Can I cheer, too?

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Bella and her uniform!

     When school started, Bella asked her classroom teacher when cheerleading try-outs were.  Bella is currently “hooked” on the Goonies and acts the movie out. She believes she is Andy (the cheerleader).  The teacher spoke to the cheerleading coach and arranged for Bella to be the “manager”.  She went to her first practice and she was so excited.  Se then began demanding her uniform.  She was all about the skirt.  The next week I spoke to the coach about Bella wanting the uniform.  She talked to the principal that said Bella could order the warm-ups, shoes and bow, but the uniforms are for “team” only (football managers don’t get uniforms…blah blah blah).

So, after practice, Bella got her backpack from the classroom and I explained to the coach how much it would mean to her to look and dress like the rest of the team.  Coach said she would try again.  Bella had tutoring after school and later in the evening I called her downstairs to run to the store.  Guess what she was wearing?  Yup, the WHOLE uniform.  When she went back into the room to get her backpack, there was a full uniform on the teacher’s desk.  Bella put it in her backpack deciding it must be her’s.  I explained that we had to take it back and that it was not her’s (not before taking a pic of her though!).  I sent the pic to her coach and teacher telling them I doubted anyone else ever wanted to fit in bad enough that they would um, “borrow” a uniform!

I walked Bella into school the following morning to return the uniform.  The teacher, coach and guidance counselor had met and decided that it was SOCIALLY APPROPRIATE for Bella to get the uniform like the other girls and she would be working on her social GOALS because of it!  She came home beaming Friday with HER uniform!  She wore it the rest of the day, slept with it tucked in her bed and wore it all day Saturday.  She even did her chores while wearing it.  So, I guess my girl is a cheerleader.  MY GIRL IS A CHEERLEADER!  Holy Shit Batman!

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One Piece At A Time

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Puzzle Piece Pins!

Before spring break, I had the opportunity to speak to Bella’s teacher, Mr. S., about April being Autism Awareness Month.  He wanted to do something in the school to make the students more aware of autism.  The goal being that by raising awareness, peers might be more inclined to reach out to other kids like Bella.

A few years ago I had taken a puzzle and glued a pin to the back of each piece.  I had planned to give these pieces to teachers, friends and family…but it never happened and those pins sat in my cupboard with old pictures and rolls of tape.  While talking to Mr. S., I remembered the pins and suggested that we get the kids to spread the word by wearing the pins.  Mr. S. gathered a small group of students together, including Blake, and gave them some information about autism.  They were each given a piece of the puzzle to wear.  When they are asked about the puzzle piece pin, the students would then share what they have learned.  If their classmate wanted to wear a pin to show their support, they were to see Mr. S. or the guidance counselor to get more information about autism and collect their pin.

Then I guess Mr. S. got a little excited about the plan and decided to add a twist.  He gave the students a challenge.  He told them if they could get 500 students to wear the puzzle pieces, he would participate in The 5th Annual Wrestle Against Autism.  This is a wrestling tournament that raises money for organizations that help children and families dealing with autism.

Today was the first day and the first batch of puzzle pieces are gone!  That means 70 students are wearing pins already! (The puzzle was 100 pieces but I guess when a puzzle sits that long…a few go missing).  So, tonight our little family created an assembly line in the kitchen.  We glued 300 pins to 300 puzzle pieces.  If that’s what it takes to make a difference, then that is what we will do!  One piece at a time.

Lalaloopsy and Legos!

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lalaloopsy

The Lalaloopsy Collection

     Holidays are a BIG deal to my Bella. Come October every year, she has made a list. In past years the list was typed in Word in 14 pt font and was over 30 pages long. Ahead of each item would be a ____ for Santa to check it off as he made/purchased each item. The list was VERY specific. For instance, she would never ask for “A Webkin”. Bella asks for the Golden Retriever Webkin, White Cat Webkin, German Shepherd Webkin, etc. If she likes a commercial, she goes online and finds their website and proceeds to add each item to her list. Harry Potter Lego sets? We got ’em! Every single one. Wizard of Oz Barbie dolls and Emerald City? Sure thing! Littlest Pet Shop? Why, of course! The good thing is that she does play with her stuff…well, until she gets new “stuff” then the old stuff is left in the closet.

     About a year ago, I implemented a reward system for Bella in order to get her to keep her room clean.  I would put a star on the fridge and then she could convert the stars into rewards.  A certain number of stars equaled a trip to the library or a bike ride to the park.  One day, not sure how or when, the stars got a dollar value.  Bella decided each star was worth one dollar.  I am not sure that cleaning her room was worth a buck, but I was willing to try.  I figured, she would earn $7 a week.  Blake makes double that mowing the neighbor’s grass so I figure she needs to learn the value of a dollar.  She would pick an item she really wanted and save up stars until she got to her goal and then “cash in”.  Since she wasn’t so good at keeping her room clean, it was only costing me about $5 a week.  Then the day came that she found her newly desired “collection”.

     So, you ask, what is it that she wants now? Well, I will tell you! She has been collecting Lalaloopsy dolls. There are the large dolls which retail for $19.99 (or $150 for the one she really really really wants that is on Ebay. Its Peanut Big Top and she wants the full size doll.  If you see it, buy it and I will pay you no more than $149.99 but it might take her a while to earn all those stars!).  She has 3 of the larger dolls and seems happy with them…although, I am sure they are all desperate to spend time with Peanut Big Top.  Some time ago we discovered mini Lalaloopsy dolls.  They are about 4 inches tall and come with a little cardboard house (part of their packaging).  They retail for $6.99, but I try to buy them in bulk when they are on sale for $4.99.  I was “charging” her 6 stars for a doll.  Things moved slow at first.  She became dissatisfied with the amount of stars she was earning.  After a visit to the orthodontist, we negotiated that if she could brush her teeth before bed, keep her rubber bands in all night and be a pleasant little lady in the morning then she could earn another star.  So, $2 a day didn’t seem so bad.  The stars really motivated her.  Roy and I would offer stars to get her to do other chores around the house and usually, she was more than happy to oblige and collect her star.  All was well.  I was trying to buy several of the dolls at a time and then hide them until she got her 6 stars.

     Then the $hit hit the fan!  Blake tore his ACL.  He needed surgery and then would need to be on crutches for 6 weeks.  I needed Bella to help him get into school every day by carrying his backpack.  I offered a star to help that very first day.  I had no idea that I had opened the Pandora’s Box.  She was the first one in the door after school to reward herself with a star.  What was supposed to be a one day deal has now turned into 6 weeks of extra stars.  If you are keeping track, we are now at 3 stars or $3 a day.  That means a doll every other day if she played her cards right.  She also managed to negotiate a few extras here and there.  She has rewarded herself for sitting through her brother’s physical therapy, going to the orthodontist, visiting grandma, shopping for groceries…pretty much anything she does has earned a star.  She has over 30 of these little dolls and it is getting harder and harder to find ones that she does not have yet.

     Here we sit, Holy Saturday and Bella has been in her pajamas since 11am (she woke up, bright eyed and bushy tailed, at 5am!).  Since her successful “mission impossible” last week, she knows there are Easter basket treats in the house…including new Lalaloopsy dolls.  She has wanted to go to bed since 3pm.  She has asked her at least 30 times when the Easter Bunny will be here and has searched the house, top to bottom, at least 5 times today.  We only have a few short hours until the basket is found and all is right with the world again…at least for a while…her birthday is May 1st and I better start stocking up on Legos.

Bella Story

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Blue Sharpie? Nope, lipstick!

The main reason I wanted to Blog was to share some of the best stories ever told (ok, that is my opinion, but seriously, these stories are funny!)  Many of my friends will text, call or email if they are having a bad day and ask for a Bella Story.  I am usually pretty quick to oblige!  Here is the most recent Bella Story…

     Bella has been on a crusade.  Easter is 10 long days away.  She is 13 and seems to believe in the Easter Bunny yet, she is on a mission to find her basket.  10 days might as well be 10 years in her mind.  I am in the kitchen cooking, watching Dr. Phil and probably checking Radar Online for the latest celebrity gossip.  Bella goes into the basement with a tote bag.  No big deal.  Her brother is downstairs saving the world on the Xbox.  Bella comes back upstairs and heads up to her room.  I hear her drop her collection of Mardi Gras necklaces that are tied together to make a long rope down the laundry chute.  This is nothing new.  Many dolls and toys have been dropped into the chute only to be rescued by Bella.  I can hear the beads in the chute and can hear the “rope” going down the chute.  Bella goes back to the basement and then back upstairs.  None of this is surprising.  The girl is on a mission.  This goes on for a while…upstairs, downstairs, beads in the laundry chute…  My husband gets home and we all eat dinner.

     Later in the evening, I go downstairs to walk on the treadmill.  Blake is saving the world and I am reading Janet Evanovich.  Bella comes downstairs and wanders into the other side of the basement.  The side where the Christmas tree is stored, the patio furniture, old photos and possibly my Milli Vanilli concert t-shirt from 1989…but I digress.  Unbeknownst to me, my little detective has been locating her loot for her basket, transferring items into her totebag which is tied to the bead rope and then pulled upstairs so that she can hide her stash in her room.  I catch her mid-transfer and she is completely caught off guard!  It took all my energy to not break into giggles.  I send her upstairs to get her loot and she comes back down with quite a stash.  She must have been planning this mission for a while!  I hand the stash to my husband and quietly ask him to re-hide these items while I distract/redirect Bella.  Well, hubby is obviously not the mastermind he thought he was and only 1 hour later, I found the suitcase that my husband had stowed the items in.  The suitcase was left empty in the hallway and the stash is hidden away again in Bella’s room.  Mission Impossible?  I think Tom Cruise better watch his back!

January 8, 2001

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January 8, 2001

The beginning…

Our story begins like so many others.  When our twins were 2 years old, we began to notice distinct differences in their development.  Blake was always about a month ahead of Bella when reaching milestones.  Around age 2, Blake began speaking in sentences and Bella could only name and label.  People said, “Oh, Blake is talking for Bella” and “She doesn’t need to ask for stuff because her brother does it for her.”  I began to believe the excuses and managed to go 6 more months before realizing that Bella wasn’t talking.

Around that time, her behaviors started to reach a boiling point.  I could put her in time out and she would cry and cry and immediately go back to what she was doing.  There was no comprehension of “cause and effect”.  I finally made the call and got her in to see a speech therapist.  During that first visit, the therapist noticed that Bella would pause while playing and stare off at nothing…the wall, a pencil, a crayon.  She would stare for several seconds and then go back to whatever she was doing.  The therapist said that the staring spells might be brief seizures and that we should see a neurologist.  I managed to get an appointment with a pediatric neurologist for ASAP (only after I called the pediatrician and expressed my frustration since I had been telling him all my concerns and he had blown each one off.  He contacted a neurologist and got us the appointment.)

My husband and I took her to the appointment fully believing that seizures were the cause of all of our concerns.  Dr. X came into the sterile room which had not one toy.  (Seriously?  You make a living seeing kids and your exam room has not one toy?)  Bella was not happy about our visit and clung to me.  Dr. X looked at my baby girl and barely acknowledged her or us.  After several long minutes he announced that he could confidently rule out a seizure disorder and that he was sure she had autism.  I dissolved into a puddle of tears.  Dr. X looked at me and said he was sorry, but he didn’t have Kleenex.  (Where did this guy graduate from – Auschwitz School of Compassion?)  He suggested we schedule an EEG to rule out seizures completely.  Dr. X said we could get a second opinion, but he was pretty sure he was right.  (Guess who got an appointment for a second opinion?)

That very first day is D-Day – Diagnosis Day.  Monday, January 8, 2001 was the day that everything changed for us.  So much changed on that one single day.  In the days that followed, I felt incredibly alone.  I would wake up in the middle of the night sobbing uncontrollably.  I spent hours on the internet (the one thing Dr. X had said not to do…ok, so he was right.)

I took my girl for our second opinion where I was sure this much more intelligent and, more importantly, female doctor would tell us Dr. X was so very wrong.  And she did.  She said Bella did not have autism.  Bella had PDD-NOS.  I was so happy!  I couldn’t wait to call Dr. X’s office and give him a piece of my mind!  I got home from that appointment and immediately rushed to the computer to get more details about PDD-NOS (surely this was a diagnosis for very smart children who were late talkers, non conformers and resistant to change…).  So, I googled it.  Big mistake.  Huge.  I very quickly realized that PDD-NOS was an Autism Spectrum Disorder.

The Story of Us

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My Family

...it took over 400 photos to get this 1 perfect picture of us!

Hello World!

Today is Autism Awareness Day and I thought it was appropriate that I finally post my very first blog.  It was announced this past week that 1 in 88 children are diagnosed with autism.  When my 13 year old was diagnosed it was 1 in 400.  It has become a huge concern for parents, caregivers, schools, and communities.  I want to share my experience with others so that they might better understand autism spectrum disorders.  I also find humor in a lot of this crazy world and want to share our stories.

Welcome to our world!

Xoxo!

Becky