Caring for Chris, A Father’s Love for His Son
For most parents, raising kids is a lifelong learning experience. One thing they learn is that they will never be done parenting. Even when the kids aren’t kids anymore, the loving and caring and worrying continue.
This was certainly true for Jim and Kathy Luongo, who were married for 40 years before Kathy died in 2019. For 35 of those years, they cared for their son Chris, who has autism spectrum disorder (ASD) and Klinefelter Syndrome, a genetic condition that causes weak bones as well as social and emotional challenges.
“His first few years, he was in and out of the hospital all the time,” Jim explains. “We didn’t know if he would talk or walk; back then they used the word ‘retarded.’ He didn’t walk until he was 3 or 4, and he had braces on his legs.”
Chris has two older neurotypical brothers. “He was always very happy to be with his brothers,” says Jim. “We used to go on vacation up to the White Mountains. All three boys were always with us for these vacations. We never left Chris.”
His brothers grew up and moved away, but Chris remained at home with his mom and dad. He was able to attend school until he turned 22. After that, he began riding along in the school bus that Jim drove every day.
“Chris enjoyed that,” Jim remembers. “He would have ridden on that bus 24 hours a day. He would sit in the first seat to my right so I could watch him. He was always smiling. When kids got on, he would give them a high five. He would do it again when they got off. When Chris didn’t ride on my bus, the kids asked about him. We were a happy family on that bus. Chris didn’t like weekends because we didn’t go on the bus on weekends.”
Over the years, Chris grew to be a very large man who was unable to walk on his own or feed himself. At home, Jim and Kathy fed him and were able to move him around with the help of a wheelchair. But they were getting older and frailer and becoming unable to care for Chris – especially when he exhibited challenging behavior such as falling to the floor in protest when he didn’t want to do something.
One time when he did this, Jim couldn’t pick him up and had to call the fire department to help get Chris back into his wheelchair. They called an ambulance and Chris was taken to the hospital. From there, he was transferred to a local hospital closer to home, where he stayed for more than a year. Jim and Kathy visited him once or twice a week and called him regularly. Chris is non-verbal, but he did recognize their voices and he could say “mama” and daddy.” Sadly, Kathy died while Chris was hospitalized.
It was around this time that Chris was referred to May Institute for residential services in one of its group homes on the South Shore. Jim Davis, a May Institute Director of Residential Services, and some of his staff started visiting Chris regularly at the hospital.
“This is what we do when there’s a referral,” explains Jim Davis. “We get to know people and develop relationships with them. It’s good for us to see folks first-hand, so we know exactly what’s going on with them. Since I live a short distance from the hospital, I was able to see Chris about once a week. As I got to know him, my thought was that he could walk and he could do things for himself, but he just had not learned how.”
Jim and his staff took it slow and easy, getting to know Chris. They found out what he liked and didn’t like, and discovered the best ways to motivate him. This information was very helpful when it was time for Chris to make the transition from the hospital to a May residence.
“I was there when he moved in – it was March of 2020,” says Jim Davis. “When it was time for Chris to take a shower, staff members helped him get out of the wheelchair and walk to the bathroom. He resisted and dropped to the floor. Staff did not make a big deal about this. They gave Chris a little time and then they helped him continue on. It wasn’t easy, but they started having him walk from day one.”
At first, Chris’s dad wasn’t happy that Chris’s new residence was on the South Shore, more than an hour’s drive away from his home. He was happy with the house and with the staff members who were caring for Chris, but not about the distance; it would make visiting his son more difficult.
But the pandemic hit shortly after Chris moved to his May residence, and for quite a while no one was doing much visiting outside of their homes. During the long months of COVID confinement, staff members at Chris’s house drove him to the North Shore so he and his dad could at least see each other on special occasions such as Father’s Day.
Now that Chris is vaccinated and things have opened up a bit, staff members are working on ways to get Chris and his dad together more often. In the meantime, Jim continues to call his son every evening, just as he has done throughout the pandemic.
“When I call him at night, they bring the phone into his room and I talk to him,” Chris’ dad says. “He likes me to talk about his mother. He loved his mama very much and he remembers her.”
“When he hears his dad’s voice, he smiles and gets excited,” Ron-Da Smith-Moore, a staff member who cares for Chris, shares. “You can tell he looks forward to these nightly calls. He has a beautiful smile and a good heart. He enjoys music and car rides and watching car racing and cartoons on television.”
According to Ron-Da, Chris is working hard on walking, expressing himself, and learning bathroom skills.
“I’m surprised that he’s made such great progress in such a short time,” she says. “My hope for Chris is that he can become more confident in himself and continue to become more independent.”
“I wish he could do more things for himself,” Chris’ dad says. “I know he can never be on his own. Hopefully he learns to feed himself - to be able to use a fork and a knife. I just want for him to be as independent as much as he can.
“It’s been a long, long road. His mom and I didn’t mind because he was ours. I miss him right now, but I know I can’t take care of him. I’m getting old. He’s getting stronger. Years ago, people in our family said we should give him up. We couldn’t do that; he’s one of us, he’s our family. He’s always going to be my son.
“Everything has turned out all right. I know he loves the staff at May. I can tell. They care about him, and he cares for them. That’s what I love to see; Chris caring for others.”