Family stays active together while seeking tools to provide independence for visually impaired daughter
By Tracy Bennett
“Let’s go for it. We’ll figure it out.” That’s the attitude John and Tonee Schwartz of Independence, Mo., have regarding their two-year-old daughter Macee who is visually impaired. She’s the tough little sister to Anthony, age 5, who has Optic Nerve Hypoplasia (OPH). Blind in her right eye with limited vision and nystagmus (uncontrolled eye movement) in her left eye, she is considered legally blind.
“She tries to be independent. When she’s clumsy she thinks she’s funny. She takes bumps well and is not afraid,” said John. When her big brother plays basketball she wants to be out there on the court, explains Tonee. “Other parents, even with typical kids, freak out if they think the toddler is going to get knocked over,” she said. But the Schwartzes are willing to let her try, even if it means taking a tumble.
People with OPH may also have other brain and hormone abnormalities. Macee has growth hormone deficiency, diabetes insipidus (her body won’t hold water when needed), complex partial seizures, and hypothalamic dysfunction (she doesn’t receive signals that she is hungry or full). “As an infant, she was on a feeding tube because she refused to eat,” said Tonee.
Nutrition remains a top concern for the Schwartzes. “While a normal 2- or 3-year-old goes through stages of being extra tired and not wanting to eat, for Macee this could put her in a medical crises which calls for urgent appointments and labs,” said Tonee.
Like many parents of a child with a unique health condition, you become the expert. Tonee carries an article with her by Dr. Borchert of the Department of Opthalmology at Children’s Hospital of Los Angeles, which provides an excellent overview of the spectrum of the disorder. “I give it to every doctor, nurse or therapist who treats Macee. Often they don’t understand how her health can be seriously impacted,” she says. Get more info at www.onesmallvoicefoundation.org/science_borchert
When Macee was born, the only indication of her condition was that her hormone levels were off. It wasn’t until she was 5 months old that the Schwartzes confirmed the extent of her condition. “She would get very upset when I tried to nurse her when her left eye was against my body,” said Tonee. She still doesn’t like being in the dark, but is content as long as she goes to bed at the same time as her big brother.
Today Macee is treated by a pediatrician, endocrinologist, ophthalmologist, and neurologist. “We went through a lot of doctors. It’s hard to find the ones that want to learn. Some doctors think they know it all,” said John. While he doesn’t discredit the experts, he thinks sometimes it’s better to find a doctor who will partner with you to learn all they can about the child’s condition.
Macee’s seizures and diabetes insipidus are managed by medication, she receives growth hormone injections, and wears glasses to protect her left eye. In 2015, when Macee was 14 months old, she had surgery to correct nystagmus at Akron Children’s Hospital in Ohio. “No one in Kansas City wanted to do the surgery before age 5,” said Tonee. This is just one example of the Schwartzes “go for it” attitude. As a former pediatric nurse’s assistant, Tonee understood the implications nystagmus could have on Macee’s early development. She saw the benefits of having the surgery early as far outweighing the risk.
“No question is stupid. Don’t be afraid to reach out to doctors outside your local medical system or to get a second opinion. And if you don’t like a doctor, switch,” advises Tonee.
Occupational and educational challenges
Any parent will tell you how important play is to the development of a child and choosing the right toys is a part of that. John says they had to think differently about selecting toys for Macee. “The iPad is her go-to toy. Anything with lights and sound appeals to her,” he said. Among the games that Macee enjoys on the tablet are Fireworks, which launches colorful light displays anywhere you touch the screen, and Baby Rattle toy, which features a bouncing star and sound, allowing you to follow the movement and touch the star, to set it bouncing again. She also likes stuffed animals and drawing with fluorescent markers on an LED blackboard.
An invaluable resource has been the Children’s Center for the Visually Impaired, a local organization that offers specialized services for blind and visually impaired children. Their comprehensive program includes services regardless of a family’s ability to pay.
From birth to age 3, CCVI coordinates with Missouri First Steps to provide a certified visual impairment teacher to work with Macee at home once per week. She also attends a pre-school program at CCVI twice a week. Occupational therapists help Macee learn how to walk with a cane, techniques for going up and down stairs, and other mobility and orientation skills. “I’d like her to become independent with a cane first. Maybe later a guide dog would be helpful,” said Tonee.
One of the family’s immediate concerns is selecting the right school district. At age 3, services transition from CCVI to the local school district, which will write an Individualized Education Program (IEP) for Macee. “Some school districts have much better reputations than others for their ability to provide visually impaired students a good education,” said Tonee. To make that decision, the Schwartzes have talked with other parents, special education teachers, and medical professionals. At the time of this interview, they had not yet determined where they might move—wanting to select a district that will meet the needs of both of their children.
First up is tackling potty training. Lack of depth perception makes sitting on the toilet difficult for Macee. As she begins to read, Tonee and John would like for her to learn braille, which they say is on the decline among the visually impaired community. The advent of audio tools and speech-to-text technology, has made many consider braille outdated. But Tonee wants Macee to have as many tools at her disposal as possible. She knows it will be easier to teach Macee braille sooner rather than later. The challenge is funding and finding a teacher.
For this active, sports-oriented family, they also wonder about the possibilities for Macee. “She wants to learn to ride a bike or tricycle, and she has shown great interest in racing go-karts,” said John. “She likes the rumble of the engine and the feel of the ride,” he said. They are also willing to coach a sport so they could make accommodations for her. Content to not have all the answers, the Schwartzes are prepared to figure it out as they go, focusing on providing Macee the tools she needs to become independent.