Blue Skies
Donation protected
I am a physician and mother to Shawn, a 20-year-old adult who suffers from severe autism and a seizure disorder. I am determined to create an environment in which my son and other individuals with special needs have a chance at a purposeful and fulfilling life, and would appreciate help with regard to the development of Blue Skies Farm – a residential and day care program for young adults with disabilities.
I will never forget the day when everything changed: August 12, 1998 – almost seventeen years ago in Tel Aviv, Israel. It was the day Shawn was diagnosed with autism. I remember feeling dazed as the doctor tried to console me by stating, “he may be able to cut with scissors one day.” The physician in me understood the significance of the diagnosis, but the mother in me was not fully able to comprehend that the hopes and dreams that I had for my little boy were not to be. My son was not going to experience the joy of learning or getting a job or fatherhood. As I grieved the loss of “what should have been,” I started to comprehend the enormity of the diagnosis, and to ask, will my son ever be able to talk? Will he ever be able to communicate his thoughts and feelings? Will he learn to play? Will he have friends? Will he ever stop inflicting pain on himself (head banging, ripping his skin open)? Will he ever be able to sleep (he was awake most of the day and night)? Was the doctor right – was Shawn’s condition so severe that we will one day celebrate his ability to cut with scissors?
I had read numerous stories regarding autistic children whose condition had significantly improved -- some, even cured -- by various biomedical and therapeutic methods. I understood it would take research and hard work, rather like solving a puzzle, but I was confident I could find the way to heal Shawn. I left my profession and invested all my time, energy and financial resources in the quest to help Shawn. I researched everything there was to know about autism. I pursued every possible therapy, bought every new supplement, followed every special diet, and took him to specialists all over the world. Life was an emotional rollercoaster – great hopes, followed by disappoint – the latter far more prevalent.
In 2010, when Shawn was 14-years-old and still non-verbal, very low functioning, and further challenged by a life-threatening seizure disorder, I was offered the opportunity to train with a specialist in neurodevelopment in the United States. Within a week of accepting the position, I was packed and – together with Shawn, my three other children, and my mother – prepared to move to the United States. It was not easy starting over in a new country. The children all had to adjust to a new language, different culture, new schools, new friends…and just as we started to feel somewhat settled, tragedy hit. My mother -- my best friend and constant supporter -- was diagnosed with Stage IV cancer. We found a cancer specialist in a different state, and within a couple of days we relocated once again -- this time to pursue my mother’s treatment. Unfortunately, the disease was too advanced and she passed away in my arms two months later.
As a result of my mother’s death, Shawn suffered tremendous grief and developed severe uncontrollable seizures that required hospitalization. It was the darkest moment of my life. I was extremely exhausted and depressed. I had lost my mother and best friend; I had a severely disabled and ill child; I had no home for my children; our possessions were in storage; we didn’t have visas to stay in the States; I didn’t have a job; and I faced significant financial challenges (including large debt). It seemed as though I had fallen into a deep, dark cavern. But I knew this couldn’t be the end. My children needed me. The Creator had a different plan in store for us, a greater plan; I just didn’t know what that plan was yet. The Universe was pushing me to the edge so that I would change something, do something…but what?
Shawn will soon graduate from the life skills class at his high school, and he has no future. He cannot go to college. He cannot get a job. He cannot live independently. He requires 24/7 care. What happens next for Shawn and other adults with disabilities like Shawn? According to the Centers for Disease Control and Prevention, the prevalence of autism in the United States is estimated to be 1 in 68 births. There are many programs available for children with autism, but are very few programs available to assist once these children become adults. No longer eligible for public school enrollment, these adults become their parents’ full-time responsibility. Often without any assistance, the parents are left to care for their disabled adult child 24/7, providing for their medical care; aiding in activities of daily living; and shouldering the responsibility for their child’s educational, vocational and social needs. And they face the very real concern that their disabled child will outlive them – and then what?
In the U.S, the estimated average cost of autism over the lifespan of a person with an intellectual disability is $2.4 million (Buescher et al., 2014). In June 2014, only 16.8 percent of the population with disabilities in the U.S. was employed. (Bureau of Labor Statistics, 2014). Between the enormity of the cost of care of an adult with special needs and the lack of any occupation for these individuals, the on-going care of an adult with disabilities is an extreme challenge. There is a great need to provide these special individuals with a safe, nurturing environment that will offer life enrichment through education, vocational experience and positive social interactions.
My mother was Shawn’s greatest supporter; she cared for him with all her heart, endlessly and tirelessly. They were inseparable. Her first thought when she received her terminal diagnosis was, “What will happen to Shawn when I am no longer here?” She knew when she departed that the rest of us would manage in life, but not Shawn; he wouldn’t be able to survive on his own. Thus, she left a moderate inheritance that she asked to be used for Shawn’s care, but it was simply not enough to provide for him over his lifetime.
I had to find a way to ensure my mother’s wishes for Shawn were fulfilled. With the inheritance, I purchased a former hawk sanctuary in Tucson, Arizona, which I named “Blue Skies Farm” and hope to develop as another form of sanctuary – a place where my son and other adults with special needs can live, work and grow together. How beautiful that my mother’s gift would help not only Shawn, but other adults with disabilities as well. I need your help, however, to make this dream a reality.
We have already identified a core staff ready to help these individuals find purpose, fulfillment and joy in their lives. As a physician and mother to a young adult with autism, having trained in the treatment of neurodevelopmental conditions, as well as in holistic and nutritional medicine, I will be able to provide Blue Skies Farm’s residents and daycare participants with the resources to support their physical health and emotional wellness. Therapists will provide neurodevelopmentally appropriate activities, addressing sensory issues, and teaching life skills and vocational skills with the goal of having each individual live the most independent life possible.
The fulltime residents will be provided with safe, comfortable housing and round-the-clock supervision. All participants will enjoy busy, productive days filled with educational programs, farm activities (tending to chickens, goats, gardening…), various therapies (art therapy, music therapy, hydrotherapy, yoga, dance and fitness training…) and learning life skills including self-care and care of home and environment (cleaning, cooking, doing laundry, yard work…). There will also be integration into the community (grocery shopping; outings to movies, museums, restaurants, parks; working at a farmer’s market selling what is harvested on the Farm…).
We have so much to offer these special individuals, but we can’t without further funding. We mortgaged the property to finance the development of the Farm, but the mortgage funds are insufficient to complete what we need to do to open our doors. Much has been accomplished since we began this campaign; we are almost there. We obtained an additional neighboring property that will serve as the residential home. Shawn is now Blue Skies first resident and couldn't be happier in his new home. We are looking forward to welcoming his new housemates. We have renovated the older farm buildings ensuring a safe and healthy environment. We are ready for our farm animals and we have Lucky Girl, our beautiful horse, waiting to bring happiness into the lives of our participants. As we take our licensing steps, we are required to have a larger indoor space, and thus, must add another building to our farm. Our next goal is to raise $20,000 to make that happen.
Every day – beginning 20 years ago and continuing through the present – I wake to the incredible challenge of helping Shawn get through his day the best he can. Parenting a child with disabilities has been the most challenging, exhausting and terrifying responsibility I’ve faced in my lifetime. Now that my son has reached adulthood, I understand that this is a responsibility I cannot handle alone. And now I understand what the greater plan is. Shawn and I do not need to live this challenging journey alone, nor do other families like us. We are here to create Blue Skies Farm so that we can all help each other.
My mother, in her love for Shawn, provided the seed for the Blue Skies Farm’s conception. Your contributions will help the seed sprout and blossom so that the Farm’s complete development can become a reality – where, like the hawks who still occupy the property, the new residents can soar and reach their potential.
Thank you
I will never forget the day when everything changed: August 12, 1998 – almost seventeen years ago in Tel Aviv, Israel. It was the day Shawn was diagnosed with autism. I remember feeling dazed as the doctor tried to console me by stating, “he may be able to cut with scissors one day.” The physician in me understood the significance of the diagnosis, but the mother in me was not fully able to comprehend that the hopes and dreams that I had for my little boy were not to be. My son was not going to experience the joy of learning or getting a job or fatherhood. As I grieved the loss of “what should have been,” I started to comprehend the enormity of the diagnosis, and to ask, will my son ever be able to talk? Will he ever be able to communicate his thoughts and feelings? Will he learn to play? Will he have friends? Will he ever stop inflicting pain on himself (head banging, ripping his skin open)? Will he ever be able to sleep (he was awake most of the day and night)? Was the doctor right – was Shawn’s condition so severe that we will one day celebrate his ability to cut with scissors?
I had read numerous stories regarding autistic children whose condition had significantly improved -- some, even cured -- by various biomedical and therapeutic methods. I understood it would take research and hard work, rather like solving a puzzle, but I was confident I could find the way to heal Shawn. I left my profession and invested all my time, energy and financial resources in the quest to help Shawn. I researched everything there was to know about autism. I pursued every possible therapy, bought every new supplement, followed every special diet, and took him to specialists all over the world. Life was an emotional rollercoaster – great hopes, followed by disappoint – the latter far more prevalent.
In 2010, when Shawn was 14-years-old and still non-verbal, very low functioning, and further challenged by a life-threatening seizure disorder, I was offered the opportunity to train with a specialist in neurodevelopment in the United States. Within a week of accepting the position, I was packed and – together with Shawn, my three other children, and my mother – prepared to move to the United States. It was not easy starting over in a new country. The children all had to adjust to a new language, different culture, new schools, new friends…and just as we started to feel somewhat settled, tragedy hit. My mother -- my best friend and constant supporter -- was diagnosed with Stage IV cancer. We found a cancer specialist in a different state, and within a couple of days we relocated once again -- this time to pursue my mother’s treatment. Unfortunately, the disease was too advanced and she passed away in my arms two months later.
As a result of my mother’s death, Shawn suffered tremendous grief and developed severe uncontrollable seizures that required hospitalization. It was the darkest moment of my life. I was extremely exhausted and depressed. I had lost my mother and best friend; I had a severely disabled and ill child; I had no home for my children; our possessions were in storage; we didn’t have visas to stay in the States; I didn’t have a job; and I faced significant financial challenges (including large debt). It seemed as though I had fallen into a deep, dark cavern. But I knew this couldn’t be the end. My children needed me. The Creator had a different plan in store for us, a greater plan; I just didn’t know what that plan was yet. The Universe was pushing me to the edge so that I would change something, do something…but what?
Shawn will soon graduate from the life skills class at his high school, and he has no future. He cannot go to college. He cannot get a job. He cannot live independently. He requires 24/7 care. What happens next for Shawn and other adults with disabilities like Shawn? According to the Centers for Disease Control and Prevention, the prevalence of autism in the United States is estimated to be 1 in 68 births. There are many programs available for children with autism, but are very few programs available to assist once these children become adults. No longer eligible for public school enrollment, these adults become their parents’ full-time responsibility. Often without any assistance, the parents are left to care for their disabled adult child 24/7, providing for their medical care; aiding in activities of daily living; and shouldering the responsibility for their child’s educational, vocational and social needs. And they face the very real concern that their disabled child will outlive them – and then what?
In the U.S, the estimated average cost of autism over the lifespan of a person with an intellectual disability is $2.4 million (Buescher et al., 2014). In June 2014, only 16.8 percent of the population with disabilities in the U.S. was employed. (Bureau of Labor Statistics, 2014). Between the enormity of the cost of care of an adult with special needs and the lack of any occupation for these individuals, the on-going care of an adult with disabilities is an extreme challenge. There is a great need to provide these special individuals with a safe, nurturing environment that will offer life enrichment through education, vocational experience and positive social interactions.
My mother was Shawn’s greatest supporter; she cared for him with all her heart, endlessly and tirelessly. They were inseparable. Her first thought when she received her terminal diagnosis was, “What will happen to Shawn when I am no longer here?” She knew when she departed that the rest of us would manage in life, but not Shawn; he wouldn’t be able to survive on his own. Thus, she left a moderate inheritance that she asked to be used for Shawn’s care, but it was simply not enough to provide for him over his lifetime.
I had to find a way to ensure my mother’s wishes for Shawn were fulfilled. With the inheritance, I purchased a former hawk sanctuary in Tucson, Arizona, which I named “Blue Skies Farm” and hope to develop as another form of sanctuary – a place where my son and other adults with special needs can live, work and grow together. How beautiful that my mother’s gift would help not only Shawn, but other adults with disabilities as well. I need your help, however, to make this dream a reality.
We have already identified a core staff ready to help these individuals find purpose, fulfillment and joy in their lives. As a physician and mother to a young adult with autism, having trained in the treatment of neurodevelopmental conditions, as well as in holistic and nutritional medicine, I will be able to provide Blue Skies Farm’s residents and daycare participants with the resources to support their physical health and emotional wellness. Therapists will provide neurodevelopmentally appropriate activities, addressing sensory issues, and teaching life skills and vocational skills with the goal of having each individual live the most independent life possible.
The fulltime residents will be provided with safe, comfortable housing and round-the-clock supervision. All participants will enjoy busy, productive days filled with educational programs, farm activities (tending to chickens, goats, gardening…), various therapies (art therapy, music therapy, hydrotherapy, yoga, dance and fitness training…) and learning life skills including self-care and care of home and environment (cleaning, cooking, doing laundry, yard work…). There will also be integration into the community (grocery shopping; outings to movies, museums, restaurants, parks; working at a farmer’s market selling what is harvested on the Farm…).
We have so much to offer these special individuals, but we can’t without further funding. We mortgaged the property to finance the development of the Farm, but the mortgage funds are insufficient to complete what we need to do to open our doors. Much has been accomplished since we began this campaign; we are almost there. We obtained an additional neighboring property that will serve as the residential home. Shawn is now Blue Skies first resident and couldn't be happier in his new home. We are looking forward to welcoming his new housemates. We have renovated the older farm buildings ensuring a safe and healthy environment. We are ready for our farm animals and we have Lucky Girl, our beautiful horse, waiting to bring happiness into the lives of our participants. As we take our licensing steps, we are required to have a larger indoor space, and thus, must add another building to our farm. Our next goal is to raise $20,000 to make that happen.
Every day – beginning 20 years ago and continuing through the present – I wake to the incredible challenge of helping Shawn get through his day the best he can. Parenting a child with disabilities has been the most challenging, exhausting and terrifying responsibility I’ve faced in my lifetime. Now that my son has reached adulthood, I understand that this is a responsibility I cannot handle alone. And now I understand what the greater plan is. Shawn and I do not need to live this challenging journey alone, nor do other families like us. We are here to create Blue Skies Farm so that we can all help each other.
My mother, in her love for Shawn, provided the seed for the Blue Skies Farm’s conception. Your contributions will help the seed sprout and blossom so that the Farm’s complete development can become a reality – where, like the hawks who still occupy the property, the new residents can soar and reach their potential.
Thank you
Organizer
Sharon Anaise Benham
Organizer
Tucson, AZ
