How many kids do you have and who in your family is the child with special needs, & how long have you lived in Westport? Eric and I have 3 kids. Elijah is 10, Theo is 9 and Lucy is 4. Theo is on the autism spectrum. We moved to Westport from NYC almost 10 years ago.
What is the biggest challenge in taking care of a child with special needs to date? Safety. Theo is a highly curious child, always exploring, running, jumping and climbing. He’s into everything, yet has little fear and even less a sense of danger. We worry he’ll unbolt the door, go outside on a whim and we won’t be able to find him, or that he’ll bolt across the street without concern for passing traffic. For these reasons we cannot leave him alone, except when he is asleep at night. As an example, just a few nights ago he removed the screen on his bedroom window and figured out how to open his locked window for the first time. In the morning his window was wide open and his stuffed animals were on the roof outside his window. He was super proud of his accomplishment. Eric and I were horrified, with visions of Theo climbing on our roof in our minds. Eric removed the window crank as a temporary fix, while we figure out a way to prevent this from happening again.
What do you enjoy most about having a chid with special needs? Theo is so much more than a child with special needs. He is so bright and we are constantly amazed by his gifts and talents, and how hard he works to overcome his challenges. He is special in that he has the most delightful, sweet demeanor. He is just so loving, affectionate, kindhearted, gentle and angelic! His smile lights up the room and his giggle is infectious. He brings more joy and unconditional love to our family than I could ever put into words.
How has your own life been impacted after having a child with special needs? There’s no way to couch that having an autistic child is hard. Theo requires an immense amount of attention and support. He has also had irregular sleeping habits for the past few years, so we are frequently awakened and exhausted. We also can’t do many things as a family that others can – and when we do plan anything from a simple family outing to a family trip, we must prepare carefully and thoughtfully. But it also means an appreciation for the most important things. And over the years, many friends have shown beautiful hearts with their gestures and support. It’s impossible to know what it’s like to live with an autistic child, but those who extend themselves to help Theo or boost our days really demonstrate why they’re such cherished friends.
How has having a child with special needs impacted your other children? Elijah and Lucy are undoubtedly better people for having Theo as their brother. They love him so much and completely accept him for who he is, with all of his differences and quirks. They are both acutely aware of the challenges he faces each day, and they are eager to applaud his successes and help him when he needs it. They are so compassionate and they really understand him on a deeper level. It’s sweet to see Elijah be an instructive and doting big brother, and mind-blowing when Lucy extends herself, at just 4! It’s an incredible bond.That said, there are aspects that are really hard on both of them too, of course, more so with Elijah. Elijah wishes he had the type of relationship that many of his friends have with their brothers – playing sports in the yard, playing video games together. Normal stuff. He longs for a playmate at home. Elijah will always fiercely protect Theo, but their relationship is not typical. He also has a lot of sadness around what he can do that Theo can’t. After overnight camp, Elijah shared that he felt painfully guilty for having such an incredible experience, knowing that Theo most likely would not be able to go to sleep-away camp. He has so much empathy and I’m certain that his sibling relationships are shaping the man he’ll be one day.
What helps you relax and de-stress? I love walking at Compo Beach by myself; it’s completely meditative. I stare at the water, the sand and the seagulls, and think how lucky we are to live here. It never gets old. I enjoy walking with friends too, but there are moments I just want to slow down and breathe in solitude. I also love massages, so a deep tissue massage at Dream or a visit to Sun Reflexology is heaven.
What is the best piece of advice you have received on this journey of uncharted waters? When Theo was really little I would wonder far into the future – will he go to overnight camp? Will he go to college? Will he live independently? Will he get married and have kids? And a friend made me realize that just because that’s a “typical” path many people take, doesn’t mean that Theo will want any of those things. All that matters is that he is happy and that he continues to live a life that makes him happy, whatever that looks like. This changed my entire perspective.
How are you involved in your local special needs community? Over the years, I have met some of the most spectacular and strong moms in the local special needs community. Connecting with others who “get it” is everything. It’s not a club that any of us signed up for, but there’s so much support and comfort in being surrounded by people who face similar challenges and truly understand. Venting, crying, celebrating small victories, worrying, researching, analyzing, de-stressing – all of it – together.
If there is 1 thing you hope people can take away from your story what would it be? There’s a saying – “if you’ve met one person with autism, you’ve met one person with autism”. This is a really important point, because there’s great diversity within the autism spectrum, and like so many others, Theo is no more special needs than he is special. We really feel that deeply, and people who have gotten to know him feel the same. It’s ultimately a blessing. He is a gift.
