Introducing Stephanie Louise Kier!
At first glance, you would never know Stephanie is autistic. At almost 6 feet tall, she appears to be just like any other 20-year-old, vibrant, happy and on the go. But ask her a question … she might answer, typically by saying something that makes sense only to those who know her well. “You be a doe.” “No cookies. No soda. No frosting.” Or she might come up to you, turn around and bend over slightly so you can “scratch her fox (back).” She loves Disney movies, swimming with her dad, string cheese, salad and cookies. Aside from Disneyworld, her very favorite thing to do is surf the web and watch YouTube Disney snippets. She sleeps only when medicated, needs prompting to do basically everything, and she cannot physically care for herself at all. She does not know her address, phone number or even what city she lives in. Brushing her teeth would never happen if she was not prodded. She has never known a bike ride, driving lessons, a boyfriend or a sleepover. There will be no children, no husband, no wedding. She will run with wild abandon onto a highway, jump from a bridge or start a fire if asked. She has no clue of the reality of life – heartache, murder, poverty, gas prices. Once and always a child. Once and forever ~ filled with the innocence of a baby.
Not a day goes by that I do not grieve for the loss of everything I ever dreamed possible for her. She is part infant and all woman at the same time. She will be mine until I pass away. On that day, I will have to let her go and not before. I have come to own this blessing of Stephanie and I find peace in the belief that she chose this life and in this choice, she has sacrificed everything for the sake of helping thousands of others, like her, who will need to be cared for 24/7 their entire lives. She knew I would be the mom to do it. It is not enough to have her name on a list so she can be a part of a “system” when she turns 21 in 2013. It would be easy to sign her off, pack her up and move her into the first available group home that has a vacancy. Leave her care in the hands of people who care – or not – unmonitored, get on with our lives and see her on the holidays. In a perfect world, she is placed in a home where love reigns supreme, her every need is met, she has friends, a purpose and awakens every day to a smile and a reason. THAT is a crap shoot!
Truth is, in the next decade, an estimated 500,000 autistic children who need 24/7 care will age out of the school system and have no place to call home, but HOME. Ok, so I get this question all the time — “why can’t she come home? She is YOUR child, after all, YOUR responsibility. YOU should bring her home and care for her.” “Why should WE pay taxes so your child can be cared for?” Come on, really???
Such an easy statement from those who have no clue what it is like for Stephanie or for any person who is afflicted with autism, especially severe autism. It is, simply enough, a challenge at all times, a nightmare in moments, a complete joy in others. Not what I had envisioned for my life, but what I graciously accept with an open heart. I am her voice now – me, her dad, and her step dad – all court appointed guardians of her. We make her decisions for her life and placing her in a group home is not MY decision. It is not enough. Bringing her home full time is not a good idea, either. What will she do here? She cannot hold a job by day, not even stuffing envelopes. I will have to pay for adult day care to watch her while she watches TV all day – every day – for the 30 or so years I hope to have left. And then what??? What will become of her when the three of us are gone? Is it right to expect her brothers to care for her??
And this is where the love story of “Stephanie’s House” continues. I could not just sit back and let my daughter be at the mercy of a system. It is my mission to be able to establish and fund LIFE (Love Inspired Family Environment) homes for women with autism and other mental disabilities. Each home will be a place where a young lady comes to spend her life. A warm, loving, socially responsible place where friendship, safety and family come first. A happy place. A place to call home. A place where a family can rest assured knowing their daughter is loved and cared for – well beyond their passing. You see, one of the biggest issues a parent of a child with severe disabilities faces is what will happen when I die? Who will care for her?
It is my goal to reach out to the world to help create places for the thousands of autistic adults who will need housing in years to come. It is being called the “silent tsunami.” Unless you are a part of the system, you may have no clue what an issue this already has become. Who will fund this? It is going to be a national catastrophe. There is little funding right now to support even young children with wrap around, in home services. How do you suppose the state and federal governments will be able to support housing for a million plus adults with autism? I am not waiting around for that to happen.
We are an official 501c3 non profit. That means we can accept donations of cash, items for our sale, houses, whatever you want to contribute and all of it is TAX DEDUCTIBLE for you!!
We need to raise $350,000 by 2013 so we can buy a house and get it ready for what we hope to be 3 young women. The house needs to be completely outfitted to meet their needs, including locks on doors, monitors and alarms … think 2 year old with adult physical capabilities. Raising the initial funds is not enough. We will then need to subsidize the house, the caretakers, food, transportation, etc … this task is daunting, but needs to happen.
Thank you for caring.
We love our Board of Directors!
Andy Ludwig, Chairman – co-owner, Ludwigs’ Gourmet Catering, Inc.
Marie Louise Ludwig, CEO – kitchen expert, QVC
Donald Ludwig, Sr., Treasurer – retired
Rosemary Ludwig, Secretary – retired
Ryan Kier, member – graphic design, BSA
Michael Fisher, member – executive in the food industry
Renee Fisher, member – executive in property management
Diana Urbine, member – organizational expert – QVC
Markcharles Misilli, member – kitchen guru – QVC
Dr. Susan George – critical care and pharmacology – advisor