Editor’s note: Thank you to Prairie Gardens for sponsoring this week’s Chambana mom to know, and for sponsoring all of our Chambana moms to know for the month of April. It’s time to get into the garden, don’t you think?
Linda Tortorelli is a force in the Champaign-Urbana community, especially when it comes to the area of disability. The director of The Autism Program, an affiliate of the University of Illinois at Urbana-Champaign, Linda is a dynamic force behind community education about autism as well as providing direct service to families. Linda was recently honored with a 2013 Chancellor’s Academic Professional Excellence Award from the University of Illinois for her efforts as “the person that parents, child care workers, teachers and medical professionals turn to for help when a child who has been diagnosed with an autism spectrum disorder.” Linda has been married to her husband, a professor, for 28 years. They have three adult children — Joe, a commercial pilot who is engaged to be married this summer; 23-year-old Patrick, who lives at home and works locally at Best Buy, has a rare genetic condition called Smith Magenis Syndrome; and Claire, a sophomore at Colorado State University.
See why we think Linda is a Chambana mom to know.
Q: You are THE source of information for parents who have children with autism in and around Champaign-Urbana. How did you reach this point?
As I often say, “It is a career that chose me.” While I have worked in the field of disability professionally – with a paycheck, that is, – for the past 7 years – I entered the world of disability 23 years ago when my son Patrick was born. As I looked for assistance and answers in our community for the challenges we were facing in raising our son, there was very little help for the types problems we were facing. I became involved in the CU Autism Network, and eventually led this group for many years. Here I found other parents traveling this journey and several caring and compassionate professionals who were willing to walk along side and educate us. I actively sought out every educational opportunity I could find to increase my knowledge and understanding of autism and related fields.
Q: How would you describe the autism community in Champaign -Urbana?
The autism community in CU is very diverse, as it is in every community. Autism is a pervasive developmental disorder. Its symptoms include differences in many areas including social communication skills, behavior, and sometimes intellectual skills. It is a “spectrum disorder” In basic terms, this means you can be a little autistic or very autistic. About 1 in 88 children has been identified with an autism spectrum disorder (ASD) according to estimates from the Center for Disease Control. ASDs are reported to occur in all racial, ethnic, and socioeconomic groups. ASDs are almost five times more common among boys (1 in 54) than among girls (1 in 252). While we do not have data for our community, anecdotally I would say these national statistics hold true here. Our community resource center is located on the campus of the U of I, so I see children and families from all over the world and walks of life who are dealing with life on the spectrum.
What should families who may have “typical” children know about children who are autistic? How can they educate their children about autism?
Children with autism want to have friends and be with their peers. Awareness is step one, you can’t explain what you can’t name. Getting families comfortable with telling others that their child has “autism” is something I advocate for with the families I meet. Then we can work toward understanding- what is autism, how does it impact people in general (a neurological difference that impairs social interaction, communication, and involves restricted and repetitive behavior). We can then move towards explaining how autism impacts the particular children in your child’s classroom. (Example: Tommy never stops talking about Thomas the Tank Engine and doesn’t seem to care what I like.) Understanding leads to acceptance. When we have understanding of something, we can move into fostering empathy, what might it fell like to not be able to understand social cues or verbal language. Understanding how confusing and anxiety provoking our environment would be if we didn’t understand 80 percent of what was happening – or have the ability to predict what will happen next. Finally, I suggest describing all the ways children with autism are just like your child. They might like the same things and have the same dreams as other children. There are several good books that parents can read to children to help them understand more about autism: In My Mind: the World through the Eyes of Autism by Adonya Wong; Amazingly…Alphie! Understanding and Accepting Different Ways of Being by Roz Espin; The Autism Acceptance Book: Being a Friend to Someone with Autism by Ellen Sabin; Wince We’re Friends: An Autism Picture Book; All Cats have Asperger Syndrome by Kathy Hoopman.
Q: April is Autism Awareness Month. What awareness do you emphasize through all your work not only educating families but also students and community members?
I think it is important for the general population to understand the characteristics of autism so they might have a sense if the person they are experiencing might have some of the challenges we mentioned before so they can be less judgmental and more helpful. I also try to stress the many strengths of a person with ASD. They generally have terrific memories, rarely judge others and are often very truthful.
Q: As a “veteran” mom who has adult children, what are your favorite pieces of advice for moms of young children?
A word of advice I was given by my father I try to live by and pass along, “ Do not wish your life away”. Life passes so very quickly, make every moment last. Even though many, many days were filled with difficult moments, the same days would be filled with some terrific moments. Trying not to lump a whole “day” or whole “experience” into one negative emotion is something I tried very hard to avoid. As I often found myself saying when asked about a vacation or event “It was the best of times…it was the worst of times” – and that pretty much sums up most of life. However, when you are living a life on “the spectrum” the best and worst of times can cycle so quickly it can be hard to not have it all just blur together. Try to pause and really be present in the moments of your life.
Q: Mother’s Day is coming up soon. What is your favorite way to spend the day? Does your family have any Mother’s Day traditions? What is the best gift you ever received on Mother’s Day?
I love to spend some quality time with my husband and children – then slip away for some quality alone time. A quite walk is usually my preferred activity. When my children were small, I always loved the personal “love” notes and homemade “free for one….” tickets that my daughter used to make. I have been truly blessed with three amazing and wonderful children who have each taught me much about patience, commitment and endless love.
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