KELLY MCEVERS, HOST:
From the studios of NPR West in Culver City, California, this is ALL THINGS CONSIDERED. I'm Kelly McEvers. This weekend, NPR is bringing you stories about families who provide long-term care for relatives. Here's a surprising number - an estimated 17 million people in the United States are taking care of children with special needs. That could be anyone from a kid with asthma to one with cerebral palsy. Depending on the severity of the diagnosis, the work can be grueling. And now that kids are living longer, it's raising questions for their caregivers about how to plan for the future. Katie Orr with Capital Public Radio in Sacramento reports.
JUDY LEE: Hi Justin.
KATIE ORR, BYLINE: Judy and James Lee gently rouse their son Justin after a relatively good night of sleep.
JUDY LEE: You're awake. Oh, you're awake. Did you have a good sleep? You slept good last night. I'm so glad you didn't have any seizures.
ORR: A good nights sleep is rare in the Lee house. Justin, who was born missing parts of his brain, also has a seizure disorder which has gotten worse lately. He's often silent during his seizures, which means he has to sleep with his parents so they can tell when he needs help. Judy says caring for Justin is a lot like taking care of a newborn.
JUDY LEE: You're in that kind of survival mode those first few months, where your baby's schedule is your schedule. And, you know, you sleep when they sleep, and you eat when they eat. And all your focus and attention is on them.
ORR: Except Justin is not a baby. He just turned 16 and he weighs 100 pounds. He can't talk. He can't walk and he'll always require 100 percent care. Judy's days largely consist of making sure Justin gets that care. He receives music therapy, occupational therapy and tutoring. Today, it's physical therapy.
UNIDENTIFIED THERAPIST: OK, bend it. Bend it. OK, use it. There we go.
ORR: While some may question what effect all the therapy may have, James and Judy believe it's about giving Justin the best life they possibly can.
JUDY LEE: While physically we know he has so many restrictions, my hope is that cognitively he is able to express what he knows, express his needs and his wants, especially as we get older and other people will be, naturally, having to care for him.
ORR: And Judy and her husband James know that day is coming. As far as they know, Justin has a normal lifespan. But they're both in their 50s and have no other children. James says it's something he thinks about often.
JAMES LEE: I'm sure there's going to come a time when we're need to be going to need to be cared for ourselves. And so there's going to be three of us in here all needing some sort of care. I don't know what's going to happen then. I really don't know.
ORR: Juno Duenas is the executive director of Support for Families of Children with Disabilities.
JUNO DUENAS: One technique we've used here is to bring the community together that knows that youth and have a discussion about - so what are we going to do in the future?
ORR: Duenas says as parents age, it's important to get a support system in place for the child.
DUENAS: And to help that family as - bring the friends and maybe care providers of that youth or other people in the community that might know that youth, to talk about - what are the options and how each of those people might be able to help.
(SOUNDBITE OF CHURCH SERVICE)
ORR: The faith community is a major source of support for James and Judy Lee. Every Sunday, the family attends mass at Sacred Heart Catholic Church in Sacramento. James welcomes people's empathy, but he rejects their pity. He recalled a man at a support group once asking him if he hated God because of Justin's disability.
JAMES LEE: I said no, I'm actually thankful that he chose us to take care of Justin.
ORR: It was faith that helped Judy get through her initial grief and accept Justin's diagnosis.
JUDY LEE: Through prayer, I've been given just the grace and the strength to meet those challenges and to see the positive because there are so many positives. I mean, Justin's a great kid - he's sweet, he's loving. And I can't help but be happy being his mom.
ORR: The Lee's also know they're fortunate compared to other families in their situation. James and Judy have flexible work schedules, enough money to buy Justin the ramps and wheelchairs he needs and each other to lean on. And they hope that will be enough to care for their son for many you come. For NPR News, I'm Katie Orr in Sacramento.
MCEVERS: That story came to us through the Capital Public Radio documentary series "The View From Here."
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