"Look At Me"

"Look At Me"
monotype and screenprint

Thursday, August 23, 2012

On Being an Adult

I would like to know when the turning point is.  You know?  The moment you actually become an adult.  I don't think it's when you turn 21.  And I don't think it's when you get married.  I don't think it's when you have children, either.  Because I know plenty of people who think parenting is a second job. 

I'm not sure when it happened to me.  I don't know what day I became an adult.  I think it happened gradually.  But suddenly I woke up and realized that I was putting my children's needs in front of my own.  Is that a normal mom trait?  But something has definitely changed.  I automatically think of my children when I make any kind of decision now.  The carefree, "crazy", spontaneous person I once was is long gone.  I see glimpses of her now and then, but the person I see in the mirror has witnessed things that have forever changed me.  And there is no going back. 

As I child, I longed to be an adult because of the freedom.  Yes, I said that right.  The FREEDOM.  I wanted no rules and to be able to do as I pleased.  I wanted to travel the world.  Funny--I don't take my kids farther than Omaha. 

I remember in college staying out until the wee morning hours and worrying about things like getting good grades and meeting "the man of my dreams."  I actually cried when I got my first B at the end of a semester.  Lord, if I could return to those days...

I've been taking care of a four year old with a 103 fever all day.  My son has been clingy, weak, and alternating been cuddly and frustrated all day.  There is nothing like fear and worry to make you take stock of what is important.  Health and Life.  They are oh, so precious. 

When you are a child, you don't realize how painful adulthood is going to be.  You don't realize just how many people that you love and care about are going to have to deal with things that are impossibly difficult.

A friend of mine lost a child to a heart defect.

Another has a child fighting cancer. 

Yet another lost a child to an unbilical cord accident--her baby had a heartbeat one day and the next day her baby was gone. 

And another friend had a baby with acrania (a birth defect where the skull doesn't develop correctly)-- my friend knew during pregnancy that her daughter would not survive outside the womb, yet she chose to carry her to term anyway for the chance to hold her daughter for a few moments. 

Two of my friends have children with cerebral palsy. 

And the number of my friends who have kids with autism?  Grows daily.

What makes someone an adult?  Is it compassion?  Is it being able to handle suffering and pain with grace?  Is it the outward appearance of strength when what you really want to do is fall apart?  Is it being able to multitask like a queen?  Is it juggling IEP meetings and packing lunches and keeping track of ABA schedules and getting the kids to school on time and somehow--SOMEHOW finding time to take a shower?  Because I guarantee you--every single one of my friends deserve a medal. 

I miss the carefree days.  I'm not going to lie.  I miss sleeping in and being able to drive to Denver on a whim.  But I wouldn't trade my kids for the world.  Not even when they are sick and vomiting all over me.  Even on the worst days, my sons reach up their little arms and want hugs.  They still call me "Mommy," which is the best title I've ever had.  I still get the privilege of being the most important person in their world--for at least a few more years.  I'm the one who makes "owies" go away with kisses, the one who chases away the boogieman at night, and the one who can comfort them when they are sick. 

I guess being an adult isn't so bad...

Sunday, August 19, 2012

Subtle Reminders

Yesterday I tried to "get away" for a little while. 

The husband and I went to see The Dark Knight Rises in the afternoon.  We decided to go to the 3:40 showing to avoid the Saturday night crowd.  The theater was pretty empty.  I'd say there were maybe 10 people tops.  We got to sit pretty much where we wanted.  So we picked a spot smack dab in the center, a few rows up.  It was ideal.  Almost. 

A few rows ahead of us to the left, a mom and a daughter were sitting.  I think the little girl was maybe 8 or 9?  And she had an obvious disability-- I'm guessing cerebral palsy.  She didn't have complete control over her body movements and now and then during the movie (especially when she got excited), the little girl made noises and squirmed in her chair.  The mom kept shushing her, and I wished I could send her some kind of mental signal saying, "It's ok!!!  She's not bothering anyone! If someone says anything to you, I'll come to your aid--I'm in the club!!!" 

No, I do not have a daughter with cerebral palsy.  I have no idea what that mother goes through on a daily basis.  I'm sure she has challenges far different than the challenges I face.  But there is an undeniable bond between parents of children with special needs.  We have fought similar battles.  We know what it's like to be stared at in public.  We have been in more doctor's offices than we can count.  We worry--A LOT.  We cherish things that others take for granted--like walking, and smiles, and eye contact, and words, and being able to write letters...

No, the little girl in the movie theater didn't bother me at all.  I thought it was awesome the mother TOOK her daughter to see a movie.  I also loved it, because it reminded me of Derek.  Derek can't sit through a movie in a theater yet.  YET.  (I cling to the hope that someday he'll be able to do things like eat at a restaurant and go to a movie.)  And when the mom pulled the little girl into her lap at the end of the movie because she got squirmy?  I loved it even more.  The mom kissed her daughter's head and you could physically see their love for each other.  I had to fight tears.  Then when the movie ended, she carried her daughter out of the theater like it was no big deal.  We exchanged a few words, and I wished I could tell her about Derek.  Instead I just gave them both a smile. 

My brief "get away" wasn't all I'd planned--it was more. 

Monday, August 13, 2012

Changing the World

“Our lives begin to end the day we become silent about things that matter.” ~Martin Luther King Jr.

When I was in high school, I visited the Holocaust Museum.  It haunted me.  Years later, I still remember the pictures I saw and the stories I heard.  I remember toothbrushes and striped clothing, wooden bunks where people slept, and the smell of a boxcar that carried travelers to concentration camps.  I remember a huge hallway filled to the brim with pictures. 

But what do I remember most of all?  Shoes.  One of the rooms had a huge pile of shoes.  There were shoes of all sizes, that had been worn by children, Jews, Poles, Romanis (or "gypsies"), disabled people, homosexuals, and Jehovah's Witnesses.  The shoes were brown and of course, they smelled a little funny.  But when I saw the shoes, it hit me more than ANYTHING ELSE that the Holocaust was real.  It had happened.  Human beings, just like you and me, had worn those shoes.

Shoes at the Holocaust Museum

I've heard people say that the Holocaust can't happen again, that things have changed.  Or worse yet, they say that the Holocaust never happened at all. 

I read this on another fb page the other day and I HAD to share.  The page owner did NOT write it; somebody shared it on her page.  It scared the crap out of me.  In this day and age, ignorance and hate still exist.  I'm changing names for obvious reasons...

 Posted on the wall of Single Mothers who have Children with Autism

So-and-so wrote:

Can I share this with you guys? Enjoyed interviewing someone today for a nanny. She seemed really nice. Toward the end, she said, "I feel like I can tell you this because John's* adopted and you won't be offended. My pastor and I have a theory that children with autism and other challenges are the children whose ancestors have committed gravely sins." I said, "I'm offended that you and your pastor are ignorant and feel sorry for the child you ever care for." Then I think I said WTF and other choice words. I don't remember much after that. It's all a blur. The position is still open.

Anyone else heard other bs "theories" like this one? I wanted to punch her.

*Name has been changed

Anyone who meets my son loves him.  He is beautiful and innocent and full of smiles.  The fact that there are still people out there who think like this terrifies me.  One person can change the world.  Look what Hitler did.  I thought about not saying anything about the above post, but it's not in my nature.  As Martin Luther King, Jr. said, “Our lives begin to end the day we become silent about things that matter.”

I don't blame this mother for getting upset.  Not in the slightest.  When it comes to Derek, I am a protective mother bear.  I see RED if anyone even implies that he is anything less than the wonderful human being I know him to be.   

I don't know how many of you remember what happened back in January?  There was a person trolling fb pages and stealing pictures of special needs children.  Then he was posting the pictures on his page and saying in the captions that these children should have been aborted.  He made one comment that cut like a knife.

Under the picture of a child with autism he wrote that the child was a "cum-stain that should have been aborted."

Obviously, words like this are not easily forgotten.  (I still don't think I've fully recovered...) 

There was a big uproar in the special needs community after this and many pages pulled their pictures in order to protect the families.  I DID NOT.  I gave families the option to NOT be in the project if they wanted, but I felt that if I removed the pictures, I was letting the person win.  My goal with this art project has been and always will be to make the world see that autism is beautiful.  

Having a child with autism is not easy.  Some days, it is the hardest job on the planet.

But I would not change things. 

I do not believe that Derek should have been aborted.  Nor do I believe that he is the result of some grave sin I committed in my past.  If anything, Derek is happiness and love embodied in a human

If one person can change the world, than maybe (just maybe) it's my son.  Maybe Derek will continue to improve and someday be verbal enough to become a public speaker like Temple Grandin.  Maybe he can make a difference.  Maybe he can be a shining light in a world of hatred (because let's be honest--Derek doesn't know HOW to hate). 

Maybe Derek can help make sure that there is never again a pile of empty brown shoes...

Sunday, August 12, 2012


I'll be completely honest.  I spent a good chunk of my weekend either swallowing a lump in my throat, fighting tears, or crying.  Don't get me wrong, I laughed a lot too, but today?  I'm exhausted and emotionally drained.

When I got married (almost 8 years ago), I had plans.  Lots and lots (and LOTS!!!) of plans.  No, I didn't want a white picket fence and 2.5 children and a dog or any of that nonsense.  But I wanted to be SUPERMOM.  I wanted to be like my parents.  Looking back, I realize just how incredible my childhood was.  My parents let me and my brother and sister explore so many different activities.  I was on the swim team.  I did gymnastics for a while.  I had piano lessons.  I think I even tried soccer and t-ball when I was really young.  We went to Disney World and the beach and out for ice cream.  I even remember getting up early to recycle cans with my dad.  My mom taught me how to sew and I learned at a young age how to make pancakes and eggs.  What does all of that equal?  Time.  TIME.  Whether we were in the car or spending time as a family--I didn't realize how lucky I was. 

So I wanted to be that kind of a parent too.  I wanted to be able to sign my kids up for sports and teach them how to do things and take them on trips.  I wanted to be INVOLVED in their lives, so that later on in life they could look back and say, "My mom was amazing."  Instead, I feel like I spend the majority of my time trying to get Derek to EAT or SLEEP or attempting to keep up with laundry.(Derek changes clothes at least 4 times a day because he can't handle it if he spills ANYTHING on himself and it happens all the time.)  If I'm not doing these things, I'm trying to figure out IEP's or stressing about bills or trying to keep up with artwork and keeping up with ABA schedules.  I'm not Supermom at all. 

Yesterday Tyler was the ringbearer in his uncle's wedding.  I love both of my boys equally and I wanted to see Tyler in all his glory.  He looked so grown up in his tux.  Derek and I watched from up above, where there were no people.  He did such a good job and I was SOOOOOO proud.  But Tyler didn't see me up there.  After the ceremony, he asked me, "Did you watch me, Mom?  I didn't see you."  The look on his face was full of hope.  I told him, "Of course I did, honey.  Derek and I were watching from up there."  And I showed him where we were.  Tyler instantly looked relieved, and it made me wonder how many times I've actually let him down by NOT being there because Derek had a problem of some sort.  I instantly flashed back to the first movie we'd tried to see--Winnie the Pooh.  Tyler had stayed with one of Derek's therapists and I'd had to take Derek home during the PREVIEWS.  And this is why I feel torn.  I want to be there for both of my kids.  And Tyler is just starting to notice that Derek is really, truly different.  I don't want to let either of them down. 

Pretty soon, Tyler will start asking me why we don't do the things his friends do, like go to Disney World for vacation.  Or why we can't fly to New York to see his cousin and his aunt.  Or why we can't even go out to eat at a restaurant.  (Unless you count McDonald's drive-thru.)  It's even getting hard to go shopping.  

It's easy to count the things we can't do and get discouraged.  But I prefer to think about the OTHER things:

We can go to the park across the street and climb UP the slide.
We can go to the pool and jump in the cold water over and over again.
We can eat ice cream until our bellies hurt.
We can have water balloon or squirt gun fights.
We can laugh and smile and play.
We can snuggle and watch movies under blankets.
I can tickle my children until they are giggling uncontrollably.

and most importantly...
I have two beautiful children, that are ALIVE.
I can touch them and hug them and tell them I love them whenever I want.  
I can give them my TIME.

(And now and then, I'll make sure to have "dates" with Tyler and go places with JUST him...)