Who Will Catch You When I Fall is a feature documentary project about autistic children with high support needs. This is a personal story about a family coping with two teen/adult autistic children, with a focus on the looming crisis of when their parents will no longer be able to care for them. It begins with a brother and sister reconnecting after the death of their father, as he meets her boys for the first time since before they were diagnosed. This film takes us through the harsh realities facing her children.
These parents, along with many other families, face a heartbreaking and unforgiving challenge; to provide for their children who will never be able to care for themselves independently. The scope and costs of meeting these needs are staggering!
We want to shine a light on and bring awareness to this unique, growing, and underrepresented concern; and illustrate the need for solutions while exploring every available outlet for support. In our research for the film, we have found two types of parents. First is the parent who can’t face what will happen to their child and is in denial. Second is the parent who is desperate for answers and for a strategy to take care of their child when they are no longer here. Regardless, we hope to contribute to society by sharing and educating about strategies and solutions for people in this sometimes tragic, but always emotional, dilemma.
The Decker family is just one example of the growing population that is dealing with this issue. Matthew (20) and Nathan (19) Decker are the two boys who are the focus of this film. We will show the lives of these children from birth to diagnosis, up to the present, highlighting the challenges they have dealt with along the way. We will cut in home video footage, as appropriate, to illustrate their journey. These children are mostly non-verbal and fully unable to care for themselves. They have also, more recently, begun to experience seizures, which complicates their condition further and threatens their lives.
We are focusing specifically on autistic persons who are intellectually and developmentally disabled, and need 24/7 care. While there is significant content available about autistic persons who are more independent, we are highlighting the specific circumstances of the families with severely autistic children where the parents are aging beyond the ability to care for them.
The parents of these boys, Steve and Debbie Decker, are working professionals who have sacrificed to provide for them but, at some point, they will no longer be physically able to care for them directly. The father was an industrial engineer working for Walmart. He quit his job to stay at home and care for them full time. The mother was a career FBI agent who has now retired from that position but continues to work to provide financially for her family. This family has been uprooted multiple times to move near the schools and treatment centers to give the boys the best care that they could afford.
The story will be told through the eyes of the brother, Guy Ragland, who has not seen the boys since they were children. He will be meeting them on camera for the first time since then. We will show an outsider’s perspective of these unique boys and try to contrast their lives against his own childhood as he and his sister grew up together. In particular, we want to show the boys as individual human beings and not just the sum total of their diagnoses.
We intend to interview the Director of The Brookwood Community, just outside of Houston, Texas. The family hopes to enroll the boys for therapy and support with the anticipation that they will eventually become full time residents. The waiting list for this facility is years long however, and the cost is substantial, even though it is nowhere near the most expensive alternative.
We will meet and talk with other families dealing with severe autism, who are in different stages of this issue but who all still face the same long-term problem of providing for their children after they are gone. We want to show the wide-ranging talents and personalities of these people, as well as the common problems they face in their daily lives.
We plan to interview national autism organizations to get their perspective on the issues these families face. We’re hoping to hear more about the broad scope of this subject, and show the big picture of the emotional and financial realities, including the political and systemic limitations currently in place. We also plan to capture some of the activities and events that occur in April of each year during National Autism Month.
We expect to interview professionals in the field of aging to learn more about the difficulties facing the parents as they get older while dealing with the non-stop needs of their children. We also intend to interview politicians on a local and national level to discuss political support for these families, and understand the resources available to them.
It is our ambition to capitalize on any momentum or publicity from the documentary to launch a foundation to raise money to benefit families who are facing these overwhelming challenges.
In the end, though, this is a personal family story and a labor of love that we hope will help other people understand the severity of this problem. The ongoing, unending nature of the situation is very difficult to comprehend without first-hand experience. We plan to tell their story in all of its raw emotion while remaining sympathetic and respectful to the individuals who are dealing with this tidal wave of need on a daily basis.