Stephanie Louise

May 25, 2011 Prom night at the Devereux Kanner Center

Who doesn’t relish that first word? That first time your child looks you in the eye and says “momma.”

Been waiting 19 years for the word to come from the lips of my daughter and it finally came. Last night. As I headed up the steps at Steph’s group home to get her and the three other young ladies ready for their prom. I heard her – kind of a squeal, but as plain as rain.

“Mommy! Mommy!” Followed by a huge squeeze around my neck. My 6 foot tall 19-year-old daughter, spewing her joy in every direction with the energy of TAZ.

All freshly scrubbed, the girls were ready for their gowns, lovingly chosen, fitted and tailored by the kindess of our dear new friend, Deborah VanCleve Phelps, owner of the beautiful VanCleve Collections in Paoli, PA. It isn’t every day that these girls get any kind of new dresses, let alone the kind of couture that one would expect to see at a high class event. Oh, AND matching handbags!! So, while the rest of the young gals at the event arrived in still lovely hand me downs and Goodwill finds, the girls of Roundhouse were the talk of the night! The light in the room.

This night meant so much to me and Andy! It was a chance to feel some sense of enjoying the typical things that most take for granted. The only differences – well, this prom is held in a rundown school cafeteria. The decorations were from Party City. The kids wore handmade paper flower and drinking straw necklaces strung on yarn. The food was a piece of overcooked fried chicken,green beans and cornbread. The DJ was loud and the music just way too hyper for these kids who bounced … and bounced … and swayed and bounced – off the walls – for two hours. Energizer bunnies on crack! The time of their lives. Boys in shirts and pants that did not match. Girls in dresses with t-shirts and sports bras underneath lest be too revealing. A mish mash of misfits and God bless every one!

It was nothing and everything I have ever wanted for Stephanie. Just pure joy!

http://www.nytimes.com/ref/health/healthguide/esn-autism-reporters.html?ref=health

Stephanie’s House: “Building a beautiful life for women with autism.  One house at a time.” – www.stephanieshouse.org

By: Danielle Guldin

It’s impossible to imagine the challenges families with autistic loved ones face, especially to those of us who have not been exposed to their stories and struggles.  The good news is that due to amazing people like Marie Cisterino Ludwig, founder of the non-profit charity, Stephanie’s House, more and more of these stories are ending with lightening bolts of hope!  Hooray!

Marie’s daughter, Stephanie, was born a happy, healthy child who developed flawlessly until the age of 2.  Marie reports that after a series of 3 MMR (measles, mumps, rubella) shots, Stephanie suddenly “shut down.”  She stopped responding to normal stimuli, no longer made eye contact, completely lost her “baby babble,” and began twitching and hitting her head.  In 1994, Stephanie was diagnosed with severe autism.  At that time, only 1 in 1,000 children were diagnosed with autism.  Shockingly, that ratio has skyrocketed (like, drastically) to the present-day ration of about 1 in 50 children.  Clearly, autism is a condition which is growing in prevalence and affecting more families daily.

The turning point:
Stephanie’s level of autism was so severe, that as she grew, she quickly became a danger to herself and other family members.  After years of fighting for help and services, Marie made the extraordinarily difficult decision to put Stephanie in a residential care community for autistic children.  There, Stephanie would receive 24/7 care and attention with the support of an expertly trained staff and other children just like her.  Happily, this turned out to be a miraculous turning point in Stephanie’s life!

Marie calls Stephanie’s teachers her “angels,” because they were able to get Stephanie under control and teach her love and patience, while also bringing her communication and life skills up to their fullest potential!  In this way, Stephanie, now 18, has been able to lead the most normal life possible.  She loves visiting farms, going shopping, and is even able to visit home on the weekends!  How wonderful!

Now here’s the kicker:
Stephanie is secure, cared for 24/7, and has learned to function to her fullest potential in her residential care community, but unfortunately, she can neither live there forever, nor live independently without supervision.  In fact, when children reach the age of 21, they “age out” of the residential care system completely, and to this date, there is no system in place that guarantees any continuing care.  For the thousands of adult, and soon-to-be-adult-children, like Stephanie, who cannot speak, use the bathroom, cut food, and need constant supervision, this fact is both disheartening and (in my opinion) absolutely absurd.  Consequently, thousands of parents are being forced to ask the terrifying question no parent should have to ask, “what will happen to my adult child when I pass away?”

The plan:
As the universe would have it, Marie (beautifully) believes in a life plan without accidents.  She is confident that Stephanie chose her to be her mother to do something positive with the hand they were dealt.  Marie knows that no adult wants to be dependent for life, and so, because she is a brilliant parent and person, Marie has begun the revolutionary initiative called, Stephanie’s House. Stephanie’s House is a registered 501(c)(3) non-profit dedicated to creating the first ever L.I.F.E house for adult women with autism.

L.I.F.E. stands for “love inspired family environment,” and it will be the first adult live-in facility with the intent to debunk the stigma of the “group home.”  The hope is that its residents will be able to spend the rest of their lives there.  The women will cultivate adulthoods that are as independent and dignified as possible, developing senses of purpose, as well as friends and social lives.  Ideally, they even hope to grow food and flowers to be able to sell at local markets, allowing the women to earn a bit their own money.  AWESOME!  Furthermore, Marie hopes that Stephanie’s House will inspire more L.I.F.E. homes across the country.

The purpose:
Marie began Stephanie’s House on May 22, 2009, Stephanie’s 17th birthday, and by 2013, she hopes to raise $300,000 towards the ideal L.I.F.E. home for Stephanie and 3 other women.  By this point you may be asking (e-hem, begging) the question, “WHAT CAN I DO TO HELP?!”  The answer? SHOP!!!  SHOP, SHOP, SHOP!! SHOP LIKE YOU NEVER SHOPPED BEFORE!!  But make sure you do it at the link provided above!  (click on the title of this article)

As aforementioned in the (riveting) introduction to this piece, you can shop for coveted high-end bags, cosmetics, jewelry, housewares, etc, all donated by the FABULOUS vendors at QVC, at prices that will blow your mind!!  100% of the profits go directly to Stephanie’s House, AND since it’s a registered 501(c)(3) non-profit, all of your purchases are tax-deductable! (OMG! OMG!)  I know…it’s amazing!

During the 2nd annual “Autism Shops” benefit on November 19th and 20th alone, Stephanie’s House raised over $45,000!  Unbelievable!  Please help Marie raise the projected goal of $60,000 by January 1, 2011, by purchasing gorgeous gifts for your family and friends (and even yourself?) at the online after-sale this holiday season. Not only will you be giving gifts guaranteed to provoke maniacal happiness, but you’ll also be giving the invaluable gift of stability, security, and peace of mind to the future women of Stephanie’s House, and all other L.I.F.E. house initiatives to follow.

Until next time, many cheers and much love!

xo,

Danielle