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

Quit It!

I brought Kate to her usual therapy session after school.  Three hours of intense ABA.  Kate did not greet her therapist as she entered the room.

The  therapist gave an enthusiastic,  “HI KATE! ”  Kate said “K”.

“HI KATE!”

“K”

Determined to get a HI from Kate, the therapist contined, “HI KATE!”

“K”

“HI Kate!”

“K”

This went back and forth for many, many rounds.  Until finally…..

The therapist said, “HI KATE!!!!!!” while she poked Kate’s belly.

Kate yelled, “QUIT IT!”  And she walked away.

Sometimes our kids just want to be left alone.  And they have a hard time saying that they are tired, or that have had their fill of the same scripted, polite greetings.  Our kids have to dig deep sometimes and come up with a script to use that fits the situation.  “QUIT IT!” she said.  And I feel proud of her.  Was it rude? Yes.  But so is an adult getting on eye-level and repeating herself over and over.

I am waiting for the day that Kate can say, ” I am here at therapy and I would rather be outside playing on this warm, sunny spring day.  So, leave me alone.  Lets get the work done so I can get to the park.”  But, for now, all Kate can say is, “Quit it!”

And I know exactly which video she got that phrase from!  Its amazing how closely parents of autistic kids pay attention to their children.  Otherwise, when our kids use their scripts we have no idea what their intentions are, where they got it from.  It helps to know where the scripts originate from, out of context they have less meaning.  And it takes the work of a great detective to track these scripts down sometimes.  My script senses are usually on high alert.  Ask the proud mom of a “typical” kid what their child’s favorite script is and how many times they use it in a day.  And you’ll hear “Huh?”

Scripting….its so common for our verbal kids on the spectrum.  A true example of how their brains are set up differently to learn.

Script senses….an acquired sense, that only the parent of a child with ASD masters.  And, oh how many other skills I’ve had to acquire to deal with autism.

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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.

 

The Cavalry

 

This is day one of the thirty day countdown to Autism Awareness Month which begins on April 1st.

When my daughter, Kate was first diagnosed with autism.  The diagnosis seemed so big.  No it seemed ENORMOUS and OVERWHELMING.  My mind was racing.  Where do I go?  What can I do?  What kind of a life will she have? How can I help her?  Well, the truth is that I can help her.  I can help her a lot.  But, I need support.  We all do.  Its just that Autism is so big, I need a lot of support.  In fact, I need a cavalry.  An army of people was assembled to help her with everything from feeding to learning how to independently and successfully use an ipad (and everything in between). How fortunate Kate is to have all of these supports.  But, what about the rest of the people affected by the challenges of autism in our community?  I know Kate is not alone.  The statistics show autism growing at an alarming rate.  Families have long been working with their children independently, using their own resources.  Its time for us to unite and create our own advocacy.  It time to be our own cavalry.  Come join us in celebration as we light the Unisphere in Flushing Meadows Park to advocate for the autism community.

“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?

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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?

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!