Friday, January 24, 2014

Be With Me Documentary

Last night my husband and I attended the local premiere of the Be With Me documentary. The film shares the journey of one child and his family (our friends the Cairns and Monahans) with autism. A few months ago I saw a draft video that evoked within me much raw emotion as I relived my own journey while watching the movie; especially those first few years of intense early intervention after my son's diagnosis. The final version last night evoked less of my raw emotion but left me feeling more hopeful. In many ways the edits speak to the evolution of our understanding of autism and the evolving treatment.

Eighteen years ago JR Cairns' parents were told that he better like his room because he would be spending most of his time there and then would be living in an institution by age 18. Today JR is a college student who has no memory of having had autism. As difficult as that may be for some (especially "professionals" who work with individuals with autism and their families) to understand, it is true. The documentary actually records JR watching videos of his therapy sessions as a young child for the first time. After receiving the diagnosis, the Cairns family marshaled their resources, found treatment that worked for JR, assembled a team of dedicated therapists to help them then worked hard together for four years and the results are amazing! This documentary is a celebration of JR's success and the Cairns family journey; as it should be! The Cairns family decided to share their story to bring HOPE to other families. An autism diagnosis doesn't have to be a "life sentence." Effective treatment is available. However, this documentary is not a "How To" account intended to be used by other families to achieve the same outcomes JR achieved. The Cairns family is the first to acknowledge the truth that "If you meet one person with autism, you've met one person with autism." 

Eight years after JR was diagnosed (and two years after he entered a typical kindergarten class with no need for therapies or supports), my son was diagnosed with autism. Lucky for us, my husband and I received the diagnosis from a different doctor who, when asked, told us he had no idea what our son's future held but that we'd find out together. Like the Cairns family, we immediately began researching autism treatments, sought all the resources available to us and continue working hard together to help our son reach his fullest possible potential. For the past 6+ years my son's treatment has been supervised by the same team of therapists who worked 1:1 with JR. My son is a student at the school they founded and continue to direct. My son's needs have proven to be much more extensive and complex than JR's challenges. So far my son has received a decade of intense intervention therapy, and like JR, his family remains right there by his side working hard together, loving him and encouraging him. We will continue to do so for as long as he needs us even if that turns out to be for a lifetime. Our autism journey is unfolding along a different path from that of the Cairns family but it isn't better, it isn't worse; it is just different. 

It was our privilege last night to join the Cairns family as they shared their story and celebrated JR's success. We also are proud to count the Cairns and Monahans among our friends who celebrate our son's successes with us. Our journeys may be different but we happily are standing along side each other, supporting one another with our friendship and love.

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