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

Posts tagged ‘Autism Speaks’

Light the White House PINK and BLUE for World Autism Awareness Day April 2, 2012!

http://www.thepetitionsite.com/1/light-the-white-house-pink-and-blue-for-world-autism-awareness-day-on-april-2nd-2012/

Let’s urge the President to light the White House Pink and Blue!   Please sign the petition above and feel free to leave a comment.

Dear Mr. President,

Please show your support for the millions of individuals affected by autism around the world by lighting your home in PINK and BLUE for Autism Awareness Day, April 2, 2012.

Currently, the educational requirements of many individuals with Autism Spectrum Disorder are not being met. Many special needs teachers are not being properly educated in methods and techniques that can best enhance communication skills and independence while promoting individuality.

Sadly, restraint, seclusion, and bullying are still taking place in many schools.

We seek your support in acting as a beacon in promoting autism awareness for all! It would mean so much to our community to know that we have your support.

Thank you.Image

Imitation

When Kate was a baby, she really enjoyed playing by herself.  She did not engage in games such as Peek-a-boo.  She did not follow my gaze.  Kate learned to make eye contact, respond to her name, and point with the help of Early Intervention.  There were so many skills that come so easily to many children  that she had to work hard at to learn.  Today she discovered another skill!

Kate was eating yogurt this morning for breakfast, while watching a video.  Kate seems to eat more and have less problem with sensory issues when she watches something while she is eating.  I really enjoy the summer because Kate can watch sailboats or watch birds fly by and she often does not need a video to help her eat.  When Kate finished her yogurt she had some on her lips.  I asked Kate to lick her lips.   Kate proceeded to give me an awkward smile.  (Smiling is another issue for another time.)

I said, “Kate, watch mommy.”  I licked my lips and she imitated me!  Fortunately for Kate, once she acquires a skill set she does not lose it.  It was just the first step, but it was a big one.  I decided to try imitation with Kate again.  An hour later I asked Kate to tap her head, touch her nose, put her hands in the air and give me a high-five.  She imitated each step.  Great!  So far 2012 is looking good.

What skill is your child working on in 2012?

Holiday Traditions… Modified or Tossed?

As a young girl I always looked forward to Christmas.  The entire family trimming the tree, the occasional Christmas Caroler (does anyone do that anymore?), the giving and receiving of gifts, getting Christmas cards in the mail (no internet back then) great food, great company and the displays of lights around the neighorhood.  What I did not realize then, was that all the little things become family tradition.

Coming from an Italian family, we ALWAYS had homemade lasagna.  Cooking the sauce takes two days and puttting it all together takes time as well.  Cooking and comraderie in the kitchen.  We all participated, we all sampled as we cooked, and in the end we all enjoyed lasagna as the main event!  Antipasto, meats, cheese, salads and pastries always seemed better the next day.  Left overs are not just expected its a requirement.

My husbands family had other traditions.  His mother insisted on trimming the tree by herself.  And, she insisted on cooking by herself.  She made Christmas stockings.  Everyone in the family has one, and we are expected to use them.  She bakes Christmas cookies and she begins right after Thanksgiving, typically offering one month old stale cookies on a Holiday.  Crab dip (cream cheese, salsa and crab over it), carrot soup, ham string beans and cranberry sauce.  And, when there are no leftovers, she planned the meal exactly right!

Autism has the capacity to dramatically alter expectations and family traditions.  The sensory issues around food, scents, noise, and people all take its toll on family traditions.  Determined not to keep my daughter as a shut-in, I bring her too many places.  But, the Holiday expectations at my in-laws has started to take its toll.

In our home, Kate can come and go from the table as she pleases.  This way she can escape when the noise and scents become too much overload for her sensitive system to take.   In our kitchen, I can make her whatever familiar foods she wants to eat.  In our home her autism is welcome and she is comfortably surrounded by friends and family.

The obligatory “Christmas with the In-Laws” is fine for typical children.  But, our Kate is far from typical.  She needs space for stimming.  She needs a variety of food choices.  She needs a quiet space to go off to and an open seat at the table to go to when she wants to see her family.

I’ve offered to host all the holiday dinners.  I’ve even offered to just give-up my kitchen so his mom can create whatever dishes traditional dishes she would like to serve.  But, it all falls on deaf ears.  One year I was so frustrated that I put my foot down, there will be no more holiday dinners with the in-laws!  If Kate is not comfortable, we are not going!  We were invited to go to the in-laws house to exchange gifts with one of my husbands’s three siblings and her family.  I thought we would have a 2 hour visit and perhaps see the tree at Rockefeller Center, NYC (maybe order a pizza).  BUT NO!  His mom invited my husband’s unmarried brother from California as a surprise guest!  And, she made her traditional “Christmas Dinner”.  DAMN IT!  I was completely unprepared!  I had no special foods for Kate, and no escape plan in sight.  Just grin and bear it.

Our other daughter “D” has the privelege of sitting in between me and my mother-in-law (Nana).  A stickler for manners, she is always quick to criticize and correct my child.  When “D” said I don’t want creamed carrot soup,  Nana insisted she try it.  “D”, six years old, said “I don’t like this soup Nana.” Nana said, “That’s rude.  Say I don’t care for any thank you.”  My daughter was not happy being corrected at the table in front of her family.  And, she remained quiet for the rest of the meal.  I was not happy, but not about to add to the stress .  Kate went upstairs to get away from the meal.  I wished I could just go up there with her.  (If only)

As the meal ended, I went upstairs in search of Kate.  Once I found her I asked her to come downstairs with me.  She was walking on the stairs unassisted, slipped landed on her butt with a loud crash and slid down the remaining four stairs on her back!  She began to scream.  Kate’s father ran to get ice and I held Kate.  No one else came to help!  His family continued to converse as if nothing had happened.  I was boiling mad!  After five minutes of ice I made the decision that it was time to pack up my family and leave.  We left.

I promised myself that our family would find a way to celebrate the holidays in a way that includes Kate.  I know there is a way to modify what we can keep and toss out what is too challenging for her.  Combining traditions, catering to a frustrated old woman that holds on to what worked best  for her in the past is out!  Starting new, inclusive, healthy traditions that support family values is in!

I’m open for suggestions.  How do you keep it all together during the holidays!  What works for you?  What makes you crazy?  Is there anything you do that reduces your stress?  Please let me know.

Thank You!

Three Cheers for the Special Needs Parent

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   

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)


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.