Monday, April 8, 2013

Light it up, people!

Having children with autism can be challenging.  And terrifying... overwhelming, lonely, heartbreaking, frustrating, stressful and maddening.  I've never really talked to anyone about how autism has affected our family because it's really hard sometimes to not just fall apart in the telling.  I lose sleep with worrying about my boys, but especially about little Mitch.

Everything that I've read about children who grow up having autism describes lonely people who never had any friends, not because they didn't want them- but because they didn't know how to reach out and make them.  Or because they were so hard to communicate with that people didn't make the effort to get to know them.  Is this what my son has to look forward to?  The thought has me crying quietly into my pillow some nights.  I see him try in his own way to make a connection with other kids, and I watch the kids look at him funny because they can't figure out what he's doing.  Then they go on with their own games, leaving Mitch alone to mimic their movements from the sidelines.  I know he thinks he is now playing with them, because he's doing what they are doing, but he won't be fooled for much longer.  He's growing up, and soon he will begin to realize that he is so different, the other kids won't play with him.  I have no ill feelings towards these other children, they aren't doing anything deliberately hurtful.  They are just normal children immersed in play.  They aren't behaving meanly or in a bullying manner, they just don't see what I see.  A little boy who wants a friend.  How do I protect my child from this hurt that I see on his horizon?  How do I provide a way for him to be fulfilled with meaningful relationships?

Other worries include things like: Will he be able to hold down a job after he's grown, or do I need to be putting money aside now in order to make sure he's provided for in his later years?  Can he go to a regular public school, or will he get kicked out as so many kids with autism are?  How do I make sure he doesn't take that as another rejection of his not being good enough for society's standards?  How do I know how much he comprehends when he keeps everything so bottled up?  I'm scared that he will be hurt by something one of us does and we won't ever know to fix it so he lives in grief forever.

Along with all of this heartache and worry, there are moments of such incredible sweetness and joy that it drives away every doubt I have about my own ability to raise these children accordingly.  In the midst of the chaos and destruction that is everyday life at our house, Mitch will astound us with the sweet sound of his untried voice saying my name for the first time in his 4 years of life.  I was beginning the process of coming to terms with the possibility of never hearing it when he finally looked right at me and called it out in a squeaky mumble that moved me to tears.
He's making great strides in the language development area in the last few weeks.  He's been working so hard every day to get farther along in his communication.  Yesterday I was showing him different facial expressions and teaching him the word for each.  His favorite was "happy" and he said "I'm happy" all afternoon.  When I tucked him into bed a few hours later I told him to have happy dreams and as he tried to repeat it back to me, his little face was so frightened because he realized he had lost the word happy.  I can't begin to describe the pride I felt as I watched him gather his courage to start from the beginning, slowly repeating it again and again until he remembered it.  The look of relief on his face when he realized he could still say the word was something to see.  A few minutes after I had shut the door to the boys' room, Jordan and I could hear a sound on the baby monitor.  Our little guy was laying in the dark while the other boys were sleeping, softly practicing "happy dreams" over and over again.

Living where we do, it's hard to feel like we aren't alone in our struggles.  I think it's hard for even a normal family to feel like they aren't alone here, let alone a family that needs special services.  I read about support groups in big cities where parents of children with autism can get together and brainstorm, get/give advice or just chat.  Every time I hear of something like this, I can't help feeling a bit jealous.  I personally do not know anyone else with a child diagnosed with autism.  I have no one to bounce ideas off of other than my husband, and basically we are just winging it.  We read books and articles, and through a lot of trial and error we somehow make it through each day.

The reason I wrote all of this down wasn't to complain or make anyone feel sorry for us.  That's the last thing I want.  What I wanted was to give you an idea of how much of a difference it has made for us to see the world's support of what we do on a daily basis and to thank you.  All of you.  Everyone out there who has been lighting things up blue for Autism Awareness Month, you just got a great big cyber kiss on the cheek from the Everett family.  It has meant so much to my husband and me to see all the blue out there in the world in support of people like Mitch.  It gives us hope that not everyone will look at him differently, that someday he will have a best friend, and that he will be accepted into society with open arms.  From the Eiffel Tower to the church down the street with a blue ribbon tied around the tree, each and every sighting is a gift; a visible prayer, hug and pat on the back all rolled into one.  Every time I see another picture of a building lit up with blue lights in some place in Hungary or get a text saying that the tree trunks in Seattle have been painted blue, my heart grins and I feel encouraged and loved.  What's more important, is that I feel like Mitch is loved too.  That's an amazing feeling for someone who was feeling so alone just a few days ago, so keep it up, people!  Bring on the BLUE!


4 comments:

  1. Great, just great! As I read all of this wonderful blog all the way through to Dad, I had to stop to sob. He's looking at me with "Oh no, what can I do for you, honey" and "What's the matter with you" in his eyes. You are a great writer. We wear our blue. We love you! We love our Mitch! Autism will increasingly become the normal as we see diagnoses increase. These boys are being well loved as children, so they will learn how to love, and they will be well loved as adults too.

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  2. Thanks a lot Callie, you made me cry so hard I couldn't eat my ice cream and brownie. I love you guys.

    -Levi

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  3. Callie, I don't know if you know my daughter Joy - she works at Carl's Jr in town - but when she was growing up, I NEVER thought she would be able to live on her own, let alone work. She doesn't have autism, but her outlook seemed pretty bleak, and she has surprised us in every way possible. Do your best, include Heavenly Father in the process, and the future will be brighter than you can imagine.

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  4. Remember that the Petitt's love your family... and Mitch. Yes, he may be different in this world, but he IS loved. Especially by our Heavenly Father that made it possible for him to not have the same temptations and issues as the rest of us. He is an amazing little boy with so much joy, acceptance and innocence that he is a refreshing change from the rest of the world. I remember that first Sunday when I met Mitch - and your family. He was struggling with the changes in his world that day and I had the wonderful opportunity to spend some time with him to help with adjusting to his new environment. I am grateful to have been able to be a small part of welcoming Mitch and your family into our hearts that day. You are all such a wonderful example to the rest of us. Please know you are loved and we are here whenever you need an extra hand, some encouragement or a night out!
    Much Love,
    Gary and Brenda Petitt

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