AARP Eye Center
“You might want to think about having other children to help when you and your husband are gone.”
Eileen Flood O’Connor, 53, from Rye, New York, remembers her head nearly exploding when she heard those words from the doctor who diagnosed her then 22-month-old daughter, Erin, with a spectrum disorder caused by a rare chromosomal abnormality. At the time she had a 5-month-old son, Will, and she recalls a sense of dislocation and disbelief as she tried to digest the scale and scope of Erin’s condition.
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Today Erin is 21 and she has three younger brothers, all of whom will be there to help. Eileen and her husband Bill, 53, know that independence is out of the question for their daughter; she will need support and care for her entire life.
‘It’s a full-time job’
Erin suffers from epilepsy, and the seizures can come out of the blue. “I’m always waiting for the other shoe to drop,” says Eileen. Balancing being a mother and caregiver to a child with a disability and one to her three boys is challenging and exhausting. “You can add on as many extra hands or caregivers as possible, and it is all still a house of cards,” she says. “It’s a full-time job to make sure the person you love is getting the care they need, let alone how challenging it is to find resources, programs and placements.”
Thinking about what the future holds for their children as they become adults is one of the scariest parts about being the parent of a child with a disability.
“When you have a developmentally disabled child, a part of you does not want them to grow up. Watching their body outgrow their mind and ability to reason brings with it a terror all its own,” says Eileen. “You want to push the pause button — or, better yet, hit rewind.”
Eileen recalls how when Erin was small, lots of her behaviors could be passed off as “typical” for small children, including the meltdowns and tantrums where they could simply pick her up and remove her from the situation.
“Erin is stronger than I am now,” she acknowledges. “She can’t be quickly removed in what we’d perfected as our ‘nothing to see here’ moves.”
Find joy in the little moments
Despite these concerns, Eileen sees and appreciates the joy her daughter brings. “Erin points out moments that take your breath away every day,” Eileen says. “She sees life very differently; when the wind blows, ‘the trees dance.’ She finds joy in books, songs, the family’s dog, Leo, and that perspective is very important. It centers us.”
Eileen is conscious of the high divorce rate in the special-needs community. “A disabled child takes a formidable toll on a marriage — physically, emotionally, financially,” she says. “Bill and I are fortunate to have an exceptional network of friends and family to fall back on, and it’s still not easy. We’re blessed in many ways, but her diagnosis terminated many of the unspoken hopes we had for our daughter. How a couple confronts the unique behavioral, medical and psychological challenges that this entails is something no support system, however wide or deep, can ever really answer.”