Break on through......

    We attended the Lowell Spinners baseball game last night.  I remember when I ordered the tickets, Phil had asked me if we would bring Gavin or get a sitter for him.  My gut told me to bring him.  Even though I knew it would be a ton of prep work, and he may not be successful at the game.  So, like all our family events, the Spinners game has been written on the calendar since May.  When we turned the calendar to July, there it was in big red letters. July 25th - Spinners baseball game.  As the day got closer, I would tell Gavin that he was going to a baseball game.  His response was always the same, "No baseball game!"  My response back was always consistent, "Yes, baseball game!"  I created a "Gavin is going to a baseball game!" social story a few days prior to the game.  When Gavin woke yesterday morning, I had the social story waiting right next to his breakfast on the kitchen table.  Gavin LOVES social stories.  He smiled immediately upon seeing the story.  He read it over and over again.  We took it along for the ride on the way to summer school so that he could read it.  The story consisted of pictures and words of what he would do and what he should expect to see and hear at the game.  It also told him what he may eat, drink, and when he would go home.  After school, I noticed a shift in Gavin's behavior.  He screamed the entire way home from summer school.  He took off his seat belt and ran around the back of the van.  I had to pull over to strap him back in. I was searching for the right words to say to him the entire way home.  Every time I reminded him to keep his seat belt on, he would scream right back at me exactly what I had said to him. Gavin had one melt down after another yesterday afternoon.  Once he took all his clothes off, I knew he reached the point of no return.  I attempted to redirect him, I attempted to console him, I attempted to set limits.  I attempted to present him with visuals.  Nothing seemed to work. I would make him put his underwear on, however, two minutes later he would be screaming and taking them off.  I knew all I could at that point was give him love and attempt to understand his world.  At one point, William could see the exhaustion on my face.  He told me that he would take over for a little while.  He told me to take a rest. He sent me to my room, told me to lay down.  He closed the bedroom door and attempted to distract Gavin.  I closed my eyes and fought back the tears.  I followed his strict orders.  As I lay there, I found myself remembering back to when Gavin was an infant.  I couldn't wait to take all three boys to sporting events.  I couldn't wait to take all three boys to amusement parks.  I couldn't wait for the future.  Then I brought myself to the present.  I thought about how intense Gavin's melt downs have been getting.  I sat and thought about how Gavin's attention span seems to last about three minutes lately.  I thought about how things like going to a baseball game are so much work!  I had myself a good old 10 minute pity party.  It would have been so easy to give into the tears.  To curl into a ball, cry and not get up until Phil got home from work.  Instead, I told myself to stand, move, and face the present.  The present that is a gift.  I went to find the boys engrossed in a video game.  Gavin was butt naked, but he was quietly watching his brothers.
     Phil and I decided to take two separate cars to the baseball game.  For fear that Gavin had to leave, one of us could stay with William and Landon.  I envisioned that once we got to the entrance that Gavin would refuse to go into the park. I envisioned melt downs, I envisioned complete failure.  I brought the social story with us.  We parked quite a bit away from the park.  We figured the walk would be good.  As we walked toward the park, I told Gavin everything he would see.  I reminded him about how loud it would be.  Gavin walked right into the park, climbed up the never ending stairs, and walked patiently while we found our seats.  After we sat I handed him his social story and had him read it.  He smiled, read it, and we bought him some popcorn.  He stood during the game with a big smile on his face.  He clapped, stamped and cheered along with the crowd.  He ate his popcorn, had cotton candy.  It felt so good to feel and look like an average all American family attending a baseball game.  At the bottom of the fifth inning, I asked Gavin if he was all done.  He replied, "Yes, all done.  Daddy's car."  So, Phil took him home while I stayed and enjoyed the rest of the game.  Before falling asleep last night, Phil commented how it was such a successful night.  What a great time it was.  I thought about all the prep work.  I thought about Gavin's melt downs that afternoon, him continuously taking off all his clothes.  I then closed my eyes and smiled.  All the prep work was worth it.  All the melt downs were worth it.  We attended a baseball game as a family with autism and we won!!  We were successful!
     The G-Man Foundation hosted an animal show at summer school.  I figured if Gavin and his friends had to go to school during the summer, then they deserved something special.  Animal Adventures came to school today.  They brought a bearded dragon, skunk, rabbit, chinchilla, snake, tortoise, alligator, and a ferret.  It was a show and tell for all the special education summer school students.  The students got to touch each animal.  Gavin's teacher, Lynne, prepared Gavin all week for the animals coming to school.  This morning when he woke he was a complete bear.  He had a melt down before we left for school.  I figured it was due to all the changes in his schedule lately.  Gavin loves music.  It is very therapeutic for him.  So, on the way to school I plugged in my iPod, turned a song on, asked him if he wanted to listen to this song.  I continuously heard, "no, no, no!" And then he heard it.  Break on through by the Doors.  "yes, yes, yes!"  So, repeat play went on.  We sang Break on Through the entire way to summer school.
     Overall, the Animal Adventure show was a big success.  Gavin sat with his class, and touched each animal.  As I sat with my summer school students,  I looked around the room.  My eyes filled with tears looking at some of the students' faces.  Witnessing their happy expressions.  Seeing them nervously touch the animals. Seeing the excitement in their eyes.   I then knew that I was right where I was suppose to be.  I knew exactly why I was given autism.  I knew it was my destiny to start this foundation.  On my bad autism days I will remember this moment.  I will never forget it.  This moment helped me break on through.  Break on through to the other side.  The side of no melt downs, the side of happiness, the side of excitement.
     Break on through to the other side.......break on through to the other side..........

Breaking on through,
Paula




  

 

Friends till the end.......

     I can't believe July is almost done.  Summer is going by way too quickly.  Summer is all about vacation from school!  However, in an autistic world, vacation from school can mean disaster.  Disaster because they are out of their routine.  Gavin has had more meltdowns lately.  He finished school, had a couple of weeks off, then started summer school, had summer school for a few days, hand an extra long weekend to celebrate the fourth of July, then went back to summer school.  I feel like we are finally in the summer school groove, and guess what?  Summer school ends next week.  Ugh!  Preparing for more meltdowns. Gavin is extremely routine.  A lot of work goes into preparing him for change.  We have a large calendar hanging on the refrigerator.  The calendar is marked with any change.  We have written down the days he attends summer school, the days he stays home, as well as parties, functions, or places we may be going.  Gavin can read.  So, we usually tell him to check the calendar.  He likes to check the calendar, however, hates when there is a change. He will repeatedly say, "No, no, no!"  It took him until this week to accept the change of summer school.  Every morning he would say, "No summer school.  PJ's, PJ's, PJ's!"  I had to ask his brothers to either stay in bed until he leaves or hide upstairs to avoid morning meltdowns.  Gavin would see his brothers being able to stay home and stay in their pajamas.  So, why can't he?  His mind can't figure this out.      
     Lately, Gavin has been obsessed with blinds, shades, doors (especially sliding doors).  I am guessing it is the repetitive nature of these items.  Up, down, up down. Open, close, open, close.  I have to hide the cords on the roman shades.  He has ripped and broken several bedroom shades.  He will often pull the shade all the way down so that you have to take the entire shade down and roll it up again and again.  So, I am left guessing.  Is he looking for some sensory input? Or does he just like the repetitive movement of these objects?  Gavin has also been obsessed with doorbells.  He LOVES to ring doorbells.  He will open our front door, step out onto the steps, ring the doorbell, wait for our dog to bark, laugh, flap, jump up and down, step back inside, say, "OK, thank you, goodbye."  Then begin the entire cycle over again.  He knows how to unlock all the locks.  It can be funny the first two times, however, after the tenth time you have just about had it and are searching for ways to break the doorbell cycle.  Gavin has also been obsessed with locking all the bathroom doors.  He will open the door, lock it, and then shut it.  He doesn't lock himself in the bathroom.  Just locks the door.  Again, not funny when you have to use the bathroom only to find yourself locked out of it and left searching for a key to open it.  Gavin also continues to script.  He scripts and scripts and scripts.  He will script anything from a line he heard watching television, to a conversation he overheard.  He will often go to the bottom of the stairs and yell, "Paula, Paula, Paula!"  I will respond, "what?" after each time I hear my name.  However, he will not respond.  He will just say my name three times and then move on to something else.  I realized that he is scripting Phil.  Phil will usually have to call me three times before I respond.  He thinks I am ignoring him.  I keep telling him that I don't hear him (ha).
     Last week, William had football camp and Landon had basketball.  Phil and I had to divide and conquer. Well, at least hope to conquer.  Phil took William to football, while I took Landon to basketball with Gavin.  Well, it was a complete disaster.  Gavin could not sit and watch the game.  He was all over the place.  Running away from me, attempting to run onto the basketball court.  Stimming on the chain link fence, stimming from the ref's whistle, stimming from the basketball bouncing.  He would run over to people and grab their things or attempt to sit in their chair.  I was exhausted, and so torn.  My heart was torn.  Here, Gavin needed my help to self-regulate, but Landon needed his mom to watch him perform on the court.  It's a task I don't wish upon anyone.
     I was determined to praise Landon on the drive home.  I told him what a great job he did.  I attempted to remember anything he did during the game so that I could comment about it.  All the while praying that I was getting it right.  I honestly feel like I didn't see him play.  Just another struggle on this autistic journey.  While driving home from basketball Landon said he wished there was an autism shot.  I asked him what he meant.  He responded that he wished there was a shot so that kids won't get autism.  My tears started rolling.  He then said that it is getting harder with Gavin as he gets older (this kid was reading my mind).  The tears continued to roll.  Then, Landon said he hopes Gavin dies when he does.  I asked him why.  Why would he say that?  He responded that there will be no one left to take care of Gavin.  Then he told me that he will hire staff to take care of him.  I cried the entire way home!  I had to breathe through my tears.  Why should my 8 year old son have to worry about this?  Just another autism struggle.  The next day Landon said to me, "It is your fault about the autism!"  I asked him what he meant.  He said that I made him in my belly.  So, I made the autism.  This is when my faith kicked in.  I told him that God sent the autism to us as a gift. Landon then went on to say that no woman will love him.  I said, "What?"  He said you know, like a woman loves a man. No woman will love a man with autism.  I couldn't respond.  I just looked away and told myself not to cry.
     I have thought of this saying lately, "Make new friends, keep the old.  One is silver, the other is gold."  I find that I am losing some friends along this journey.  It is sometimes difficult to find time to respond to emails, texts, or phone calls.  Most of my free time is spent juggling life.  However, juggling a life that includes autism.  I envy the moms that can attend spontaneous play dates, that can attend basketball games, that can spontaneously go to the beach, that can attend parties or functions.  Doing these things do not come easy in an autistic world.  There is so much preparation and work that go into something as simple as a play date, a trip to the beach, a party.  Even if I do attend things, a great deal of my energy is spent making sure Gavin is successful.  So, to my friends that have not heard from me in a while I should say that I am sorry.  Sorry for not replying to your emails.  Sorry for not responding to your texts.  Sorry for not responding to your phone calls.  Sorry, that I am focused on raising an autistic son.  As I am losing friends, I am also gaining friends.  Friends who don't need a response.  Friends who attempt to understand.  Friends who encourage me, cry with me, and support me.  "Make new friends, keep the old.  One is silver, the other is gold."

In Friendship,
Paula
   

HAPPY BIRTHDAY GAVIN!

     I couldn't wait to say "happy birthday, Gavin!" as soon as he was awake on June 29th.  I was thinking that morning while I waited for him to wake up how when William and Landon wake up on their birthdays they are a ball of excited birthday energy.  They will burst into the bedroom, jump into bed with us, and announce how it's their birthday and how excited they are.  I was wondering and anticipating Gavin's birthday.  I wrote it down on the calendar.  Every day we would walk by and look at it written down.  His response was consistent each morning, "no birthday, Gavin's birthday all done."  So, when Gavin woke that morning, I was hoping for that excited birthday energy.  However, it didn't come.  His response was consistent as it was each morning, "no birthday, Gavin's birthday all done!"  This broke my heart.  My eyes teared up on the drive into summer school that morning.  I had to talk myself out of crying.  I knew that if I allowed the flood gates to open, then they would not close for awhile.  Once we arrived at summer school most of the staff wished him a happy birthday.  I am sure I don't have to tell you what his response was.  My autistic world consists of my little guy hating change, hating birthdays, hating holidays.  However, now that I reflect upon it, I guess that it's not that he hates these things.  He just doesn't understand them.  Having a birthday doesn't make sense to him.  Singing happy birthday, blowing out a candle, opening presents.  Why do we do these things in an autistic world.  Again, I am reminded how celebrating a birthday comes so easy for typical children.  Not for an autistic child. We have to practice and teach and help them to understand through their eyes.  

     I am blessed that Lynne (Gavin's teacher), practiced singing happy birthday during summer school.  Gavin's immediate response was screaming and crying.  Lynne was able to work her magic and get him to listen and sing a long with his friends while they sang happy birthday to him. She even practiced and got him to understand how to blow out a candle (of course it was an imaginary candle).  Thank you, Lynne, for again seeing things through Gavin's eyes and helping me understand as well as him.

     After summer school, we went out for a family lunch to celebrate.  Lunch was a disaster.  Gavin spent the majority of the time having to be redirected.  He was screaming, jumping, and flapping.  I brought him to the car at one point to see if I could get him to regulate himself.  However, nothing seemed to be working.  At one point he crawled under the table and attempted to take his clothes off.  That's when I realized that he was probably just on sensory overload.  We managed to get him to come out and keep his clothes on.  I was able to give him deep pressure to his arms and legs.  This seemed to do the trick for the time being.  After a long and less then calming lunch we decided to take a ride to a delicious bakery so that the boys could decorate their own cupcakes.  The entire car ride, Gavin either screamed, threw things, or unbuckled his seat belt.  At one point, William said, "Why do we have to have someone with autism in our family!"  I could hear the anger in his voice.  Again, had to stop the tears.  I had to think fast on my feet.  I needed a good response.  I wanted to respond with, "I feel the same way! WHY!"  Instead, I took a deep breath and responded with, "Because Gavin is our gift.   Yes, it is very frustrating some days.  We have to remember that we were chosen to be Gavin's family.  We need to make a difference for him and this world."  

     So, we arrived at the delicious bakery only to find out that you need to give a 2 day notice if you want to decorate your own cupcakes.  Instead we waited in line and ordered our cupcakes.  While waiting in line Gavin continuously ran behind the counter into the kitchen area.  I had to continuously redirect him back to the line where we were waiting.  We finally completed our cupcake order, paid, and sat down to enjoy our yummy treats, then the fire alarm went off.  I immediately looked at Gavin and thought, oh crap this could go either way. He is either going to freak out and have a meltdown, or he is going to tolerate the noise.  Well, Gavin just sat there and looked at the fire alarm that was buzzing loudly.  He had a calm look on his face.  I looked into his eyes and could almost see what he was thinking.  He was thinking, "Oh, come on fire alarm.  I am here to enjoy my yummy cupcake.  Please stop!"  We had to evacuate the bakery.  We brought our cupcakes with us, and finished eating them outside.  On the way home from the bakery all I could do was laugh. I laughed, and laughed, and laughed.  Phil asked me what was so funny.  I told him the entire day was funny.  It was just a typical day in our autistic world.  It was my sign from above.  God was letting me know to always expect the unexpected.  You can plan and want things to be perfect, however, life isn't about that.  It is about finding the joy in life.  My joy was hearing that fire alarm, and being able to listen to my son's response to it by looking through his eyes.  A baby step closer to finding that key.

     I was thinking a lot lately how Gavin would probably never be invited to a friend's birthday party.  I began wondering if any parents living in an autistic world thought or felt the same way.  I decided to turn my birthday grief into something positive.  Phil and I booked a birthday party at a gymnastics place.  We invited both PDD classrooms in his school, as well as our friend, Brock, who is also on the spectrum.  What a great day.  I am crying tears of joy as I type.  I made a visual schedule for the party, as well as topic boards.  The kids were able to use the bouncy house and obstacle course.  We had gluten free cupcakes, popsicles, and goody bags.  I saw so many laughs, giggles, and happy kids.  All the children sat at a table and were able to sing happy birthday to Gavin.  He didn't scream or cry.  He sang and was so happy.  Phil and I sat this afternoon and reflected upon the day. We shared how happy we were.  We talked about how great it was to see all the kids so happy.  What a happy autistic world it was today.

     I noticed that after the party Gavin was so relaxed.  There was very little screaming this afternoon and evening.  He was so happy.  He walked around the house holding a balloon singing happy birthday over and over again.  

     After Gavin fell asleep this evening, I sat and stared at him for a while.  I closed my eyes and thought of how far we have come.  How I never in a million years would have dreamed that I would be told "Your son is autistic." How never in a million years would I have dreamed that I would be hosting an autistic birthday party.   How everyone has a story to tell.  Everyone has a battle to fight.  My battle is my son's autism.  I will fight this battle until the day I die.  I will teach his brothers how to fight the autism battle.  Somedays I will come out on top, some days I will be defeated, and some days I will raise my white flag.  Autism, today I fought you and won!  What a glorious day it was. 

In victory,

Paula