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The Challenges and Joys of Caregiving for a Grown Child With a Disability

How caregivers can manage expectations, prioritize self-care and find the right support network

spinner image The O’Connor family, left to right: Bill, Erin, Eileen, Will, Patrick and Jay
The O’Connor family (l-r): Bill, Erin, Eileen, Will, Patrick and Jay.
Courtesy Eileen Flood O’Connor

“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’

spinner image Eileen and Erin O’Connor on Cape Cod in 2008
Eileen and Erin O’Connor on Cape Cod in 2008.
Courtesy Eileen Flood O’Connor

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.”

Fight for the services you need

Valarie Drown, 50, from Plattsburgh, New York, is a licensed mental health counselor and director of the Alzheimer’s Disease Caregiver Support Initiative and the caregiver wellness and respite center in Plattsburgh. She is also the mother of Cale, her 16-year-old disabled son, who was adopted at 8 months old.  

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At age 6, Cale was diagnosed with mental and physical developmental disabilities. Ultimately, the doctors would determine that he suffers from six mental health disorders. The family’s primary care doctor told Valarie that the public school would have concerns about him, and that it might not be possible for him to attend. She was determined to do all she could to give Cale the life she’d imagined for him, but by age 12, he needed to be placed in an in-patient facility.

“We live in a fairly remote place that is hugely under-sourced when it comes to access to mental health care, so the nearest child psychiatrist was two hours away,” she says, discussing one of the many challenges she has faced with her son.

spinner image Tyson, Cale and Valarie Drown at their home in Morrisonville, New York in 2015.
Tyson, Cale and Valarie Drown at their home in Morrisonville, New York in 2015.
Courtesy Valarie Drown

In November 2018, Cale woke up agitated. “I was sitting on the couch in the living room,” recalls Valarie, the memory bringing tears to her eyes, “and he slipped a rope around my neck.” Later that day she admitted him again to an in-patient ward.  

“Cale didn’t come home after that,” says Valarie. He was transferred to a few different hospitals, then into residential placement; the closest was in Yonkers, New York, a five-hour drive from their home. Valarie and her husband, Tyson, 48, made the trek to visit Cale every other week for two years. “One time he had strep throat,” she recalls, “and no one let us know. After a round-trip, 10-hour drive, we were only able to see him for 30 minutes.”  

Valarie continued to fight to get Cale transferred to a facility closer to home. “I felt like I was losing him,” she explains. “I just kept thinking that there must be a point in time when a child feels abandoned, and from that point on, it’s probably impossible for him to recover. I finally got him home in June 2022, but finding the right services has been and is still a struggle.”

Understand the importance of good friends, self-care

Like so many parents of a child with a disability, Valarie finds little time to care for herself. Her primary health care physician has been persistent about talking to her about self-care. “I’m working hard to try to focus on me,” she says, “which is the last thing I want to do. I’d rather spend my energy focusing on the people I love, but I know that’s detrimental in the end.” 

Valarie finds support through close family and friends. When Cale was admitted into residential placement, it took her a year and a half to even talk about it with her small circle of girlfriends, and even then she used humor to survive. “I find a lot of casual friends try to tell you how to be a parent or that what you’re doing is wrong. Most of them are clueless, and it’s more frustrating than it’s worth,” she says. “I surround myself with the people who know my story and don’t ask a bunch of questions. Those are the people that I need around me.”

Cale’s transition home was slow, and he struggled at first. But in recent months, Valarie has had reason to be hopeful. Health-wise he is stable, and he has been on a good medication regimen. Her son is in a special education program and just got a work-study spot at a local store, stocking shelves with a work coach. “They said he would never hold a job,” beams Valarie. “The fact that he has to wear dress pants and sneakers is huge!”   

“I’ll never feel that I haven’t done as much as I can, and that’s what’s important to me,” Valarie says. “As caregivers, we often feel that we aren’t strong enough. I want to remind caregivers that there is strength in love. This strength is still present in our hard times, sadness, fears, joy and in our heartaches. The love that I feel for my son is overwhelming, and that makes me a powerful caregiver.”

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Adjust your expectations and outlook

From the moment of her son’s birth, Rachel Ablondi, 52, from Mount Airy, Maryland, knew that something was wrong with Andrew, now 23. Although he was born full term, he had an undiagnosed brain bleed at birth and spent 14 days in the NICU. At a year, he began having infantile spasms, which led to brain damage, and he was finally diagnosed with Lennox-Gastaut syndrome, experiencing daily seizures. 

spinner image The Ablondi family, left to right, Amelia, Ava, Rachel, Dave, Jenna, Andrew at Lake Winnipesaukee
The Ablondi family, left to right, Amelia, Ava, Rachel, Dave, Jenna, Andrew at Lake Winnipesaukee
Courtesy Ablondi family

Andrew has never met any developmental milestones; he has never sat up or walked. He has visual impairment, is nonverbal and is in a wheelchair, and yet from Rachel’s tone and clear recitation of her son’s limitations, you know that Andrew’s cerebral palsy has met its match. 

“As a new mom, I didn’t know anything. The doctor and therapy appointments were constant,” she says. “We crisscrossed the country trying to get opinions, answers, and to figure out how to get him services.” 

As the years passed, the Ablondis had three more kids, now 19, 17 and 13. “Our goal was to keep the family as normal as possible,” Rachel says. “This is the only family life we have ever known, and [the kids] have adapted to their special-needs brother.”

She eventually accepted that “Andrew was just going to be Andrew.” He would never walk, and he would have a seizure every day. “You have to adjust your brain and your outlook,” says Rachel. “I don’t spend all my time going to the doctor or fighting for this or that. It’s all about living a life. I just want him happy, healthy and comfortable; I’m not going to beat myself up over it anymore.”

Grab ‘snatches’ of time for activities that bring joy

Rachel is thankful that Andrew travels well, and they can all go out in the community and do things together. He attends a day program and was able to go to school till he was 21. She calls her acceptance a mindset change that, as she ages, comes as a bit of a relief. 

“I’m so fortunate to have a husband who is here with me, but it’s certainly not what I imagined when we got married,” she reflects. “I didn’t picture myself driving a wheelchair-accessible van.”

One of her secrets to staying content is that she and her husband, Dave, 54, give one another time to take breaks. She goes away for weekends with girlfriends; he likes to fish. “One person needs a total 180-degree scenery change, and for the other, it’s nice to have one-on-one time with each kid.”

“I can’t focus on caregiving 100 percent, or I’d go crazy!” she laughs. “I try to focus on other things, like volunteering, my other kids’ activities, exercising, cooking and thrift shopping in small snatches. I also find comfort in completing tasks that I can start and finish, like housework, because it has a stop and start, unlike my son’s care.”  

Caregiving Advice From the Front Lines

  • This is a round-the-clock, life-long commitment. Find activities so you can keep a sense of yourself. It could be running, meditating or just going outside in the yard.
  • Connect with parents going through similar journeys. That support and familiarity builds a strong community.
  • Life goes fast. Take focused time with your other children and your marriage.
  • If you are able, plan ahead. Establish some kind of trust or savings to help provide for your child when you are gone.
  • Sign up for any extra services in your community, state or federal as early as possible. Your child may not need them until later, but there are often long waiting lists. 
  • You know your child best. If it feels like you are spinning your wheels at appointments or with doctors, ask yourself, “What are we gaining here?"

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