Welcome to Stephanie's House ... and our first LIFE home for women with autism
“Autism” – hearing that 6 letter word – a diagnosis for our daughter, Stephanie, 22 years ago, was nothing less than a dagger in my heart. We did not understand its complexity. Or how severely it had affected her. Back then there was no GOOGLE to click for research. How were we to know that she would never speak a sentence. Be able to tell you her name. Bathe herself. Fix herself a meal, have a date, go to college, get married or ever be left alone for more than a second. She was merely an adorable 2-year-old who suddenly lost her ability to speak, look at us or parallel play. Autism?
The grief was overwhelming, especially given that her older brother, Ryan, was battling serious congenital heart and bowel defects and was a regular patient at CHOP. We were young parents with no family to help us.
Transplants from Ohio, trying to care for a chronically ill son, pay for his astronomical medical bills, going it pretty much alone and now we were adding a severely autistic daughter to the mix.
There were no books to read. No step by steps on how to handle her. No caveats about “what to expect when you got what you were NOT expecting.” We set out simply enough to give life, the second time around, to a child with a perfect heart and ended up being blessed with a forever child who teaches our hearts everyday just how perfect life can be.
Two decades later, Stephanie has graduated from the Devereux Kanner Center in West Chester and has been home for a year with us. I now am relishing in the blessings of autism. I now know that our daughter was chosen for a higher purpose. Getting to this place, however, has not been easy. I had to get over myself and the hardest thing for me was letting go of the guilt. What did I do wrong while I was pregnant? I was a health fanatic. It was one thing to have my first child arrive with about 50 health issues that would require three open heart surgeries and more and another to have the next one diagnosed with severe autism. I had to forgive myself and to this day, honestly, I am not sure that I have.
And we have since learned that the diagnosis comes with more than just a 6 letter word. Your world will never be the same. EVER. It will be a succession of high highs and low lows. Days when you are scraping poop off the bedroom walls and crying until you are dry and other days when you begin to notice that in that poop art there may be some artistic ability and you laugh. Outloud!
Days when the rejection from everyone in the neighborhood being invited to a birthday party but your kids makes you more depressed than you ever dreamed possible to days when out of the blue you hear your 15-year-old say “mommy” as clear as a bell for the first time and the happiness is so bright you squint through your tears.
You will find joy in what your child CAN do, learn to pick your battles, of which there will be many, and be gloriously relieved of the typical worries of your child having a boyfriend, driving a car, getting their heart broken, fighting about curfews, college and getting a job. You trade all of this for battling for funding, respite care, IEP updates and extended school years.
Stephanie is oblivious to all of this life hullaballoo. She knows what makes her happy and that is a warm bath, Disney characters and butterfly kisses from her mom. She knows not of greed, murder, war, or global warming. She cries when we leave her. She lights up like a summer sun when we return. She loves Disney dolls, eating frosting out of can and sneaking poptarts.
Autism – that 6 letter word that I once thought would kill me has become the very passion that drives my soul. From this challenge comes my purpose in life.
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Chester Springs, PA ...
What began 9 years ago as a mother's dream with zero dollars has become a reality!
Stephanie's House is a 501c3 non-profit organization. It is our mission to raise the funds necessary to establish and maintain LIFE homes for adults with autism. It is also our intention to find our way through this new process and to assist other families in following our lead.
This is more than just a house ... it is an independent LIFE option, for both the families who need to place an adult child with higher functioning disabilities and for that adult who seeks a life filled with love, care, joy and dignity.
It has been a long road of fund raising, non-stop road blocks, meetings, lawyer fees, paperwork and prayer.
But, WE did it! I could not do it alone. Her stepdad, Andy, has been by my side the entire time, along with hundreds of volunteers and friends who have donated a ton of items for our annual Autism Shops events.
In October of 2013, we purchased our first home, which also happened to be Stephanie's childhood home. Since that time, the home has been full renovated and it now houses three special needs adults with autism.
It took us close to 10 months to complete everything from three new bathrooms, a complete facelift on the exterior, hardwood floors replacing carpet and the entire interior getting fresh paint colors.
For more information about my charity, please visit our website at www.stephanieshouse.org.
In 2009 I started my own 501c3 non profit, Stephanie’s House, Inc. It is our mission to establish and support life homes for adults with autism. Because, as expected, there is nothing out there and one day we shall pass and who will care for our kids? Funding is tight. These adults need constant care in a home that is filled with love, joy, dignity and purpose. We are breaking some ground, creating some new rules and forging a path for those 1 in 50 parents who will need to care for an adult with autism.
Soon enough, at a time when I should be moving my daughter out of a college dorm and into her first apartment, I will instead be moving her and two others into their own life home. Conceived in love. Purchased in love. A legacy of love.