.  She gave birth to ten children.  Ten boys at that.  No girls.  She told me stories of her boys.  Those stories don't always match my uncles' versions.  One uncle just smiled when I told him Grandma's version.  He just smiled.  Makes me wonder what really happened.

Grandma told me stories of her youth. Some were wonderful.  Others, not so much.  She emphasized a strong spirit persists.

As issues and conflicts arise with my boys, I often think of my grandma.  How did she muster the strength to keep going?  How many prayers did she say?  I have half as many boys, and quite often I am at a loss--emotionally, physically, etc.  Somehow my grandmother managed.

One of my last memories of my grandparents together was in their room.  They had chairs next to each other.  In the background were the pictures of their ten boys.  My grandparents sat next to each other.  They held hands.  They looked at each other.  They smiled.  My grandmother looked at me.  She winked and nodded her head at me.

Many years have passed.  I can still see her wink and nod.  She still encourages me.



Friday, March 1, 2013

Ryan WON!!

Ryan won his first tennis match yesterday.  It was also the first win for his team for the season.  YEA.

I am bummed that I missed it.  With the last minute schedule change, I couldn't watch any of the match.  However, Gramma made it.  She told me via text about the win.  I was very excited.

Then came some strange news from Gramma.

It wasn't Ryan who told her about the victory.  It was Nick.  Nick was ecstatic, and was sharing the news with great enthusiasm.  Ryan was quiet.

When we all arrived at home from our various activities, I asked Ryan about the win.  He acknowledged that he won.  That was it.  Nick gave a few details, again with enthusiasm.

I told Ryan that we don't need to celebrate.  He seemed ok with that.  I thought that would get a big reaction, like a "Why not?"  Nick did ask, though.

Then I explained.  If Ryan is not happy about his win, then neither are we.  Ryan didn't like that.  He tried to suppress a smile.  I immediately told him to smile.  "DO smile.  It is worth celebrating. This is BIG."  Again, he tried to suppress a smile.

I ended up showing him a picture of him when he was quite young.  He had a happy face, a big smile.  He was genuinely happy.  I said, "That is you smiling.  That is you happy. It's ok to show it."

He dared a small smile.

I told myself--baby steps.  He needs baby steps.  I don't understand why he doesn't want to smile or talk about his win.  But he does need to know it's ok to smile.