Posted June 25, 2019 in Articles
I was a regular parent, but now I’m special. Lots of qualified people tell me so. First the pediatrician, then the school psychologist and speech pathologist. Even a stranger in the grocery store parking lot pointed it out by stopping her car, opening her window and directing me to the nearest hospital, because that’s the solution the mother of a toddler in sensory meltdown (not to be confused with tantrum) wants to hear.
Finally, a neurologist confirmed what I already knew — I’m special. Actually, my child is. So that makes me a special parent. Some use the term “special needs,” but I prefer “special” for now. You see, it’s a spectrum. We may be near the cusp of it depending on who you ask. Nonetheless, a diagnosis of autism spectrum disorder (ASD) is life-changing, and the unique strengths and challenges that accompany this complex neuro-developmental disorder have changed the lens through which I view the world.
ASD affects an estimated 1 in 59 children in the U.S. (about 2 in every classroom) and over 40,000 children in Ohio, so it’s a big deal. According to Autism Speaks, ASD refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. It’s often accompanied by sensory sensitivities and other medical challenges, such as attention issues. Just as there is no one type of autism, there is no one-size-fits-all approach to intervention, making it that much more confusing to navigate as a parent. Its invisible nature often leads society to expect neurotypical or age-appropriate behaviors from individuals who are simply wired differently and reaching developmental stages/milestones at their own pace.
At the 17th annual Milestones National Autism Conference (MNAC), I didn’t feel special, different or left out, as I often do. There, I felt part of a community, like we were all pieces of a puzzle coming together to create a masterpiece for greater good. It’s empowering to stand in a convention center with 1,200 others who share your passion, understand your struggles and celebrate similar wins.
At this, my second MNAC event, I met individuals on the spectrum, professionals (intervention specialists, behavior analysts, speech pathologists, certified PLAY Project consultants, etc.) pursuing continuing education, and parents at various stages on this journey. I related to an emotional mom struggling with a new diagnosis and received encouragement from a seasoned ASD mom who started a business based on the needs of her now thriving adult son. I also connected with a speaker, teacher/coach, author, and mother of nine children, several of whom are on the spectrum and/or deaf. A beacon of light, the practical strategies April Tribe Giauque shared with me last year have been instrumental in turning everyday tasks, like making pizza and smoothies, into relationship- and skill-building opportunities for my family. No parent can understand the longing to connect with their child in the way an ASD parent does, or relish in the hard-earned moments of shared joy.
Whether you have a child with developmental delays awaiting an ASD evaluation, young adult transitioning out of high school, or are somewhere in between or beyond, the conference offers something for every ASD parent or caregiver. More than 50 exhibitors ranged from private schools and therapy centers (Applied Behavioral Analysis, music, etc.) to family law practitioners and other specialized service providers, supportive technologies, booksellers and more.
I attended nearly a dozen of the 90+ breakout sessions offered over two days and learned evidence-based approaches and tactics to implement the right way. My sessions included navigating sensory challenges and regulation in children, implementing mindful movement/yoga, increasing executive functioning skills, and play development. Other topics ranged from disability benefits and employment transitioning to housing options, managing social anxiety and deep dives into mental health.
The conference is located at Cleveland’s I-X Center near the airport, which is both convenient and tempting for local moms in desperate need of respite (wink), but I stayed grounded thanks to the connections made and the hope that came with building a village to raise my child. Every child needs support, especially those on the spectrum. This point was made by both conference keynote speakers.
A few keynote messages resonated most with me:
Speaker Michelle Garcia Winner emphasized that we must consider how someone perceives the world and where they are functioning to help them learn and grow. When we think about the behavior we see as the tip of an iceberg, we realize how quick-judgement (remember the lady at the grocery store?) and responding to behavior alone ignores a person’s underlying thought process, sensory processing challenges and more. (For example, think about the grocery store’s “perfect storm” of lights, smells, sounds and crowds.) Garcia’s Social Thinking model involves attention, interpretation, problem solving and responding, and she created a whole curriculum around these concepts.
Speaker Haley Moss recently gained notoriety as the first openly autistic female attorney in Florida. Media also has introduced us to Rachel Barcellona, the first woman with autism to compete in the Miss Florida pageant, and Kodi Lee, the blind singer/pianist with autism who advanced on America’s Got Talent — all individuals paving the way for acceptance, inclusion and understanding. However, as Moss pointed out, our goal is to reach a place where achievements like these are no longer news — where they are celebrated not despite an ASD diagnosis, but rather WITH one and all the benefits that come with neurodiversity.
I left the conference empowered with a stronger village, inspired to advocate, educate and help change the mindset and narrative around this diagnosis to focus more on the spectrum and less on the autism, and more on strengths (attention to detail, memory, visual skills, honesty, etc.) than challenges. To quote Temple Grandin, “the world needs all kinds of minds,” and I’m proud to be raising two different and equally valuable ones.
For autism resources and more information on the 2019 conference, visit www.milestones.org.
Disclosure: I received complimentary attendance from Milestones. Opinions reflected here are my own.