For the Love of the Game

     This past week has been difficult for Gavin.  His sensory needs seemed to stabilize the second week of school.  This past week his entire sensory integration system shifted.  I was continuously reminding him to take his hands out of his pants, or out of his shirt.  He also wanted continuous oral motor input.  He would either be making noises with his tongue, spit, mouth, stuff his mouth with food, or want to continuously eat and eat and eat.  By Wednesday, he was on overload, while all I wanted to do at this point was curse autism for the hold it had on my boy.  I was left guessing as to what caused the shift.  What caused autism to grab and hold tighter.  I had two guesses.  One being the change of the seasons.  The transition of wearing shorts and short sleeves to long pants and long sleeves. The other reason being the full moon!  Gavin spent some time outside this morning.  When he came in, he looked at me and said, "pj's, pj's."  He then spent the rest of the afternoon lounging in his pj's.  The quiet before the storm.....late this afternoon I took a look at him and noticed it.  His eyes said it all.  He was sick.  Sure enough, his temp was 103.  So, now I am thinking or should I say guessing that his sensory shift was due to him getting sick.  He worked so hard to regulate himself this week, and struggled so hard to do this. When this happens, autism clenches, holds tight, and puts up a fight to loosen its grip.
     Lately when Gavin wants something he will ask you in a form of a question.  For example, he will say, "Mama, do you want peanut butter toast?"  My response will be, "No Gavin, I do not want peanut butter toast."  He will keep asking you over and over again until you ask him, "Gavin do you want peanut butter toast?"  His response will be, "yes!"  We are currently working on teaching him how to ask for things without asking if you want it.  Just one of our many autism struggles.
     With the changing of the season, comes the changing of sports and activities.  My boys have transitioned from summer basketball to football and scouting.  Football is such a great outlet for William.
     Gavin has attended all of William's football games.  Overall, he has done well.  He enjoys walking up and down the bleachers during the games.  I usually am crossed eyed by the end of the game from attempting to keep one eye on Gavin and the other eye on the game.  After each game, Gavin loves to carry William's football equipment to the car.  I am guessing he gets a lot of sensory input by carrying the heavy equipment.

Landon enjoys participating in boy scouts and will be starting fall basketball soon.
Recently I have thought about what sport Gavin would be playing if autism didn't have a hold on him.  Would he want to try soccer? T-ball?  Would he want to ski?  I see pictures of 4 years olds who are playing their first sport, and I become envious.  Envious that these little boys and girls will find a sport, and play for the love of the game.  I recently told my two older boys that we need to try to find a sport that Gavin can understand and play.  Maybe he will like football?  Their response was, "Mom, Gavin has autism.  He won't be playing sports."  My reply, "Yes, Gavin does have autism, however, we will help him do anything he wants to do.  We are a team.  We will help him understand sports through his eyes, and play for the love of his understanding of the game."
     Autism, you continue to have a hold on my boy.  Sometimes your grip is tighter, and sometimes it loosens a bit.  We celebrate our victories and pick ourselves up from our defeats.  Autism, you are my game, and I am learning to play for the love of the game.  Thank you for the reality check this week.  As much as you sometimes defeat me, you also remind me of what is important.

Playing for the love of the game,

Paula

You Can't Always Get What You Want.

     This week we began a new school year.  Gavin started his second year in Pre-school.  He continues to attend the Pawtucketville Memorial Elementary School where he is a student in a self contained PDD classroom.  What I mean by self contained is that all the students in his classroom have an Autism Spectrum Disorder.
      I noticed that while preparing for his first week of school the anxiety began building.  Anxiety over another transition, anxiety over another change in routine.  I felt I was doing good by marking it on the calendar and reminding him, and having a back to school countdown. I tried really hard to stay one step ahead of Gavin.  I attempted to read his moods, his frustration, his anxiety.  His shift in behavior this time came in the form of oral motor.  I noticed this shift in wanting sensory oral input during summer school.  Gavin began grinding his teeth.  The grinding was very loud and distracting.  Gavin used to grind his teeth a lot after his initial autism diagnosis.  During ABA therapy sessions we would attempt to get him to imitate our vocal sounds to distract him from the teeth grinding.  During summer school his teacher, Lynne, used visual pictures that would represent "quiet teeth".  The teeth grinding seemed to fade during the summer, however, as summer progressed and we got closer to going back to school then he needed constant oral motor input.  Gavin would constantly be looking for food (mostly crunchy).  He would stuff the food into his mouth to the point where he would have to spit it out or choke.  Sometimes he would vomit from all the stuffing of food.  If he wasn't stuffing food into his mouth, then he was attempting to find input other ways, like clicking his tongue, swishing his spit back and forth, doing raspberries on some one's arm, biting furniture, biting himself, and biting me.  This need for oral motor input got progressively worse as the summer went on and finally peaked this week (his first week back to school).  I noticed the week before school started that even though he was needing continuous oral input, he was also talking.  He was using a lot of words.  That stopped this week.  The first two days of school, Gavin didn't talk.  He spent his days being echolalic (repeating back everything that was said to him).  It broke my heart and made my anxiety build.  I thought, is this it?  Will he continue to regress?  Will my once verbal child become strictly echolalic?  It kept me awake for most of the week and it kept my anxiety building.  Lynne and I met Thursday before school.  She did a lot of questioning, I answered, she consulted with our BCBA, Christine.  Christine suggested some new strategies to try in regards to the oral input and Lynne was able to pin point that Gavin was struggling because most of the kids he was in class with last year have moved on to different schools.  Gavin was actually beginning to call for his friends.  We think that he was having difficulty being with new kids, and was wondering where his friends were, however, he couldn't tell us this.  Instead he just stopped talking.
      From the moment each one of my children were born I already had a piece of their future mapped out.  A  consistent location on that map consisted of St. Louis Elementary School.  My father graduated from this same school, and I graduated from St. Louis Academy.  So, I planned and dreamed of each one of my boys attending this same school and developing their minds academically, socially, and spirituality.  I rejoiced in the fact that each one of my boys would experience the joy of having the same teachers.  However, the reality of this hit me this week.  Gavin will never attend St. Louis along with his brothers.  Gavin will never get to experience the teaching style of each unique teacher that his older brothers had.  Gavin will always go to a different school as them.  My anxiety began to grow as the week went on.  Thinking about all the obstacles my boy will face.  Thinking of all the obstacles our household faces.  Thinking about how an "autism meltdown" takes top priority over everything that may be going on at the moment.  Wednesday morning I asked Phil to drop William and Landon off at school on their first day.  I didn't have the strength or courage. I felt defeated.  Honestly, I just couldn't surround myself with happy parents.  Parents who don't face the same challenges as me.  Parents who don't have to travel along an autistic road.  I was glad when Wednesday morning came and went.  It's just another day that reminds me that we are beginning a new school year, and my son is still autistic.
     After school each day last week, Gavin had several meltdowns.  Lynne reminded me that he was holding it together all day at school, and releasing everything when he got home.  I was happy to see Thursday come.  Happy to get back into a consistent routine.  We all got into the car Thursday morning.  As we were waiting in the drop off line at William and Landon's school, Gavin kept repeating, "Go to William and Landon's school, go to William and Landon's school."  I had to remind him that he goes to 'Gavin's school'.  As soon as William and Landon left I just couldn't fight the tears any longer.  I cried the entire way to school.  What an emotional week it was.  Thank you, Lynne, for your patience, love, and understanding of my boy.  Thank you for working hard to get him back on track and talking at school again. Thank you for always going the extra mile for all your students.  Thank you, Janine, my coworker.  For listening to me during our lunch, and watching my eyes fill up with tears.  Your listening ear meant more then you will ever realize.  The people I have come to value most on this autistic journey are the ones who really listen and don't judge.
     By Thursday afternoon Gavin seemed to be back to his old self.  While walking out of school, hand in hand with me, he decided to imitate his principal, Mr. Stahl's laugh.  Mr. Stahl was speaking to a parent.  There were many parents around as well as some teachers.  Mr. Stahl laughed, and Gavin loudly imitated his laugh. I think everyone stopped and stared for a few seconds.   Of course as we were walking to the car I told Gavin that he can't be imitating Mr. Stahl's laugh, especially in front of parents!  Yesterday we were driving by a bar called the Boat House.  Gavin was able to read the sign.  He said, "Gavin go to Boat House."  I immediately started laughing.  I thought the rest of the way home of the Rolling Stones song, You Can't Always Get What You Want.  You can't always get what you want, but if you try sometime you'll find, you get what you need.  I may not have gotten what I wanted.  Instead, I got what I NEEDED.  I NEEDED autism.

Enjoying what I needed,
Paula