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

Posts tagged ‘autism awareness’

Campaign: Day 2

Whew!  Our video is complete and has been added to the campaign.  We may make some slight edits.  Oh well, nothing is ever perfect, right?  Anyway, the campaign is being successfully and enthusiastically shared by many.

Its time to raise autism awareness and some funding for such a great cause.



“C” is for Cookie…and

We took the kids to  Beaches, Sandy Bay resort in Jamaica during the school break.  We go EVERY year.  The resort is small and the staff does an excellent job of handling the kids.  Special needs kids are welcome!   We have not put Kate into camp.  We vacation there for the two small pools and the magnificent, never-too-crowded, pure-glistening-white, sandy beach.  Combined with the turquoise water, it makes for quite a dazling sensory experience.

When we tire from Sandy Bay resort, we take the five minute FREE bus ride to Beaches Negril resort.  It is much larger and can be noisy.  But, NOTHING beats the Lazy River and the Water Slide.  My two girls LOVE it.

As a special treat, we decided to purchase a character “tuck in” for the girls.  Last year we choose Zoey.  She was a BIG hit!  This year we decided to have Cookie Monster come to the room.  Wow!  Pure majic as Cookie Monster entered the room.  You can tell by the smile on Kate’s face.  She really loved it.  She laughed, danced, sang “C” is for Cookie, gave a few high-fives, jumped on the bed, gave out kisses and posed for the camera.

No melt downs.  No hiding during photos.  Just 2 happy girls (plus 2 happy parents).  Isn’t that what the family vacation is all about?


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

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!