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Spot of Comfort for Families of Children with Disabilities

Sue Reeves

04/15/2013

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Jace LarsonWith a seemingly boundless sense of humor and a firm belief that it was meant to be, Johna and Don Larson adopted three children with disabilities when they had four biological children at home. Johna, a retired pediatric nurse, and Don, a retired police officer, have used the services of the Center for Persons with Disabilities for more than 25 years. People told them they shouldn’t adopt their youngest son, Jace, who is now 19. “I said to (Dr. Dennis) Odell, give me one good reason why I shouldn’t,” Johna said. “He gave me 11. I had tears running down my face. He talked about the realities of the situation and how fair it would be to the rest of the family, but it just felt like the right thing to do. “The CPD is a spot of comfort. They don’t make you feel dumb or stupid or crazy—and we we get a lot of that,” Larson said with a laugh. “People do think we’re crazy—obviously we are, there’s a screw loose somewhere—but it’s what we choose to do.” Jonathan LarsonJace is the only one still at home. He has autism, ADHD and was physically and sexually abused.  Jace is very healthy except for the autism, Larson said, but has mood and aggression issues so he needs psychiatric and behavioral meds. He is verbal, and is particularly fond of swear words. Jonathan is 24 and had developmental delays. He is small in stature and has a hearing impairment. “Jonathan looked absolutely perfect,” Larson said. “He is the kindest, sweetest, smartest young man. He keeps changing his major in college because he likes everything.” Jordan is 26 and was born with fetal alcohol syndrome, and came home to the Larsons when he was 12 days old. “He looks perfect, but he does have a disability. He doesn’t learn. It’s very tough,” Larson said. “When you look at Jace, you know, but people look at Jordan and wonder why he doesn’t have a job. It’s heartbreaking to watch your kids and know it was child abuse. His biological dad was very bright, but his mom had mental health issues. He would have been a perfect, smart child but his potential is so limited. It’s heartbreaking.”

For years, Larson wouldn’t let Jordan get supplemental security income because she didn’t want him to know he could get money without working for it. “We were working with a therapist, trying to teach Jordan how to take a shower by himself, and the therapist said, ‘What if he can’t?’ I said, ‘He can.’ He said, ‘How long have you been teaching him?’ I said, ‘15 years.’  He said, ‘What if he can’t?’ It took a year of me processing that thought, that he physically can, but he can’t,” Larson said. “I had to be educated.” Jordan and Jonathan were both Odell’s patients at the CPD. Jace has mental health issues and was seeing nurse practitioner George Wootton at Bear River Mental Health. “There should be a law that doctors can’t leave until their patients are grown,” Larson said with a laugh. “We decided to follow him to the CPD rather than break in and train a new doctor.” Larson said CPD staff will refer them to the services they need, or will research books and websites for the particular information she is looking for. “The CPD is there for you,” Larson said. “There’s no runaround. The paperwork doesn’t phase them. I know they care about me, too.” At the CPD, Larson said, the staff looks more at the family as a whole. “People who have children who have disabilities and high medical risks—you get doctored out and you have to be your own medical home,” Larson said. “You need someone to see that child as a whole person and make referrals. If you see a specialist, they’re only focused on their specialty. To these doctors, Jace isn’t different. He’s like every other kid they see.” It’s hard for moms to accept what they’ve been given and to be proactive about what they need to do, Larson said. “The doctors and nurses (at the CPD) are so aware that we’re overwhelmed and grieving the loss of a perfect child,” she said. “In my case, I knew that my children had disabilities, but there’s still grief at the loss of potential.” The Larsons have three grandchildren who are all turning four years old. “I’m watching them all become older than Jace when they tell him what to do, or ‘don’t swear,’ or ‘I think he just messed his pants,’” Larson said. “It’s so hard watching my grandchildren become older than my son. It could be heartbreaking, but I prefer to think that it’s normal, that’s how autism is.” Airplane travel with Jace is difficult, but the Larsons—including Jace—travel all over the country to visit family. Wootton writes the prescription for ‘airplane pills’—valium—for Jace, Larson said. She jokes that if the pills don’t work for Jace, she’ll take them herself. “We are constantly educating people, because taking Jace out in public does make people uncomfortable,” Larson said. “That’s why we have to keep going. It has to get to the point where they’re not uncomfortable, when people hear him swearing or see him doing inappropriate things they can recognize that there’s something wrong and ask themselves if there’s anything they can do to help. We’ll get there. I’m not the only mom out there going through this. People need to know.”

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