This guest blog is by Lora Kebbati, an annual walker at Nantucket's Walk Now for Autism Speaks Event! This post was originally posted in The Inquirer and Mirror. The 2013 Nantucket Walk will occur this Saturday at Jetties Beach on Nantucket Island. You can read more on the walk here.
One of the highlights of the summer for my family is the Nantucket Walk Now for Autism Speaks. A fun and worthwhile community event on the island, it also serves as a bittersweet anniversary of our family’s personal journey into the world of autism.
They say timing is everything, and so it is with our family and autism. On Aug. 24, 2007 my husband and I met with a team of doctors at a Boston hospital, where we received the life-changing news that our precious baby – our 20-month-old son, Dine (pronounced “Deen”) – had autism. Our worst suspicions had been confirmed. And yet, we felt relieved to finally have an explanation for his worrisome delays and baffling behaviors. We left the hospital that day exhausted and with our heads spinning, hopping into our rental car and heading toward the Cape to catch the last flight back to the island. We drove in almost total silence as the reality of the situation sank in and we struggled to comprehend the written report the doctors had given us: Results of the neurodevelopmental tests, a treatment plan, and a list of recommendations for myriad interventions, therapies and other services and supports. We wondered if we would be able to obtain all – or any – of the items on this checklist in our isolated locale. We were headed into uncharted (and very murky) waters.
Fast-forward 12 hours. The next morning found us on Jetties Beach, gathered with hundreds of others who were there to participate in the inaugural Nantucket Walk Now for Autism Speaks. Surrounded by family and friends, neighbors and visitors, we made the mile-long walk and felt the power of the Nantucket community around us. As we spoke with others on the beach, word of our very recent diagnosis got out, and we found ourselves quickly surrounded by the caring staff of Autism Speaks. We suddenly went from floundering in unfamiliar waters to feeling connected, supported, understood. We had been thrown a life raft.
On Nantucket it’s often said that “everyone knows everyone.” Though sometimes seen as a double-edged sword, it really works for our family. Nantucket is fortunate to have its own autism resource center and is home to amazing organizations that provide education, respite, therapeutic programs and adapted-sports activities for our special-needs population and their families. We are so lucky to have these local treasures and the skill and compassion of those who work and volunteer for them.
Our close-knit community is also abundant with many “Dine-friendly” venues: stores, movie theaters, restaurants and other businesses. The individuals who work in these establishments are not specially trained in dealing with autism, yet they welcome Dine with open arms, treating him not as a kid with special needs, but just a kid. This type of inclusion is what every child needs and deserves and is one of the upsides of small-town living. They say “it takes a village,” and our village is the very best.
Dine has come a long way since that first walk in 2007, and we could not be more proud of his accomplishments. He remains challenged by many of the hallmark symptoms of autism: attention problems, repetitive and unusual “stimming” behaviors, narrow interests, limited social interaction and a variety of physiologic issues.
As his parents, our highest priority is to ensure that these concerns do not overshadow or eclipse Dine’s many successes, or interfere with his happiness. He has a way to go – the rest of his life – and we know his love of hard work and his joy for life will take him far.
As he prepares for the promise of a new school year, our family continues to hope for what we call the “Three C’s:” a Connection, a Cause, and dare we say (some day), a Cure. As we witness the transforming effects of autism awareness locally and globally, and the gains made in science and research, we are confident that we will continue meeting the daily challenges while achieving even greater goals in Dine’s lifetime.
Our family is ready to walk the Walk: We’re putting on our blue, lacing up our sneakers, and heading to the beach. It’s only two days away, and we’re excited! It’s our family’s seventh Walk event and a perfect end-of-summer activity: A chance to support a mission that is near and dear to us, an opportunity to share in the fellowship and generosity of our unique community, and yet another reason to celebrate the special (and oftentimes quite typical) little boy we know and love.