Monday, April 27, 2015

Faith

As the mom of a child with autism, I think my senses are much more heightened to how people treat children with disabilities than the average Joe.  My family lives in a great community that on the whole, is very respectful of those struggling with disabilities.  However, that constant nagging worry is always present in my mind, wondering if people will notice and mention or tease my child for the little things that make her different.

This spring my middle daughter Hayden played volleyball through our community center and begged my husband to coach her team.  He agreed and after the first game I could tell he was really enjoying it.  It made my heart swell to see the smile on her face as Rob ran them through drills and taught them new skills.

The team, "Pink Lightning", was comprised of ten 3rd and 4th grade girls whose skills were basically split down the middle.  A few could get their serves consecutively over the net, most could not.  Each practice Rob would work with the team on the basics of serving.  I'm so proud to say that by the end of our 6-game season, everyone could serve over the net...everyone except Faith.

Faith's parents never told us anything about her, but it was obvious she had some mental and physical disabilities.  She was stick-thin with an uneven gait but had a smile that never left her face.  Most of the time Faith didn't really seem to know what was going on during the game.  She would shy away from the ball as it came to her and usually had to be told where to move in the rotation.

After our first few practices, Hayden asked me, "Does Faith have autism?"  I told her I didn't know what Faith's disability was, but I was proud that Faith had joined our team and was trying to better herself.  She was committed to every practice and game and worked diligently to master her serve.

Our short season came to an end this past weekend and we found ourselves in the second seed spot for the tournament.  You could cut glass with the ear-piercing shrieks from our team as we won our first 2 games and wound up in the championship bracket.

In the final match, we lost our first game of 3 and began the second game that battled back and forth the entire time.  As I looked at our player setup, I noticed that Rob had put several strong servers back to back in an attempt to rack up some points.  However, the girls were nervous and a few of our faithful power servers cracked under the pressure.  The score ping-ponged back and forth the entire game.

It was our turn to serve and Faith was up.  I hoped that she would at least make contact with the ball.  I watched as Faith lined up her serve with a few arm swings and then made contact with the ball.  The ball sailed forward and over the net, landing on the other side scoring a point for us.  All of the sudden the parent bleachers erupted in clapping and hollering.  The player bench and floor cleared as everyone rushed to Faith.  Rob jumped 2 feet in the air and pumped his fist at her success.  Our assistant coach picked her up and swung her in a circle.  Her teammates were all over her with high fives and hugs.

As I watched from the sidelines, tears filled my eyes.  Of course, I was so happy for Faith...but I was more deeply touched by how our community reacted and celebrated Faith and her success.  Once again, a little bit more of my "faith" in humanity was restored.

--BTW, we won the tournament :)

Thursday, April 2, 2015

This is the face...



 ...of autism.  Beautiful, right?

Never in my wildest dreams did I imagine I would face the challenges of having a child with autism.  Quite honestly, I wasn't familiar with autism or what it could entail.  All I pictured when I heard "autism" was a child rocking in the corner and alone.  That certainly was not my child. 

Over the years we have heard many statements relating to our battle with this neurological disorder.  

"If you disciplined her more, she wouldn't act that way."  
When the grocery store cashier said this to me, I was so flabbergasted that I began to cry and couldn't even utter a response.  What she didn't know is that while the typical person can process, separate and tune out the many different sensory stimuli occurring at the store, Riley was unable to do that.  While you and I tune out the cash registers dinging, the background music, the carts rolling, people talking, children crying and 10 other various noises, many people with autism cannot.  Imagine all those sounds drumming in your brain and not being able to get a break...for hours at a time.  I can absolutely see why she had a meltdown!

"It must have come from her vaccinations."  
Talk about a guilt trip!  Whether you believe vaccinations can cause autism or not, keep that little comment to yourself.  Parents of autistic children feel guilty everyday.  Guilty for losing their patience, for not doing enough, for not being able to provide enough...we don't need your opinion making us feel better or worse.

And my all time favorite:
"God only gives special kids to those who can handle it."  
Really?  Just for the record, we did not have a choice in the matter.  Just as those who battle cancer or a debilitating disease didn't have a choice, neither did we. You do what you can, spend a lot of money, time praying, researching and looking for help, and then decide to begin again the next day.

April is Autism Awareness Month.  How much do you know about autism?  Who do you know with autism?  How can you help someone or the parent of someone with autism?  Did you know:

  • Autism now affects 1 in 68 children; boys are 4 times more likely to have autism than girls
  • Autism is a bio-neurological developmental disability that generally appears before the age of 3
  • Children with autism do progress--early intervention is key
  • Autism is treatable, not a hopeless condition
Following is one of my favorite pieces that helps shed some light on the emotions of dealing with an autism diagnosis.

Welcome to Holland  (c1987 by Emily Perl Kingsley)
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... 
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."  "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.  But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. 


Rob and I are still learning and seeing so many wonderful things about Holland...especially as we enter a new age.  Yes, there are days I still cry for Italy, and that pain WILL never go away. But of course, I'll stay in Holland, and become a better person for it.