Negative turns Positive

     I recently went to see Shonda Schilling speak about her book, The Best Kind of Different.  Shonda and Curt Schilling have four children.  Their third child, Grant, is on the spectrum.  He has Apsergers.  I went to see Shonda with my friend, Meg, and Meg's friend, Julie. Meg and Julie both have children on the spectrum.  Shonda talked about something that really hit home with me.  She talked about how we should focus on NOT surrounding ourselves with NEGATIVE people.  So, I have decided to dedicate this blog entry to just that.  I am sure there are many people who have read this blog, or who are thinking negative thoughts.  For example, "I don't get it.  Move on with your life.  Get over it.  It's not that bad."  The Paula before living with an autistic son would have gotten really upset by comments like these.  The Paula now living with an autistic son feels bad for people who think this way.  These are the people I pray for.  I pray that they never have to experience an autistic world.  For they are the ones who would just not be able to handle it, or "get it", or "move on."

     Gavin loves to go to the mall.  I, on the other hand, do not love bringing him.  His behavior at the mall is inconsistent.  I brought him before Christmas.  He was great.  Sat in the stroller, played with his iTouch, and enjoyed looking at things, and eating a snack.  A couple of weeks ago my cell phone broke.   We had to go to the mall so that I could get a new one.  Well, this particular trip to the mall was frustrating.  Frustrating for me, Gavin, Phil and the boys.  His frustration affected the entire family.  Phil and William had to attempt to keep him entertained in the Verizon store.  Gavin did lots of screaming, and people did lots of staring.  After my cell phone situation was taken care of, the boys wanted to go look at video games.  It was my turn to keep Gavin entertained.  However, his form of entertainment was to be out of the stroller and running all over the place.  I was not having any of that, and Gavin was not having any of my stroller plan.  He did lots of screaming.  A couple of teenage boys walked by him.  One was imitating Gavin's screams, the other was laughing.  I politely asked them to please stop.  They both apologized.  A woman walked by me and commented, "Someone sounds stressed."  I tried to comment in my most polite voice I could muster and said,  "No, he is just autistic."  with a polite smile on my face of course.  We then decided it was time to leave.  All of our stress levels were through the roof.  As we walked through JC Penney Gavin's stress level reached its breaking point.  He was screaming so loudly.  Tears were rolling down his face.  He reached the point of no return.  People were staring.  A sales associate made a comment.  Some people were giggling. Some people were giving me nasty looks.  Phil attempted to stop the stroller.  He was going to try to rationalize with Gavin.  He was going to attempt to calm him down.  When Gavin reaches his point of no return, the only thing we can do is give him his time and space.  There is no one magical thing to get him to stop.  He stops when he is ready.  I left the mall feeling so defeated.    I thought about that trip to the mall for days afterwards.  We have not attempted to return to the mall.  I do know that I need to incorporate visuals the next time we go.  I also need to create a social story about going to the mall.  A social story is a short story written that will help him understand expectations and behavior.  The story incorporates visuals and words.  We can read the story to Gavin before he goes to the mall, and bring it with us to review while there.  Living in an autistic world is definitely more work.  A simple trip to the mall can be a living nightmare if you don't prepare before hand.  Another thing I thought about for days after the trip was how to treat that negativity that comes from strangers when Gavin is having a melt down.  I have decided to create little cards.  They will be the size of a business card.  The card will say something like, "Please check out my mom's blog.  I am autistic.  I would love if you could spread awareness.  Love, Gavin."  On the back side will be printed the link to this blog.  Hopefully I can work on creating these during our next school vacation.
     We continue to be very happy with Gavin's progress.  However, I continue to struggle with the feeling of guilt because of not having ABA (Applied Behavior Analysis) at home.  Gavin's Developmental Pediatrician recommended more ABA home therapy.  However, our plate has been so full, and Gavin doesn't get home from school until after 3:30.  So, I honestly feel like providing him with therapy at 4 o'clock in the evening would stress him out.  He is tired by 4 o'clock, and needs to come home and relax.  Speaking of home.  The first thing Gavin does when he walks through the door after a full school day is to take off his jacket, shoes, socks, and pants.  Loves just being in his underwear and t-shirt.  We have worked hard the past couple of weeks with getting him to change into his pajamas vs. running around in just his underwear.  He has been more cooperative about this.
     Gavin is not yet able to carry on a conversation.  However, we can now ask him how old he is.  His reply, "Gavin's three!", as he attempts to hold up three fingers.  We can ask him, "How are you?"  His reply, "I am good."   Phil and I went out for dinner last weekend to celebrate my birthday.  My sister, Lisa, watched the boys for us.  While at dinner I decided to give my sister a call to check in.  Gavin got on the phone.  I said, "Hi, Gavin." Gavin replied, "Hi Mama, how are you?"  My reply, "I am good Gavin.  How are you?"  His response, "I'm good."  He then ran away from the phone laughing hysterically.  With tears streaming down my face, I looked over at Phil and said that was the BEST birthday present I could ever receive!  I had a small conversation with Gavin over the telephone.  Something I  thought would never happen.
     Before Shonda Schilling finished talking about her book she allowed for a question and answer session.  It was nice to be surrounded by other parents who are living in somewhat of the same world that I am.  I got up the courage to stand up with a microphone in hand.  I asked Shonda how she juggles her attention and time between all her children.  This is something I seem to struggle with, and the guilt can get to me.  She answered me by trying to find creative ways.  Whether it be by reading a book to one of them, having cuddle time, or just a 1 one 1 trip to the grocery store.  It's the little ways that mean the most.  I have not finished reading Shonda's book yet.  However, she wrote and talked about how her oldest son was diagnosed with anorexia around the same time that Grant received his diagnosis.  She told us that they will never know if the anorexia had anything to do with Grant.  Boy, does this hit home with me.  Right after Gavin's diagnosis there was this period in my life that I like to call "the dark time."  During this dark time, Landon gained 12 pounds.  I didn't notice it until months later.  My Landon needed his mama.  I was consumed in my own sadness that I failed to notice this.  I will forever carry this guilt in my heart.  Just another thing about living in an autistic world.  The diagnosis affects the entire family in different ways.
     Our journey with autism has taught us many things so far.  It has taught us WHO are true friends are.  It has taught us WHO our important family members are.  It has taught us to always turn the negative into the positive.  It has taught us to never judge someone else, or their life.  As we do not walk in their shoes.  To the negative people out there.  My prayer for you is to hope that you continue to read this blog.  My prayer for you is that hopefully someday you won't have to experience an autistic world.  My prayer for you is that hopefully someday you will try a little harder to "GET IT".  Just like my true friends do.  To all my true friends and my important family members......I love you and thanks for attempting to understand.  Thanks for your unconditional support.  My journey is your journey.  Together we will spread awareness.  Together we will search for that key.  Together we will make this world a better place.