Autism Awareness / Acceptance Month: What I’ve Learned These Last Four Years…

In January 2010 our two-and-a-half-year-old daughter Mimi was diagnosed with Autism Spectrum Disorder/Asperger’s Syndrome. Once we got past the initial shock and grief which is par for the course for any parent who receives the diagnosis for their child, Ray and I tackled it head on. We learned what Mimi’s challenges were and how to address them with an early intervention of speech, occupational, and behavioral therapies. We met other families with children in the waiting room of the therapy center and quickly established friendships for mutual support and information sharing. We became aware of the high incidence of siblings who were also diagnosed with autism and paid closer attention to our younger daughter Samantha’s development.

In some ways, Samantha was very different from Mimi. While Mimi would make no eye contact, Samantha would stare into my soul. When Mimi was fifteen months old she knew her alphabet and could name every color, animal, and shape, but when Samantha was the same age she would just utter sounds. In other ways they were alike, with very similar behaviors due to their lack of joint attention and sensory challenges. When Samantha was eighteen months old, she was given the diagnosis of Developmental Language Disorder and we placed her in speech therapy right away. At a follow-up evaluation a few months later, the neurologist didn’t see enough progress and Samantha was given the autism diagnosis.

The first three years were a blur of running the girls to and from various therapies and their pre-school LEAP program, but in spite of the craziness, we found our rhythm and adapted well. We are so grateful Mimi and Samantha have had a loving and nurturing team of therapists and teachers who helped them to build the connections they needed to reach milestones they might not have acquired without the therapies. Both girls worked very hard to push through their anxiety and discomfort and benefited tremendously from the early intervention. Along the way, Ray and I learned many tools to help us parent them in a way which would ensure their continued success. In 2012, we were extremely fortunate to find the perfect school for Mimi to continue her momentum in Kindergarten, and she has really made amazing strides in first grade this year. There are no words to express how very proud we are of how far they’ve come, and to see the incredible bond between them as “BSF”s (best sisters forever) is the greatest reward in our journey.

What I’ve learned through raising our daughters and being a part of the autism community is that the autistic mind is absolutely fascinating. Our children come from all sides of the spectrum, and present their challenges and gifts in very unique and different ways. Some may struggle with speech, while others shut down due to anxiety or tantrum because of sensory overload.  Each child is different, and by no means less than. Just because a child is non-verbal and displays extreme behaviors, doesn’t mean they lack intelligence or is unreachable. And just because a person appears “normal”, doesn’t mean they don’t have autism. It is our job as parents to help our children reach their developmental milestones, and finding the right therapists and school programs is critical. As one mom told me early on, it’s a marathon not a sprint, and each year brings different challenges as well as breakthroughs.

Yet in spite of the challenges the gifts of autism are endless. Our kids are our greatest teachers in compassion, letting go of expectations, and going with the flow. Many of us can also tell you the cool facts we’ve learned because of our kids’ obsessions- because of Mimi, Ray and I can name so many different dinosaur species now that we could get our PhDs in paleontology, and Samantha always amazes us with her uncanny memory of what we did on specific dates. Taking in how our girls take in the world reminds us to pay attention to the details and helps us to see the wonder in the smallest things. We are so grateful for our girls and I can think of no better way to sum up our experience than by this quote- I adapted the original to fit our family:

“Autism is a journey we never planned, but we sure do love our tour guides.”




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