THE BRICK

Well, I had my first "THE BRICK" experience.  This experience consists of being hit by an emotional brick.  You do not see this brick, and it shows up when you least expect it.  It comes out of no where and its cause to fall and hit you is unknown.  I had this experience at William and Landon's school Christmas concert last night.  I was looking forward to seeing my two older boys perform.  They have been very excited about their school concert.  I arranged for my sister, Lisa, to come to the house after work to watch Gavin so that Phil and I could enjoy the concert with no distractions.  Well, that damn brick was a distraction the entire night for me!  There is a 3 year old class at the boys' school.  As soon as the 3 year olds came onto the stage to sing, that is when the brick fell and hit me.  This overwhelming emotional response came over me.  I started crying and couldn't stop.  I just kept thinking, "That should be Gavin's class.  Gavin should be up there right now."  Then I started thinking about how he has been "robbed" of so many life experiences.  Robbed of so many things.  I have been robbed!  I sat and watched all the excited parents around me.  Smiling, taking pictures, waving to their kids.  Calling their kids names.  Their children waving back.  The room was filled with excitement,  I sat there attempting to keep my composure for my other two children.  Well, that brick hit me hard.  The tears wouldn't stop, they couldn't stop.  I contemplated leaving.  I knew I couldn't.  I had to be there for William and Landon.  I sat through the entire performance crying, and attempting to hide my tears as best as I could.  I wanted to stand up, and yell to the people around me, "Count yourself lucky that all your children are healthy.  Count yourself lucky that you have children who function normally!  Count yourself lucky!  Do not take anything for granted.  One day you may hear the words, "your son is autistic!'"  That damn brick would not stop hitting me.  Every time I thought it was gone, it would hit me even harder.  At one point, I looked over at Phil with tears streaming down my face.  I told him that I couldn't stop thinking about Gavin.  He told me he was thinking the same thing.  That he couldn't get it off his mind.  I guess he got hit by "THE BRICK" too.  However, he managed to hide it better then me.  

Well, today I am now suffering from "THE BRICK" hangover.  I am so emotionally drained.  I look like I have been crying for days, and my head is pounding.  Landon just came over and asked my why I was crying.  How can I even begin to make him understand.   What do I say?  I told him I was so proud of him.  That he made me so incredibly proud last night that is why I am crying.  I am crying tears of joy.  He smiled and walked away.  If only he knew the pain in my heart.  If only he knew my daily struggles. If only he knew about "THE BRICK".  I will not let him know.  I will cry my tears of joy for him and his brothers.  I will also cry my tears of being robbed for my Gavin.  Such is the life in an autistic world.

So, I will now attempt to end this blog with something positive.  I may have been robbed, but I have also been given three gifts.  Each gift is unique.  My job as a parent is to unconditionally love, nurture, and be thankful for my three gifts.  Each one of my boys brings such joy to my life.  Our Autism journey is just beginning.  It will be filled with obstacles, tears, frustration, and "THE BRICK".  However, it will also be filled with joy, appreciation of small things, and understanding.  Now may be a good time to start focusing on the G Man Foundation.  This will be my New Year's resolution.  Figuring out how to get this foundation started, and what good it can do.  Lastly, William and Landon did a fabulous job at their school Christmas concert.  

For every locked mind, there is a key to find.  I am working hard to find that key.  I will work every day, every hour, every minute.  My goal is to find that key.  The key may not be found in my lifetime, but I will have a part in finding it.

As always thanks for checking in.  You are all a part of my journey.  Your kind words, words of encouragement and support are what keep me going.  I am hoping that "THE BRICK" keeps its distance.  But for now, I will focus on recovering from my hangover and enjoying my gifts.  

"Behavior hurdles"

I feel like so much has happened since my last blog.  Gavin continues to make great progress in school.  I know I have said it once, but I am going to say it again, we are so grateful for Gavin's teacher, Lynne, as well as all the staff at the Pawtucketville Memorial Elementary School that work with our Gavin.  He continues to open doors in me that I never knew existed.  My knowledge about autism continues to grow.  Gavin has been working on greetings in school.  He now greets everyone he knows by name.  He will say, "Hi, Mama."  I will then respond with, "Hi, Gavin.  How are you?"  Gavin's immediate response is "I'm good!"  Music to my ears.  No matter what kind of day I have had, I will always get the response, "I'm good." from him.  It makes my heart smile.
As much as Gavin is making progress, there are also behaviors that we have to deal with.  I feel like we get over one behavior hurdle, then another one comes.  Gavin's new behavior hurdle is at school.  He has been refusing to eat for his teacher.  He now basically wants Lynne to force feed him.  The great part about being at the same school as him is that I have direct access to Lynne.  She is always available to bounce ideas off of.  Gavin often leaves the cafeteria yelling and crying with his food, to have to go back to the classroom to eat.  After speaking with the Autism Specialist, Christine, she informed me that he is stimming from hearing Lynne's verbal requests. When I think of autism and stimming, the first things that come to mind are hand flapping, body spinning, rocking, lining up or spinning toys. Stimming can also include echolalia, perseveration, and repeating rote phrases. Wow! Learned something new again! Most of the time, stims are coping strategies due to overloads in sensory perception, such as noisy shopping centres, or due to psychological demands such as learning new tasks. Sometimes, autistic children may also stim from lack of sensory input. Christine also informed me that he is targeting Lynne because she is the one who redirects him the most (being his teacher). There are more demands being placed on him at school. So, I was wondering if I should be putting more demands on him at home. Both Christine and Lynne assured me not to worry about home demands. Beginning tomorrow, Lynne's only verbal interaction with him will be when she needs to reinforce him for doing a nice job. All other directives from her will be done using gestures or pictures. Again, I am so grateful for Lynne and Christine. The wealth of their knowledge amazes me and motivates me to learn more. Hopefully these interventions will get us over the behavior hurdle successfully.  Just wondering and waiting for the next one.
We had a wonderful family outing last week.  We went to a college hockey game. Thanks to our friend, Sandy, for the great tickets.  Phil was so nervous about bringing Gavin.  Kept questioning me about the decision.  At first, we decided to take two separate cars.  This way one of us could bring Gavin home, while the other one stayed with William and Landon.  Then I decided to take one car.   If Gavin had to leave, then one of us would go, the other would stay and find a ride home with our two older boys.  We went with a group of people.  So, I figured someone would be available to help in the ride department.  Well, our little guy not only surprised us, he amazed us.   He sat the entire game, taking everything in.  He only got upset a few times.  Once, when the lights went out.  He started yelling, "Lights on! Lights on!"  The other times were when UMass scored.  People all around us were cheering very, very loudly.  His eyes filled with tears, he began cheering loudly.  However, I could see the confusion in his eyes.   He had no idea why people were yelling and screaming.  He had no idea why he was yelling and screaming.  Seeing the look in his eyes made my heart cry.  It also made me realize that something little like cheering at a sporting event comes so easily understood to us.  In an autistic mind, it is boggling.
We had a very low key Thanksgiving. Kept it very quiet and routine for the little guy. Gavin is very routine. Taking him out of his routine often backfires. All our Christmas decorations are up. I was wondering how this was going to affect him. His trampoline had to go down in the basement to make way for the Christmas tree. So far, so good. He does like to touch the ornaments, feel them, and read them if they have words. He is obsessed with trying to read everything and anything he sees. If you tell him what something says, he will go back to the item and read it over and over again. He has also been scripting a lot more lately. Scripting is reciting lines from movies, commercials, books, etc. Some experts predict it is a coping mechanism that is used during high stress periods, hence, a form of stimming. Others believe it is just an attempt to communicate in some form and this is the form they know. Gavin repeats something he heard and imprinted into memory. He has a favorite app on the itouch that he likes to use. He will often repeat over and over again, "What do you do after you use the wash room? Yeah, you wash your hands after you use the washroom." What goes together, Yeah, Bicycle and helmet go together." He will say these things repeatedly. He often wants me to repeat what he is saying. Now, I am guessing that he is stimming from this verbal input.
My good friend, Beth, recently asked me if Gavin is doing things that my other two boys did at his age.  My response is that I honestly can't remember what a 'typical' three year old does.   I guess if he was a 'typical' three year old he would be excited about Santa bringing presents.  He would be playing with his toy cars, he would be attending a 'typical'  pre-school, he would tell me who his friends are.  He would tell me how his day was, he would want to sit on Santa's lap and ask for a special present.  This is my 'typical normal' world for me. It is a challenging world. A world where there are so many unknowns. A world filled with tears of joy and tears of frustration. A world where I question everyday if I am doing the right thing. A world filled with behavior hurdles. A world filled with teaching my son NOT to stim and script.  But, it is my world. A world of acceptance and love.
Happy holidays everyone and thanks for taking the time to check in.

Public Behavior

Behavior in public places can be quite challenging.  My boys love McDonald's.  We try not to eat there too often.  So, it is a special treat when we do.  A few weeks ago I decided to take all three boys to McDonald's for lunch.  Phil had to work, so it was some mommy and sons time.  So I thought.  I figured we would eat inside the restaurant vs. bringing it home.  The more 'typical' things we do as a family, the more we feel like a 'typical' family.  Well, Gavin has great difficulty waiting for things.  Especially in public places.  He doesn't understand the function of having to wait in line.  The other thing we often struggle with is his repetitive behaviors and how routine he is.  We have to go to the same McDonald's and sit at the same table, in the same seats.  I guess that I should have figured out quickly when we walked through the door and noticed 'our' table was already taken that it was going to be a challenging trip.  Gavin had great difficulty waiting in line. He was running around touching everything.  I had to wait in line to order the food.  William and Landon spent their time attempting to redirect their little brother to wait with mom.  Gavin was attempting to run into the mens' room.  William was attempting to redirect him out of the mens' room.  The entire time Gavin was screaming at the top of his lungs.  And there it was.....the stares!  I could not only see them, I could feel them.  People staring and whispering.  I probably know what they were whispering..."What a brat! What is wrong with that kid! Shut that kid up!"  I quickly ordered our food, and then took Gavin outside to attempt to redirect him.  Which left William at the counter waiting for the food.  I HATE the fact that William is only 10, however, he is wise beyond his years.  I HATE the fact that he has grown up so much within the past two years because he has had to deal with having an autistic brother.  I HATE the fact that Landon will usually tell me how he 'hates' autism.   We then had to sit at a different table then we sat at the last few times we were there.  Gavin didn't take this too well.  Lots of screaming.  Again, the stares.  A family actually got up and moved.  My wall then went up, and my shell became hard.  I was waiting for someone to say something.  I had my verbal come back ready and waiting.  Nothing was said, just the stares!  Once we got Gavin settled we managed to have a great time, eating, chatting, enjoying time together, and blocking the rest of the world out.

Gavin continues to make leaps and bounds in school.  We are so blessed and grateful with all the wonderful staff that we have encountered thus far on our journey.  He is fully potty trained!  What an accomplishment.  I never thought he would be potty trained by now.  He was struggling with the whole bowel movement part (not to give you too much information).  He was continuously 'pooping' his pants.  UGH!  And I was tired of cleaning it.  I tried everything.  His teacher, Lynne, created social stories for home.  We continuously read them.  I tried putting him on a potty schedule.  I tried verbal reinforcement.  I tired his favorite edible reinforcement (skittles).  However, nothing was working.  So, after looking right at me and then 'pooping' his pants for what felt like the hundredth time, I decided that he was going to take a shower.  I put him in the shower and he hated it!  I then made a visual picture and continuously reminded him that if he pooped his pants then he was going to take a shower.  That was about three weeks ago, and he hasn't 'pooped' his pants since.  Now I am wondering if he will be 16 and still taking baths.  Did I shower traumatize him?  We were still using diapers at night.  However, this weekend I faded out the diapers.  So far three nights of being dry!    Proud of my boy.

I recently read an article about how difficult Halloween can be for kids on the spectrum.  That they do not understand why they have to wear an uncomfortable costume.  How we make them wear itchy costumes and say trick or treat to someone they have never met or seen before.  We started preparing for Halloween about a month ago.  I took out two hand me down costumes.  One was Buzz Light Year, the other a Power Ranger.  Gavin wanted no part of either one.  Kept saying "No Buzz, no power nin ne!"  A week before Halloween he finally chose Buzz.  He was probably sick of hearing me ask and seeing the costumes everyday!  With some encouragement, as well as a skittle reinforcement, Gavin allowed me to put the Buzz costume on him.  He wore it trick or treating.  We even got him to repeat the words "Trick or Treat" at a few houses.  Yesterday morning I found him looking out the dining room window.  He was stimming visually out of the corner of his eye.  I attempted to redirect his stim.  I then heard him say, "Trick or Treat!".  It brought tears to my eyes, thinking he made a connection. 

I have been thinking a lot lately.  The same old question comes to mind.  "WHY?"  Why me?  Why us?  Why Gavin?  I don't think I will ever have the answer to those questions.  Instead I need to change the WHY to HOW.  How can I continue to educate people about autism within the family?  How can I help people understand how autism affects the entire family?  How can I help other families with a newly diagnosed child?  HOW, HOW, HOW??

I can start with appreciating the small things.  Like when William and Landon chose to carve their jack o lanterns in honor of their little brother and the challenges he faces everyday.  When Gavin runs up to me at the end of his school day and throws his arms around me.  When the staff at my school say hello to Gavin and he is able to respond. It may not be with a hi, more with a bye.  When I have a day when I don't question and instead live in the moment and enjoy all my boys.

Lastly, if you can remember one thing from reading this blog.  Then let it be that the next time you see a mother or father struggling with their child's public behavior, please don't stare.  Instead tell them what a great job they are doing as a parent.  Each of us has our own journey to navigate through.  A smile is worth a thousand words.

Until next time............keep smiling. 

Nobody told me there would be days like this................

     Just wanted to take a minute to update everyone on Gavin's progress.  He began preschool at the end of August.  He is a full time student in a PDD program.  Overall, he had a great transition to school.  Gavin loves school.  I transferred to teach at the same school that he is attending.  This way, he comes in with me, and leaves with me.  The plus side....one less drop off in the morning, one less pick up in the afternoon.  The down side...it can be difficult before school and after school to try to get things done in my classroom due to the fact that he is "all over" the place.  Since the start of school, Gavin has mastered drinking from a juice box.  We are now working on drinking from a cup.  We started potty training last week.  He has been dry the past three consecutive days at school.  He has had a few accidents at home.  Gavin loves verbal praise. Every time he successfully goes on the potty, he will look at me and say, "good boy!". We are blessed to have been given such a wonderful teacher for Gavin.  I can't say enough incredible things about Lynne.  You can tell she loves what she does and makes such an impact on her students.  The challenge about potty training is that he LOVES playing in water.  So, he independently puts himself on the potty every ten minutes.  Good thing, right.  Well, as he sits on the toilet, he loves to play in the toilet water.  The more of a reaction you give him, the more he will do it.  So,  right now I feel like I spend my entire day in the bathroom.  Physically redirecting him out of the toilet while trying to make no eye contact.  After an hour of this, I can feel my patience starting to fade. Lately, Gavin has been obsessed with lights, buttons, and doors.  He is constantly shutting and opening doors, shutting off and putting on lights, and pressing any button that he can find.  One night last week, I came downstairs after putting the boys to bed and noticed the house had a funny odor.  It smelled like something was burning.  Well, I quickly noticed that Gavin had turned all the thermostats up to 90!  Ugh!  So, you could call my house, "The house of signs."  There are "STOP" signs, "Do not enter" signs, and "Do not touch" signs over anything and everything!  His new thing is that he likes to take the sign off, look at you, and say "Do not touch!" all while he is touching what he is not suppose to be touching.  Again, the more of a reaction you give him, the more he does it.  Some days are just so EXHAUSTING!!  Last weekend was just so exhausting for me.  I actually cried myself to sleep.  I told God that I really don't know if I can do this.  Can I really be Gavin's mom?  I just wasn't sure if I could do this anymore.  I then asked him for the strength to keep me going. Some days I really depend on my faith to get me through. 
     I also carry this guilt inside my heart that I neglect my other children.  William is so laid back and such a big help.  My middle man, Landon, is the "spicy" one.  He can be defiant and stubborn.  After a long talk with their pediatrician about whether I need to have them see a therapist in fear that I am "scarring" them, she assured me that they do not need therapy.  They just need outlets.  William's outlet is football and friends.  Phil coaches his team.  So, it is good alone time with dad.  We have searched all year for outlets for Landon.  We finally signed him up to be a cub scout.  He will be in the same pack as his best buddy, Zach.  This is something that Landon can do with his dad all by himself.  He is very excited about it. 
     Gavin is currently on a waiting list for the Autism Language Program at Children's Hospital.  We are hoping that he will be able to get an appointment by January/February.  We also had to have genetic testing done on him.  Long story short, his genetic testing showed a deletion on his 14th chromosome.  The chromosome is there, just has a deletion on it.  So far we have no answers about this.  We have been given the run around due to insurance!!  The insurance will not cover all the genetic testing.  The only thing the doctors can tell us is that it may be linked to ALS/Lou Gerig's Disease.  We need to have more testing done in order to get more answers.  However, that may mean thousands of dollars out of our pockets.  So frustrating!!
     I have had the opportunity to talk with parents or family members of children around Gavin's age who have recently received an ASD (Autism Spectrum Disorder) diagnosis.  This has been therapeutic for me in more ways then one.  It feels like I am doing something good, somehow, someway I am helping them.  Even if all I am doing is listening.
     And then there are our good 'Gavin' days......the days that his smile melts your heart.  The days that he gives you a big hug.  The days that he says a new word.  The days that you walk into the room, he looks at you and says, "Hi mama!".  The days that I see his siblings interact with him with such love for him.  The day that his cousin, Tealei, tells her teacher that her favorite group is the "G-Man Group!".  The days that I hear him mimic his teacher by saying, "One more minute guys.".  The days that I hear him sing a song.  The days that I can share his story with people like you. 
     Thanks for taking the time to check in.

Where to begin....................

Wow, I can't believe that I am actually going to start blogging.  Blogging; is that even a word.  Well, several people have suggested that I start a blog about my journey with autism.  I guess I should correct that and say "our" journey with autism. 

Gavin had his first follow up appt at Children's today since his initial diagnosis.  His appt was actually six months overdue.  However, I was so overwhelmed this past year with his intensive therapy schedule, a trip to Boston was the last thing on my mind.  The drive in was crazy.  I am a country girl.  Hate driving in the city.  Sure enough, my gps took us directly into the "heart of Boston".  We ended up at Quincy Market instead of Children's.  Thank goodness my aunt came with me.  We were able to ask for directions as well as reprogram the gps, and we were only 5 minutes late.  Gavin's Developmental Pedi, Dr. Rappapport, was very pleased with the progress he is seeing.  We talked a lot about the difficult behavior we are seeing at home; throwing things, screaming, sometimes biting, and hair pulling.  He suggested that we continue to ignore, ignore, ignore.  We also talked about his "stereotypical" behavior; jumping, visual stims, echolalich speech, repetitive behavior.  Gavin is hyper focused on letters, numbers, words.  I have a picture hanging with the words "It's the beach."  All morning he would walk over to the picture, run his finger along it, and read the words.  Over, and over, and over again.  The first two times you think it is cute.  After the sixth, seventh, tenth time, well, you are like, "ok, Gav, let's find something else to do!"  Or when he watches a video and plays the same part over and over and over again....yikes!  Dr. Rappapport did lots of observing of Gavin.  He then told me how pleased he was, however, he still thinks he needs an intensive program.  My heart sank and my eyes filled with tears.  I guess I was hoping to hear something else...."Your son is not autistic anymore."  "Your son is losing his diagnosis."  "Your son is doing so good that in two years he will no longer be autistic." Reality slap, Paula!   So, he is recommending more ABA home therapy.  He also referred us to the LAPP Program (Children's Hospital) in Waltham.  They have an Autism Language Program that Gavin would be a good candidate for.  I am excited to hear back from this program.
Before I left Dr. Rappapport's office he asked how everyone in the family was doing, especially me.  I smiled and told him I was good.  That I was happy that we made it through the year.   I don't think he wanted to hear how I REALLY felt.  How everyday is a challenge.  I spend most if not all my day redirecting, trying to figure out what Gavin needs, what he wants, trying to redirect his visual stim, ignore his high pitched scream, getting him to respond to his name, getting him to make eye contact, and make sure my other two boys' needs are met.  How somedays I grieve for a "typical three year old", I grieve for his brothers.  I stay awake at might wondering what is going to happen to my little boy.  Will he be able to function independently someday?  That everyday I question, "why, why, why??"  So, I guess my smile and response was best.
We also had to have Gavin's height, weight, and blood pressure taken before we left.  Well, it was an entire process to get him to step on the scale.  Gavin did not understand the function of the scale.  Trying to explain it to him is no use.  He doesn't understand the function of language.  So, I stood on the scale to show him visually what it was for.  It didn't work.    We attempted to lay him down on the baby scale.  That didn't work.  We even attempted to have me hold him and weigh us together, that still didn't work.  After about fifteen minutes he noticed the scale had buttons at the top.  He wanted to touch the buttons.  So, he stood on the scale just to touch the buttons and we prayed it was long enough to give us his weight.  IT WORKED!  We had to hold him down to measure him.  When it came time for his blood pressure, I told the nurse to forget it!  Tell the dr. he wouldn't cooperate..ha!  She agreed.  Thank God!!
We had a easy ride home from Boston.  Didn't get lost, and stopped for icecream!!
I can't believe I finished typing my first blog.  Just to let you know, it probably took me about an hour and a half.  I had to keep stopping and redirecting my little guy away from the computer. 

Lastly, just want to give a shout out to all my family and friends.  Thanks for coming along with me on this journey.  "OUR JOURNEY".  I would not have survived this year without each and everyone of you.  I love you all!!  I hope you enjoyed reading my very first blog. Please forgive the typos.  Stay tuned....................