Tuesday, March 25, 2014

The Greatest Who in Whoville

     Sophia debuted as Matilda the Who in her high school musical, Seussical the Musical this past weekend.  It's been two days since her final performance and I can't stop thinking about what an awesome job she did.  We are proud beyond any words.  It's times of these big successes that it's difficult not to think back to where we started and how far we have come.   Here is a 15 year old young lady who can't read or do math past a third grade level, who struggles with severe anxiety and social relationships yet, worked hard, learned songs and difficult choreography and totally rocked the stage.  Here was our Sophia who fit right in!

     Sophia tried out for the musical in the Fall and has been going to practice 12-15 hours per week on top of school since January. The two weeks before the show they practiced nearly every day.   There have been many (many)  struggles but we worked through it all.

      Perhaps you are reading this and thinking there is no way your son or daughter could do this.  I'd like to suggest otherwise.  Sophia's success in Seussical  is rooted in a network of family, teachers, other parents and peers that have embraced Sophia -- all her differences and all her abilities.  It all began years ago with with getting Sophia involved in community sports (Special Olympics, Topsoccer, therapeutic horseback riding), active in her school and our community. A lot of talking and educating others has gone on over the years.  We pressed on through anxieties and difficult behaviors.  We  ignored looks and comments and kept putting our family "out there."  Not only for people to accept our children but for our children to accept their community.  Relationships developed and people began to know Sophia. More and more it has become an attitude of  "how can we help Sophia."   And so, we were able to drop Sophia off at practices and know that she would be okay.  We knew that should Sophia have a problem either an adult or a peer would be able to help her out.  Too big of a problem and they would call.  The Directors all knew Sophia.  Parents helping with the show could identify red flags.  And most importantly, Sophia's peers treated her as a friend.  Just last week, I was told of how during dress rehearsal the kids were told to go off stage and change into their next costume.  So, doing as she was told, Sophia went off stage and began to change right there!  Without making fun or laughing (okay, she was probably shocked to see Sophia standing there in her bra and underwear!) a friend simply reminded her that "we change in the bathroom."

     We have learned that we can not navigate this life without a little help.  Sophia needs a lot of support to navigate each day but she has proven beyond doubt that with the right pieces in place she can really succeed.

"And will you succeed? Yes indeed, yes indeed!  Ninety-eight and three quarters percent guaranteed!"  
                                                                            Dr. Seuss

Friday, February 28, 2014

Look out Late Night Television

     Sophia sang at her school's talent show Friday night .  It was part of a night long fundraiser for kids battling cancer and the auditorium was packed with over 400 students and the public.  William and I were beyond nervous.  Would Sophia do okay?  Would the audience be receptive?  

     Sophia's name was announced and she took the stage to hooting and hollering "Yeah Sophia! Go Girl!" Of course, she sang her favorite band, One Directions', song "What Makes You Beautiful."   Her voice was a bit off key and you could see how nervous she was as she tried to sing through her giggles and big smile.  About 30 seconds into the song the audience started clapping along and some started to sing.  Sophia got herself back on key and totally rocked the rest of the song.  For the last 30 seconds of the song everyone  stood up and clapped along.  It was UNBELIEVALBE.  Sophia took her bows and exited the stage. 

     Between performers there were two emcees that were talking to the audience and judges and cracking jokes etc.  They asked one judge if he was a fan of One Direction because everyone knows how they are.  They were joking with him to sing a little bit of a song and at the same time they started the song track to Sophia's song again (for him to sing along to).  From behind the curtain and back on stage comes Sophia with a huge smile singing into her microphone AGAIN singing "You're insecure.  Don't know what for......"  She took the stage AGAIN and sang 30 seconds of the song until they cut the music.  The entire place was laughing and clapping.  Sophia couldn't have planned it better and didn't realize how perfectly timed her entrance was. It was hysterical.

     The only bad part about the evening was coming home to find that I had neglected to hit record on the video camera.  Thankfully, I was able to track down someone at the school who captured some of Sophia's stellar performance. 
     We were so proud of Sophia.  She was so proud of herself.  Students kept coming up to her and telling her what a great job she did.  It was awesome. 

     We posted Sophia's story and video clip on our facebook pages and having shared all the words of congratulations to Sophia she announced that now she is ready for the Jimmy Fallon Show.  

Jacob and his good friend Bree.

Sophia after the show  very excited and proud. 

Thursday, February 13, 2014

She sure does keep us on our toes.

     Sophia has had a very difficult week this week (wait, it's only Thursday!)   Good thing - we know why.  Bad thing - it's multiple reasons.  While we try to keep Sophia's life as routine as possible often things are out of our control and we are left to do damage control.  This winter has thrown us for a loop.  Sophia has not had one full week of school since mid-December.  Illness, school delays and cancellations have been very difficult for her.

     We talk to Sophia using terms like Green (good) choices and Red (bad) choices and expected and unexpected situations.  We talk about Zones of behavior to describe how she is feeling, how her behavior is perceived by others.     Basically, Green zone is feeling good and behavior that is positive.  Blue and Yellow zones Sophia may be grumpy, frustrated, tired or mad but she is using coping strategies to get to the green zone or acknowledging she is blue or yellow and needs help or or a break.  Red zone she is not good.  Behavior and emotions are negative.  The key is to help her get to the green zone and feel better.  You can be in blue or yellow zone (because we all have bad days) but it's how you act in those zones that lead to green or red behaviors. Whew...it's a lot of work to get through a single day!  It's a lot for all of us especially Sophia but it really does work.

     Mornings always give us a great opportunity to work on behaviors.   I tried to get her up this past Monday morning for school and was met with a very mad Sophia who cursed at me and had some not nice things to say about her principal. I closed the door and said, "I hope the nice Sophia is awake today (giving her a chance to "fix it", as we say) and reopened the door.  She was still made and said,  "The sun isn't even out." True.  No sun  puts us all in a grumpy mood, right? I told her that it made me grumpy also to get up when it's dark out but once we get moving the sun will be out and we can feel better. She didn't buy it.   Over the next half hour of trying to get ready for school her behavior continued to go down hill.  She wrote not nice notes to me and continued her verbal barrage of everyone she could think of.  She finally did get on the van to school and before she shut the door had to yell, "Have a great day you Mother F%&^!"  Ugh.  I called and told her TSS about our morning and wished her luck when Sophia got to school.  Often, a van ride is enough to deescalate Sophia and thankfully, that was the case.  She ended up having an okay day at school.  On top of it being a dark Monday morning, we figured out that she was worried about a field trip to a Vo-tech School that she thought was this week but is next week.  Sophia has no concept of time and that reeks havoc with her.  Despite calendars and countdowns, she will worry about something in the future that others wouldn't even think about. A teacher can mention something that will take place a week away and she will get stuck worrying about it.

     Tuesday morning was not any better.  I woke her up for school and she cried and cursed that she hated school and wasn't going.  To quote Sophia, "School is for losers and bitches."  Surprisingly, she snapped out of her bad mood and quickly got ready for school so she wouldn't miss the van.  She still wasn't totally in the green zone when she got on the van and had to say one last not nice word before she left for school.  I then got a text from her.   Sophia's newest thing to do is give the finger.  It's her pointer finger and she'll shove it at you in anger saying, "I'm giving you the finger.  Do you see?"  Kind of loses the intensity when it's not the middle finger!  But we'll keep the pointer!!

     I have an app called Appcertain that allows me restrict Sophia access to her phone via my phone.  As luck would have it, the app was not working this morning and I couldn't restrict her access.  On any other day, one of her consequences for red choice behavior in the morning is me turning off her phone thus restricting the ability for her to text me not nice things.  Boy, does that make her mad!

     Last night, Sophia was in her room crying.  I went up to talk to her and she was hitting herself in the face.  I tried to ask what was bothering her but she kept crying, "I don't know." We talked about the snow that was coming and that school would probably be closed. We talked about Valentine's Day and how she hoped to get a Valentine from Harry Styles.  She felt better fast.  Half an hour later,  I got a text from her that explained everything.

Translation to her typing:  I am scared.  I am worried about the quiz on Monday.

    Dolls freak Sophia out.  That is not a new worry.  But worrying  about the quiz explains so much of her behavior over the past few days.  We'll continue to process with Sophia and maybe if they have school on Friday she can take the quiz early.   Fingers crossed that tomorrow morning will be smooth.  Sophia has Valentines to hand out to her friends and a dance in the evening.

Wednesday, February 5, 2014

Eeek! I have friends now!

     It started with a simple request by my sister.   Sarah asked her friends to "send a birthday card to my niece.  She is turning 15.  Sophia has Autism and does not have a lot of friends.  So, if you can send her a card that would be great."  That simple request turned into a mailbox full of birthday wishes from near and far. That small group of friends Sarah asked then asked some of their friends and so on.  The birthday cards started to arrive the day before her birthday and continued  for several days.  Despite her own busy life, Sarah is great at sending cards for special occasions.  While it is much easier to send a text or email, Sarah continues to go "old school" and use snail mail.  It's one (just one, Sarah) of the things I admire and wish I did more of....just stopping and taking the time write a letter.   Sarah started sending Sophia multiple cards about 2 years ago.  She made up funny names and far away places that totally fed into Sophia's imagination.  Sophia has kept every card she got from Chang from China, a pirate, a cowboy out West, and other interesting, creative characters.  With a mind that never forgets a thing, Sophia still talks about those cards in detail.  She still has the cards in her room and every few months she carries them around for a week and she reminisces about the day they arrived.  After a few days they disappear again.

      This year, Sophia got cards from California to Barcelona.  All came with special birthday wishes for Sophia and all made Sophia's birthday celebration so much brighter.  She received one large envelope full of handmade birthday cards from the Country Day School of the Sacred Heart, in Bryn Mawr, Pennsylvania.  It was so cool to help Sophia read through the cards.  Each card was so personal and was written as if they and Sophia were good friends.  It was clear that these girls took the time to make Sophia feel extra special.   Most were signed "Love your friend."  to which, at one point, Sophia responded, "Eekk, I have friends now" while clapping her hands in excitement.  She suggested half way through reading the cards, "Oh, we should go visit my friends some day."

     In other birthday celebrations, Sophia wore a birthday balloon on her backpack during school so everyone knew it was her birthday.  The chorus sang to her during chorus class to which Sophia broke down in sobs since she was so excited.   Mary made cupcakes to share with Sophia's class and we sent in 6 large pizzas for Saturday's school musical practice.  The musical cast sang Happy Birthday to her and called her the "Birthday Queen" for the day.  What could be better?

     To say that Sophia has no friends is not entirely true.  Sophia has neurotypcial friends at school that say hi and may talk to her between classes or at lunch but there is never any attempt to communicate or interact outside of school hours.  Sophia has friends that have intellectual disabilities like her but, those relationships require a lot of adult support.  What Sophia does NOT have is that friend that will call her and ask her to go to a football game or the movies.  She is not invited anywhere outside of school unless we initiate something.  Sophia may have a diagnosis of Fragile X and have significant developmental and emotional delays but she is smart enough to know she is missing out on the part of friendships where you "hang out and text each other." For a teenage girl, that is really what is really makes a great day.  Isn't it?

     Thanks to everyone who made Sophia's birthday extra special.  To all the people who took the time to send Sophia a birthday card thanks from the bottom of our hearts.  The joy it brought Sophia WILL continue to live on in her for a long time.  Sophia has all the cards in her bed with her and she still looks at the every night.  Just yesterday she said, "Remember the time I got all those cards in the mail? Oh, that was so awesome."

Thursday, July 18, 2013

Glad to be Back

It's been a little over a year since my last post.  I walked away from the blog all those months ago because I felt uneasy about mostly sharing all the great things in our lives.  I felt like I was just sharing all the great accomplishments and triumphs.  I didn't want to show off and come across as this family that did everything, which I felt was the direction it was going.  That's just not me. Yes, we are an active family and that is what we choose.  We are thankful that we have the resources, community and family support to be able to do what we do.   Certainly, it is not doable for every family.   The blog had evolved into stories about mostly our successes leaving out all the struggles, heartbreak, and hurdles it took to get there.  Perhaps it was a subconscious decision because really, why would we want to relive some of our tough struggles? With each and every success story there is a back story of our struggles, failures, heartache and disappointment.  Each and every success came with a price.  Each and every success was a culmination of sometimes months if not years of trying and never giving up.   Were there days when we wanted to give up?  Certainly.  Were there times when we decided that we should slow down and not push so hard.  Certainly.   Were there fights and tears?  Absolutely.  Were there hugs and high fives?  For Sure.

So now, we will put it all out there!  We will share stories of getting called a Mother F'er at the public pool when someone didn't want to join the swim team and going back everyday for 3 days, facing the looks and stares as someone carried on until she finally swam 1 single lap with the team and THEN she didn't have to practice anymore.  We will share stories of how that same child cursed, hit and bit me at her Middle School Musical Practice because she wanted to be home taking a nap instead of at practice.  When she was able to calm down after 45 minutes we could finally leave nicely but only after I attempted to explain and apologize to the other parents for Sophia's behavior while being at my wits end. We'll share stories of the struggles of our typical children as they deal with some of their siblings behaviors and often enduring physical harm (hitting, pulling hair, pushing) at their hands.  We'll share stories of crying ourselves to sleep at night from being so mentally and physically drained.  Of wondering if we are doing the right thing, of feeling we are doing too much and of feeling we are not doing enough.  And there will always be funny stories like when Liam said to his Principal, "Hello Toots" when she entered his classroom this year  or when Jacob and Liam were jumping off the edge of the pool (public) yelling nonsense words as they jumped.  One non-nonsense word came out of Jacob's mouth and Liam loudly repeated "SEX" as he jumped in the pool. 

And now,  a good story to kick off the resurrection of The Luckiest:   We live very close to Hershey Park.  We've been taking the kids to the Park every summer since they were little. It was a very sad day when he got too big for the baby rides.  Jacob loves going to the Hershey park and seeks out all the rides that spin.   We have spent years building Jacob up for his first official roller coaster ride.  A few years ago we began to practice riding the coaster each time we visited the park. We'd wait in line and when it was our turn we'd walk right through the roller coaster car to the exit.   The whole time in line Jacob would be hand flapping, jumping (right on the heels of the person in front of him), and growling.  People would stare and some would giggle.  I would explain to the people around us that Jacob was so excited and nervous and that we were just practicing. Once they understood, people people were understanding and some would talk to and encourage Jacob. The next year, we upped the ante to Jacob stopping and standing in the car and then exiting.  The next year, we made Jacob sit for a split second in the seat of the roller coaster and then he could get off.  Last year, we made him sit in the coaster seat for 5 seconds and then he could get off.  One time, the entire group of people clapped for Jacob as he successfully sat for 5 seconds.  This year, we are making Jacob sit in the seat and pull the restraint down in front of him.  The ride operators will then release it and we can get off.  This whole process has taken years and we have to quickly explain to the ride operator what we are doing...just practicing riding the roller coaster.  Last week, Jacob said he wanted to ride the Coal Cracker, the log flume ride.  Jacob has tried to ride this ride over the years too.  He would sit in the boat for a few seconds and then jump out (there are no seat belts and it floats super slow until the ride leaves the loading area = too much time to worry and easy escape.)  So, when Jacob told me he wanted to ride the Coal Cracker I was not confident this would be the time.  We got in the boat, Jacob in the back., myself in the middle and Sophia in the front.  (Sophia loves all the roller coasters.  We never had to practice with her. We practice other things like language control!)  We floated for a few seconds and Jacob didn't try to get out.  This was success.  I sat still in my seat afraid to look back and make eye contact with Jacob.   From the front of the boat, Sophia starts saying, "Jacob, you're doing it!  You're first roller coaster.  Good boy.  You're not even scared!"  I couldn't get her quiet fast enough and thought for sure Jacob would jump out. But, I could hear from his giggles and "whoo hoo's" that he was happy.  His anxiety kicked in at the last second and he tried to get out  but I pulled him back into the boat and off we went.  You can see from the photo that Jacob LOVED it!  And in order to keep the success fresh, we have gone back to the park two more times just to ride the Coal Cracker. 

Glad to be back. 

Sorry about the poor quality.  It's a picture of a picture.


Sunday, May 20, 2012

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. 

Thursday, May 10, 2012

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