God, Family, Work

Via my distant cousin/relative Nick Ball:

Our family is a classic one of hard working immigrants, who got the “American Dream” by putting God, family, work in that order. Then working everyday to make it happen………no one gave our family anything. Everything they got and passed to us, was not luck but hard work.

I wish every history and social studies book in America had that statement engraved in the front pages.  Life has no guarantees.  No handouts either.  Government entitlements can be given.  Or taken away.

I tell my sons with autism quite often that they can’t count on federal or state funded programs to be available forever.  Budget cuts, bad economies, political polls, etc can determine what becomes important and then switch within seconds.  My sons must be able to survive ultimately by their own devices.

So while it’s hard to see them struggle through life’s hardships, it is a necessary lesson.  Again, my cousin states the lesson well:  

Everyone wants to help their kids. I see no problem in this, but making it easy for them just makes them dependent on Mom & Dad or the government instead of themselves. No one likes to see their kids struggle. But it is in the struggle that the true character of what they learn from home comes into play and benefits them in the long run………..Doing too much for your kids handicaps them in life and since things come easy if given, the incentive to work hard is destroyed……why work? …there is always Mom and Dad or Uncle Sam!

This applies to all kids, so it’s that much harder for our kids with autism to face life, or as my son Nick (not to be confused with cousin Nick) puts it, he has to face the real world.

Thus, the priorities are set:  God, family, work.

Drums–The New Music

Nick teaching Cam

We have more music in the house. A drum set found itself in our living room on Christmas morning.  We purchased it for all the boys, but we suspected that our youngest two would play it the most.

Nick took no time in breaking in the drums.  His first “at play” is below. When Nick was done, Cam exclaimed, “Whoa!!” He bent to see how big a dent Nick had put in the cymbals.  Oops.

I thought we had purchased a drum set for beginners.  After listening to Nick play, I asked him where he learned to play.  He replied that he had just watched and listened to his friends during band at school.  Nick seems to be natural.

The black set is sleeker in appearance than the pots and pans that they banged on in former years, but the noise is just as loud.  Within two days, we moved the drum set upstairs, knowing that it was a temporary fix.  I expect it’ll take a few months before we find a permanent home for these noisemakers.

I love seeing Nick’s face light up when he plays.  Lately, he’s been improving and trying different rhythms with syncopation.  Quite an outlet for him!

  

Teamwork–Getting Along

Nick, Ryan, Cam working on a crossword puzzle

Although the younger boys all have autism, they are extremely different.  They have their own strengths and weaknesses, just like everyone else.  Together, they create an invincible team.

One of the life skills we have been working on is team work.  There is not much in this world that doesn’t require working with someone else.  Whether it’s going to the grocery store to buy food or see the doctor in his office, effectively communicating with others is simply a necessity.  Hence, teamwork.  If my sons can work together to solve a problem or finish a project, they can accomplish whatever they wish!

Not an easy task when teens with autism don’t like to talk.  OR when one likes to talk a lot.  OR when one wants to talk but can’t quite articulate his idea.  Each one of these ideas represents one of my sons.

I don’t let them quit.  That is critical.  They finish what they start.

It helps when the project is dinner.  If they finish, they get to eat!!  An empty stomach is a great incentive.

Beach Days Of Christmas

Nick and Cam 

The remaining days of the Christmas season our family journeyed to the beach.

In January, the beaches are not crowded, yet the fun remains.  The boys run along the coast, and sometimes they swim.  Mike and I walk to the local pier, talking about anything and everything.  Our family gets a chance to relax and unwind.

Mike

The fog greeted us the first day, but the following days were sunny and brisk.  The apparel varied from jeans to shorts, pending if the sun decided to hang out.  The guys decided to go whale watching while I enjoyed some quiet time. Then we dared outside dining–complete with heaters.

Nick

We rarely plan the entire trip.  We like having down time, and the boys need practice with spontaneity–a difficult concept for teens with autism.  So as the whim of an idea catches us, we may do it.  Or not.  No matter what, the best time is the time on the beach.

Cam

Money, Money, Money

Last Monday, I spent the morning with Nick at our local coffee shop.  It’s one of the few places where the employees know Nick by name, and he feels very much at home.  (Not to mention, coffee is gluten free.)  Nick can relax and chill. As a consequence, I never know what surprises lurk here!

Today was no exception.  Nick surprised me with his understanding of abstract concepts of money, and he totally perplexed me with his lack of understanding of money.

First, the cerebral concept:  he has to pay for his own coffee.  Well, he doesn’t have a job.  Yet.  With his school load and extra curricular activities, he has no time for a job.  My husband and I want him focusing on anything related to schooling. So he surprised me with his comment, “I can’t waste my money on coffee like I did last year.  I like coffee.  I need a job, Mom.”

Quite simple and straightforward. Typical for a teen with autism.

How does a mom explain to her son with autism that there are only 24 hours in a day, and he is already using them all?  I used a diagram to illustrate his activities and the lack of hours for a job. That didn’t stop Nick.  He wants to earn his keep–a concept my husband and I have taught all our kids.  My only solution was to offer Nick jobs around the house for some extra cash.  AND he could get a job over the summer.  “Great!!” he exclaimed.  I am THRILLED that Nick understands the concept of money–earning it, spending it, saving it.

Then came Nick’s lack of understanding.  He used a debit card at the coffee shop for the first time.  He swiped his card and got his coffee, “Cool!”  He took his receipt, and I logged on to the bank website so he could see the transaction.  He looked at me with confusion.  Money was missing from his account.

When we opened his bank account, the banker explained the debit card.  Nick said he understood. Obviously, he didn’t.  I showed the amount to be debited from his checking account via his receipt, and he looked at me with total dismay?  “I have to pay my debit card?” he inquired.

I shook my head yes.  “The bank will give this money to the coffee shop.”  Nick didn’t like the idea of his money going out of his account.  He understood cash, but this electronic thing was confusing him.  He responded, “You’ll teach me this money stuff?”

I reassured him I would.

I couldn’t believe the complexity of monetary ideas:  one moment I was surprised that Nick understood the idea of earning his own money to spend, yet the next moment I was astonished that Nick didn’t understand the idea of a debit card.

Knowing Nick, he’ll learn this lesson quickly!!

On The Second Day Of Christmas

We went shopping for some new items for the Christmas Tree.  We also purchased wrapping paper and Christmas cards.  Why now?  I like the 50% discount off the regular purchase price of these items!!  I usually send out cards after Christmas, and I’ll use the solid color wrapping paper throughout the year.

We started celebrating the 12 Days of Christmas several years ago for many reasons.  I’ve blogged the whys and wherefores in years past.  I will reiterate the main reason here:  it is much easier for kids with autism to handle.  Less is more.  The less to process, the more enjoyable for all of us.

We stretch out the gifts and activities for 12 days.  That might sound expensive, but it really isn’t.  We have a box for each day, and the gift is for the entire family.  For the next two weeks, we’ll spend more time together.  The gifts are usually simple, but a few might be extravagant.  They always focus on family.

Best way to spend our effort, time, and money:  family!

Best Christmas Gift: All My Sons Together

Nick, Stuart, Ryan, Cameron, Michael

Not exactly a Christmas photo, but it was taken a week ago.  They had planned a garage sale together.  They all contributed in some manner, and they split the profit.

I don’t get to see my boys together very often.  Mike moved out a decade ago, so activities that include all of them are rare.

I enjoyed seeing them work as a team, and getting along.  So many times I hear that siblings don’t get along, especially when special needs like autism are involved.  Best Christmas present a mom could ever get!

Merry Christmas!

Lessons With My Granddaughter

Last Saturday, I spent some time with my granddaughter.  She was diagnosed with autism when she was three, and I was curious to see how she was progressing.  We decided to hang out at a coffee shop.  At first she was quiet.  I asked her simple questions. She responded with one word answers. Typical for a youngling with autism.

We decided to go Christmas shopping for her mom and dad.  I asked her specifically what she might want to give to her parents.  After some thought, she replied, “Nail polish for Mom, and a I-pad for Dad.” The I-pad was out of my budget, but with the idea of nail polish, we started shopping.

I asked her if she knew where we would find nail polish.  I realized that I had no idea where to begin to search.  My darling little granddaughter took charge.  She was hysterical.  “Come on, Grandma.  This way.”  It became obvious that my granddaughter was not too sure where to go either, but we admired a myriad of delightful objects as we walked.

We actually wondered through several aisles before finding the right place.  She acknowledged, “Hair stuff.”  She slowed her pace to look at the barrettes, combs, and headbands.  I inquired, “Do you like this stuff?”  She looked at me like I was from outer space.  Her response, “Yes.  Of course!”  She began a dissertation on what the items were.

I was surprised at how many different things there were to adorn hair.  My granddaughter touched every item she could reach.  Some were sparkly; others flowery.  We slowly made our way to the nail polish aisle.  Again, I was surprised at the variety of brands, let alone colors.  I just don’t have time to pursue hair and nail paraphernalia.

My lack of knowledge bugged my granddaughter.  She gave me lessons in “girl stuff”. In her words, “REALLY, Grandma!! (Sigh.) This IS what girls like. Sheesh.”  I laughed.  I didn’t know this “stuff” could be fun.  She picked out one color for her mom, and off we went.

So I need to continue my lessons with my granddaughter.   SHE is what made this lesson FUN.

Tumor Is Benign–Again–Yea!

Surgery went well–for the second time.  Tumor was benign.  Deja vu, but this was no illusion.  I will have two scars to prove that fact; they almost make a lightning bolt.  The question now is how to move forward.

All my boys are aware of my predicament–trying to reduce stress, and occasionally they try to make life easier, lighter, or happier in some way.  For example, we grind our own grain to make our own sourdough bread.  I found this smile in the flour, courtesy of Ryan.

I cherish these silly moments!   

Nicholas in Hawaii

Nick greeted with flowers at the airport

Nicholas and Dad (Mike) are in Hawaii!  What a year it’s been to get them there.

We found out last February that the marching band at Nick’s high school was selected to represent the state of Arizona in Hawaii for the Pearl Harbor Memorial Parade.  Each ship, boat, or sub that was destroyed in Pearl Harbor on December 7, 1941 has a representative marching band in the parade.

What an honor!! These bands are selected based on competitions.  This year Nick’s high school band placed third in the state competition.  Tons of hours practicing.  The band meets at 6am every weekday morning before school.  Then they have evening practices and weekend performances and competitions.  BUSY.

Marching in parade

Then the fundraising to get Nick there.  The school had several fundraisers, volunteers asking for corporate sponsorships, and families donating.  Nick wrote many letters to family and friends to help contribute to his account.  So this endeavor is the result of many.  MANY.

Once funding was successful, another contingency surfaced:  supervision.  We did not trust anyone with our child.  Sensory overload, dietary restrictions, and anxiety attacks are not to be left with any adult.  Mike and I had no idea how Nick would react being on a plane.  Personal space and tight quarters are not easy on anyone, let along a teen with autism.

I brought this up with the band teacher, citing the IEP accommodations and modifications.  The only acceptable solution was for Mike to be a chaperone.  I was told that “the IEP would be taken into consideration when choosing chaperones”.  That did not give me any consolation.  Then came the email from the band booster president that a lottery would be held to pick chaperones.  I was completely on edge then.

After several correspondences with the band teacher and Nick’s case manager, I made it clear that the only person who would be appropriate to help Nick was his parent.  A fellow class mate or another adult would not suffice.  ESPECIALLY if some emergency happened.  They couldn’t just call us, and we’d be there within minutes or even hours.  This was a safety issue.

I am not sure what conversations were held on Nick’s behalf when the selections of chaperones were picked.  When the list was publicized, Mike’s name was on it.  Relief.  Now we had to come up with the funds for Mike.  As always, money was not going to stop us from pursuing something that would benefit Nick.  Lots of prayer and faith in that department, and the funding has materialized!!

So Nick and Mike are on an experience of a lifetime.   Yes, there’s a lot of “behind the scenes” that I did to help make this work.  Lots of mental preparation for Nick.  Not just band practice.  Practice sitting in close confinement.  Practice talking softly.  Practice…

I think the effort is worth it.  Nick’s smile says it all!