How on earth were we able to accomplish this monumental task and how did we even know we HAD to do this?

Two questions I am often asked as her mom and as the founder of this wonderful organization. 

It all came down to many factors ~ some painfully obvious and some soul searching.

First of all the reality factor. Stephanie has been diagnosed with severe autism. She is non verbal save for a few choice words and sentences on occasion. As much as one would hope and pray for a complete turn around in 21 years, it just did not happen. NO cure came to be. NO magic pill. NO operation to reverse her condition.

Autism is for life. Mild or severe.

We were fortunate enough to be able to place in her in The Devereux Kanner Center, a local residential school where she spent 14 years of her life, over half of it thus far, receiving the best possible education and life assistance. Not many families have this option today as the diagnosis is now 1 in 50 - way up from 1 in 1,000 in 1994. We knew by age 15 that there needed to be a lifetime plan in place for her because once she turned 21, she was done with school and home to us. There were no options for any kind of suitable housing for her locally. 

Us. Her mom and step dad. Two people barely 50 who both had fulltime jobs which required both daytime and nighttime commitments. Who would care for her while we worked? What would she do all day? She is not capable of performing even the easiest of job tasking. Meeting after meeting. Was there a place where she could live and receive the same attention to life skills that she had enjoyed at Devereux? Was there a place where she would be loved and nurtured for her entire life? Where she would be treated with dignity and respect, patience, kindness. It was clear that because Stephanie was incapable of creating a life for herself that I would have to create one for her. It simply was not an option to "place her somewhere." I wanted more for my only daughter. I am her voice, her choices. I AM her life. 

Because while it is the responsibility of parents to care for a special needs child - perhaps for life - we are not always going to be here. Not something one ponders with any great regularity, but the truth of that matter is we are all going to die and while it is one thing to will the care of young children to a relative, it is something else to will the care of a special needs adult to HER siblings. Or to trust her care to a system that does not always work in her favor. If I should die, her step dad will be there for her. If we both should die together, it was clear she would be placed in the first available institution - anywhere - no regard for her wants and needs. Who would monitor her care? Visit her for life? Make sure all of her needs were met. Most importantly, who would be the voice for a perpetual 2- year- old in the body of a full grown woman? 

And so Stephanie's House came to be. I would create a 501c3 to raise the money needed to establish and maintain a private, independent LIFE home (love inspired family environment) for Stephanie, her morning, all day and night companions and two other women who needed support. Go!! Our first fund raiser was so successful that we KNEW we had to incorporate and become a charity so we could offer tax incentives to anyone who wanted to donate money. It was a long process and not without its high highs and low lows. There are rules beyond your imagination and step by step planning that must be maintained. The government does make it easy to become a charity with tax advantages. Find a great lawyer and accountant who understand all of it, and latch on. Have a good deal of cash set aside for that, however. 

I have been lucky enough to be connected to a generous group of influential friends in very high places who could donate items to our annual fund raisers - we did 5 years of a fall sale "Autism Shops" where we set up a huge store featuring new and gently used items for great prices. In 5 years, between the sales and donations, we were able to raise enough money to buy the house, renovate it and still have enough left over to keep it running for many years to come. Fund raising will never end. The house needs to be maintained and we hope to have some fun events through our organization to offer socialization and support to other families living with special needs adult children.