Negative turns Positive

     I recently went to see Shonda Schilling speak about her book, The Best Kind of Different.  Shonda and Curt Schilling have four children.  Their third child, Grant, is on the spectrum.  He has Apsergers.  I went to see Shonda with my friend, Meg, and Meg's friend, Julie. Meg and Julie both have children on the spectrum.  Shonda talked about something that really hit home with me.  She talked about how we should focus on NOT surrounding ourselves with NEGATIVE people.  So, I have decided to dedicate this blog entry to just that.  I am sure there are many people who have read this blog, or who are thinking negative thoughts.  For example, "I don't get it.  Move on with your life.  Get over it.  It's not that bad."  The Paula before living with an autistic son would have gotten really upset by comments like these.  The Paula now living with an autistic son feels bad for people who think this way.  These are the people I pray for.  I pray that they never have to experience an autistic world.  For they are the ones who would just not be able to handle it, or "get it", or "move on."

     Gavin loves to go to the mall.  I, on the other hand, do not love bringing him.  His behavior at the mall is inconsistent.  I brought him before Christmas.  He was great.  Sat in the stroller, played with his iTouch, and enjoyed looking at things, and eating a snack.  A couple of weeks ago my cell phone broke.   We had to go to the mall so that I could get a new one.  Well, this particular trip to the mall was frustrating.  Frustrating for me, Gavin, Phil and the boys.  His frustration affected the entire family.  Phil and William had to attempt to keep him entertained in the Verizon store.  Gavin did lots of screaming, and people did lots of staring.  After my cell phone situation was taken care of, the boys wanted to go look at video games.  It was my turn to keep Gavin entertained.  However, his form of entertainment was to be out of the stroller and running all over the place.  I was not having any of that, and Gavin was not having any of my stroller plan.  He did lots of screaming.  A couple of teenage boys walked by him.  One was imitating Gavin's screams, the other was laughing.  I politely asked them to please stop.  They both apologized.  A woman walked by me and commented, "Someone sounds stressed."  I tried to comment in my most polite voice I could muster and said,  "No, he is just autistic."  with a polite smile on my face of course.  We then decided it was time to leave.  All of our stress levels were through the roof.  As we walked through JC Penney Gavin's stress level reached its breaking point.  He was screaming so loudly.  Tears were rolling down his face.  He reached the point of no return.  People were staring.  A sales associate made a comment.  Some people were giggling. Some people were giving me nasty looks.  Phil attempted to stop the stroller.  He was going to try to rationalize with Gavin.  He was going to attempt to calm him down.  When Gavin reaches his point of no return, the only thing we can do is give him his time and space.  There is no one magical thing to get him to stop.  He stops when he is ready.  I left the mall feeling so defeated.    I thought about that trip to the mall for days afterwards.  We have not attempted to return to the mall.  I do know that I need to incorporate visuals the next time we go.  I also need to create a social story about going to the mall.  A social story is a short story written that will help him understand expectations and behavior.  The story incorporates visuals and words.  We can read the story to Gavin before he goes to the mall, and bring it with us to review while there.  Living in an autistic world is definitely more work.  A simple trip to the mall can be a living nightmare if you don't prepare before hand.  Another thing I thought about for days after the trip was how to treat that negativity that comes from strangers when Gavin is having a melt down.  I have decided to create little cards.  They will be the size of a business card.  The card will say something like, "Please check out my mom's blog.  I am autistic.  I would love if you could spread awareness.  Love, Gavin."  On the back side will be printed the link to this blog.  Hopefully I can work on creating these during our next school vacation.
     We continue to be very happy with Gavin's progress.  However, I continue to struggle with the feeling of guilt because of not having ABA (Applied Behavior Analysis) at home.  Gavin's Developmental Pediatrician recommended more ABA home therapy.  However, our plate has been so full, and Gavin doesn't get home from school until after 3:30.  So, I honestly feel like providing him with therapy at 4 o'clock in the evening would stress him out.  He is tired by 4 o'clock, and needs to come home and relax.  Speaking of home.  The first thing Gavin does when he walks through the door after a full school day is to take off his jacket, shoes, socks, and pants.  Loves just being in his underwear and t-shirt.  We have worked hard the past couple of weeks with getting him to change into his pajamas vs. running around in just his underwear.  He has been more cooperative about this.
     Gavin is not yet able to carry on a conversation.  However, we can now ask him how old he is.  His reply, "Gavin's three!", as he attempts to hold up three fingers.  We can ask him, "How are you?"  His reply, "I am good."   Phil and I went out for dinner last weekend to celebrate my birthday.  My sister, Lisa, watched the boys for us.  While at dinner I decided to give my sister a call to check in.  Gavin got on the phone.  I said, "Hi, Gavin." Gavin replied, "Hi Mama, how are you?"  My reply, "I am good Gavin.  How are you?"  His response, "I'm good."  He then ran away from the phone laughing hysterically.  With tears streaming down my face, I looked over at Phil and said that was the BEST birthday present I could ever receive!  I had a small conversation with Gavin over the telephone.  Something I  thought would never happen.
     Before Shonda Schilling finished talking about her book she allowed for a question and answer session.  It was nice to be surrounded by other parents who are living in somewhat of the same world that I am.  I got up the courage to stand up with a microphone in hand.  I asked Shonda how she juggles her attention and time between all her children.  This is something I seem to struggle with, and the guilt can get to me.  She answered me by trying to find creative ways.  Whether it be by reading a book to one of them, having cuddle time, or just a 1 one 1 trip to the grocery store.  It's the little ways that mean the most.  I have not finished reading Shonda's book yet.  However, she wrote and talked about how her oldest son was diagnosed with anorexia around the same time that Grant received his diagnosis.  She told us that they will never know if the anorexia had anything to do with Grant.  Boy, does this hit home with me.  Right after Gavin's diagnosis there was this period in my life that I like to call "the dark time."  During this dark time, Landon gained 12 pounds.  I didn't notice it until months later.  My Landon needed his mama.  I was consumed in my own sadness that I failed to notice this.  I will forever carry this guilt in my heart.  Just another thing about living in an autistic world.  The diagnosis affects the entire family in different ways.
     Our journey with autism has taught us many things so far.  It has taught us WHO are true friends are.  It has taught us WHO our important family members are.  It has taught us to always turn the negative into the positive.  It has taught us to never judge someone else, or their life.  As we do not walk in their shoes.  To the negative people out there.  My prayer for you is to hope that you continue to read this blog.  My prayer for you is that hopefully someday you won't have to experience an autistic world.  My prayer for you is that hopefully someday you will try a little harder to "GET IT".  Just like my true friends do.  To all my true friends and my important family members......I love you and thanks for attempting to understand.  Thanks for your unconditional support.  My journey is your journey.  Together we will spread awareness.  Together we will search for that key.  Together we will make this world a better place.
     

The Gift

Happy New Year! I can't believe the holidays are over and a new year is beginning.  Just wanted to give everyone a quick update.  Overall, Gavin handled Christmas better then what I expected.  I feel like when I set my expectations low, then he amazes me.  I have learned too high expectations can often end with frustration and disappointment.  The two weeks prior to Christmas were difficult.  I think the physical change in the household had more of an affect on him then I realized.  Gavin spent a great deal of time yelling, screaming, and having melt downs.  When he has a screaming melt down, he will often pop little blood vessels around his eyes.  It will often look like he has a rash.  My heart breaks when this happens.  Gavin was having screaming melt downs when he saw me making the bed. I would have to make sure he wasn't around when I made any of the beds.   I mentioned this to his teacher, Lynne.  She suggested that he probably didn't understand why I was making the bed and was associating it as having to go to school.
Gavin was very confused when it came time to unwrap a gift.  We practiced the day before Christmas Eve.  He would open a gift, then say "No, no!" and would want to put the wrapping paper back on.  Little things like this we take for granted.  William and Landon didn't have to learn how to unwrap a gift.  Gavin received a wonderful rocking chair from his godmother, Dawn, for Christmas.  Dawn and I were both so excited to show him the chair.  She had painted his name on it.  We made sure that we were away from the Christmas Eve crowd, and it was just the three of us when we gave him the chair.  Well, he wanted nothing to do with it. The chair was the same color as the one he uses at school.  So, my guess was that he was confused as to why the chair was there, and why it had his name on it.  He would not sit on it, let alone go near it.  I felt so sad.  I wanted to see his excitement about receiving this special gift, however, instead I saw confusion.  I was able to consult with his teacher again about the chair.  Honestly, I don't know what I would do without Lynne.  She is always there for encouragement, support, advice, and most of all to share her knowledge.  Lynne reassured me to give him time.  He will get used to the chair, if he doesn't then we could always paint it a different color.  Well, it was interesting to watch him as the week went on.  Each day he got a little closer to the chair.  After a few days he touched it.  After several days, he sat in it for a second, then ran away.  By the end of the week, not only was he sitting in it, he was rocking and reading in it!  Yeah!!
Gavin surprised us Christmas morning with wanting to unwrap his gifts.  He unwrapped them very slowly, didn't say "No, no!" and did not try to wrap the gift back up.  He didn't want to play with any of his new toys.  However, with encouragement, modeling, and support, he is slowly beginning to enjoy some of his new toys.  One present he does love is an angry bird stuffed animal.  He carries it around the house and sleeps with it every night.  Gavin surprised us again with handling the large family and friend gatherings at Christmas and New Years.  I have learned that it is o.k. if he doesn't sit with us during a large family dinner.  It is out of his routine, and we need to give him his space and time to process everything that is going on around him.  Forcing him to sit and eat with everyone at the same time would just be melt down city.
I spent a great deal of time this week making Gavin as many visuals as possible.  He now has a daily schedule displayed on the fridge.  It has the day of the week as well as a picture of school or no school today.  The schedule is then broken down into different time increments.  For example, this morning the schedule had Sunday, No School today, then under that there was breakfast, watch tv, play with toys, clean up, get dressed, brush teeth, and make bed.  He has not had one screaming melt down since I have been using the "make bed" picture on his schedule.  This morning he walked into the bedroom while I was making the bed.  He looked at me, smiled, and said, "time to make bed."  WOW!!
I also consulted with Gavin's teacher about rearranging some of his things.  He had a certain table that he used all last year for his Applied Behavior Analysis (ABA) therapy.  It was in the corner of the living room.  Lynne, reassured me that change is good, and encouraged me to make some changes.  So, I made his old ABA corner into a reading, relaxing, and rocking corner (his new rocking chair is in the corner with a cubicle system that contains books, puzzles, and games).  I moved his ABA table into the dining room.  It is his new 'break area'.  He will be verbally cued or physically brought to this area when he needs a time out (break).  There is a puzzle for him to do there, as well as a visual picture hanging on the wall. The picture tells him what he can do instead of yelling.  For example, I can say...I need help, I need a hug, I am mad, etc.  He loves looking at all the visuals.  I will say to him during the day, "Gavin, time to check your schedule."  He will go right over to it, and read everything that needs to be done. If something has been completed then he will take the picture off, hand it to me, and say, "All done." The visual schedule will also help him know which days he goes to school, and which days he stays home. I do have to say that he was very mad with all the physical changes.  He spent some time yelling at the cubicle system, pointing at it, and yelling, "NO GOOD! NO GOOD!"  He is slowly warming up to the new areas in the house, and he seems much more relaxed with all the visuals that I have incorporated into our household.  It has also been good for Landon.  Landon is my schedule man.  He makes sure that it is continuously updated.  We went to our friends, The Tappers, to celebrate New Years Eve.  I made sure the "Party" picture was on the schedule.  This was something new for him, so he was not liking it.  All morning he kept saying, "No party, no party."  Yes, he did go to the party and had a great time.  When all the kids were using the noise makers and wearing hats, Gavin was right there alongside all the kids, making noise, and wearing a hat.  My heart danced with happiness witnessing this.
Gavin has been walking on his toes a lot this week.  Seeing this usually gives me the signal that he is having issues self regulating.  When we see him toe walking, then we place pressure on his shoulders.  Not sure if maybe this is due to being home and not at school.  Not sure if it the physical changes in the home environment.  Not sure if he is wondering where the Christmas tree has gone.  I guess I need another Lynne consult.  Thank goodness she doesn't charge me.  ha ha
As I begin a new year I would like to take a minute and reflect upon a gift that I was given.  We have all received that one special gift in our life.  It may be a piece of jewelry, a new book, or even a new piece of clothing.  That special gift may be a new iPad, laptop, or even a Nook.  We appreciate our gift, and the thought that went into it.  The gift is placed in our hands and we are excited and eager to open it.  We smile and thank the special someone who has chosen that gift for us.  Getting that special gift makes up feel special and loved.
I received my gift on June 18, 2010.  However, at the time I did not think it was a gift.  Yes, the gift I was given was autism.  It is not until now that I am beginning to see autism as my gift.  Since June, 2010 I have thought of autism as being my curse.  A curse for doing something wrong.  A curse that I will have for a lifetime.  A curse that left me wondering "why me?".
Autism has taught me patience, compassion, kindness, acceptance, and most of all love.  It has taught me how to love and appreciate an individual for "WHO" they are, and not "WHAT" they are.  It has showed me that each one of my children need me in different ways.  Each one of my children learn in different ways.  Each one of my children is loved in different ways.  I love William for his 'old soul', for always wanting to help.  I love Landon for his 'spice' and the humor he brings to the household.  I love Gavin for his unconditional love, for his determination.  Autism has taught me to appreciate the little things in life.  It has taught me that life is not perfect.  It has taught me to love more, work harder, and never give up.  It has made me wiser.  It has made me stronger.  It has made me a better person.  I am sure there will be some days when I will no longer want this gift.  I will want to return it.  I will take a good look at it and get tired of it.  I will want to put it away for a little while.  For now,  I will learn to appreciate my gift.  I will enjoy unwrapping it and continue figuring out how to use it.  I will be thankful for my gift.  I will pray to my special someone for giving me this gift.  For, He, must have thought long and hard as to who should receive this gift.
Thank you for allowing me to share my GIFT with you.

God Bless,
Paula

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....................