Why I Walk for Autism Speaks
It’s hard to believe that this is the 11th consecutive year we will be participating in the Autism Speaks Walk.
As many of you know, in December 2008, our son, Sam, was diagnosed with autism at age 2. It feels like a lifetime ago but it also feels like yesterday because I remember that doctor’s appointment so vividly. Hearing the words, “Your son has autism”, filled me with so much fear and uncertainty about our future. If only I could go back and tell myself that it’s going to be ok. Yes, it’s going to be a crazy ride, filled with many lows (being waitlisted for therapies, repeatedly battling the school district). But it will also be filled with many highs (Sam speaking his first words after years of speech therapy or recently asking to Facetime with a friend). Actually, I would tell myself that it is going to be better than ok.Autism currently affects 1 in 59 children and because it is a spectrum, it impacts every individual differently. For Sam, autism makes it difficult for him to pay attention and engage (particularly in non-preferred tasks), to be flexible and to understand other people’s perspectives. And while there are definitely challenges, Sam has so many strengths. He is smart, curious, funny and loving. He has an incredible memory, deep and specific interests, and a wholly unique and authentic point-of-view, as evidenced by the “Sam-isms” I often post.
Helping Sam navigate his autism through the years has impacted me in ways I never expected. It has made me more flexible, learning to roll with things when they don’t go as planned (which is pretty often). It has made me more understanding and less judgmental of people and behaviors. It has made me an advocate and helped me find my own voice. And it has made me immensely grateful for our family, friends, colleagues, teachers, doctors, therapists, specialists — the true village that we have assembled and grown over the past decade to support Sam and our family.
This year marked a big transition for Sam when he made the switch to a non-public school. I have always been an advocate for inclusion so Sam attended mainstream preschools and elementary schools with a one-to-one aide since he was 2, and for the most part, he did really well in these environments. The children were kind and accepting, the teachers were skilled and appreciated having him in the classroom and the various resources and services helped him access the curriculum. But as Sam prepared to enter middle school, we considered making a change. Sam would still need an aide to manage the large class sizes in public school and he had become pretty dependent, maybe too dependent, on always having someone with him. Also his peers were starting to notice and become less tolerant of his differences.
When we toured Bridges Academy, a school for students with high ability and potential who also experience learning and social challenges, we felt as if we discovered a magical place that was tailor-made for Sam. The curriculum was designed for kids like Sam, the teachers and staff were trained to work with kids like Sam and the students reminded us of Sam. Also, the small class sizes and high student-teacher ratio would eliminate the need for one-to-one support. And, most importantly, when Sam went for his visit, he came home and asked if he could go back the next day because he felt so comfortable there. In that moment, we knew that it was the right school for him and time to make a move. He has been there since August and continues to feel comfortable and is working on developing his independence as well as his peer relationships.
While switching school was a big change, many other things have stayed the same. Having a routine and the stability it brings is important for Sam. He still takes Tae Kwon Do at SCTKDC (he will be testing for his brown belt soon), he continues his guitar lessons with his ever-patient teacher, Todd Beeson, and he is still very passionate about horses, taking lessons at Ride On and visiting Silver Spur stables often. He also remains very interested in maps and weather and he loves riding trains. For his 12th birthday, Dan took him by train to San Francisco. Our incredible team -- including Sam’s OT Uyen Nguyen, his therapist and social skills group leader Dr. Lesli Preuss, his trainer Ryan at Special Fit, our RDI consultant Melissa Reiner and behaviorist Asheley Garcia -- all work to help Sam learn how to be safe, independent, resilient and build relationships. It seriously takes a village, and no one is more essential to our village than Nicole Lesley who has been Sam and Eli’s nanny for over eight years.
Autism Speaks is also part of our village. Their mission is to promote solutions across the spectrum and throughout the life span for people with autism and their families. They do this through raising awareness, funding research and providing critical resources and advocacy. Each year we walk to raise money to support this organization and to increase acceptance for people on the spectrum. We are living in a pretty harsh world where people are surprisingly unkind, especially to people who appear “different”. And while people on the spectrum’s brains work differently, they still deserve respect and opportunities. That is why we send this plea each year.
I earned my Walk Tee Shirt!
Striving to become Grand Club member
I raised $1,000 and became a Grand Club Member!
Share Your Encouragement
|4/27/2019||Rose Bowl||8:30am - Registration Opens ~- Resource Fair Opens ~9:30am - Opening Ceremony ~10:00am - 5K Walk Begins, ~Short Route is Available ~11:00am - Finish Line Celebration ~1:00pm - Event Ends||Tamra Mariott 323-297-4737 LAWalk@autismspeaks.org|
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