A letter to Autism

Dear Autism,

     Seeing this is Autism Awareness Day, a day that we shine a light on you, a day that we light you up blue, I have decided to take a moment to reflect upon you.  You entered my life on June 18, 2010.  My son was just about to turn two.  Some days it feels like yesterday when I faced you like a deer in head lights.  Other days it feels like years ago.  I remember sitting in a small room, holding a thirteen page report in one hand, and Phil's hand in the other.  I remember the doctors looking at us with such heartwarming smiles.  I was sure that they would tell us that Gavin had a communication delay.  I was sure that they would even tell me to stop treating him like the baby of the family, and he would be just fine.  I was so sure of it, that when the words, "Gavin is autistic" was said, it took a moment to catch my bearings.  You see, you stopped my world on June 18, 2010.  The world stopped for that moment.  I felt like I couldn't breathe.  I began tapping my foot and held Phil's hand even harder.  I looked at the doctors and asked them to repeat themselves.  I asked them if they were sure.  The doctors replied, "You're son is autistic."  I asked them if he had PDD?  Again, they replied, "Gavin has autism."  I looked down at the report I was holding.  I quickly scanned it.  Clearly it couldn't be in writing.  There it was, "Gavin is autistic."  At that moment my world changed.  All my hopes and dreams for my third son, my youngest, my Gavin, were shattered.  The tears came, and they didn't stop.  The doctor handed me a box of tissues.  The tears flowed so freely that I felt my body wanting to convulse.  My brain shut off.  Phil did all of the questioning.  I didn't hear any words after that.  I just sat, wiped my tears, and attempted to stop the convulsions.  The doctor finally walked us to the check out area.  She asked the social worked to get us their "autism packet".  I stood silently.  I remember Phil did all the talking, I just stood there.  The social worker handed us a large packet and told us that she would be in touch.  I just stood there.  I did not want to leave. I wanted to stay there forever.
     I remember the car ride home was very quiet.  My tears continued to flow, and my body continued to convulse.  How would I tell his siblings?  How would I explain autism to them?  Would my son ever talk?  What if I die never hearing his voice?  How will I teach him?  Why my son?  Why me?  Why us?  I remember asking Phil through tears what was going to happen to our boy.  How will we do this?  Phil squeezed my hand tighter and told me that we will be ok.  Gavin will be ok.  We will do what ever it takes for all our kids.  Autism will not defeat us.  It will encourage us.
     I called my sister on the way home.  I told her the news.  The tears would not stop.  She asked what she could do.  I asked her to please call the rest of the family.  I just couldn't do it.  I remember asking her to tell them to please not give advice.  All we needed was love and support.  Just love and support is all we need.
     Upon returning home, we gathered all the kids into the boys bedroom.  We sat together and held hands.  The boys asked me why I had been crying.  My response was, "Gavin has autism."  They were full of questions but the one that I clearly remember is what William said.  "Is that why Gavin doesn't talk?"  My response was, "Yes, William.  That is why, and our job now is to teach him how to talk.  No matter what it takes, we will get him to talk."  I then told the boys that God doesn't give just anyone an autistic sibling.  He entrusted him to you.  It is a big job, and he knew you were special enough to do it.
     I grieved for months.  The grief would some days hit me like a freight train.  I hid my tears well, I hid my fears well, I grieved in silence.  I remember the grief was so painful some days that I would have to tell myself to breathe so that I wouldn't hyperventilate.  Autism, all your information was so overwhelming.  I contacted my friend, Christine.  She was a godsend.  She informed me of what places to contact, and where to begin.  Christine, you helped me take that first step to meet autism face to face. For that I will be forever grateful.
     I would get up with Gavin each morning and leave our Golden Retriever, Lillie, outside.  Every morning Lillie would come back in.  I would tell her to, "sit" and then give her a bone.  I remember one August morning.  We let Lillie outside. She came in.  Gavin looked at her and said, "SIT!"  His first word.  That was my second step to meet you face to face, Autism.  August, 2010, I was given hope.  Hope that I would continue to hear my boy's voice!
     Next came the countless hours of ABA (Applied Behavior Analysis), speech, OT, and services from a developmental specialist.  Countless hours that consisted of working, learning, and most of all teaching my boy how to talk, socialize, and play.  I continued to take more and more steps to meet you face to face.  Some of those meetings were painful, and some of those meetings were joyful.
     December, 2010, brought a gift.  I walked into a room, Gavin looked at me and said, "Mama."  Another step closer to facing you.  That was the moment when I knew everything was going to be ok.  I got to hear my boy call my name.
     As I sit here today and reflect back to June, 2010, I see a new beginning.  I see hope.  I see laughter.  I see joy.  Each new encounter with you, Autism, brings me a little more understanding.  I am not afraid to continue to meet you face to face.  There are still some days where you bring me sadness and grief.  There are still some days where I feel like you robbed me, you robbed my family, you robbed my boy.  There are still some days where I honestly think that God got the wrong address and should have sent you to someone else.  However, those days are beginning to be outnumbered.  They are outnumbered by the days where my son's voice makes me smile, the days where his smile lights up a room.  The days where my boy sings me a song.
     So today, Autism, I shine a light on you.  I shine a light for all you have taught me since June, 2010.  I have learned to not take things for granted.  I have learned that it is the little things in life that really matter.  Autism, you have taught me to never give up, that it is ok to be different, and that love and support are what matter the most.  You have made my marriage stronger, you have made my kids more accepting of others.  You have taught us patience.  You have encouraged us to work harder and never give up.  Autism, I thank you and honor you with blue.

Sincerely,
Paula
The Mother of an Autistic Son