1 out of 5 diagnosed with autism is a girl! We promote autism awareness for girls.

To Those of You That Just Don’t “Get It” and to the Those of you that Do:

Special needs parents wear so many hats!  We also provide many services to our children that many people cannot fathom.  And, we do it with remarkable skills we did not know we possessed, until we needed to stand and deliver for our child.  Three cheers for those of us that completely comprehend this list!

Sometimes I feel like a:

Night Watchman – Late nights because our child does not sleep.

Gourmet Chef – Preparing Special Diets which may include several different meals for different family members.

Service Coordinator – Planning for a wide variety of therapists.

Chauffeur – How else would my child get to all those therapy appointments?

Researcher Extraordinaire!

Fearless Advocate – Because our child deserves it!

Cheer Leader – We celebrate EVERY victory large or small.  Believe us NOTHING is small.

We possess the following abilities or qualities:

Grace under fire (or not) when encountering annoying stares from others when out in public.

Gratitude for those that do “get it”.

Above and beyond nursing skills.

The patience of a Saint.

The bravery of a Warrior.

The heroics of an Army General.

The ability to persevere under excruciatingly difficult circumstances.

Last but not least, here are a few other things you should know. We gave up countless vacations, parties, social engagements  and dinners because our child would be uncomfortable or we could not find adequate care.  We love being social but not at the risk of our child’s safety or emotional well-being.  We get tired of constantly advocating for our child, but we cannot rest until our voices are heard!  Sometimes our faith is shaken, buried, hibernating but it always returns because every special needs parent is resilient!

So here’s to us, the Special Needs Parent!  Hip Hip Horray!  Hip Hip Horrray!  Hip Hip Horray!

(Please feel free to add anything I may have forgotten.)

 

 

 

 

 

 

The Marvelous Unisphere!

The Unisphere is located in Flushing Meadows Park in New York.  That’s Queens, NY for those of you that don’t know.  Queens is home to the most ethnically diverse population in the entire world!  It is also the home of the Unisphere, one of the world’s largest globes.  It stands 140 feet high and measure 120 feet in diameter.  Its inscription reads “Peace through understanding.”  I would like to see the marvelous icon of the 1964 World’s Fair bathed in pink and blue lights in honor of World Autism Awareness Day April 1st and April 2nd, 2012!  The Unisphere has the capacity to represent autism affecting families around the world!  Lets promote autism awareness together.  Please take to moment to respond to the following survey.

Thank you!

http://www.surveymonkey.com/s.aspx?sm=9AklK5gIPX2XpJeOR64BXg%3d%3d   

Unwritten

Today I am dedicating this song to all those affected by autism and their families.  To those that push the limits, to those that exceed expectations, to those that intuitively know – that to love a person challenged by autism, is to accept them exactly the way they are! Challenged, but not broken…struggling , but not defeated…perfect, just as they are!

Unwritten  – Natasha Bedingfield

I am unwritten, can’t read my mind, I’m undefined
I’m just beginning, the pen’s in my hand, ending unplanned

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your innovations
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

Oh, oh, oh

I break tradition, sometimes my tries, are outside the lines
We’ve been conditioned to not make mistakes, but I can’t live that way

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inner visions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
To the years where your book begins

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
To the years where your book begins
The rest is still unwritten

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inner visions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
To the years where your book begins

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
To the years where your book begins
The rest is still unwritten
The rest is still unwritten
The rest is still unwritten

Oh, yeah, yeah

The Outer Limits

Never limit yourself because of others’ limited imagination; never limit others because of your own limited imagination.
Mae Jemison, astronaut

Kate’s therapist, Amanda, has been working with markers and crayons with Kate for several months now.  Kate is very disinterested in writing or coloring.  She loves music and she enjoys typing on a keyboard, but somehow, she has not acquired an interest in writing or coloring.  I always believed that Kate just did not understand how wonderful coloring can be.  I don’t think she has made the connection between  having an idea in mind and watching it take shape through coloring.  

Amanda has been working on ideas that Kate enjoys such as animals and asking her to draw one.  One day Kate wrote the word FARM when asked to draw an animal!  I’m going to frame it!  I did not know she had the capacity to write.

On Friday night, I took out a blank birthday card for Amanda.  I handed Kate a red marker and told her it was a birthday card for Amanda.  She stared blankly at me and the card.  I asked Kate to write her name.  She studied the point on the marker for a moment and suddenly began to write her name unassisted!

K -A- T- E.-…Next, I asked her little sister to write her name on the card too.  She did, and she also drew a picture of herself wearing pigtails.  How precious.  I gave it to Amanda.  The look Amanda had on her face when she opened it was worth a thousand words.  Amanda consistently pushes Kate’s limits and she has stretched my imagination as to what Kate can accomplish.

Thanks to all the therapists that push the boundaries and encourage our kids to blossom!  Where would we be without you?  ( HAPPY BIRTHDAY AMANDA)


Spilled Juice….

Kate is busy watching her iPad during dinner.  This is very typical for her.  Her little sister “D” is enjoying her meal.  Glenn and I are having our dinner as well.  Suddenly, D’s juice spills.  Glenn yells out, “Oh noooooo!”  And then a small miracle happens…Kate picks up her napkin and attempts to clean up the spill!  For just a second, I saw Kate fully aware, ready to help!  How exciting!  “D” begins to cry.  Kate hides her eyes and starts to shut down.

Autism is a mighty beast.  It slows everything down to a snail’s pace.  You learn to really appreciate those small moments that most people take for granted.  A young girl notices that something spills, she responds quickly, offering help.  My soul feels like dancing – for just a moment.  Suddenly the moment is gone.

A younger child feels bad for spilling her juice, which causes her daddy to yell “Oh noooooo!”  She begins to cry.

And Kate hides her eyes and disappears.  All we can do is tell “D” don’t worry its just juice.  We quickly clean it up and pour her a new glass.  She stops crying.  And we wait, like we always do for Kate to reappear.  Autism is a mighty beast.

No Applause Required

The New Piano

My husband and I have wanted to buy our daughter, Kate a piano for quite some time.  The problem with autism is that it takes up so much time.  Time for special needs class, time to travel to and from class, time for therapy after school, time for special cooking for dinner (feeding issues), huge amounts of time for feeding, time for cajoling any verbal interaction I can get from Kate, bath time, and (whew!) time for bed!  After many many months we finally got that piano.  Kate has been taking music therapy classes for 3 years.  She can play the piano by ear.  One of her blessings and talents is perfect pitch.  So we just knew she would love, love, love a piano in the house.

My mom volunteered to entertain our two young daughters in Kate’s bedroom while the family surprise piano arrived.  The girls shouted with pure delight at their first glimpse of the piano in our living room.  They sat on the bench together and just banged on it for a few minutes.  Wow!  They actually sat and played together!  As awful as the banging sounds, it also sounds like the sweetest music ever played in our home.  Autism has made our family slow down to a crawl and appreciate things that many families miss.  Two young girls banging together on a piano, in sync.  No gentle sweet tones, no melody, no harmony, no pitch, no one to impress….and no applause required.

Autism Story Book was created to raise awareness of girls with autism. Families are invited to share their daughter’s story and post a photo. Each story is fascinating and unique as the girl herself. Some stories will make you laugh, others will make you cry, some will make you angry and others will inspire you. Girls with autism are intelligent, witty, fun-loving, free-spirited, talented, courageous and strong! And, so are the people that care for them. Come celebrate your daughter, talk about her victories, her battles, and those cute little quirks that make her special. Your daughter’s story may be the one that informs or inspires another family. Your daughter’s story may be the one that gives hope, when everything seems hopeless. Your family’s story may be the one that gives encouragement and support to a family that feels isolated. Please share your daughter’s story today!

Visit  www.autismstorybook.co  (NOT .com)