Friday, February 8, 2013

Picture Perfect

     This morning I walked past Phil while he was reading the Boston Herald.  I happened to catch a quick glimpse of a headline written on the page of the open paper.  It read, "Gi and Tom's baby is picture-perfect."  Something about this headline and article really got to me.  This may sound awful but I am going to be honest and write what I thought.  I fast forwarded this little girl's life by two years.  I thought about what if.  What if she receives an autism diagnosis.  Would the headline read the same?  Would the media still think of this precious child as picture perfect?  My first thought, probably not.  So, what makes a child picture-perfect?  I guess this depends on who you ask.  I guess "picture perfect" is different for everyone.
     Gavin is now beginning to be able to carry on simple conversations.  Something I thought that he would never be able to do.  He is able to answer basic questions about his day.  He doesn't do this consistently, however, this is a huge accomplishment for him.  The understanding of language is such a struggle for him.  I honestly thought my son would never talk.  So, for him to be able to tell me little things about his day is a dream come true.  The other day our school principal, Mr. Stahl, read a story to Gavin's class.  I asked Gavin if Mr. Stahl came to his class and read.  He answered, "yes,"  I then asked him what story did Mr. Stahl read.  He replied, "Jacket in the Snow."  A small conversation that was picture perfect to me.
     I have started to do our own ABA (Applied Behavior Analysis) sessions with Gavin at home.  Gavin's teacher, Lynne, made me visuals and gave me guidance as to how to go about implementing and conducting the sessions.  Lots of visuals were needed.  The ABA sessions focus on getting Gavin to complete homework.  When we first started with our ABA sessions it was pure hell.  Gavin spent the majority of the time yelling, throwing things, and being non-compliant.  He would bite himself and pull his hair.  With lots of patience, visuals, reinforcements and consistency, Gavin has made leaps and bounds.  Even my mother commented a couple of weeks ago about how great he is doing.  He looks like a completely different child then when we first began the sessions.  The best part is that Gavin now independently gets his homework folder and the visuals.  He will bring them over to me consistently each night after dinner and say, "Mama, it's Gavin's homework time."  Watching this growth in him is picture perfect to me.
     I found myself sitting on my bed staring into space this week.  I guess you could say I was daydreaming.  When my eyes came back into focus I noticed that I was staring at my special rosary beads.  I call these rosary beads, "Aunt Claire's Rosary Beads."  My sister had them made for me after our aunt Claire had passed.  The beads are made from roses that were at Aunt Claire's wake and funeral.  Aunt Claire's Rosary Beads are very special me.  Not only do they represent my special aunt, these beads have been used to get me through my dark days of autism.  The dark days of autism consist of days that are filled with sadness.  Days of crying and feelings of defeat.  Days when I fall asleep crying, and wake in the middle of the night, reach down, and feel the beads still beside me.  Honestly, these beads got me through.  They were something to hold when I felt sad and defeated.  These beads brought me sunshine and hope.  When I am having a bad day I now find myself reaching for Aunt Claire's Rosary Beads.  I now refer to them as my miracle beads.  I have a friend who is currently going through a dark time in her life.  I have been thinking of loaning her the beads in hope that they bring her the same comfort that I received from them.
     Staring at Aunt Claire's Rosary Beads got me thinking about the autism parents that don't have anything to get them through the bad days.  I think we all need something.  Something to give us hope and sunshine.  Something to bring us out of the darkness and be able to see the rainbows.  Something else I though of this week is all the progress Gavin has made.  My colleagues and principal, Mr. Stahl, have all commented recently how far Gavin has come.  How they are noticing his progress.  It made me think back to the early autism days.  The days that Gavin was receiving intensive early intervention.  The days when I wondered if he would ever talk.  The days where he couldn't make eye contact.  The days when he used pictures to communicate instead of words.  The days when I was first introduced to autism.  Autism has taught me to not look too far ahead.  It has taught me to watch for the obstacles and plan how to defeat them.  It has taught me to always look in my rear view mirror.  For when you look in  that mirror you get a glimpse of how far you have come.
     Lastly, everyone has a different view of picture perfect.  Here is what picture perfect looks to me: Picture perfect flaps and stims.  Picture perfect is rigid.  Picture picture needs routine and structure.  It needs visuals to learn.  Picture perfect makes you smile when least expected.  Picture perfect amazes you when something new is learned.  Picture perfect works harder then anyone else I know.  Picture perfect struggles with making eye contact.  Picture perfect also has meltdowns when he can't express his wants or needs.  Picture perfect loves sensory input.  Picture perfect struggles with self regulation.  Picture perfect loves unconditionally and accepts everyone for who they are.  My picture perfect has autism.  He is 1 in 88, and he is picture perfect to me.



Mother of a picture perfect boy,
Paula