What a year it has been ...
This has been a challenging year for all of us, especially as a home for adults with autism.
January began with two major projects for our home - removal of a HUGE former holiday tree of a former owner - a giant pine tree. An expense we knew was coming, but not at the same time the heater/ac system died. Our budget was altered by $15,000 before the middle of January. We are ever grateful to everyone who supported our annual fund raisers because we needed a lot more to cover 2020.
In March, the pandemic had a deep impact on our home. One of our residents, and the commander of home maintenance and safety, had to move to a place of 110% isolation and safety because of underlying heart disease. Our board had to make the decision to move Stephanie back home to us because our other resident chose to continue working in a heavily congested environment. Our caregivers were not able to assure the safety of themselves and Stephanie and, as such, we were left with no caregivers for over 5 months.
Stephanie was able to move back home very part time in September. Safety is a number one priority for our team, for both Stephanie and our other resident. While it will always be our goal to have three women in the house, until the pandemic is under control, this is not possible. In place, we have a very strict protocol that must be followed including masks, hand washing, hand sanitizer, bleach clean and temperature monitoring. Who knew that any of us, let alone a charity home, would face these tough circumstances.
We have completed our annual Angel Box event and we thank the 200 + supporters across the country for their support. We will see another year in this house.
We send our thanks to the following companies or individuals who contributed to the 2020 Angel Boxes : Mr. Food, Markcharles Misilli, Tony Notaro, Chaz Dean and WEN, Joe and Chris Campanelli, Dr. Denese, First Aid Beauty, Melanie Lyon and Spray-N-Grow, Liberty Orchards, Kim Gravel and Belle Beauty, Mally Roncal for Mally Beauty, Farmer Jon's Popcorn, David's Cookies, Gentile-Lichter for the tons of great kitchen items, and countless friends of Stephanie's House who donate all kinds of things.
We wish everyone a wonderful year ahead.
Marie Louise and Andy Ludwig
Founders and parents
Sad farewells and loving hellos
Last fall we sent two of our beloved furbabies, Lucie and Sweetie, 15 year old schnauzer sisters, across the rainbow bridge ... it was a deep sadness for all of us.
In January, we welcomed Gracie to our Stephanie's House family. Gracie is a rescue who came from a puppy mill in Tennessee ... she has been a mommy three times, but she is now spayed and happy with her new mom, our sweet Lydia.
Gracie is a black schnauzer poodle mix. We love her already.
A mother's story ...
Written in 2013
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, as Stephanie prepares to graduate from 14 years as a resident at the Devereux Kanner Center in West Chester, I 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 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. 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.