I'm waving Mommy

     The story I write about today has nothing to do with having a disability.  It has to do with kindness.  A few weeks ago, we were marching with our children in the Opening Day Parade for baseball.  Like in most towns, Opening Day for baseball is always a big deal.  The season kicks off with all the baseball players gathering at the center of town to march  to the baseball field less than a mile away.  Leading our parade was a firetruck and the Hershey Kiss Mobile.  Once at the field there was even a fly-over by a vintage airplane shooting colored smoke out the back.  Like I said, it's a big deal.  The streets were lined with people: parents, grandparents and siblings eagerly looking to catch a glimpse of their ball player.  Our kids were enjoying marching in the parade and waving at all the people.  Liam waved and marched the entire time.  It was an exaggerated and clumsy looking march, more like stomping but he was having a great time.  Liam waved his arms enthusiastically in the air, smiled ear to ear and enjoyed every moment of the parade.  He would yell, "I'm marching (stomp. stomp) I did it!  I'm waving mommy!"  For the most part, the only people that waved at Liam were the people that recognized him.  At one point Liam did say to the people "wave at me."  About half way through the parade, with Liam waving and marching up a storm and no one returning the favor I thought.  How rude.  How can people just look at a kid and not wave back.  It had nothing to do with no one seeing him.  It had to do with people just not being kind and waving back.  Unbelievable.

          Last evening, Jacob, Mary and I went to Hersheypark.  We would have gone as a family but Liam has too much anxiety about Hersheypark.  That is a post for another day. To those of you not familiar with Hersheypark there is a steep hill you have to walk up after entering the gates.  It was crowded last night and as we made our way up the hill we came upon an elderly man in a wheelchair, with oxygen in his nose, trying to get himself up the hill.  I got behind the man and pushed him the rest of the way up the hill to his wife.  The man and his wife were there with their grandson and she was pushing the young boy in a stroller.  He thanked me for the help and was on his way. Mary said to me.  "Mom, that was nice.  He needed help."  I was just amazed at all the people that had to have walked by this man, literally walk around him,  and had to have seen him struggling to get up the hill and no one helped.  Unbelievable. 

       We were waiting at the top of that same Hersheypark hill for my brother-in-law and his daughter when a family with four young children walked by us.  There was a boy about 8 years old holding on to this huge stuffed ladybug.  The ladybug was almost the size of the young boy.  He struggled to walk with it.  He could barely see where he was walking.  Jacob's favorite color is red and as they passed us Jacob reached out to hug the stuffed animal.  At this point, Jacob is excited about the ladybug and he is hand flapping and growling.  It is clear to the parents that Jacob has special needs.  They stop a few feet past us and I watched as the dad leans down to talk to the son holding the ladybug.  Over the next 30 seconds there is a tug of war over the ladybug, the dad keeps talking to the boy and the boy starts to cry shaking his head "no."  I KNOW that the dad is telling the boy to give his ladybug to Jacob.  I walked over to the family and thanked them for being so nice but that we couldn't take the ladybug.  Unbelievable.

      There are some unbelievably kind and some unbelievably unkind people in this world.  In a 15 minute time frame last night we got to experience both. 

Jacob turns 15 today!!

     Jacob is 15 today!  May 10th is a day when so many emotions surface.  There are the wonderful emotions of love and pride when I think about Jacob and the day that he was born.  May 10, 1997 is the day I became a mother to a beautiful baby boy.  There are also very sad and angry feelings that creep out today because on May 10, 1999 we were given Jacob's Fragile X diagnosis.  I went back today to read what I posted about Jacob's birthday last year, The 12 year roller coaster and still riding.  Our family is still very much riding the roller coaster and the emotions I wrote about are still very raw but today is a day to celebrate.

      Jacob is so excited to celebrate his birthday today! He laughed and laughed last night when we put him to bed as we talked about his "special day" in the morning.  I think he even woke up laughing ready to celebrate the day. Okay, so Jacob loves to celebrate anyones birthday but his own is even better! Last week, we asked him what he wanted for his birthday and he said "cake and green chips."  To decipher, green chips would be sour cream and onion chips because they come in a green bag.  I said, "No, I mean what kind of presents do you want?"  Jacob replied, "A hat and a granny cane."  Yes, Jacob loves to pretend he is a granny with a cane.  I do hope that he likes the Super Soaker squirt gun we got him instead. 

           To the doctor who told us 13 years ago that Jacob would never go to high school well, Jacob is finishing up his first year in high school. 

Happy 15th Birthday Jacob!

Coach Jake and the Palmyra Girls Lacrosse Team

Oompa Loompa Doopity Do!

      Sophia starred in her first musical this past weekend debuting as an Oompa Loompa in her school's version of Willie Wonka Jr.  Proud does not even come close to describing our emotions watching Sophia on the stage singing and dancing and totally enjoying herself.


       When Sophia tried out for the musical back in January we had no idea what to expect.   What if she didn't even get cast in the show? Sophia was super excited when she found out she was going to be an Oompa Loompa.  She wanted the part of Violet Beauregarde so that she could chew lots of gum but was fine with being an Oompa Loompa.

        We, too, were excited for this new activity but had many worries.  In our own minds, we were battling with a few fears and decisions. The biggest dilemma was do we tell the Director about Sophia's Fragile X or do we let Sophia be a "kid without a label" for once. Had Sophia NOT been doing so well socially and academically we probably wouldn't have even thought twice about telling everyone about Sophia's disability but she HAD been doing so well. Here was an opportunity to let Sophia be Sophia. Let Sophia prove to everyone (mostly her dad and I, I guess) that she does have the ability to do something just like her peers. To do something without constant adult supervision and redirection. It was our chance (perhaps our obligation) to trust Sophia. To give her the space to prove that she can be more independent. For the record, there were two women involved with the musical that knew Sophia from helping out in her classroom over the years. So, it wasn't like we would be leaving Sophia with no safety net if she had difficulty. Rather than the usual huge safety net though it was small.  Perhaps one of our faults is that her dad and I have difficulty letting go.  We want to control so much about our kids' life.  We want to be there to make sure no one makes fun of them.  To make sure they are included.  To make sure they are behaving.  To be there when they falter.  It's hard to let go.  What did we decide to do?  We gave the Director the watered down version of Sophia's disability.  We told her about Sophia's anxiety and that a break from the play or a walk outside would help if she was getting stressed.  Ahem, we simply forgot to tell her about the cursing.  We reassured her that we were confident Sophia would be fine.  However, a little voice in my head kept saying "What in the world are you thinking?  You know what a meltdown for Sophia looks like and who in the world will be able to handle that?  What if your plan fails?"   Like I said, the safety net was there for Sophia just smaller than normal.   The women assured me they'll look out for Sophia.  I'd be lying if I didn't admit that we constantly second guessed our decision.  We anticipated doing lots of  damage control after the show was over.

      Practices started in January.   I picked Sophia up after one of the first few practices and asked how it was.  She told me that she took a nap and yes, from the looks of her sleepy eyes and hair she must have been snoozing a while.  I questioned why no one woke her up but she didn't know.  (Ugh, did I make the wrong decision? Did they let her sleep because they didn't want to be bothered? Would I need to be more on top of things?)  I let the nap slide and hoped for better success in the future.   In February, I realized that while I had given Sophia a lot of independence I was still walking her from my car into the school just to make sure she got where she was going.  (I told you it was difficult to let go.)  Sounds silly but it was extremely difficult for me to drop her off at the curb and watch her walk into school by herself. It's probably the most simple thing to let go of but I had trouble.  There was no danger in letting her walk into the school with all the other kids.   I mean, I could see her the entire way.  I just had to let go.  Let go I did.

      In mid-February when Sophia was at one of her practices she texted me to "call Ashley (the Director) she is mean."  When Sophia says someone else is mean it usually means she has made a red choice and has gotten into trouble.  I texted back "are you OK?"  and she texted back "No."  Within a few minutes the phone rang and it was Ashley.  She proceeded to tell me that Sophia refused to practice a dance and had a meltdown.  At that moment, things had settled down but she wanted to let me know there had been some difficulty. When I heard meltdown I am envisioning Sophia swearing, hitting and causing a scene.  I got to the school to pick up Sophia and found out that the "meltdown" was her just refusing to dance and that Sophia asked for a break!  That was no meltdown!!  That was success!!  She realized she needed a break and asked for it!   

      The March calendar came and the kids had practice practically 5 days a week leading up to the show.  We were worried that Sophia wouldn't be able to handle all the long hours on top of the stress of school and homework.  Sophia proved us wrong.  She handled everything fine.

      The kids performed the musical on Friday and Saturday night.  Sophia had to be at the school at 4:30 PM to get ready for the 7:00 PM show.  Again, we wondered how Sophia would do passing the time till the show?  Again, she did fine. 

      The show was a huge success.  The kids had a party after their final performance.  When I came back to pick up Sophia at the end of the party I was stopped by three other moms who praised Sophia for a job well done.  What I was told next made us proud beyond words. I was told that Sophia received 1 of the 5 "Paper Plate" Awards as voted on by her peers.  Sophia's won the "Most Enthusiastic" Award.  What does that mean?  It means that we  ABSOLUTELY made the right decision.  It means that Sophia rose to the occasion.  Sophia was not there as the "special needs kid" but as Sophia Parker, a Palmyra 7th grader, one of the Oompa Loompas. and a young lady who always tries her hardest with enthusiasm.  

       I am normally not a risk taker but I'm glad that Sophia was able to prove me wrong.  While I may not take another gamble on Sophia's behavior like that for a while I'm glad I can share this success story. 

A job well done Sophia!

My most favorite Oompa Loompa!

The official Paper Plate Award (literally)!

Sticks and Stones

      Sticks and Stones may break my bones but words will never hurt me.  On the contrary, words can hurt very deeply.  Yesterday was "Spread the Word to End the R-Word." A day set aside by the Special Olympics every year to bring increased awareness to the negativity of the word retard.   Everyone should realize how negative and hurtful the word retard is to anyone that is intellectually or physically challenged, to caregivers and those that work with the special needs population and especially to moms and dads.  All around me, people casually use the word retard in their conversations.   I hear, "Oh, I feel retarded" Or "That was so retarded of me." Or even, "Why do you have to be such a retard?" Sometimes I think that these people must not realize how offensive this word is. Has it become so commonplace that they don't even realize what they are saying? Each and every time I hear the word retard my heart breaks inside because three of my children are mentally retarded. 

     I am embarrassed to say that when I hear someone use the word retard not once have I been able to be brave enough to say, "Hey, don't use that word."  I just get too emotional.  Instead of having the guts to say something I get too upset and the words get lost inside.  In my mind, I try to rationalize what I just heard by thinking that "Well, they just don't know what they are saying or they don't really mean it."  My next thought is that next time I will be brave enough and say something. 

     For our family being retarded means that our 7th grader can only read on a 1st grade level.  It means that our 14 year old still needs help tying his shoes, safely crossing a street and brushing his hair and teeth.  Being retarded means that our 8 year old struggles to hold a pencil and write the alphabet.  Being retarded means that places kids enjoy like the movies and amusement parks are overwhelming and scary.  Being retarded in our family also means unconditional love.  Being retarded means facing each day with courage and a smile.  Being retarded means not judging others.  Being retarded finds joy in the simplest things.   Being retarded in our family is not a swear word or a word used to belittle someone.  It is diagnosis that our children have been given but it does not define their potential. Being retarded in our family has made us all stronger.

     If taken literally being retarded means being exactly like Jacob, Sophia and Liam.  It hits home when you substitute our kids names for the word retard.  So, the next time you spill something or forget to do something and you have the urge to say, "Oh, that was retarded.  You might as well say, "Oh, that was so Jacob or Sophia or Liam." 

Sucker Punch

       I have been struggling with my latest post for several weeks.   It was a story about Sophia. You see, Sophia, has picked up cursing as a pastime.  Over the past few months, she has called me every imaginable curse word.   As I began to write about this new cursing behavior I struggled with a few things.  How do I put all these curse words on paper without being offensive?   How do I explain this latest behavior as it relates to her disability?  Whatever I wrote just didn't feel right.  I couldn't seem to put into words how Sophia's anxiety "made" her so edgy that she cursed, explain where she could have possibly picked up those curse words, explain how she learned to use them in context, and how I handled situations like the time she called me a mother f'er in public.  As I typed, the paragraphs became longer and longer and as I re-read my words I knew I didn't clearly explain this new behavior.  Suffice it to say then, that Sophia curses because of anxiety.   Sophia has picked up most of these words at school and I still have no clue how to handle this behavior other than trying to ignore her and redirect.  It's true, when I tell my sisters stories about Sophia's cursing it's difficult not to laugh.  Imagine, the morning that Sophia was worried about a test at school.  She woke up calling me a "Piece of S*it" and then proceeded to ask if I wanted a "B*tch slap."  Really?  At 6:30 in the morning that is NOT what I wanted to hear!  My sisters and I laughed because I had to google B*tch slap" to be sure I knew what she was talking about.  According to the Urban Dictionary it means "to open handedley slap someone. Denote disrespect for the person being bitch slapped as they are not worthy of a man sized punch."  My question to whomever is using the words B*tch slap at school, "Why not just say sucker punch."  That I can handle.

       On Wednesday, Sophia celebrated her 13th birthday!  Sophia is still a die hard, Justin Beiber and Jonas Brothers Fan.  For days leading  up to her birthday she hoped that Justin Beiber or the Jonas Brothers would send her something in the mail.  Lo and behold on her birthday, she got two cards in the mail.  One was a singing card that had a Jonas Brothers song recorded and one was a letter we wrote from Justin Beiber.
Is it right that we feed into her Beiber Fever or her obsession with the Jonas Brothers?  Perhaps not to some people however,  in every letter we have written from "them" there is a lesson for Sophia.  Of course, the lesson of the month has been to use kind words.  And as you can see in the video of me reading the fake Justin Beiber letter, it worked for the moment. 
 

       In the end, I guess I didn't need to litter my blog with nasty curse words to tell my story.  All kids go through peaks and valleys it just so happens that Sophia is stuck in a deep valley at the moment.  We are working our way out (one curse word at a time) and soon she will move on from cursing to a new behavior for us to tackle.  That is life with kids, disability or not, we'll just keep moving forward.  I'd like to quote myself . Can I do that?  "My children have taught me more about life, love and compassion than anyone or anything ever could" and now I can add that Sophia taught me the fine art of cursing. 

Christmas 2011

     Hope you weren't looking for that Christmas or New Year's update closer to the Holidays.  I didn't even get out Christmas cards this year.  I attempted New Year's cards but now am aiming for Valentine's Day cards.  Where does the time go anyway?  We had a great Christmas.  Once again, Sophia started putting milk and cookies out for Santa a good month before Christmas.  Liam went to bed every night saying, "It's Christmas Eve.  Santa is coming tomorrow."  Jacob looked out his window every night to see Santa and Rudolph in the sky. Good thing Thomas and Mary understood that Santa only came on Christmas Eve.  Every year, the kids do a little better handling the excitement and anticipation of Santa's arrival.  In the past, Sophia would get upset when Santa wasn't eating the cookies she put out in November.  Now, she puts the treats out but accepts when they aren't eaten however, she tries again night after night. 
     We spent Christmas Eve with the Hofmann side of the family.  When it came time for the gift exchange Sophia raised her hand and asked for every one's attention.  Sweet Sophia said, "I want to thank Grandma and Grandpa for having us.  Thank you for the food.  Thank you Grandma for having us.  Grandma you rock.  Congratulations Uncle Matthew and Aunt Corrie for the baby (expecting their first).  I pray you have a happy family.  Thank you to Grandma and Grandpa for the presents.  We love you very much.  Thank you.  We love you very much.  You rock.  We love you."  We all had tears in our eyes because it was so genuine and from the heart.  What an emotional moment for me to experience that beautiful, compassionate, gentle loving side of Sophia.  Damn you anxiety for always reeking havoc on Sophia's life.  Without you this gentle beautiful side of Sophia would always shine through.

     So, Christmas morning was great.  Santa did well for all the kids.  I had to laugh because within 10 minutes of the kids opening their new toys Sophia and Liam were on their computers watching their usual YouTube videos.  Not even Christmas morning could disrupt their routine.  Thomas was happy with his new Nerf gun, Mary her assortment of decorative duct tape, Sophia her Justin Beiber blanket, Liam his train set, and Jacob his new microphone/voice changer. 

     The Parker side of the family came over for Christmas Day.  The newest addition to the Parker family, 1 month old, Owen Parker Raub, spent the day with us.  It's always great to see my kids interested in babies.  Jacob has always loved babies but he gets too excited and nervous to be able to safely hold a baby in his arms.  In the past, he would prefer a baby laid on a pillow across his lap where he didn't have to touch or hold him or her.  This year, he overcame all his excitement and nerves and actually cradled baby Owen in his arms.  Jacob was certainly proud of himself. 

     Mary and I went to festivities in Hershey on New Year's Eve which was a lot of fun.  Thankfully, the weather was very mild.  The rest of the Parker's rang in New Year's Eve at home watching it on tv. 

     Sorry to say, there aren't any other exciting Parker stories to share.  Time to think about those Valentine Cards.

"I have Autism and I Love it here."

     Wow!  It's been a while since I've posted in my blog.  That is not to say that life has been dull just nothing that has really moved me enough to write until last Saturday.  Last weekend, our non-profit Champions for Children, hosted a fundraiser celebrating the 26th Anniversary of the Capital Area Therapeutic Horseback Riding Association.  This was our 11th fundraiser and our 3rd fundraiser for CATRA.  It was a fabulous evening of dinner, dancing, silent auction, raffles, and awards.  The highlight of the evening was the photo booth that everyone really enjoyed.  In addition, my  husband stepped down from emceeing and I made my debut as the official emcee of the evening.  If you know me at all you know how much I dislike public speaking but standing in front of the CATRA family and speaking about a program that has been so positive for my family was not so difficult after all.

     As we were packing up at the end of the night, our banquet captain for the evening stopped us and told us how inspired she was by the entire evening.  She said that in her 15 years of serving banquets she has never been so moved by the inspiring stories, the inspiring people and the passion that exuded for one single program.  My only response was, "I know. It's amazing."  

     Enjoy the video that was created for this year's event.  In the words of one young man you will see on the video.  "I have Autism and I Love it here."  The truth is, everyone loves CATRA.