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Thursday, February 28, 2013

Crime and Punishment

Andy is 20 years old; he's 5'11"tall and weighs a tad bit more than I do.  He's bigger, stronger, but not exactly smarter than me- Thank goodness!  Don't get me wrong- he's one smart cookie- but he's not "Mother of 3 kids" smart.

Andy has gone through cycles of behaviors over the years.  His level of naughtiness depended on is age.  His level of defiance has increased with his size.  Sometimes he only needed to be threatened with "Wait until your father gets home".  Recently he evolved to losing his TV, computer, or his beloved chicken nuggets for a certain period of time. 

Andy use to comply with my demands simply because I was the mom.  Slowly, he grew to dislike and balk almost any request I made:

Me:  Andy, would you please pick up your dirty laundry?

Andy:  MOOOOooooooom! 

Me:  Andy, you need to take a shower.

Andy:  Are you KIDDING me?!

I could go on and on and on....

No matter what- if my husband had to intervene- compliance was guaranteed.  One word from John and Andy snapped into action.  Usually with a gusto and positive attitude I could only hope for. 

Lately, Andy has decided that Dad isn't in control either.  I've lost my back up!  John lost the ability to jokingly say to me "I don't know what you're complaining about.  He likes me just fine!"  He is now feeling as powerless as I do.  (Ha- take that Super Daddy Man!)

About a year ago, Andy became mad at me while I was in his room.  He yelled, carried on, and finally backed me into the hallway- slamming the door in my face.  It was a battle I wasn't prepared for and his size and volume took me by surprise making me back away in retreat. 

He lost all technology for 2 weeks as punishment for being so nasty to me.  It was 2 long weeks of crying, begging, yelling and discussing why he was being punished at all.   It took months for my word to have any meaning again and he repeatedly tried the physical intimidation game.  It felt like I was staring down a grizzly bear with only a feather in my hand.

With time and standing my ground- 8 times out of 10- I'm in charge again.  Andy's older sister and younger brother don't always understand the 'dance' I'm doing.  I try to pick my battles with each of them.  Some things just aren't worth the fight.  Other situations call for confrontation.

More than once Andy and I have gotten into a verbal squabble in front of them.  Both Kelsey and Mike have tried to step in to stop Andy from taking swing at me (or so they think he's going to swing).  I first have to stop Kelsey (or Mike) from intervening. Then I must finish up with Andy, and finally try to patch things up with Mike (or Kelsey).   

If I let Andy win again, I don't know how long it will take me to regain control, power, or authority!  They fear for their mother (it truly touches my heart that they care enough) and they sometimes believe I might let Andy get away with murder. 

He's a 20 year old autistic man.  He is verbal.  He has definitive likes and dislikes.  Most people his age have had significant relationships, driver's license, Independence, and a life beyond high school.  Andy has one more year of school (or vocational training).  Someday he will live outside our home (assisted living facility, group home) and he will have a job that stimulates and challenges him daily.

Andy has typical/atypical growing pains!  (If someone has written a book on this- please send me the title)

Now, how does one get creative with a 20 year old man who wants to have some control in his life?  I've been pondering this for months.  I've decided that the old adage "The Choice is yours- make it a good one" is something I can work with.

Apparently I've been punishing bad choices and behaviors for too long.  It has been probably a decade since I tried to consistently reward the good choices. 

I'm switching things up.  Instead of focusing on the negative- I'm going to encourage the positive.  I'm making a chart to display on the fridge.  I'll place daily tasks, chores, expectations to be marked off by Andy.  I'll set reasonable goals to achieve a reward.  I'll have a variety of rewards to earn.  The boy loves McDonald's, movies, and Schleich animal figurines. 

I'm tired of fighting with him.  I'm sure he's sick of me fighting with him.  Something has to give- but it can't be my authority.

Wish me luck- maybe one day soon he'll appreciate his mother again. If I'm really lucky- John won't be able to mock me with his Super Daddy Man status!

Friday, February 22, 2013

Cancer Sucks

It has been a flurry of activity the past week here. For once- none of it revolved directly around autism.  I've often wondered what God's plan was. Why did I have autistic children? Why me?

I recently had a personal epiphany after 5 days of biopsies, surgeons, oncologists, genetic counselors, and cancer care coordinators. I realized that over 20 years I have developed valuable skills raising my special children that will be hopefully be helpful as I help my husband's family cope with their mother's diagnosis of breast cancer.

Aside from having a very flexible work schedule, and the convenience of his parents living around the block, I have a degree of separation. She isn't the mother I've had all my life, I've simply had the pleasure of having her in my life for the last 26 years.   She is truly a gem of a woman.

I am the daughter-in-law. Not the mother this time. I remind myself of the differential daily. It gives me a level of comfort and apprehension. I want to be supportive and useful beyond running errands and cleaning.  I want to be at every appointment, treatment session, meeting. I want to be the pillar of strength my Mother-in-law was for me back in 1997 when we told her about about her grandson's autism. I don't want to get in the way.  I desperately want to be helpful, considerate, and available to my husband and his family.

When we were going through the discovery years of autism, knowledge was valuable but hard to come by.  Every decision seemed reactionary and not preventive.  We never could anticipate what quirk, habit, or problem was around the corner.   Once it presented itself, we made corrections.  You had the basic generic diagnosis of autism, but every day we created our own definition of what autism was in our household.

Cancer is very similar.  Knowledge is power but not specific enough to guarantee a positive outcome.  You try something and react with medicine and treatments if problems arrise.  You can't predict anything.  You have the generic diagnosis of cancer, but what happens next varied by each individual.

In "autismland" we had specialists, therapists, friends, books, and medications to help.  We learned as we moved forward- what worked, and what didn't work. 

In "cancerland" we have specialists, therapists, friends, books, medications and surgeries (when possible).  We turn to the specialist with their statistics and trials- and pray we are on the right path.

The only difference between Autism and Cancer is that the latter can be....fatal. 

Cancer mirrors Autism in ways I've never anticipated.  Each person has a different presentation, prognosis, treatment, and reaction.  Each person has a different level of acceptance, disposition, outlook, and hope- much like autism.  This applies to the patient and the family.

My mother-in-law makes Pollyanna look like Lurch from the Addams Family!  She could find the good in an axe murder, a hurricane, or an earthquake.  She finds the sunny side to almost any situation and she will support you until you finally see the light at the end of the tunnel.  She makes the world brighter and happier to be in.  She fits every cliche' about looking on the bright side- and sometimes it drives me nuts!

I have two wonderful sister-in-laws.  They both live in Florida.  Mercifully, they were both able to visit this week and be with their mother and father.  They are both fun and loving people.  It is a thrill to sit at the table with them all as they laugh, tell stories, and share their lives.  I hope to be a person they can come to if they have questions they don't want to ask their parents.  I want to be their rock of knowledge and an extension of their love towards their mother. 

Over the years I have learned to challenge experts when I feel it is necessary.  I've mastered the art of thinking 5 steps ahead.  Positive or negative- I try to be ready for every possibility.  I've discovered the confidence to ask questions in spite of the fear of hearing a disheartening answer.  I plow into hard situations like a bull- if you can't help me- get out of my way. 

The internet has made information more available. I find that if you look at 12 different sites you will find 27 different theories or suggestions.  It is that way for autism and cancer. Both are a kind of crap shoot.

My children handled to news of their grandmother very well.  Actually, we've only told Kelsey and Michael.  We won't have to tell Andy until Grandma starts to loose her hair from chemo.  I'm anticipating the first thing out of his mouth will be something like "Grandma, what happened to your hair/eyebrows." 

Michael addressed the elephant in the room the first time he saw his Grandmother in person after we had told him the news.  "Well Grandma, I know you are going to be healthy again, but you are going to look really weird without hair."

We have a long road ahead with Grandma's diagnosis.  She has always been our pillar of positivity and optimism.  As with any family, this type of situation shakes everyone to the core.  I feel the urgent need to be the first to stand back up and offer support to everyone else.  Much like my mother-in-law did for me all those years ago. 

Autism has taught me a valuable lesson...how to be a pillar. 

I now have the answer to "Why me?" 

The answer is: "Because someday you will have to understand 'Why her?' and help them all."

Cancer sucks...

 

Thursday, February 7, 2013

Economic woes (and) 10-4=6

In both of our families, teasing is a form of affection.  Old stories of what you have done or said pop up years or decades later.  Someone manages to use it in a way you never saw coming.  I refuse to share some of the stories my family has used against me, but instead I will share two stories of things I have done to my children.

When the economy started to nose dive, the news channels seemed to be constantly talking about companies downsizing their workforce.  Sitting down as a family for dinner one night I started a conversation with...

Me:  Your father and I have been talking.  Due to the economy being so bad right now, we've decided we are going to have to let one of you kids go.

The 3 kids all pondered this for a split moment, John snorted into his glass of water, and suddenly Kelsey and Mike were trying to yell over each other...

Kelsey: (pointing to her brother)  It's gotta be Mike, he was the last one in!
Mike: (standing up from his chair)  Kelsey is the oldest, she's been here long enough!

We all cracked up- except Andy who sat in silence while the gears ground in his brain...

Andy: Huh? 

This is the essence of my family wrapped up in 15 seconds!

On to the second story...

John and I agreed early in our marriage that we would never be that couple who added a year to their wedding anniversary to convince our children that we hadn't gotten pregnant before we were actually married. 

We once went to a surprise 50th Anniversary party.  The couple of honor walked in and were surprised alright- they looked at their children and said it was only their 49th anniversary.  Apparently they had forgotten their fib decades earlier.  As the parents and children stood in front of the crowd- everyone started to do the math...the laughter lasted for 3 minutes!

Kelsey was probably 12 or 13 when the topic came up. She was talking about a recent class where they had discussed pregnancy, abstinence, and birth control.  Then she looked at me and asked:

When did you and Dad decide to have kids?

Me: (GULP!)  Well, your Dad and I dated over 4 years before we got engaged.  We were hoping to buy a house before we had kids.

Kelsey:  But we just bought a house last year?

Me: Yeeees, children are costly, and your brothers' medical bills put us behind for many years.

Kelsey:  Then why didn't you just wait?

(The gig was up, I had to swallow down my parental fears and admit the truth- gently)

Me:  Kelsey, we were married in 1991.  What year were you born?

Kelsey: I was born in 1991 too.

Me: We were married in April- the 4th month of the year.  What month were you born?

Kelsey:  October, the 10th month.

(Pause while she is processing...nope- she isn't getting it yet!)

Me: 10 minus 4 equalssssss.....

Kesley: 6

Me:  Okay, so how many months does is take to grow a baby? 

Kelsey:  9 months

Me:  And you remember that you were very late, in fact you took 2 full days to be induced...

Her eyes got as big as saucers as she realized what I was saying.  She finally realized that I was 3 months pregnant with her when we actually got married. 

Me:  You were the best oops in the world!  Your father and I were so excited, everyone was excited! Actually, you were only my first oops.  Andy was a surprise too.  We hadn't planned to have you two so close together.  But- eh, things all worked out- didn't they?

Kelsey:  Well what about Michael?

Me:  Well Michael was a bit different.  You and Andy were about 2 and 1 years old.  We knew we had wanted three children total...so we decided to try and we got Michael just before you turned 3.

Kelsey: Oh, okay....

Me: So you know what that means?

Kelsey:  No- what?

Me: Well you and Andy were surprises- wonderful surprises.  Michael was planned... so what it all really means is that we really only love Michael!

Kelsey: (laughing) Jeez Mom- I already know that you love him the most!

We got a good laugh over it.  Once again, humor saved the day.  I do love all my kids- planned or not.  I wouldn't trade one of them for the world (most days).  I didn't ruin my daughter with this tease, and I didn't break my promise not to lie about my anniversary.  John's parents celebrate 50 years of marriage in April of 2016, we will celebrate 25 years together 3 days later.  Should be a good party!