The Middle of the Avenue

     I recently read a blog written by a mom with a child who has autism.  She wrote about how she has read blogs written by other moms who either love autism or hate it.  She, herself, wrote how she falls in the middle of the road.  She does not love it, nor does she hate it, she is learning to live with it.  I often ask myself, do I hate autism, or do I love it?  Am I a middle of the road person?  Which side of Autism Ave do I stand on?  I guess my answer depends on the day of the week, the moment in time.  I find myself some days standing on the "Love" side of Autism Ave, while other days, I can be found standing on the "Hate" side of the avenue.  Heck, there are even some days that I, myself, am standing in the middle.  Some days I am waving a white flag, some days I am heavily armed, sleeves rolled up, waiting to use my plethora of weapons (visuals, timers, schedules, social stories, sensory activities, positive behavioral supports).  There are even some days I am sitting in the middle of Autism Avenue attempting to put the pieces of the puzzle together.
      Gavin continues to be seeking sensory input.  We began brushing him every two hours again.  Overall, he has a very high energy level and is looking for input.   It is like he has a motor that never stops.  We have seen a decrease in this behavior since we started brushing him two weeks ago.  I have also noticed that the full moon affects him.  He sleeps less and is a ball of non stop energy when the moon is full.  We had a big milestone a couple of weeks ago.  Gavin learned to drink from a cup.  We have been working on this at home for the past two years.  It took him a long time to drink using a straw.  Then we moved on to drinking from an open cup.  We have been working on this since he was diagnosed.  He finally was able to do this two weeks ago.  The feeling of excitement I had was similar to watching your child take his/her first steps.  So, goodbye sippy cups.  We have moved on! These are the little things that make me love autism.  This is the side of Autism Ave that makes me realize that learning to drink from an open cup is a small thing that means a lot.
     Gavin had a successful Halloween.  He was spider man.  We practiced all month; putting his costume on, saying trick or treat, opening his trick or treat bag, and saying thank you.  Gavin was able to do all these things.  Again, which reminds me of the little things that count, the love side of Autism Avenue.  I could tell that Gavin was finished trick or treating when he was attempting to push through the person at the door, and barge into their house.  I had to physically redirect him away from the house, which led him to scream loudly, which led to stares from people.  This is when I jump over to the hate side of Autism Ave.
     Gavin has been screaming a lot at home lately.  Ear piercing screaming, that makes almost everyone cover their ears.  It is frustrating and heartbreaking when this happens.  Frustrating because you want it to stop, heartbreaking because he can't communicate WHY he is doing this.  When Gavin screams it usually results in someone yelling back at him.  I have been trying to point this out to everyone, and get them to work on not yelling at him.  I have noticed that William's patience level with Gavin has decreased a lot lately.  He is easily frustrated with him.  I often hear him say, "stupid autism."  Last week William came home and said, "Mom, I met Jacob's little brother today.  He is the same age as Gavin.  I kept thinking to myself, so this is what it would feel like to have a 4 year old brother without autism."  I had to walk away, I had to hide my tears.  This is the side of Autism Ave that I hate!  This is the side that makes me mourn.  I am grateful for William's honesty.  I think he too mourns for a 4 year old brother without autism.
     Last night, William had basketball, when he arrived home, Gavin ran to him and said, "William, how's basketball?"  William gave Gavin a hug and said, "Gavin, basketball was good."  This is the side of Autism Avenue that I love.  The side that is teaching William to love unconditionally.  Gavin has been asking a lot of questions lately.  For example, he will say, "How's basketball? How's football? How's work?"  He will also ask, "Where's Landon? Where's Lynne? Where's Papa?"  He will ask the same question over and over again even though you give him the same answer over and over again.  I know that some people can get frustrated that he repeatedly asks the same question.  I, on the other hand, waited a long time to hear my boy talk.  I wasn't sure if he would ever talk.  So, hearing his voice is a gift.  I will always listen to his repeated questions, and I will always answer.  Another recent struggle is keeping his seat belt on while driving.  He is always unbuckling it.  A few times he jumped out of the car while I was pulling into a parking space, or the garage at home.  We have tried social stories and visuals.  So, my last resort is a seat belt lock.  I have ordered one and am waiting for it to arrive.  Seat belt locks are on the hate side of the avenue.
     Autism has not only affected my life, it has affected my boy, as well as my entire family.  It has changed me.  I will never be able to look at a newborn baby again without wondering if he or she will be affected by autism.  I will always wonder why and what I did wrong.  I will continue to walk down the middle of Autism Avenue.  Some days I will step on over and embrace autism.  Other days I will pick up my weapons, roll up my sleeves, and fight autism with all my strength.  Along my travels, I will vent, cry, laugh, hug, curse, dance, learn, and love unconditionally.  Some days I will be on the left, some days on the right, some days in the middle.  Gavin will lead me, he will teach me.  Because of him I am a better person.

Loving unconditionally,
Paula