My Blog Has Moved

My blog has moved.  If you are interested in following our autism journey, please check out Autism Diaries: For Every Locked Mind There is a Key to Find at www.lowellsun.com

You will find my blog under the blog lifestyle link.  Thank you for following our autism journey.

Fondly,

Paula

Changing the World

      Five years ago today, I received my third gift.   At 10:27 p.m., Gavin graced the world with his presence.  I think back to the day that I found out that I was pregnant.  Somedays it feels like yesterday.  The pregnancy came as a shocking surprise to me.  Phil and I were done having children (so we thought).  Our youngest at the time was 3 1/2 and life was finally getting a bit easier.  No more diapers, diaper bags, and sleep deprivation.
     I cried for three days when I found out I was pregnant.  Not because I didn't want another child.  I wanted this child as much as my other two.  I just wasn't expecting it.  My second pregnancy was extremely difficult and consisted of 10 weeks of bed rest.  I was now 38 and considered a high risk pregnancy.  Phil and I had moved on from our baby phase.  Which meant we got rid of everything.  So, we had to start over with our third.  The first way we did this was by finding out the gender of our child.  Was I disappointed when I found out I was having my third son?  Not in the least.   Ok, well, maybe a little. Would I trade him in for a girl?  Hell, no. I can't imagine my life without any of my boys.  We agreed to not have amniocentesis.  So what if my son had down syndrome?  Would it matter?  No, it wouldn't.  Would I love him any less?  No, I wouldn't.  Little did I know then that he would bring autism into our world.  The next thing we did was choose a name.  The only name we could agree upon was Marshall.  So, Marshall Richard was going to be the name of our third son (so I thought).
     June 29, 2008 at 3:00 a.m., my water broke while we were camping.  I told the little guy to wait until we at least made it home.  I was calm and relaxed.  I finally decided to head to the hospital around noon.  The doctor and nurses told me to expect him to be born within a few hours.  My little guy had his own plan.  He was going to make all of us wait, and that he did!  I remember seeing his beautiful face for the first time.  I looked into his eyes and told him that we needed to have a long talk.  I then remember the doctor asking us what his name was.  Phil replied, "Gavin."  I quickly looked at Phil in shock.  "Gavin, where did that come from? Well, I guess his name is Gavin."

  
      My goal was to keep today as low key as possible.  Gavin started at a new school this week with new staff.  Which by the way, he did a fabulous job handling this transition.  Thank you, Fay and Lisa, for already loving my boy.  Gavin enjoyed a morning visit from his Godmother who came bearing his favorite donut and presents.  We then celebrated as a family at his favorite restaurant.  We topped it off with delicious bakery cupcakes.  When it came time to sing and blow out his candle, he had a complete meltdown, which included screaming and biting himself.
     I reminisced with the boys during lunch.  We talked about what they loved to do and play with when they were five.  William and Landon loved Power Rangers, Batman, Ben Ten, legos, and transformers.  William and Landon loved blowing out candles and having happy birthday sung to them.   Gavin loves things that most two - three year olds love; Blues Clues, Teletubbies, and the Wiggles.  He has meltdowns over candles and the birthday song.
     I realized with my third pregnancy that the good Lord had different plans for me.  He planned three children for me and not two.  I realize now that not only did he have different plans for me, he had a different life journey for me.  A journey which includes autism.  Would I want things to be different?  Well, it depends.  Would that mean taking away Gavin's autism?  Hell, yes.  But wait, taking away Gavin's autism would make him an entirely different person.  Hell, no.  No matter how difficult things can be, I wouldn't change him.  I wouldn't be who I am today without my three boys.  I wouldn't be who I am today without autism.  Thank you, my sweet boy, Gavin.  You have taught me more then once what the true meaning of life is.  It's about unconditional love, acceptance, patience, kindness, and doing for others.  Happy birthday, Gavin.  You graced the world with your presence on June 29, 2008.  The world is listening,  you are helping to make a difference, you are changing the world.

All my love,
Mom    

My Vow to Autism on our Anniversary

Dear Autism,

Today is June 18th.  A date that changed my life forever.  A date that I will always remember.  Three years ago today, Phil and I sat in front of a team of doctors.  We heard three words that forever changed us, "Gavin has autism."  The words came eleven days before my baby turned 2.  Three years ago today you turned my world upside down.

You brought countless hours of intensive early intervention.  You locked my son's mind from making eye contact, communicating, playing with toys, following directions, and talking.  You exhausted him and me.  Three years ago today you turned my world upside down.

       

You brought questions with no answers, you brought flapping, jumping, bouncing, and visual stimming.  You brought tears and heartache.  You brought words, "Why? How? What?"  Three years ago today you turned my world upside down.

You brought an IEP, specialized teachers, staff, and therapists.  You brought social stories.  You brought a specialized program to meet my son's autistic needs. Three years ago today you turned my world upside down.

Autism, today was a special day.  It was our AD (autism diagnosis) anniversary and it was our boy's graduation day from Pre-K.  Today, I embraced you and held your hand.  I held my tears and held my head high.  Today, I thank you.  I thank you for helping me learn through my boy's eyes.  I thank you for making me strive to be a better mom, a better teacher, a better person.  Three years ago today you
turned my world upside down.

Autism, today you turned my world right side up.  You have brought countless special people into our lives.  You have brought the G-Man Foundation.  You have brought a Pre-K celebration.

  

Autism, today I made a vow.  However, you probably already knew that.  Today I thought of the future.  Three years ago today you turned my world upside down.  Today you turned my world right side up.  I vow to make this world more understanding of you.  I vow to make this world more aware of you.  I vow to make this world more accepting of you.  I vow to make this world embrace you.

Autism, happy three year anniversary.  I love you, Gavin!

Love always,

Mom

Even the Biggest Losers Sometimes Win.

     At the beginning of March, I embarked on a new journey.  A journey of weight loss.  I received an email about a weight loss challenge that was being offered to the staff at my school, the Biggest Loser.  The first weigh in being March 1st and the last being May 31st.  The amount of weight you lost each week would be calculated into a percentage.  The person with the highest percentage of weight loss at the end of the competition would win money.  It was a $25 pay in, and you had to pay $2 at the weekly weigh in if you gained during the week.   I remember thinking, "hmmm, I can't seem to shed this baby weight. Instead of losing it, I keep gaining it.  I haven't weighed myself in months.  Now that I think of it, I haven't weighed myself since the autism diagnosis.  I barely squeezed into my clothes each morning, always thinking that my clothes were so old that they had to be shrinking.  I decided that the challenge was just what I needed to reclaim myself physically.  I paid my $25 pay in, walked into the nurse's office on March 1st and stepped onto the scale.  I said to myself, "Holy crap!  Her scale is completely wrong.  I can't possibly weigh that much!"  We were all given a number instead of a name.  This way our results would be kept confidential.  Nurse Jill then told me that I was lucky number 13.  Lucky number 13?  How could that be?!  I was the heaviest I was in my life besides the times that I was pregnant.  I hated the number 13!  I went home that night after my first weigh in.  I sat for a while and cried.  I cried about the old me, I cried thinking about the task that lied in front of me.  Not only did my son's autism diagnosis bring me heartache, it also brought me weight gain.  I spent the past two years juggling all of his early intensive intervention, working full time, as well as attempting to meet William and Landon's needs.  I thought once Gavin went to school full time that it would be easier to budget my time, however, it became more difficult.  It's been hectic attempting to juggle William's and Landon's sports schedules, as well as help them with school projects, studying, and homework.  Never mind the school work that I was bringing home each night.
     So, it began......the journey of weight loss.  I awoke the next day after my first weigh in and re-evaluated my life.  I realized that I was putting myself last.  I spent all of my time taking care of everyone else, that there was no time at the end of the day for me.  I realized then that my lifestyle needed to change.  I needed to reclaim ME!
     The next three months consisted of  calorie counting, very limited alcohol consumption, and lots of exercise.  My alarm went off most mornings for my 4:30 am exercise wake up call.  Most evenings I would lace up my sneakers and go for a long run.  It was the first time that I put myself first for one hour per day.  Each week, I stepped on the scale and watched the number go down.
     On May 31st, Lucky Number 13 was awarded the title of The Biggest Loser.  I am now $468 richer and 20 lbs thinner.  Thank you to each one of my colleagues who participated in the contest.  You helped me, inspired me, encouraged me, and taught me how to reclaim myself!
     Next week is Gavin's ADA (Autism Diagnosis Anniversary).  It is the day that our lives changed forever.  Gavin will be graduating from his Pre-K CSA program 3 years from the exact date that we were given the diagnosis.  This week William was inducted into the National Junior Honor Society.  While I was beaming with pride during the ceremony, I also had what I called my autism demons pay me a visit.  These demons make me feel sad for what Gavin will not have!  They take away from me living in the moment and enjoying what my other two boys do have.  I am working hard to rid these demons from my life, and to learn how to live in the present moment for each one of my children's victories.  I'm learning to take life one minute at a time, focus on the present road, and look for the humor in each situation.  More importantly, I'm learning to find time for myself and live a healthy, happy life.

Lucky Number 13 (a.k.a. The Biggest Loser),
Paula
  

  
  
  
  

  

Cloudy with a chance of Autism

     I have been meaning to write for a while now, however, I just couldn't find the words.  April was a difficult month for me on this autism journey.  April is autism awareness month.  Honestly, I am glad that April has gone.  The past couple of years I have always been so excited for April to come.  It was our month to embrace autism, celebrate autism, and work hard to spread awareness.  I had different feelings this year.  I'm not sure why.  When I dig deep down I find my answer.  The answer that I hate to say out loud.  My son has autism, and some days are just so damn difficult.  His autism is not going away like I wish it would.  He is getting older, and his autistic stereotypical behaviors are not 'cute' anymore.  His behaviors cause people to stare.  I'm actually getting used to the stares now.  I took Gavin to the grocery store recently.  He was so overstimulated.  He ran all over the store, flapping, jumping, laughing, throwing everything he loves into the carriage, and even running away from me.  I kept my composure.  He was so happy.   I could see the stares.  I could feel them.  Then I thought to myself, keep staring people.  It's only then will you really see my beloved Gavin.  He is special and one of a kind.  He has autism and will teach you a few things.
     We had a very successful G-Man Foundation 5K race in April.  There is a lot of planning that goes on to help make this event successful.  Thank you to our race director, Kathy Marandola, for her hard work and dedication.  I would also like to thank all the volunteers, the runners, the walkers, and the sponsors.  Together we are working hard to make a difference.
     I think after the race is when I hit my low.  It was like this autism cloud stopped over me and stayed there for a while.  I cursed it many days and asked it to leave, however, it just wouldn't listen.  This autism cloud made me question myself.  It clogged my vision, and stopped me from writing.  It made me want to escape.  I really don't think I could put into words how I felt this past month.  I hid my tears and sadness.  I put a smile on my face and faced each new day.  Most days I wanted to cry my eyes out.  Cry over a life I thought I was going to have.  Cry for my days before autism.  Cry for a do over.  Cry, cry, cry!  Then I would begin to feel guilty.  Guilty that I even felt this way.
     When May 1st came, I felt a sense of relief.  I made it through a difficult month.  This is my life now.  A life of ups and downs.  A life of success and defeat.  A life with good months and bad months.  I am beginning to learn to accept the bad with the good.  The month of April brought many tears.  Goodbye April.  Hello May!  I'm working hard to get out of my autism funk and push myself to move forward on this journey.  I'm glad I find the strength to write and share my true feelings.  I often find that after I finish a new blog entry many people will say to me, "Wow, I had no idea that was how you were feeling."  Sometimes I will even receive an email from another autism parent who will write, "Thanks for putting into words exactly how I have felt."
     Lastly, I would like to take a minute to wish all moms a very happy Mother's Day!  I send an extra special wish to all the special moms out there.  The special moms who have special children, or who have faced the unimaginable and have lost their child.  Autism has taught me many things......Mother's Day is not about the gifts.  It's not about the fancy restaurants.  For me it's about celebrating my children.  I took some time out of my day and laughed with them, gave them an extra hug and kiss.  I also laced up my running shoes this morning and ran.  I ran well over three miles in complete silence.  I dedicated my silent run to all the moms out there who will never get to hear their child's voice again.  Who will never get to hug or kiss their child again.  My life completely changed when I became a mother.  Motherhood taught me what unconditional love is.  My life completely changed again when I became a mother of a child with autism.  Autism taught me to not take life for granted because in a blink of an eye everything can change.  I look at things differently now.  I appreciate different things.  I cry often, and I laugh.  I will continue to move forward even when autism makes me take a few steps back.   I will continue to try to be the best mom possible to all three of my boys.  I will continue to find the positive in autism even when my vision is clouded with the negatives.  Most of all, I vow to make a difference.

Looking forward to the autism sunshine,

Paula

Pictures of You, Pictures of Me

Dear Autism,

    I'm not sure where to even begin, or even what to say to you this year.  I guess some years will be like this.  I guess I will begin by saying, "Happy Autism Awareness Day!"  Today is your day.  The day once a year when we place blue lights in our windows.  We hang our autism wreath on our front door, and shine a blue floodlight on it.  Today is the day that we shine a light on you.
  
      Lately I find myself looking at Gavin's baby pictures.  I find myself staring at his eyes.  Looking for signs of you, Autism.  Wondering and asking were you there then?  Did I just not see you?  When did you first appear?  I often think of the song, Pictures of you.  Pictures of you, pictures of me, hung upon your wall for the world to see.  Pictures of you, pictures of me, remind us all of what we used to be.  I guess you could say we used to be a family without autism.  And now?  Well, I guess it depends on the day of the week, the moment in time.  We have our good days, and our bad days.  We have our days where because of you we have to divide and conquer.  Days where we do things separately instead of as a family.  Days that we are victorious, days that we are defeated.  Days that we laugh and smile because of you.  Days that we curse and despise you.  Some days we would like to trade you in, most days we learn a lot from you.

     Before I went to sleep last night I sat and watched you.  I watched you breathing, I watched you dreaming.  I wondered what you were thinking.  I wondered how you were feeling.  Autism, you looked so beautiful, so innocent.  I hugged and kissed you, and made a promise to you.  I promised to keep fighting for you, I promised to keep spreading awareness.  I promised to support you and no matter what welcome you, even on my bad days.  I promised to shed more tears of joy, then tears of sorrow.  I promised to continue to love you unconditionally.

     Today is your day, Autism.  Today we will spend some time as a family and reflect on what we love about you!  We will share our special memories we have of you.  We will talk about our future with you.  We will shine a light on you!  Pictures of you, pictures of me hung upon your wall for the world to see.  Pictures of you, pictures of me, remind us all of what we could have been, what we could have been.................Happy Autism Awareness Day!

All my love,
Paula

Carry On

     I can't believe it is already March, and that Gavin will be graduating from the Pre-K CSA (Classroom for Students with Autism) at the Pawtucketville Memorial Elementary School.  It feels like just yesterday I applied for a transfer to teach at P'Ville so that I could be close to him and be involved in his educational experience and growth.  Gavin will be moving on to a K-2 CSA Program.  We are not sure which school he will be assigned to as of yet.  To say that I don't have anxiety in regards to him moving on would be a lie.  I am anxiety ridden.  Anxiety about him being at a different school, anxiety in regards to his progress.  Anxiety about his transition.
     With March comes kindergarten registration.  The time of year when 4 (soon to be 5) and 5 year old children tour schools with their parents.  The time of year when parents register their babies for kindergarten.  Lately, I have been really sad thinking that I will never get to experience some of the same traditional things with Gavin that I got to experience with his two older brothers.  Last week I saw a family touring our school with their child in hand.  And of course I thought, "how come?"  How come Gavin?  As I was thinking this, a third grader walked past me and said, "Hi Gavin's mom!"   I smiled, said hello, and thought, "That is right, I am Gavin's mom".  My heart then smiled as I thought of how far Gavin has come.
     Running continues to help clear my mind, however, sometimes it also makes me think long and hard  about life's lessons.  During a run last week I was thinking about autism speaking to me.  I then realized that autism speaks to me each and every day.  This is what I sometimes hear............

Dear Paula,
           I entered your life June 29, 2008, however, we weren't formally introduced until almost two years later.  I saw how you looked at me that first year.  I saw your raw emotions, your fear, your guilt, your sadness, your grief.  I witnessed first hand your determination.  Determination to get to know me better, determination to unlock you boy's mind and teach him how to speak.  You won that battle.  Matter of fact, there are many battles that you and I have had.  Some you have won, some you have lost.  I have noticed that over the last two years our relationship has changed.  You have learned not to battle with me anymore.  At times, I do still see your fear, your guilt, your sadness, your grief.  However, I don't see those times as frequently as I used to.  Instead, I see you carry on.  Carry on with unconditional love, acceptance, devotion, and determination.  At times, you despised me.  That look has also faded.  You see, Paula, what you don't realize yet is that you have won the lottery.  The lottery you have won doesn't consist of money.  It consists of priceless life lessons that you will continue to learn from me.  You won the lottery that day in June when Gavin came into your world.  Your chances of winning were 1 in 88, and your boy was that 1.   When your feelings of sadness creep up on you, then take a step back and remember to celebrate.  Celebrate your win. You and I will continue to have long talks as to how to keep unlocking your Gavin's mind.    Continue to look at me with your heart, for your love sees more clearly.  Lastly, continue to carry on.

Your friend,
Autism

     I have come to realize that, yes, I may not get to experience the same things with Gavin as I did with his two older brothers.  Instead I get different experiences, and in my heart different doesn't mean less.  I am learning to take a step back and celebrate my winnings.  Some days are easier then others, but for now I will carry on.

Carrying on,

Paula

    

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





  

Boogies with Milk and Cookies

     We survived the holidays!  Phew! Overall it was a difficult Thanksgiving.  I ran out of steam around Thanksgiving.   I was tired of being on this autism journey.  The week of Thanksgiving I clocked 15 miles with my running sneakers.  I realize now that running was helping me to escape.  Escape from the autism meltdowns, escape from the stimming, escape from visuals, escape from autism.  I wasn't really thankful on Thanksgiving.  Instead, I continuously asked, "why?".  I questioned my parenting skills, I questioned my stamina, I questioned and cursed.  I also cried a lot.  As I often tell my coworkers, "Crying cleanses the soul."  Something I learned a long time ago from an amazing principal that I had the opportunity to spend 12 years of my teaching career with.  Thank you, Ray Sierpina, for teaching me that tears help to cleanse.
     I was hesitant to decorate for the holidays.  I was dreading how the physical change in the house would affect Gavin.  I can now say that he adjusted better than expected.  He loved the Christmas tree and all the lights.  He was the one turning the tree on each morning and evening.  However, he also loved playing with any and all Christmas decorations.  He broke quite a few decorations and ornaments.  I realize now that I probably should have 'autism proofed' the house during the holiday season.
     The weeks leading up to Christmas were up and down.  We got on our autism roller coaster again.  Some days were just down right difficult.  The difficult days I refer to as the days of darkness.  Days where Gavin struggled telling us what he needed or wanted.  Days where he couldn't self regulate.  Days where he would hit me, attempt to bite me, throw things, and scream.  Then there were days that I refer to as our rainbow days.  Days that Gavin was calm and was able to self regulate.  Days that Gavin socialized with his brothers.  Days that Gavin would say something that would make you smile.  Days that he would grab a guitar, strum it, and sing Jingle Bells.  I would remind myself to remember the rainbow days when we are having our days of darkness.  In order to see the rainbow you need to go through the darkness.
     Gavin continues to make great progress at school.  We had an IEP meeting.  His IEP will be amended, and, he will attend the regular Pre-K class for an hour per day.  Basically, he will be with typically developing peers for an hour a day.  Something I thought would never happen.  Great news.  His teacher, Lynne, and I have noticed a huge burst of language lately.  When asked what he wanted for Christmas, he was able to tell us, trucks and dinosaurs.  Gavin's new obsessions:  trucks, Jurassic Park, and the Beatles.  He loves the song, "Baby you can drive my car."  He likes to have it on repeat play over and over again. He also loves to play it very loudly.  I think it is his way of letting me know that he is the one in the driver's seat, not mama.  The day before school vacation we had an all school assembly.  The entire school was in the gym singing Christmas songs, and many parents were there also.  After the songs, our principal, Mr. Stahl, announced over the microphone and in front of the entire school, the students who were nominated by their teachers for "We Try Our Best."  The students who were nominated received a certificate.  It is along the lines of student of the month.  Once the students' names were called they had to walk across the gym and receive their certificate.  I was ecstatic, surprised, amazed, and emotional when I heard, Mr. Stahl, say  "Gavin Peters."  All my students started cheering for Gavin. It was so difficult to hold back my tears.  I had no idea that he had been nominated.  Lynne prepared him so that he would  walk across the gym and receive his certificate.  Which he did without holding her hand.  That was a rainbow day for us.
     We tried to keep Christmas as low key as possible for Gavin.  Christmas Eve consisted of our family ritual.  Reading, The Night Before Christmas, and leaving cookies and milk for Santa and carrots for Rudolph.  Gavin wanted to leave apples for Santa.  He also wanted to leave Santa some boogies.  As we were putting everything on a plate, I looked over and noticed Gavin picking his nose.  Well,  once you call attention to negative behavior you might as well as raise the white flag.
     Gavin woke at 4 am Christmas morning.  He didn't ask to open presents.  He didn't ask if Santa had come.  This is what he does often.  Wakes and does not go back to sleep.  I remember when we first got the autism diagnosis, a lot of people asked me if he slept.  I then learned that many children on the autism spectrum have difficulty sleeping and have awful sleeping patterns.  Gavin sleeps great some of the time, other times I am running on pure exhaustion from his out of sync sleeping pattern.
     Both Gavin and I ended up with the stomach virus during the week.  The virus for him lasted a couple of days.  The worst part was that he couldn't tell me that he didn't feel good.  I did notice the past couple of days that he is flapping and jumping a lot.  I'm guessing it's due to his body fighting this awful virus. He becomes traumatized when he vomits.  It is heartbreaking to watch.  He usually yells, cries, and flaps.  We have been trying to teach him that he needs to vomit in the toilet.  I have spent days cleaning up vomit because he will be running around like he is fine one minute, then the next minute he is vomiting all over the place.  Gavin woke around midnight this morning.  He was yelling, "no! no!" in his sleep.  My gut was telling me to get him to the bathroom.  He began crying and flapping.  The next thing I knew he was vomiting all over the bathroom. I called for Phil to come help.  We managed to reassure him that he was ok, and hold his head over the toilet.  After cleaning up the bathroom I glanced at the time.  12:10 am.  It was a new year.  Many people were out celebrating.  Many were toasting with champagne.  Many people were embracing their loved ones.  I looked over at Phil and gave him a high five.  A high five for helping me teach our boy to vomit in a toilet.  A high five that we made it another year on this autism journey.
      Before I fell back to sleep I thought of how this wasn't the path I would have chosen.  I thought how I often see pictures of families on facebook and am jealous that all their children are typically developing children.  I thought about how many families don't have to over plan holidays, don't have to worry about the fact of decorating their house for Christmas may throw 'off' their autistic child.  I thought about my younger years before children. How I had my whole life planned out.  I thought about champagne, new year's resolutions, celebrations, and midnight embraces.  Then I thought about how much progress my boy has made.  How much hard work has gone into his progress.  I thought about boogies with milk and cookies.  I may not have chosen this path, but there is a reason I was placed on it. I will never give up hope.  I am slowly finding that key.  This path has led me to bigger and greater things.  It reminds me often that life isn't perfect.  It reminds that you have to walk through the darkness in order to see the rainbow.


Enjoying the boogies with the milk and cookies,

Paula

  

          
   
   
     
           

Faith, Hope, Love, and Inspiration

     I started a new blog entry a few weeks back.  I was slowly adding and saving updates about Gavin and our journey with autism.  Today, I went ahead and deleted that entry.  I have decided that this entry is going to be entirely different.  This entry will be written about what I do 365 days of the year.  No, I am not talking about being a mother of a special needs child.  I am writing about being a special needs teacher.
     I remember the day so clearly.  I was a senior in high school.  I was about to turn 18 years old.  I had to decide what I wanted to do with the rest of my life.  I remember the day I wrote it down, Special Education Teacher.  I closed my eyes and dreamed about teaching in a small town.  My dreams consisted of teaching students with learning disabilities.  Students that needed a little bit of extra support academically to help them absorb the curriculum.  Never in my wildest dreams did I ever dream or think about teaching "those" kids.  "Those" kids being students with an emotional disability.  I remember graduating from college and being offered my first teaching job in a public school system.  I actually had two job offers on the table.  One being in a high school resource room, the other being a teacher of  "those" kids.  That job offer came 19 years ago.  19 years ago I chose to be a teacher of  "those" kids.  The kids who have an emotional disability.    "Those" kids are now considered "my" kids.
     Some of my kids have bipolar disorder, schizophrenia, fetal alcohol syndrome, oppositional defiant disorder, obsessive compulsive disorder, mood disorder, and post traumatic stress disorder.  Some of my kids have witnessed domestic violence and have experienced unspeakable trauma.  I have experienced manic episodes, physically aggressive cycles, and watched them relive trauma.  I have been spit at, kicked, punched, bruised, and bitten.  I have had my hair pulled and been beaten with a shoe.  I have had visits to the emergency room as well as multiple sessions of physical therapy due to injuries from some of my kids.  Some of my kids have verbally threatened to bring a knife to school and stab me.  Some of my kids have told me that they hate me and wanted to bring a gun to school to shoot me.  Some of my kids have threatened to take their own life. Some would say that some of my kids suffer from a form of mental illness.
What do I say?  I say that my kids struggle with making friends.  My kids struggle with expressing their anger and frustration.  I say that my kids are often misunderstood.  I say that my kids are great kids.  They are kids that need a teacher to believe in them.  They are kids that need a system that doesn't fail them.  They are kids that I will fight for.  They are kids that I will work overtime to get them to appropriately express their anger.  They are kids that are always on my mind.   They are my kids!
     I spent most of the day yesterday glued to the television.  Watching the news coverage about the unspeakable tragedy that happened in Newtown, CT.  I cried thinking of all those innocent children.  I cried hearing about the teachers and staff that died protecting their students.  I, like everyone else, wanted answers.  Why did this happen?  How could this happen?  Some people blame it on the gun laws.  Some people blame it on mental illness.  We are always looking to blame someone or something.  What happened in Newtown could happen anywhere.  We, as a society, need to change.  We need to believe in each child.  We need to help the system so that it doesn't fail our children.  We need to show kindness and love.  We need to work together to rid this world of violence.  We need to make this world a safe, loving, and accepting place.
     Tomorrow I will go to school.  I will greet each of my special kids with a smile.  Some will smile back, some will come in angry, some will not make eye contact, some will come in exhausted, some will greet me with a hug.  No matter how they look, no matter how they act, no matter what they say, no matter what they do, I will be thinking of four words.  Faith, hope, love, and inspiration.  I have faith in my students, I have hope for their future, I will show them love, and most of all they inspire me.  Inspire me to work harder for them, inspire me to believe in them, inspire me to fight harder for them. 19 years ago I welcomed "those" kids into my life. "Those" kids changed my life.  They are my teacher.

With faith, hope, love, and inspiration,

Paula Peters
Adjustment Teacher  
   
     
   
     

A letter to my firstborn on his birthday

Dear William,

     12 years ago today at 3:27 p.m., I became a mother.  12 years ago today I began an incredible journey of motherhood.  It feels like 12 years have gone by in a blink of an eye.  I remember when you were placed in my arms for the first time.  The sight of you took my breath away.  I remember the first time you smiled.  I remember your first word, your first step, your first day of kindergarten.  I remember the day you became a big brother.  I experienced so many "motherhood firsts" with you.

     I notice what a kind hearted young man you are growing into.  I am so incredibly proud of you.  I often find myself stopping what I am doing to watch you interact with your baby brother.  You make him laugh and you teach him about unconditional love.  I appreciate your honesty, and hope that you will always be willing to tell me how you feel and what you are thinking.  I know that there are days that you despise autism being in your life.  I know there are some days that you wish things could be different.  William, some days I have the same wish.  I know in my heart that autism is helping to shape you into a better person.  You can now pick autism out in a crowd.  You are leading a road to acceptance and understanding.  You recognize special needs in different people.  You acknowledge that it is ok to be different.  I love how you have nicknames for your little brothers, and I love how they look at you with such love in their hearts.  

     I dream about your future.  I dream about where you will go to high school, which college you will attend.  I dream about which career path you will take.  I dream about the day you become a father.  I hope and pray that life will be kind to you.   Thanks for loving your brothers.  Thank you for guiding them, having patience, and being a great role model.  Thank you for choosing me to be your mom.  Happy birthday to my firstborn son.  I love you.

Love,

Mom  xoxo

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




  

The Rice Between My Toes

     Overall, it has been a long difficult emotional week.  I have visited homework hell where at each corner was a new project waiting to be finished, tests and quizzes to study for, and homework assignments to complete. No, I am not talking about my homework, I am talking about William and Landon's homework.  William is very good about completing his homework, studying, and working on his projects.  Landon, on the other hand needs a fire lit under him.  He will drag his feet until the last minute.  Not sure who he takes after, but I know it's not me.  ;) Our homework sessions this week have been exhausting, especially after a six hour day of teaching students with an emotional disability.  Just when I thought my trip to homework hell is over, I then enter self regulation hell.  It's been an overall difficult week for Gavin in regards to his self regulation.  It's like he is crawling out of his skin. It's been difficult for him to sit still, and his sleeping pattern has changed.  I noticed last night that he has a rash on his behind.  Not sure if it is dry skin or is caused from yeast.  Gavin has had quite a few yeast rashes.  Which now leads me to think....hmmmm...Gluten or no gluten?  He had his four year check up last week.  I can't say enough good things about our pediatrician, Lisa Sevigny.  She is the one who agreed with Phil, and saw the autism red flags.  She is the one who made us pursue every avenue.  She is the reason we started early intervention, and got Gavin the services he needed.  I will be forever grateful to her for this.  She told me last week how happy she is with all his progress, and how great he is doing.  I remember Gavin's eighteen month check up like it was yesterday.  He didn't talk, he didn't make eye contact,  he ran around in circles in the exam room and stimmed off the lights.  I remember, Dr. Sevigny's soft spoken voice.  I remember her telling me she thought he had autism.  I remember clearing my throat and saying, "Oh, ok.", and thinking not my kid.  Clearly she is overreacting. Last week, she told me that she had no recommendations because I have everything covered and am on top of it.  It was music to my ears.  Then I thought about how much additional work comes with raising a child with special needs.   I was thinking back this week to two years ago when Gavin was receiving 25 hours of intensive early intervention.  William was sick for days.  I was finally able to get him to the doctor after three days of a high temp and of him complaining about how sick he was.  He ended up having strep, and was out of school for a total of four days.  I think back to that time and remember how Phil had just started his new job in Billerica as an assistant principal.  How the burden of juggling the household, the kids, and Gavin's therapy schedule rested on me.  It was such a demanding and draining year, and we celebrated when it was over.  Last year was a bit more relaxed.  This school year seems to have started out with a busy bang.  Phil has enrolled in a C.A.G.S. Program.  (Certificate Advanced Graduate Studies).  He is currently working on becoming certified as a school superintendent, and then his next step will be working towards his PhD.  So, this is part of the reason the year has started off so busy.  The majority of the homework burden rests on me, as well as attempting to schedule additional speech and OT evals and services for Gavin.  The one thing I am realizing about having a child with special needs is that not only are their needs special, but they also consist of additional therapy needs outside of school.  This is something I have been dragging my feet about for the past year, and it now has to happen.  Especially with Gavin's sensory needs that seem to keep shifting.  I am also working on cleaning up the basement and creating him a sensory space that consists of an indoor swing, a trampoline, as well as different sensory play stations.  I just have to find the spare time to work on it.
     So, to revisit the mention of gluten.  At Gavin's check up last week, Dr. Sevigny asked if I would ever consider a gluten free diet.  I told her that I wasn't sure.  I was still on the fence about it.  She suggested that maybe try it during the summer months.  This way I wouldn't be teaching full time and would have more time to focus on eliminating the gluten from his diet.  I just may try it this summer, and collect data.  The data will help me answer the question....gluten or gluten free?
     Last week I walked into the bathroom to find Gavin standing in the toilet splashing water all over himself. He had both feet in.  Luckily there was nothing in the toilet.  I immediately filled the bathtub, and he spent well over an hour in there.  Then it dawned on me.  He is missing the pool.  He no longer is able to swim for hours each day.  Probably one of the reasons he has been crawling out of his skin lately.  He then asked me for a rice bucket.  A rice bucket?  Ok, Gav, one rice bucket coming up.  We took a trip to the dollar store, stocked up on bags and bags of rice, and created one rice bucket.  Gavin now uses his rice bucket each day.  He loves it.  The only negative.....there is rice all over my house!  Every time I turn around I am stepping on rice.
     We have started practicing for Halloween.  Gavin has tried on several of William and Landon's old costumes. This has been our October ritual since the AD (autism diagnosis).  We practice wearing costumes, holding a candy bag, and saying, "Trick or Treat."  I will create a social story about Halloween for him to read with the hope that it will help him to make sense of putting on a costume and going trick or treating.
     I have recently starting running again.  Running is something I haven't done since BC (before children).  My oldest will be twelve next month.  So, I can't believe it's been twelve years since I was an avid runner.  I am currently running 9 to 10 miles per week.  I am finding that running is helping to save my life.  My life as a mom with a son with autism.  Running clears my mind and helps to focus it on what is really important.  It reminds me to leave behind all the meaningless things.  It helps to focus me on this journey.
     As always, thanks for checking in.  Not only does running save my life, but my family and friends do also.  They listen when I'm down, they catch me when I fall, they love me for who I am, and support me as a person, a friend, and most importantly as a mom on an autistic journey.  I continue to travel along on this journey called autism.  I make mistakes, I succeed, I cry, I mourn, I laugh, I second guess, but most importantly, I enjoy the rice between my toes.

Enjoying the rice,
Paula
     

   

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

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