Changes, introductions and holidays

I have been taking some time "off" from my site here and trying to decide what to do with it, it was my vision to use the site to kind of "coach" people who want to build a dream... but then I love writing about fun things to do with children... and then I thought maybe I would also use it to write about inspirational families... so that's what I am doing, all of the above and with that in mind...

A few months ago I spent a wonderful weekend in Philly for Bloggy Boot Camp and I met a bunch of special women some of whose blogs I have been reading for some time. It was great to meet so many women with such diverse backgrounds who loved to share their stories. I particularly enjoyed meeting women whose lives were similar to mine, thus the introduction to Sunday..



This week marks the beginning of the holiday season.  In the coming days many will celebrate Thanksgiving.  In December families will come together for Hanukkah, Christmas, or Kwanzaa.  Each holiday involves its own unique celebrations and customs influenced both by family and culture.

In our home the holidays are influenced most by Autism.

If you visit our home you will not find a large Christmas tree in the living room lovingly adorned with ornaments passed down from my mom's tree.  There will be no lavish spread of food because the boys refuse to eat anything other than their normal day to day fare of grilled cheese sandwiches and homemade chocolate chip cookies.  The fireplace is cold and still on Christmas Eve because setting one is too dangerous around the boys.  Similarly, you will not find us loading up the car with presents and suitcases for a trek to share the joy of the holidays with our families.

Because it seems autism is not something they want their holiday to include.

Every year I go through the varopis stages of grief over the fact that my family chooses to not include my boys in their holiday plans. 

Shock & Disbelief:  
Why wouldn't grandparents want to spend the holidays with their grandchildren?  Even if said grandchildren  prefer playing with wrapping paper, long colorful ribbons, and loud obnoxious toys over sitting quietly in Grandma's lap while she reads them 'Twas the Night Before Christmas?  Christmas is supposed to be about the children and celebrating with them the magic and beauty of the holidays.  Why would grandparents and family choose to miss out on that?

Anger & Bargaining:
When the boys' grandparents choose to spend their holidays with their other grandchildren who do not have autism I am left feeling nothing but anger.  In some ways I am comforted in knowing that the boys do not know nor care why their grandparents are not visiting with us.  But I do, and it burns me up!

In previous years I would bend over backwards to invite family to celebrate with us.  I would plan out elaborate menus and wake up at 4 am to start the turkey in hopes of getting a couple hours in the kitchen before the boys woke up.  Family would come, eat, stay maybe an hour and then leave immediately following dessert.  I stopped trying to cater to their needs of my extended family after that.

Depression, Reflection, & Loneliness:
This stage seems to be where I spend most of my time during the holiday season.

I mostly feel lonely and a bit sad for family and all they are missing out on when it comes to the boys and how quickly they are growing up. 

I miss my mom something fierce too.  She was was the best damn Nana this world ever saw.  She was also an amazing mother and friend.  Before her death in 2004 you would find her spending every weekend, every holiday, and all her vacation time visiting her grandchildren and having fun with them.  I mourn the fact that she is not here now to enjoy her grandsons like I know she would have wanted.

Acceptance & Hope:
Eventually (typically somewhere around December 24th) I make peace with the choices my family has made in how and with whom they choose to celebrate the holidays. 

I focus on making the most of Christmas with my amazing husband and the boys. Mike and I sip eggnog, play Christmas music much too loud (which the boys love!), turn on the outside Christmas lights, break out the Scrabble board, and later we turn on The Grinch Who Stole Christmas and A Charlie Brown Christmas Special and we enjoy our grilled cheese sandwiches and chocolate chip cookies together.  Just the way a family should at the holidays.

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Autism may mean my boys are different than most and that may mean that our holiday celebrations are a bit out of the ordinary as well.  But, ours is no less filled with love, a sense of togetherness and magic.

And if someone isn't up for celebrating the holidays with two boys who embrace those holidays full force and without abandon....then its nothing more than their loss.

Sunday is the frazzled mom raising two boys on the severe end of the Autism spectrum while living to laugh and blog about it at Adventures in Extreme Parenthood.  You can also find Sunday tweeting her Banshee heart out on Twitter at @ExtremeParnthood and on Facebook by searching for her name: Sunday Stilwell.

What a "Special" Woman the world has lost.

Last week we lost one of the greatest women I believe this country has ever known, Eunice Kennedy Shiver. I think it serendipitous that her mother Rose Kennedy was born on July 22 the same day as me and she on July 10th the same day as my daughter Sarah. I believe Eunice and Rose had a special mother-daughter relationship. Rose Kennedy instilled a belief in family, faith, tradition and community involvement in her children which was passed on to Eunice and her to her own children.

For those of you who do not know who Eunice Kennedy Shriver was she was the fifth of nine children born to Rose and Joseph Kennedy, sister to President John F Kennedy. In May of 1953 Eunice married Sargent Shriver and they had five children.

Eunice grew up like Sarah with a disabled sister, Rosemary, and was influenced to change the world due to Rosemary’s disability. In the 1960’s she co-founded Special Olympics, so that all children could play. A motto I have shared through my work.

I had the pleasure of meeting Mrs. Shriver several times, as her son Mark became a member of our Board of Director’s for Hadley’s Park, and invited her to several events. I can remember one event in particular which was for Mark, who was running for Congress at the time, when she shared the story with me; a story most people don’t know, I’m not even sure if Mark knew this. But Mrs. Shriver had told me that when she was thinking of starting Special Olympics, she was contemplating starting an organization to build fully inclusive playgrounds. I thought how serendipitous, that she thought to do this in the 1960’s and I had gone to seek help from her son in 1996 with the same dream. I am glad that I could share this vision with her and carry it out to help improve the lives of children.

God Bless you Eunice, God has a great angel among him now!

“You are the stars and the world is watching you,
By your presence you send a message to
Every village, every city, every nation
A message of hope, A message of victory.”
“The right to play on any playing field?
You have earned it.
The right to study at any school?
You have earned it.
The right to hold a job?
You have earned it
The right to be anyone’s neighbor?
You have earned it.”
Eunice Kennedy Shriver 1987 Special Olympics World Games, South Bend, Indiana

True colors of friendship are beautiful like a rainbow

In the spirit of International Friendship day which I missed last week, I would like to thank each of you for becoming a friend of mine and for letting me share my colors of the rainbow with you!


You with the sad eyes
Don't be discouraged
Oh I realize
It's hard to take courage
In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small

But I see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show
Your true colors
True colors are beautiful Like a rainbow

Show me a smile then
Don't be unhappy, can't remember
When I last saw you laughing
If this world makes you crazy
And you've taken all you can bear
You call me up
Because you know I'll be there

And I'll see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show
Your true colors
True colors are beautiful
Like a rainbow

In the spirit of friendship I would like to ask if you might help my friends at Shane's Inspiration with their annual 5/10K Walk and Roll Event. If you are in the LA area please join the cast of The Witches of Waverly Place Sunday, August 30th at 7:00am at Shane's Inspiration in Griffith Park. Even if you are not in LA if you would be so kind to donate to this wonderful organization what you can to support Shane's Inspiration's mission to create inclusive playgrounds and programs for children of ALL abilities! Thank you my friends!

Wordless Wednesday, Welcomes you to Holland..

I have often used this short story when speaking about the importance of play for all children, so for those of you who I have not had the honor of sharing it with for you “Welcome to Holland”.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

Some kids dream about flying while other just kids dream of playing at the park

Some say “necessity is the mother of all inventions,” well that became evident to me one spring day in early 1996 when I brought my then 4 year old and 7 year old daughters to play at a local park. We were very excited to finally get out of the house from the winter doldrums and get some fresh air at the playground. My older daughter was thrilled to have a place to run around and I was just thrilled to get outside after winter.

When we got to the playground it was the usual ritual of letting my older daughter out of the car and having her bolt like lightening to the playground area, and for me, not so fast. I had to lift the wheelchair out of the back of the station wagon and then put my 4 year old daughter into it. When that 5 minute ordeal was over, we were off but almost immediately we were stopped by a timber barricade which seemed to be placed there to keep in mulch but very obviously was a problem for us. So, as usual supermom that I am, picked up both the wheelchair and my daughter over the timbers and then thought we were off. But again, not so easy to push a wheelchair over mulch, think of trying to drive over sand; it’s not so easy, is it?

We then caught up with my older daughter who was running from each piece of equipment to the next. When I finally told her to “hold up.” She exclaimed she wanted us to “come up” on the equipment. Come up? Now how exactly was that supposed to happen? Oh, I know the wheelchair was supposed to sprout wings. Well, that is what it would have taken to get her up on the equipment. And let’s say that actually could have happened, then what? Sit up there and watch from the tower while her sister ran around and around. This was no fun!

So my younger daughter and I went over to a seating area where I sat and we both watched my older daughter run around. At one point my older daughter came over to us a little frustrated but then realized when she came over to us that my younger daughter had a tear dripping down her face. That was it! That was the moment I went from a stay at home mom to a mom on a mission! Why was there not anything my children could do together? Why was there not anything I could do with my younger daughter while my older daughter played? This was going to change, it had to!

I went home and started drawing (coming from a design background, drawing was second nature to me) and visualizing what a perfect playground would look like. When my husband came home I told him of the adventures of our day and how I was now out to change the world. I had a dream; a goal- “to build a unique park where all children could play together with or without disabilities.” A park where through playing, the concepts would help all children socially, and cognitively, as well as physically. Equally as important, a place for children with disabilities to play with their own siblings and peers.

The ideas and visions of this playground resulted in the development of a theme-play park. Often a playground is considered strictly physical. Although, when the physical play is mastered, the appeal of the playground can lead to boredom. Theme-play offers a challenge to the child’s imagination and encourages children to play for extended periods of time.

My dream playground encompassed a Transportation Area, Pirate Ship, Frontier Village, Castle, Dinosaurs, and Main Street themes. In the design, accessibility was ensured through the implementation of the ADA requirements, CPSC and ASTM guidelines; those are playground rules.

By combining all of these elements in the design and equipment, my dream would create the best playground for all children to play!