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

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 

My Dreams

I recently stumbled upon this poem.  

Welcome to Holland!  by Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this....When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guidebooks and make your wonderful plans.  The Coliseum, the Michalangelo David, the gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.  After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes and says, "Welcome to Holland."  "Holland?"  you say.  "What do you mean Holland?  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."  But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease.  It's just a different place.  So you go out and buy new guidebooks.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.  It's just a different place.  It's slower paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.  But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, "Yes, that's where I was supposed to go.  That's what I had planned."  The pain of that will never go away, because the loss of that dream is a very significant loss.  But if you spend your life mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.

June is a difficult month for me.  It marks our Autism Anniversary.  The time that the stewardess came and said, "Welcome to Holland."  We also celebrate Gavin's birthday on June 29th.  I have been thinking as his birthday approaches of all the things he would be doing as a 'typical four year old'.  I believe in signs.  I stumbled upon this poem two days ago.  Today, as I was driving, I noticed the licsence plate on the car in front of me.  It said "Hollnd".  

I do understand this poem, however, I do not agree with it entirely.  Yes, my dreams for my third son were lost.  However, I can say now after my period of grief, that my dreams for my third son, Gavin, changed.  We were suppose to arrive in Italy.  Instead we arrived in Disneyland. A land where dreams can come true. My dreams for Gavin are not the same as when the doctor placed him on my round belly on June 29, 2008. My dreams for Gavin is that I can provide him with the best possible life that includes love, acceptance, and understanding.  My dreams include finding his key. They key that unlocks his mind.  

Thanks for taking the time to check in.  I am looking forward to celebrating Gavin's birthday.  Be watching for a blog update this weekend.

Fondly,

Paula

Good Morning Autism

Good Morning Autism,
     Today makes two years since you knocked on our door.  I knew of you, but didn't know you personally.  Never in a million years would I have thought that my family would get to know you closely.  You knew that we would have a close, personal relationship before I did.  When you entered my life, I stood at a distance and wished you away!  You attempted to embrace me.  I cried, and cursed you. I stood fearful and longing for you to leave all while you screamed for my attention.  I did not believe in you, I did not like you, I wish you never existed.  I cried myself to sleep each night, asking why, asking how, asking what do I do?!  You continued to attempt to embrace me.
     Each morning was a new attempt to like you.   Each morning brought a single step.  Each single step was a step taken on an autistic road, traveling an autistic journey.  Some mornings I did not want to take a step on this autistic road.  I wanted to step backwards instead of forward.  Some mornings I argued with you in my dreams.  In my dreams, I told you that I was the boss and not you!  In my dreams, we defeated you.  Most mornings I took a step further.  Some steps were baby steps, and some were giant steps.
     Autism, today is our two year anniversary.  Two years that I have traveled your road.  Two whole years since you knocked on our door, and attempted to embrace me.  Two years since you attempted to hold my hand and encourage me to take my first step.  Autism, this is what I first saw on your road when I took those first few baby steps.  I saw uncertainty.  Uncertainty as to what the future holds.  I saw questions and doubts.  I saw hesitation and tears.  I saw exhaustion and jealously.  I saw anger and denial.  I saw darkness.        
     Autism, thank you.  Thank you for being persistent with your embraces.  Thank you for your encouragement to take those first steps.  Each morning was another step on your road.  Each morning's step brought a new sunrise.  Each sunrise brought color.  Color that opened my eyes to your beautiful and mysterious world.  Your color of darkness began to change.  I have traveled on your road for two years.  The road continues to seem long and uncertain. It does contain potholes, bumps, and long hills to climb.  However, it is now a road of acceptance. It is bright and beautiful.  I now take more giant steps each morning rather than baby steps.  My family has met some loving, patient, kind, helpful people along your road.  Your road is filled with hope. There is determination.  There will always be questions along your road, some may never have an answer while others will.  
     Thank you, Autism.  Thank you for helping my two oldest sons, William and Landon, become better individuals.  Thank you for teaching my family patience, kindness, and unconditional love.  Thank you for letting us know that it is ok to be different.  Autism, thank you for helping me to spread awareness and understanding.  Thank you, Autism!  Thank you for giving me Gavin. Our beautiful, Gavin. Our Gavin, who woke this morning at 2 am singing Five Little Monkeys Jumping on the Bed.  Our Gavin, who loves us unconditionally.  Our Gavin, who learns differently.  Our Gavin, who's smile lights up a room.  Some day we will find his key, until then we will love him, protect him, and give him the happiness that he brings to us.
     Good morning Autism, and happy anniversary.

Sincerely,
Paula
Mother on an autistic road

An Autistic Obstacle Course

     It has been about six weeks since my last update, and I feel like a lot has happened.  I could say that is life in an autistic world, however, honestly I think it is just life in general.  A lot can happen in one week, especially in an autistic week.  We have had several behavior hurdles during the past six weeks.  Most days I felt like I was having to navigate through an obstacle course that consisted of walls to climb, races to run, hurdles to jump, and water to tread.  My autistic obstacle course also consisted of pit stops and lifelines.  The pit stops and lifelines were where friends, family, and his teacher, Lynne, waited to help me regroup.  I am very grateful for those pit stops. I will be honest,  most pit stops consisted of a few adult beverages.
     Last month the fourth graders at school put on a wonderful musical show.  Gavin's class attended the show.  Gavin was able to sit quietly and appeared to enjoy watching.  The show was on a Friday.  The following Monday we began to see a shift in his behavior at school.  He was very anxious.  He would pace and repeatedly say "no show, no show, show all done, show all done."  He was very quiet and as his mom, I could see anxiety in his eyes.  One thing the autistic world has taught me is how to look into my boys' eyes and know exactly how he is feeling.  I am learning through his eyes.  The anxiety is heartbreaking to see.  With the anxiety comes fear.  Fear because his brain is attempting to process something that just doesn't make sense to him.  Each morning while walking Gavin to class, I could see the anxiety building in his eyes.  Once he got into class he would pace back and forth.  The biggest obstacle was the cafeteria.  He would have meltdowns in the cafe.  I witnessed part of it one morning, returned to my classroom, and the tears started rolling.  I am so very grateful that I work with incredible staff.  They are understanding and respect my feelings.  So, thanks, Ed, for giving me a few minutes to regroup and catch my breath.  Now came the difficult task of trying to figure out WHY?  Why was he having meltdowns when going to the cafeteria?  What was making him so anxious?  I know I have said it before, and I am going to say it again.  We have been blessed with the best teacher for Gavin.  Lynne was determined to put the puzzle pieces together and solve the mystery.  She was able to determine that he didn't like the clapping at the show, and that attending the show was a change for him as far as his schedule goes.  He was coming to school full of anxiety about changes  We are beginning to notice that as Gavin grows older he is becoming more and more routine.  He likes things a certain way, and struggles with change.  We need to prepare him if and when there is going to be a change of some sort.  He was beginning to have little meltdowns if his shoelaces weren't tied a certain way, if his mat at nap time wasn't in a certain spot, or in a certain way.   As far as clapping goes, Gavin doesn't like it.  I think it is because he doesn't understand what the function of it is.  So, Lynne, made Gavin a social story about clapping.  Social stories are short stories written to an autistic individual to help them understand and behave appropriately in social situations.  The stories describe a situation in terms of relevant social cues, the perspective of others, and often suggest an appropriate response.  Gavin is able to read, so his social stories consist of words and pictures.  We are finding that Gavin is responding well to visual social stories.  Lynne is helping me create a binder of different social stories made especially for him.  So far our binder consists of, "Time for Breakfast - No Show Today", "Loud Noises are OK", "Sometimes My Schedule Changes, Change is Good.", and "Going Outside".  We also have a folder of social stories that we keep in the car.  This folder has social stories about wearing his seat belt and staying in the back seat.  Gavin was unbuckling his seat belt while I was driving.  He would also attempt to climb into the passenger's front seat.  I would hand him the folder each time he got into the car.  Gavin and I would read the stories together.  After a week, he was able to stay in his seat and keep his seat belt buckled.  We were driving home from school one afternoon last week, and he started yelling, "seat belt, seat belt".  I must have forgotten to buckle him.  He continued to yell at me.  I finally was able to pull over and buckle his seat belt.  I praised him for remembering and doing a great job reminding Mama.
     Last week I took all my boys to our town parade.  Gavin went to a parade last year.  So, I put a picture of a parade on his schedule.  Once the parade started I could see through his eyes.  The fear, the anxiety.  His brain was struggling as to why people were walking in the road,  what was the purpose of this marching band making all this noise, why were people clapping.  His fear and anxiety broke my heart.   I continuously reassured him that it was ok.  I kept reminding him about how much fun he was having.  He kept saying, "No parade, marching band all done!"  When the parade ended I witnessed parents asking their children how they liked it.  My heart ached.  Ached for not being able to have that conservation with my third son.  Instead, I spent the entire time reassuring him that he was ok.  I spent the time attempting to alleviate his fear and anxiety.  I spent the time attempting to slip into an autistic brain to help my son navigate a change.  I spent the time trying to help my son make sense of a parade.  Watching and enjoying a parade is a simple task, however, not for an autistic child.  Not for my autistic son.
     We had field day at school yesterday.  Another change for Gavin.  Lynne created a social story.  We put one in his home binder, and kept one at school.  Each night we would read the social story together.  Gavin would say, "No, no!".  The night before field day he sat and read the story quietly.  The morning of field day and before school started, I took him outside and walked him around so that he could see the different activities.  Overall, it was a successful day!  He enjoyed the activities and even had a spider painted on his face.  A lot of work went into preparing him for a simple fun filled event.  But in an autistic mind, something so simple can be mind boggling!  Last night was a difficult night.  He spent the majority of the night screaming and having meltdowns.  My friend, Christine, reminded me that he was decompressing from his day.  He managed field day successfully.  Held it together all day, which was a lot of work for him.  Thanks, Christine, for the reminder and advice. Christine and Lynne have been my autistic lifelines.
     Lately, Gavin has been doing a lot of scripting.  He scripts commercials. He scripts events that have happened during the day.  I often find myself watching, listening, and taking it all in.  I find myself attempting to slip into his autistic world, and see the world through his eyes.  Gavin has also been looking for some sort of input.  Our pool is open, and he will spend hours swimming.  Swimming is very therapeutic for him.  We also have a large outside trampoline that he loves to use.  I have noticed after jumping and swimming he will come into the house and open cabinet doors and drawers.  Gavin will repeatedly slam the doors and drawers open and close, open and close.  My guess is that he may need deep pressure input.  We call them squeezes.  When I find him doing this to the cabinet drawers and doors, then I will ask him if he wants squeezes.  His reply is often, "Squeeze please!".  The deep pressure seems to help ground him.
     I had the opportunity last week to watch William play basketball.  I immediately noticed a mother and father with their autistic son. He looked about 8-9 years old.   Their older son was on the opposing team.  The autistic boy did a great job watching his brother play basketball.  My heart danced.  It danced with hope.  Hope that maybe one day Gavin will be able to watch his brothers play sports.  I often don't attend my other boys' sporting events.  I am usually home with Gavin.  While watching the game I kept thinking how Gavin would be stimming from the noise that the basketball made.  I wanted to ask this mother how she did it.  How did she prepare her autistic son to attend his brother's basketball game?  I had a mountain of questions for her.  I wanted to stand next to her and ask away.  However, I stopped myself.  I reminded myself that not all people are "open" on this autistic journey.  She might have looked at me and told me to beat it.  I also reminded myself that I was there to watch William. It was William's night.  He was so excited to have me watching him. I needed to be there 100%.  I needed to come out of my autistic world and step into the ordinary world.   Both William and Landon are scheduled to play summer basketball.  So, my goal is to get Gavin to their games successfully.  I may need a few adult beverages when I get home.
     I recently was in Walmart with Gavin.  Gavin looked at a woman and said, "Hi, how are you?".  The woman said she was good and attempted to engage in conversation with him.  She kept asking him questions.  He looked all around and didn't answer.  His autistic mind couldn't make sense of it.  I then looked at the woman and told her that Gavin had autism.  Her response was, "I would have never known."  She then proceeded to continue to strike up conversation with him.  I thought of this woman all night.  I thought about what she did for me.  She continued to talk to my boy.  She continued to not treat him differently.  She was not rattled when I told her that he was autistic.  She was sweet, kind, and her heart was full of love.  I gave her awareness and she gave my kindness and hope in return.
     June is Gavin's birthday month.  He will be turning 4 on June 29th.  June is also our autism anniversary.  This month will make two years that we have been on this journey.  Two years since we entered an autistic world.  As I type, I think of what Gavin would be doing as a typical soon to be 4 year old.  He would be planning his birthday party theme and telling me who to invite.  He would be having play dates.  He would be telling me who his best friend was.  He would pick out what clothes he would want to wear.  He would accept change.  He would love seeing parades.  He would engage in conversations.  He would attend his brother's basketball game.  Gavin was brought into my life for a reason.  With him brought autism.  Gavin has autism, but autism doesn't have him.  He will always be my Gavin.  He brings unconditional love to my world.  He brings acceptance and understanding.  He brings laughter and hope.  He brings kindness and awareness.  I will continue to navigate through this autistic obstacle course.  I will continue to spread awareness.  I will continue to have hope.  Lastly, I will continue to appreciate those pit stops and lifelines.
     Thanks for checking in and traveling along with us on this autistic journey. Together we can spread awareness and make a difference.

 With love and hope,

Paula