Saturday, May 16, 2015

Lois Pilot

Autism Light #398 is Lois Pilot.

Lois Pilot is an Autism Mother from Orange County, California. Her son Dylan has autism. Lois Pilot died on October 9, 2000, from brain cancer, at the age of 37. Her funeral service was held on October 12, 2000, at Pacific Coast Church in San Clemente, California. She is survived by her husband Kevin Pilot and her two sons Dylan and Kurt. They were 6 and 8 when Lois passed away and are now young men in their early 20's. Lois Pilot will be placed on the Autism Light Memorial Roll today.

Sketch of Lois Pilot, by Dane, a young man with autism
Lois Pilot is remembered both for her dedication as an autism mother and for her autism advocacy. Her advocacy started in 1994, when her son Dylan was diagnosed with autism. She is remembered for the following achievements (LA Times Obituary, October 12, 2000).
  • She helped start the Autism Coalition for Creative Educational Social Services and succeeded in establishing a pilot program for autistic children at Aliso Viejo's Foxborough Elementary School in California.
  • She volunteered at Pyramid Autism Center, which was founded in 1998 and continues today to operate in Orange, California. Her son Dylan was one of the first students of Pyramid Autism Center. 
  • She was a fundraiser for autism causes.
  • She was active in a national advocacy group called Cure Autism Now. Cure Autism Now merged with Autism Speaks in 2007.
Kevin Pilot explained to Autism Light how mothers like Lois were pivotal in the history of autism in paving the way for the increased services we experience around the United States today. Kevin Pilot said,
In those early days, we had nothing. The school districts were refusing ABA or any other kind of meaningful therapy. The "programs" as they existed were essentially all the disabled kids regardless of disability in a room for the day, separated from everyone else. Everyone told us this is how it is, and this is what we do and they didn't want to change. It took a handful of mothers like Lois to say "no," this isn't how it is and we don't accept that this is what it has to be for our children and they got together. They started meeting, and saying "no." and going to fair hearings. They became medical experts, legal experts, nutritional experts. The meetings got so big that they had to rent halls instead of meeting in people's homes. The school districts started listening and changing. It was really moms like Lois that paved the way for the services that many younger families have today. So in that sense, she is a hero, as are many of the other moms that really gave up their lives for a time in service of their children.
James Mulvaney who worked with Lois Pilot in the Cure Autism Now chapter in Orange County, California said, "She was a leader in Orange County in trying to get innovative therapy for children. Her house was filled on the weekend with volunteers training people to better help children focus. She had this bubbly enthusiasm, even though she was dealing with a very difficult situation with her son (LA Times Obituary, October 12, 2000)."

Kevin Pilot told Autism Light that, "Our house was not only filled with volunteers or other parents and people being trained but also children. Our house was an interesting place where children with autism mixed with the neighborhood kids, it was a kind of inclusive environment before inclusion was a word thrown about as much as it is today."

"If 'mom' is in the dictionary there should be a picture of her in there," Kevin Pilot said. "She was perfect, a terrific mom (LA Times Obituary, October 12, 2000)."

Kevin Pilot shared this about the enduring impact that Lois had as a mother to her two children.
Her kids both are kind, love people and are the kinds of people that would give the shirt off their back for someone in need. I think they get that from her. Our oldest son Dylan lives in a group, functioned extremely well for a non-verbal autistic young man who had some very serious behavioral issues growing up. He goes out to restaurants, parks, and movies. He doesn't have as complete a life as I think he might without his limitations but I think he is pretty close to having as complete a life as is possible for him. That is due to his mother. I think there was a moment after the diagnosis when she just decided there would be no stone unturned and she pursued his interest vigorously, with great insight and completely. And I think had she survived, she would have been pleased with the result.  There was light at the end of tunnel even though she just had a small glimpse of it.
Kevin Pilot told Autism Light about Lois' philosophy of integrating children with autism into the fabric of society,
That was the thing about Lois. She didn't focus on what our kids couldn't do but more on what they could. I think it is easy to focus on what is lacking in our children and miss out on what shines in them, and I think she always had the ability to get past all the behaviors and communication barriers and see the person inside. And respond and interact with them. She really strived to make Dylan (our autistic son) a part of everything, the family, the neighborhood, and the community.
Lois Pilot's passion for helping people associated with autism resonates 15 years after her passing. Lois is an example of how the light of an autism mother shines on beyond the length of their years. We remember Lois Pilot today and hope that her example as an autism mother will encourage others to shine a light for autism. Our thoughts are with her family in the loss they experienced, knowing that no amount of time can completely remove the loss they feel.

Autism Light honors diverse heroes to the world of autism.

The sketch of Lois Pilot was used here with permission of Kevin Pilot.

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