Laura Shumaker: Not a Regular Mom
Laura Shumaker is an author, consultant, writer, autism advocate, and proud mother of an adult on the autism spectrum. The video above features Laura’s book, “A Regular Guy: Growing Up With Autism,” in which she discusses her son Matthew’s journey with autism over the years. Some of her other writing has included her work as a blogger for The San Francisco Chronicle. In addition, she is a public speaker who has given presentations to schools, book clubs, parent groups and other organizations, sharing her experience to help others. Autism After 16 recently had the opportunity to talk with Laura about what she’s doing today.
AA16: Thank you so much, Laura, for taking a minute to talk with us today! How is everything going? What have you been up too recently?
LS: Things are going well! I continue to write essays about my experience as Matthew’s mom (here is one I just wrote that I am proud of), speaking to groups about issues that face families and individuals with autism, and also educating teachers about autism from a parent’s perspective.
AA16: As a big fan of yours, can you tell me more on what led you to write your book, “A Regular Guy: Growing Up With Autism”?
LS: When Matthew was about 15, my husband and I made the heartbreaking decision to send him to a residential school, something we thought we would never do. When I got home after dropping him off, my friends acted like they were happy for me! I decided I needed to write about my experience as Matthew’s mom to educate my family, friends and community. Eventually, I organized all of the stories that I wrote into a book. I am so happy that it has been so well received.
AA16: When did you start blogging for The San Francisco Gate (SF Gate)? Can you tell us what went into the decision to join their organization?
LS: I wanted to raise awareness and offer resource information in the San Francisco Bay Area—not only about autism but other disabilities. As Matthew transitioned into adulthood, I realized that there were a lot of parents like me who needed information and support. I was so lucky that SFGate gave me the opportunity to share my experiences and information. A lot of the stuff I was writing seemed to resonate to the broader community.
AA16: I read one of your recent posts on SF Gate, “15 Things You Should Never Say To An Autistic,” and I was very intrigued by Number 12 that says, “You mean you are a person with autism. You are a person first, not a disability or a disorder label.” In regards to the debate that sometimes comes when discussing “person with autism” versus “autistic Individual,” do you think it’s important for people to respect both party’s preferences?
LS: Absolutely! I also thing it is wonderful that articulate self-advocates like YOU are speaking up.
AA16: I know your son Matthew has been a huge influence behind your writing. Can you tell us a little bit more on what’s he up to today?
LS: Matthew is doing just great. He is 26 years old now and living in Camphill Communities California. He is working and training in landscaping and biodynamic farming. Matthew used to have aggressive and impulsive behaviors and doesn’t so much anymore. He is very verbal and loves traveling and singing. He has joined a church, and really wants to find a girlfriend! He does have a lot of great friends now, which is huge. I am so proud of him.
AA16: What do you think is important for parents to know about having a child with autism today? Looking back, what is one thing you wish you knew when first finding out about Matthew’s diagnosis?
LS: When Matthew was young, not as much was known about early intervention, and we tried all this weird stuff. Parents these days are lucky to have evidence-based interventions that improve outcomes. When Matthew was first diagnosed, I had no idea how much I would learn to love and accept and ENJOY him. I also wish I had known to get help/support earlier. It seems to me that there is so much more support available these days and that is wonderful.
AA16: As an adult with autism, I’ve been somewhat skeptical about our community’s progress in regards to adult services. How do you feel when it comes to this topic?
LS: Kerry, this is a topic I am very passionate about and I am working hard to build more resources. In out area, we have AASCEND (Autism Asperger’s Syndrome Coalition for Education, Networking and Development). In addition to monthly meetings, AASCEND has a Job Club that is very active. I also think it is important to create housing and community/social opportunities for adults with autism. What I love about Camphill for Matthew is that it has a built-in and natural circle of support and community. I would be so happy to do more in this area.
AA16: Tell us a little about Matthew and what he was like growing up. What were the greatest challenges during those early years?
LS: Matthew was a dreamy little boy who would all of a sudden bolt away from me when I least expected it! I really had to be on my toes. He was the same way in school, and it was very hard to get him to focus. The impulsive behavior was a problem, too. It took a scary turn when he was going through puberty and he became aggressive and very difficult to keep track of. Through it all I think the greatest challenge I had was balancing his care with that of my two younger sons. It was so important to me that they get the attention that they deserved.
AA16: What were the factors that contributed to the decision to send him to a residential school?
LS: Sending Matthew to a residential school was the last thing that I thought I would ever do. But the aggressive and impulsive behavior that I mentioned earlier was such a worry. In one instance, Matthew ran into a young boy on his bike, (while we thought he was resting in his room) and the boy broke both legs. We didn't even hear about it until we got a letter from the boy’s attorney a few months later. It became clear that Matthew was not safe in the community where he grew up, and that his behavior was putting others in danger.
AA16: Why did you choose Camphill Communities for Matthew? What made this a good fit?
LS: We actually looked for schools in California, where we live, but at the time the only schools that were available would require Matthew to live in a group home. This was a worry since Matthew was a wanderer. A consultant told us about Camphill. When we went to visit, we liked the fact that students lived in houses with families and co-workers were typically developing and dedicated to service. Matthew would be cared for, but he would work alongside members of the community, disabled or not. Camphill's philosophy is that individuals with disabilities tend to be taken care of all of their lives. Their ability to contribute to a community is enriching and restoring.
AA16: The Camphill website states that its communities are "inspired by the anthroposophical teachings of Rudolph Steiner." Could you tell us what this refers to and what it means?
LS: Anthroposophy is the spiritual scientific understanding of the human being given by philosopher, scientist, and educator Rudolf Steiner, Ph.D. (1861-1925). Anthroposophy embraces a spiritual understanding of the human being, based on knowing rather than faith. Anthroposophy is the wellspring for Waldorf education, biodynamic agriculture, and new frontiers in science, the arts, sociology, medicine, and curative work. In Camphill Communities and Schools believe that:
- Everyone is interdependent and equal;
- It's the right and responsibility of each individual to pursue a personal education so that he or she may contribute to the spiritual progress of the world; and
- Every individual is a spiritual being, and that this spirituality is eternal and can never be judged.
AA16: What helped Matthew learn to manage his challenging behaviors? Were there specific interventions that you think were especially helpful or do you think self-management came with maturity?
LS: So many things contributed to helping Matthew learn how to control his behaviors—behavior plans, positive reinforcement, ABA, floor time, psychotherapy, medication, the list goes on! Matthew and everyone in his circle of care continue to work on behavior. There has not been one specific thing, but ability and maturity come close!
AA16: What kind of adult services does Matthew receive through the State of California?
LS: Not that many people have financial resources to afford this residential care (including us!). I'm not sure about other states, but the Matthew is a client of the regional centers of California, under the Department of Developmental Services. As such, he qualifies for funding for his Supported Living Program at Camphill California. When he went to Camphill Special School, our school district paid for the educational portion of the tuition and the regional center paid for the residential portion. Camphill Schools and Communities are nonprofit, so they count on contributions from parents who are able and fundraising is important!
AA16: What thoughts would you have for parents who may not have access to quality residential programming?
LS: I would say that if parents do not have access to residential programs, or if it is not their choice, they should:
- Make sure the school district is providing the services that their child needs and deserves;
- Get breaks. Find out about respite from your local department of developmental services. You are not doing yourself or your child any favors if you are tired and overwhelmed. Everyone needs a break!
- Don't forget the siblings. Give them as much one-on-one attention that you can. My sons Andy and John, (now 24 and 19) tell me that they are grateful that my husband and I made this a priority.
AA16: Any concluding thoughts you would like to share with our readers?
LS: Just that I admire my son Matthew so much. I feel so fortunate that I’ve been able to connect with so many great people like you through the work that I do! I’m also very proud of my other two sons, Matthew’s younger brothers John and Andy. They are so kind and encouraging with Matthew, and they make him laugh. God bless them!