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