Team Bluey Story
My family and I are going to be participating in the Autism Society of Greater Akron Step Into Autism Walk - Stark this June 2025 for the 3rd year in a row. This year is special for Pierce and my family. After a few years of being on wait lists, Pierce was officially diagnosed with autism spectrum disorder last year. This diagnosis has helped Pierce so much by giving him access to more therapies and programs that he wouldn't have had otherwise. Before his diagnosis, Pierce had already been part of Norton Primary’s special education program receiving services under the category of autism starting when he was 3 years old (or old enough for preschool.)
Even though Pierce’s diagnosis is new, we have always noticed different strengths and challenges in Pierce’s development along with autistic traits and personality traits that led us to believe he was autistic. I am not autistic. I can’t speak for autistic people, and I can’t speak for all autistic families. Every autistic person and their situation are unique. I can speak about my experience as a mother of two children, one who is autistic and one who is not. I love both of them so much! I believe they both deserve to be happy, be respected, be included, and to feel like they matter and aren’t seen as “less than” others. Having a child who has a developmental disability comes with so much happiness, but also with worry and concerns.
Pierce is a 6 year old boy who loves his family and friends, loves school and learning, participates in cub scouts, loves nature, enjoys camping and hiking, has the best memory I’ve ever seen, loves swimming (and after SO much work and years of lessons including private lessons learned to swim last year), loves travelling especially to cities and national parks, has a great singing voice with an intense love for music, cares deeply about the people around him, is hardworking, and wants to be an engineer when he grows up just like his dad. He has so many strengths and is so sweet and loveable. Since he was a baby, I’ve always called him my little “love bug.” (Demetri is my “fuzz nugget” haha.) On top of all of this, Pierce requires daily support needs and accommodations to help him focus, feel safe, to communicate, to feel regulated, to learn, to do daily tasks, to ensure his safety, and SO much more. Our family and all of the people and organizations around us supporting him put in so much time and hard work, and I’M SO GRATEFUL.
For people who aren’t familiar with all that goes into raising an autistic child I can give examples from my experience with Pierce. Please remember Pierce is verbal with language and communication disorders and is ASD Level 1 so he is considered needing the LOWEST support (there are also levels 2 and 3, people considered profoundly autistic, and autistic individuals who are non-speaking/nonverbal.) Pierce needs daily and monthly visual schedules for predictability in his routine. He requires social stories and other visual stories for learning and doing new things. When we travel Kyle gets maps and plans the trips to every detail we can, and I create a trip visual story and include other visual supports. He wears noise cancelling headphones every day. He is scared of the noise the heater makes in our house and needs a noise machine to sleep at night. He has to have his food cut up on a daily basis for school and home to avoid choking, social interactions with kids at school or with friends is difficult and leads to confusion for him (can even make him upset,) and he has an IEP at school which includes speech, OT, PT, intervention, and access to an aid. Pierce also does OT and speech outside of school. Teaching Pierce new tasks and new concepts can require a lot of repetition and patience. We use hand gestures and some ASL in our home, and we have sensory equipment in our playroom he has access to as needed for his severe sensory difficulties. When Pierce has anxiety or meltdowns, we are always patient, respectful, and kind. Pierce has daily worries, concerns and things that make him feel unsafe or sad and we always take the time to sit and listen even if it’s hard to understand. We attend disability organization events, ASGA and Summit DD events, safety courses, and learning courses on a monthly/yearly basis, because not all events are inclusive to people who have developmental disabilities, and we want to be the best parents we can be. I have weekly/daily conversations with Demetri about his relationship with Pierce, and we make sure Demetri’s needs socially and emotionally are getting met. My kids love each other, but it can be difficult raising one autistic child and one nonautistic child who loves constant social interaction which he doesn’t always get at home from Pierce. I could go ON and ON, but I just want people who aren’t in our position to understand how important all of the support we receive is to Pierce, Demetri, and to our family.
Lastly and most importantly I want to give a shout to all the people who help Pierce “run his own race” as well as Demetri and so many other children in our community and area. This year was really tough for our family. Demetri was starting preschool for the first time, Pierce’s transition to kindergarten was very difficult and caused us so much stress and worry, Pierce was diagnosed at the beginning of the school year, and at the same time I was experiencing concerns with my own health that led to me being diagnosed with a non-life-threatening chronic illness. The days where I had testing or a procedure or just didn’t feel quite like myself from my symptoms and treatment, we had a great support system there helping us or people just being kind and understanding. Thank you to our immediate family, all other close family, our close friends, family friends, the entire staff of Norton Primary School, Pierces OT and SLP outside of school, to our kind neighbors and community members, to the Summit County DD Board, and to the ASGA.
This is why we walk this June as Team Bluey! Thanks to the ASGA, Pierce is attending a water safety course this spring, we have access to learnings and connections within the autistic community, and we have so many inclusion-friendly events we can attend! Funding organizations like this helps families like mine, and it helps autistic individuals and families who are looking for resources to support the needs of themselves, caregivers, or people raising a child with a developmental disability. Pierce is even attending a summer camp for a few weeks this year thanks to Summit DD which is sponsored by the ASGC. Please consider walking with Team Bluey in June. We would love to have all of you! Please share our story or donate to our ASGA Step into Autism Fundraiser if you are able.
Thank you so much from Sarah, Kyle, Pierce, and Demetri Scott
Step Into Autism is ASGA's signature and largest fundraising event. Individual donors provide 70% of the funding that supports programs and services throughout Northeast Ohio.
ASGA's mission is to "Create connections, empowering everyone in the Autism community with the resources needed to live fully." Please help me support individuals and families living with Autism.
If you would like to learn more about ASGA, visit their website at autismakron.org.
Any amount helps to get us closer to our Fundraising goal
Thank you in advance for your support of this great organization
