The Talent Show!

Last Thursday Skylar performed in her middle school talent show.  I was so proud of her when she came home and told us that she wanted to try-out.  She loves to sing. She sings a LOT!  Most days she comes down the hill from school singing away.  That is usually an indicator that she is in a good mood.

I wanted to share with you why I am so proud of Skylar’s performance in the talent show.  Ten years ago I sat in a small room with a developmental pediatrician who told me that Skylar most likely would never speak.  He also told me that we would probably need to institutionalize her when she was a teenager and that she would be lucky if she could ever get a job bagging groceries when she was older.  I remember sitting in that office and saying “Dr. S, thank you for your time, but you REALLY need to work on your bedside manner….it SUCKS!”

I’m so thankful that I knew enough not to listen to that doctor and his very bleak outlook on Skylar’s life.  About a year later, Skylar found her voice and she has been using it to sing ever since!  Never let anyone tell you what your child can or can’t do!!

Below is the recording of her performance last week.  She sang ‘Free to Be Me’ by Francesca Battistelli. She sang this same song in her 5th grade talent show, but this year as the music started & she started to sing, we were surprised to see her doing movements to the song.  That was totally new! I got so tickled and couldn’t stop smiling & giggling.  My first thought was “That is AWESOME!”  I love her sweet spirit, her confidence, & her absolute ability to make people smile!  It doesn’t get any better than that!

The Accent

Hello friends!  It’s time for another installment of No Filter Friday.  This is the time that I love to share things that the girls have said or done that have left us red-faced, laughing, and sometimes speechless.  One of my favorite parts of Skylar’s autism has been the total lack of “filter” that she possesses. In many ways it is refreshing how brutally honest she is, but it can be embarrassing.  If you are new to my blog or missed previous posts, you can click here for a complete list of No Filter Friday stories.

Today’s No Filter moment happened right after we moved to Arizona last spring. Chris teaches ROTC at a small, private university.  His office is small and upon moving here we quickly met everyone in the office.  The Colonel’s wife hosted a welcome party for Chris & another guy who arrived shortly after we did.  While we were visiting Skylar went up and started talking to Mike.

This is Mike.  Mike is Filipino, but he was born and raised in Hawaii. Mike is super nice & I must say that I truly love Mike’s wife, JoAnn.  I’m pretty sure that we were separated at birth!  Ok, so back to the story! Skylar started talking to Mike and then Mike got the funniest look on his face.  Not long after that, Mike started laughing! My first thought was “Oh boy! What did she say?”

Mike came over and told us about the following conversation.

Skylar: Hi there! I really LOVE your accent!

Mike:  Accent?  What accent is that?

Skylar (in a super sultry voice): Spanish!

(Let me just say that Mike has NO accent.  That is what makes this story even funnier.)

As you can imagine, I was super embarassed as this was our first time getting together with this group of people.  They were introduced to Skylar and her lack of filter right away!  I was so thankful that Mike was such a good sport and wasn’t offended at all.  In fact, we actually laugh about this story every time we see each other.  This past week we had a going away dinner for another couple in the detachment and while we were there I told Mike that I’d like to share this story and asked if that would be ok and if he would mind taking a picture with Skylar.  I was thrilled when he said yes!  As Skylar stood next to him, she said “I’m almost as tall as you and I’m only 13.”  Oh my!  Her thoughts continue to spill out!

I hope you all have a wonderful weekend!

Make it great!

JuJu

Friday Morning Funny From Skylar

Normally I would post a No Filter Friday today, but Hailey has been sick and I did not plan on posting this morning.  I have been up to my elbows in tissues and snot! She has gone through 4 boxes of kleenex in the last 48 hours.  Sorry, I’m sure that is not the visual you wanted this morning.  Anyhow, as I was getting Skylar ready for school this morning she said something that I knew would probably give you a good laugh.

Skylar likes to color on her hands while she is at school.  This morning as I was helping her wash the marker off I noticed that her nails were a bit long.  I told her that we needed to trim her nails up this weekend.  Skylar knows that in the spring, usually around Easter, I take the girls on a special date to get a manicure and pedicure.  It is our celebration of the weather getting warmer and being able to wear flip-flops.

About 10 minutes later she was getting dressed in our room as Chris and I were in the attached bathroom getting ready ourselves.  Skylar hollered to us “When I get my nails done can I get them painted black?”  I replied “Why do you want them to be black?”  To which she stated very matter of fact “I want to go GOTH!”

Chris and I started cracking up!  I didn’t even know she knew what goth was. So I asked her who she knew that was goth.  She said “Mom, don’t you know? Samantha from Danny Phantom (one of her favorite cartoons) is goth!  I think she is hilarious!”

Well there you go!  Oh the joys of children!  You gotta love ‘em!

Hope you have a great weekend!

JuJu

If you are new to the blog or missed any of the installments of No Filter Friday,  you can find a list of all past posts here.

Something You Don’t Want To Hear On A Plane!

Hello friends!  It’s time for another installment of No Filter Friday.  This is the time that I love to share things that the girls have said or done that have left us red-faced, laughing, and sometimes speechless.  One of my favorite parts of Skylar’s autism has been the total lack of “filter” that she possesses. In many ways it is refreshing how brutally honest she is, but it can be embarrassing.  If you are new to my blog or missed previous posts, you can click here for a complete list of No Filter Friday stories.

I’m going back in time, to when Skylar was in kindergarten, for today’s No Filter Friday story.  We were stationed in Dayton, Ohio and Chris had to take a class for work that was going to require him to travel.  The class was being offered in several different locations and he chose Phoenix so that the girls and I could go with him and visit my sister and her family while he was in class.

The last time Skylar had flown she was 3 1/2 and non-verbal.   Now, at the age of 6, she had been on the GFCF diet for almost 2 years and during that time we had seen an explosion in her language.  Like most parents that fly with young children we tried to keep the girls occupied on the plane as not to disturb other passengers. She didn’t talk a whole lot during the flight and seemed to be more interested in playing with the “bag of goodies” that I had packed to keep her entertained.

Shortly before landing the captain came over the speaker to announce that we would be making our initial descent into the Phoenix area.  Skylar has always been pretty straightforward in saying exactly what she is thinking.  She is very literal and if you tell her something she takes it exactly as you say it.  As we started to feel the plane descending, Chris leaned over and quietly said to her “Look out the window Skylar, we are starting to go down.”  In a louder voice than I had heard her use in a long time she yelled:

“OH NO!  WE ARE GOING DOWN!  WE ARE GOING DOWN!”

I blurted out a laugh and quickly said “Skylar, we are landing.  We are not going down.  We are landing!”  She then changed her wording and started saying, “We are landing!  We are landing!”  The people around us were totally snickering.  The guy behind us said with a laugh “Good thing we aren’t going down! I was worried!”

I believe this was when we first realized how careful we needed to be with how we worded things to Skylar.  It gave us a laugh and I’m pretty sure it got quite a few pulses racing on the plane!

Hope you all have a nice weekend!  Make it great!

JuJu

*If you missed it, yesterday I posted the story of Skylar’s regression into autism in pictures.  You can read that story here.*

Skylar’s Story-Part 1 (Her Regression in Pictures & a Few Words)

I get asked by a lot of people if we saw a regression in Skylar or if she had always shown delays in many areas.  My answer isn’t cut & dry.  Skylar had some motor delays and I believe those were due to the birth trauma she had.  She sat up right on schedule.  She didn’t crawl in a traditional sense.  The best way to describe her crawling was “scoot swimming”.  She pushed off with her back legs and pulled with her arms.  She looked like she was doing the breast stroke on the floor.  She didn’t walk until she was 15 months.  Even though her motor skills were somewhat delayed, her language developed early on and she said many clear words and 2-3 word combos.  She said: thank you, please, more milk, my ball, mommy, daddy, Becca, baby, grandma, etc.  The best way to describe the changes we saw in Skylar is to show you in pictures.

Skylar was an extremely happy baby!  She had great eye contact.

She also loved to snuggle and be held.

Doesn’t Chris look like a teenager in the picture below?

She was so bubbly and laughed all the time!  We used to joke that her personality was as crazy as her hair!

She would play in this playhouse for hours.  I loved listening to her talk and pretend to pour our dog Rex his favorite tea.

Then things started to change.  She was extremely unhappy and stopped using words.  She stopped smiling.

She lost all eye contact.

It is hard to explain the shift that took place in her.  The best way I can describe it is that she lost that “gleam” in her eyes!

While all the other kids were upstairs playing together with their new toys from Christmas, Skylar played by herself.  She played with this train for hours on end in my parent’s basement.  She would start & stop the train over & over & over.

No amount of hollering her name or waving things could get her to look at a camera.

She did not like to play with other children.  But she would play with my niece, Becca.

She seemed to be trapped in her own little world.  I so longed to know what she was thinking.  I just wished she could answer me:  “Are you sad?  Are you lonely?  Are you happy?  Are you confused?  Are you hurt?  What’s wrong?  Please talk to me!”

As years went by we saw improvement.  More hugs.

More smiles.

And improved eye contact.

It is tough for me to look at the pictures of Skylar’s regression.  However, as I look at these pictures, I see the tremendous progress she has made over the past 10 years & I am SO encouraged.  She has come such a long way!  She’s doing things that her diagnosing doctor said she would never do.  Here she is competing in her school spelling bee just a few weeks ago.

And singing the solo in her Christmas concert this year.

There are so many people who we know are part of the tremendous progress she has made, including this woman, whom I wrote about here.

And these people , who have never given up on her & have been with us EVERY step of the way.  We could not have gotten through this without our family!

And last, but certainly not least…YOU!  We are so thankful for all the support, love, encouragement and prayers that we have gotten from so many of you.

It’s been a long and tough 10 years, but I can’t wait to see all the things that this sweet girl is going to accomplish in the next 10!

Thanks for walking this road with us!

And for those of you who are just starting to walk this journey or are even a few years into it, my advice for you is this:  “Never, ever give up!  Don’t let anyone tell you what your child can or can’t do!  Also, pull out your camera and document your journey.  I am so glad that even during a lot of sad & stressful times, that I took pictures.  When I feel discouraged all I have to do is pull up these pictures and see how far we have come!

This is one big reason that I do Project Life.  I love documenting our every day and seeing her accomplishments and her progress.  You can read about what Project Life is here.

Make each day great!

JuJu

Fundraising…An Adaptive Bicycle for Skylar!

Ok, so I have been thinking a lot about this lately and figured I just need to put it out there.  All of you know that Skylar has autism (unless you are brand-new to this blog).  What a lot of people don’t know is that she also has epilepsy and hypotonia, which is low muscle tone.  She has always had issues with balance, being clumsy, and muscle strength.  She started receiving physical therapy for gross motor skills and occupational therapy for fine motor skills at the age of 3.

I don’t like to focus on what Skylar can NOT do, but it has always made me sad that she can’t ride a 2 wheeled bicycle.  Believe me when I say that we have worked & worked at helping her to achieve this goal.  She LOVED riding a tricycle and a bicycle with training wheels when she was younger, but as she has grown there isn’t a bike with training weels that will support her weight.  She has grown like crazy and weighs over 100 pounds now.

Last summer, I looked into getting Skylar an adaptive bike like the one pictured above.  I knew that it would help her muscles, be a great form of exercise, and bring her immense joy.  What I didn’t know was that they cost anywhere from $1,200 to $2,000 dollars for the bike that we need.  As I set out trying to figure out how we could save the money to get one, I quickly realized that it would take a long time to do that.

I’ve thought about several different ways to raise funds.  My mom is going to come in and do a jewelry show and donate her proceeds to our bike fund.  If you are interested in participating in the jewelry side of our fundraising click here to visit her webpage and her contact information is at the top of the page.  The jewelry she sells is beautiful and very reasonably priced!

I also really like the thought of people being able to donate a couple of dollars and in return getting something fun that they can use.  So, my thought is that I would also love to do a set of digital journal cards that can be used in Project Life albums or in any type of scrapbook, that people can buy and the proceeds would go to help Skylar get her bike.  So this is what I am looking for:

-someone who is digitally savvy that would be willing to donate their time & talent to design a set of journal cards that could be used for Project Life.

Do you know of anyone that could possibly do that?  Please consider forwarding this on to anyone you feel could help us with this.  Anyone willing to help can email me at: iamjujublog (at) yahoo (dot) com

It is our total desire for Skylar to lead a happy & productive life.  She has brought tremendous joy to our lives & to so many that she has come in contact with.

Thank you for sharing our story and for making a difference in our sweet girl’s life!

Make it great!

JuJu

To Skylar On Your 13th Birthday

Dear Skylar,

I can’t believe that you are 13 years old today!  It seems like just yesterday that the doctor placed you in my arms and now you are a teenager.  You and Hailey have been my greatest joys!  It has not been an easy road.  You have battled so much in your short 13 years of life.  And even though it has been hard, you have so much joy!

I know that as your mom it is my job to teach you and guide you.  But in the past 13 years, you have taught ME more than I could EVER teach you!  I can’t imagine my life without you.

You know what I love about you?

-I love that you sing almost everywhere you go!

-I love that you thank Jesus every time we see a beautiful sunset!

-I love that you want our family to adopt “all the children in all the orphanages so that they will have a family to be a part of.”

-I love that you get excited and clap your hands every time you receive a card in the mail.

-I love that you love your family so passionately!

-I love that you forgive so easily!  I heard you say recently “The Bible tells us to forgive, so I do it!”  If we could all just live that simply, the world would be a better place!

-I love that if anyone says “Ouch” you come running with a box of band-aids.

-I love that you are so honest!  Sometimes it is embarrassing, but I wouldn’t have it any other way!

-I love that you want to live with us forever because “you would miss us so much if you ever moved away.”

-I love that you still wave at me with a huge grin on your face when you see me after school every day.

-I love that you love to help the kids in your class that need help.

-I love that you love to write stories!

And….

I LOVE that you are my daughter!

If someone had told me 13 years ago that our road would be rough, that we would cry many tears, that life would be different than what we dreamed it would be…without a doubt, I would still choose you!

You have taught me patience, understanding, acceptance, forgiveness, and how to find joy in life every day!

I love you more than you’ll ever know!

Mom

*I was nominated for one of Babble’s Top Autism Spectrum Blogs.  I’m totally honored by this.  If you read my blog and you have found it helpful I would appreciate your vote.  I am currently #19.  You can click here and search for I Am JuJu, then click on the “I Like This” icon.  I believe you can only vote for one blog per computer/device. Thank you so much for your support!  I love sharing our journey with others and I truly hope that it brings hope and understanding regarding Autism.*