To Tell or Not to Tell

    This blog entry is dedicated to Michele.  Michele's son just celebrated his second birthday and has been diagnosed with PDD.  Thank you, Donna, for introducing us.  Michele, thanks for the inspiration. 

      As I prepare for a new school year, I find myself reflecting upon the past two years since receiving the big AD (autism diagnosis).  I often find myself thinking about the early days post diagnosis.  The time in my life that I consider "The days of darkness".   It would have been so easy during those days to continuously slip down a self pity slide.  A slide that just brought you deeper and deeper into a  pit.  It would have been easy to float around on a cloud of denial.  A cloud that was fluffy, white, and never produced rain.  It would have been so easy to live in a house of grief.  Where you could choose to spend most days crying.  When I close my eyes and remember those days, I see the self pity slide.  I see the cloud of denial.  I see the house of grief.  There were weeks that I floated around on that cloud of denial.  Why?  Maybe if I stayed on the cloud then the AD would go away.  Maybe my life would be perfect being a cloud floater.  The house of grief was exhausting, so most days I tried to get myself out of there.  The ride down the slide was ok some days.  Some days it gave me a numb feeling, some days it gave me an empty feeling.  It just helped me to forget about the house and the cloud for a while.  There was also a time when I took shelter in the cave of guilt.  The cave was dark and dreary.  It was not a fun place.  Some days, I found myself hiding in the cave, using it for shelter. All of these things were part of my life during those early post diagnosis days.

     The question that always came to mind during those days was, "To tell or not to tell?".  This is a question I struggled to answer each and every day.  Should I tell people about Gavin's autism?  Should I not?  It's now that I can say that each mother handle's their child's AD differently.  There were days that I wanted everyone to know. There were days that I wanted no one to know.  There were days where I left the house of grief, slid down the self pity slide, floated on the cloud of denial, then took shelter in the cave of guilt, all while juggling the question in my head, "To tell or not to tell?"

     To the mothers who just heard, "You're child has autism.", it's your choice to tell or not to tell.  Eventually, I stopped juggling the question and answered it.  I chose to tell anyone I encountered.  I chose to tell family, friends, and colleagues.  I even chose to tell strangers.  Telling people also came with a price.  That price included comments.  Comments that made me feel great about it.   Comments that helped me embrace the diagnosis.  Comments that hurt, and comments that made me feel like I was being judged.

     Now a days I continue to answer the question, "To tell or not to tell?"  I think this question will always travel along this journey with me.  Some days I choose to tell people, some days I choose not to tell.  This weekend we went to Walmart.  Taking Gavin to a store has been disastrous lately.  I usually come home exhausted and find ways to not bring him or just don't go.  Well, I made him a social story that he could visually look at and listen to on his iPad.  It basically told him where we were going, my expectations of him, what we were going to buy, and what his reward would be.  As I was checking out, he was helping me place all the items near the cash register.  I looked at him and tears began rolling down my cheeks.  The cashier asked me if I was ok.  Should I tell?  Should I not tell?  I chose not to tell.  My boy was successful in that moment.  I told her I was great and left it at that.

     This is a question that I will have to continue to answer along my autistic journey.   How I choose to answer the question is my choice.  One question that I will not have to answer is, "Will you spread awareness?"  It is now my mission to spread awareness.  Awareness that autism can enter any family.  Awareness of what it may be like coping, living, and functioning as a family with autism.

     As I prepare to enter a new school year, I see a roller coaster.  A roller coaster that I am getting on.  A roller coaster that consists of high points and low points. The ride is scary some days.  The ride is fun some days.  Most days it is unknown when the next hill or drop will come  It will have its ups and downs. It will consist of flips and turns.  In the distance I see the self pity slide, the house of grief, the cloud of denial, and the cave of guilt.  I wave to them in the distance.  They call my name.  I yell from the distance, "Hello, old friends.  I am taking a ride.  It was good to see you!"  I turn and step onto the roller coaster, look back for a second, wave goodbye, and smile.

Riding the coster,
Paula




   

Going for the Gold

     It's hard to believe that summer vacation is almost over.  Back to school in two weeks.  Yikes!  Gavin finished summer school and is now officially working on his tan.  He enjoys spending most of his days swimming in the pool.  I have made sure that I wrote on the calendar the exact date when school begins.  We have our official count down to school calendar.  Each morning, I show him the calendar, remind him of the date, then show him when he starts school.  Each response is consistent, "No school!"  Gavin had a big milestone last week.  He learned to swim!  I noticed he was becoming more and more dependent on his orange swim bubble.  He used it so much that it began to rip.  We got a swim vest from my sister, Lisa.  However, Gavin's brain just could not grasp putting something different on while swimming.  He HAD to have the same orange swim bubble.  Last week I decided that I was not going to buy a new bubble.  So, I went in the pool with him and off came the bubble.  I spent many summers working as a lifeguard.  Life guarding skills came in handy when it came time to teach my two older boys how to swim.  I was curious if it would be the same for an autistic mind.  Gavin picked up the swimming underwater quickly.   I showed him how to kick his feet, keep his body afloat, and use his hands to dig.  His swimming skills became stronger each day.  As of today, he is swimming above water and underwater!  It is amazing to watch him swim.  Two years ago I was wondering if he would ever talk.  Last year, I was wondering if he would ever be potty trained.  This summer, I was doubting that he would ever learn how to swim.

     Gavin has started to play with toy cars.  Another milestone!  Gavin never plays with toys.  This was one of his many early autism indicators.  He worked with his therapists during his ABA (Applied Behavior Analysis) during early intervention.  He also continues to work on play skills in school.  I have spent countless hours on the floor attempting to teach him how to play with toys.  So, when I turned and saw him pushing a toy car and making car noises, it took my breath away.  I wanted to freeze that moment in time.  I decided that I would take Gavin to the mall to pick out a new toy car using some of his birthday money.  A couple of weeks ago, I piled the kids into the van and drove to the mall with a smile on my face.  I was excited about our mall adventure.  We usually enter the mall through JC Penney, and I have never given this a second thought until that day.  We parked and entered through Target.  While Gavin was walking toward the entrance of Target, he continuously yelled, "NO, NO, NO! JC Penney, JC Penney!"  I attempted to reassure him.  I explained that we were going to Target not JC Penney.  I felt like I had to drag him through the entrance.  Once in Target, Gavin threw himself onto the floor in front of the door.  He was screaming, crying, "JC Penney, JC Penney!"  People were stopping and staring.  I had to think fast.  How was I going to get him out of this.  I kept thinking keep calm and carry on.  It was too late, Gavin was far too gone into his autistic world.  I asked William to quickly get a carriage.  I quickly picked Gavin up, put him in the carriage, and ran towards the elevator doors with his older siblings following behind me.  I thought I could distract him by having him press the elevator button.  If only I could unlock his autistic mind, bring him out into our world.  A world where entering the mall through a different store is no big deal.  Gavin then began biting the carriage.  He took his shoes off and threw them at me.  He continued to scream and cry.  I turned to his siblings and told them to hurry up and follow me.  We made our way back to the car.  I buckled him into his booster seat.  I told him it was going to be ok.  We sat in silence for 15 minutes listening to Gavin's sobs.  I looked into his siblings faces, I could see the sadness in their eyes.  I could see their frustration.  I told them we were going to attempt it again.  We were not going home.  William asked if we could just enter through JC Penney.  I told him no.  We were going to help Gavin work through his autistic mind.  So, after 20 minutes we entered Target.  Gavin in his stroller, crying.  He refused to keep his shoes on.  We strolled him to the toy aisle.  A woman was staring at him.  She gave us the evil eye.  I knew what she was thinking.  She was thinking what a brat my Gavin was.  I kept saying, "Look at this toy, Gav!  Do you want this?"  He would reply, "Hold, hold, please!"  I would hand him the toy, and he would then throw it at me.  We left the mall toy less.

     William and Landon had the opportunity to go away last weekend with my sisters.  It was a nice break for them, and it gave me the chance to completely focus on Gavin.  Phil and I decided to attempt to bring him to the mall to pick out that new toy.  We put our plan into action.  Our plan was to enter through the food court.  Bring his visual expectations and reward him with a treat from Burger King.  Our planning and talks about consistency and being on the same page paid off.  It was a successful mall trip.  He did have a melt down because he had to get off the coin operated train.  He threw himself onto the ground and screamed.  I smiled at the staring people and carried on.

Gavin's new toy

     Gavin received a gift this week.  My sister, Ann, won an iPad.  She wanted Gavin to have the iPad. I asked her to keep it for herself.  She insisted that she wanted him to have it.  Gavin has been using his iPad for three days now, and it is already opening up a whole new world.  Last night, William said, "Hey mom, Gavin has been saying a lot of words today."  My response, "Maybe the iPad is helping and encouraging him to use his words."  We downloaded a Sounding Board app.  I am able to create individualized boards for him to use.  For example, I created a board that he can use when he is frustrated.  He can tap this board, it has a picture of an angry face, and will say, "I am mad!  Gavin is mad!"  I am working on creating another board that will tell him and show him what he can do when he is mad.  Thank you, Ann, for this amazing gift!

Gavin and his new iPad

     Gavin had his six month dentist check up this week.  I created a social story about the dentist.  He did tolerate the brushing of his teeth.  However, that was all he would allow the hygienist and dentist to do.  We had to hold him down in order for the dentist to examine his teeth.  He screamed and cried the entire time.  My eyes filled with tears.  I know he is not being a brat.  His autistic mind just can't understand.  The dentist and hygienist are so patient with him and understanding of his limitations.  No cavities!  So, we will attempt a visit again in 6 months.  I did google a 'going to the dentist' video and was able to find one on you tube.  He has watched it several times.

Dentist Social Story

      The G Man Foundation ordered 5 iPads to be donated.  4 will be donated to the Pre-K PDD program that Gavin attends.  The fifth will be donated to an autistic child.  I am in the beginning stages of creating an autism resource library for parents and educators.  My plan is to order books, DVDs, and other resources that parents and educators can borrow.  The foundation is also selling our original 'G Man Group' shirts.  The shirts are $15.00 each.  Adult sizes are XXL, XL, L, M, and S.  Youth sizes are also available.  If you would like to support the foundation and order a shirt you can email me at wlgpete@comcast.net.
     Our good friends, the Tappers, gave us tickets to Six Flags.  The tickets are for today.  We found out last night about the tickets.  Phil asked what I wanted to do.  I spent most of the night tossing and turning, trying to make a decision.  We decided this morning that Phil would go with William and Landon.  I would stay home with Gavin.  The tears roll down my cheeks as I sit and type this.  I struggled all night as to whether we should go as a family or not.  I thought maybe he could handle it if I create a social story.  I thought maybe he just might be successful.  I thought what if he is on overload, and can't handle it. I thought about him having to wait in line for a ride.  Waiting in line is such a big struggle for him.  My heart was saying yes, my head was saying no.  I continue to dislike not being able to do some things as a family.  I dislike not being able to be spontaneous.  I dislike having to over think autism.  I dislike all the work somedays.  Maybe someday we will get to go as a family.  Today, William and Landon will enjoy Six Flags and not have to worry about their brother's autism.
     While Gavin has been using more language this week, he also continues to script and is echolalic (repeats things you say to him).  I noticed that he is more echolalic this week then in the past.  I remind myself that one behavior has to be replaced with another.   Gavin's melt downs have also taken a turn within the past week.  He is biting more and more, throwing things, and is overall non compliant.  Gavin also has to be closely monitored.  He continues to attempt to leave the house.  He also figured out how to open windows and lift the screens.  We need to make sure we know where he is at all times due to safety concerns.  Gavin also continues to like to go for drives in the car and listen to the iPod on repeat play.  Last week's song of choice was Layla by Derek & The Dominos.  Today it is Gloria by Van Morrison.
     I recently noticed that my blog has had over 3,900 views!  I am in awe.  Today I will celebrate helping to spread awareness.  Thank you for coming along with me on this autistic journey.  I will end with something my oldest son said this week, "Hey mom, maybe Gavin will be an autistic Olympic swimmer someday."  Maybe he will, William.  But for now we will work on earning that Olympic gold in autism.

Going for the gold,
Paula