Let’s Talk About Ruby

No one said motherhood would be easy. But the financial and emotional challenges are even harder when your child has special needs—and you have to fight to get those needs met. Andrea Goto gets real with photographer Christine Hall.

Photography by CHRISTINE HALL


 

 

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When I knock on the front door of the midtown bungalow, no one answers. The second time I knock a little harder and the mail slot flips opens to reveal a pair of eyes looking up at me.

“Are you sure you’re ready for the crazy?” the voice on the other side asks.

“Bring it on,” I laugh.

The eyes—and voice—belong to Christine Hall, a well-known photographer in Savannah. I’ve had the pleasure of working with Christine on several shoots in the past, but I’m not here for a photo session. I’m here to talk about Christine’s 4-year-old daughter, Ruby, who has been diagnosed with special needs.

I think all kids are pretty special, and Ruby is no exception. When I see her, she’s a bit of a wild woman with her wispy, disheveled hair. She’s wearing just one sock and a white onesie, unbuttoned at the crotch, revealing a diaper. Her tiny frame bounces around the living room, her hands flapping like butterfly wings as Barney plays on the TV. She’s uncharacteristically muscular for her age; her little thighs and calves are rock solid thanks to constant movement. But the most arresting thing about Ruby is her contagious, toothy smile that turns her eyes into small crescents.

“She’s tired,” Christine explains. Ruby has already been to school and therapy. Her twin sister, Ava, sits on the enclosed porch, make-believe playing with her plastic ponies. In about an hour, their 10-year-old sister, Alexa, will walk home from the neighborhood school down the street.

Christine apologizes for the current condition of her house, children and self—none of which strikes me as out of the ordinary, unless “perfect” is par for the course these days. That’s what I like about Christine and why I want to talk with her. She’s a real mom—a mom in the trenches. And while she apologizes, she only halfway means it because she knows better than most that the perfect house, kid and self is the life we imagine, but rarely, the one we live.

“If your life doesn’t look like the Pampers commercial, it hurts,” Christine explains. “At first you mourn the child that you thought you wanted—the kid that jumps off docks and has all these friends.”

 

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The Diagnosis

Initially, Ruby was labeled as “significantly delayed” through Babies Can’t Wait, a state program that provides screenings and resources for children under the age of 3 with developmental or chronic health conditions.

“This [diagnosis] made me think that she’d catch up,” says Christine. “But I don’t think—” she trails off, unable to say what no one wants to believe about their child.

By 3, Ruby still hadn’t met certain developmental milestones, so Christine and her husband Scott took their daughter to meet with doctors at Louisiana State University. There, Ruby was diagnosed with autism and cerebral palsy. She’s labeled as being nonverbal and requires constant supervision. The doctors told Christine and Scott that their daughter will always be dependent on them.

“I could feel the heat rise up the back of my neck,” recalls Christine. “It’s like everything I feared when I was pregnant was coming true. At first, you just feel like you’re drowning.”

 

A Growing Concern

The rate of children diagnosed with autism spectrum disorder is on the rise. “The numbers used to be 1 in 400, 1 in 300, then 1 in 150,” notes Dr. Ben Spitalnick of Pediatric Associates of Savannah. “They’re saying the number now might be like 1 in 80 kids.”

Of course, this statistic begs the question, is the rate of autism going up or is the diagnosis changing from what used to be other things? “I don’t know if they’re doing a better job identifying autism or if they’re doing a better job calling things autism that were being called something else, like what they used to identify as special needs, learning disabled or ADD,” says Spitalnick.

Even though pediatricians get limited time with patients, Spitalnick, who does not treat Ruby, points out that doctors should still be able to pick up on markers that may suggest autism spectrum disorder based on required developmental screenings at 18 months, 2 years old and 2½ years old.

Ruby sat up at the expected time but quickly fell behind; she did not walk until 21 months and she was not communicating. But even before Ruby started exhibiting physical behaviors associated with autism—like spinning balls, walking on her tippy toes, lining objects up and flapping her arms—Christine admits that she knew something was up as early as 7 months.

“I remember Scott came up to me teary-eyed and said, ‘I think something’s wrong with Ruby,’” she recalls. “And I was just like crap, he sees it, too.”

Prenatal tests and screenings didn’t send up any red flags. In fact, Christine’s pregnancy with the twins was textbook until 37 weeks, when her doctor discovered that Ruby had suddenly stopped growing. Christine underwent an emergency C-section. Her doctors aren’t sure why Ruby stopped growing, or if that’s in any way related to developing autism or cerebral palsy.

“There’s not really even a known cause [of autism],” Spitalnick explains. “It’s believed that there are genetic predispositions for autism, but there’s not a diagnostic test that you can take to see if you have it or not. There’s not a pill. There’s not a treatment. Over the years, that’s one of parents’ biggest false hopes. Every so often they come out with a promising new medical therapy or drug that will ‘cure your kid’s autism,’ but none of them have ever worked.”

That said, early intervention in the form of occupational, physical, speech and behavioral therapies can help.

“Autism is a communication disorder,” notes Spitalnick. “It’s not really an intelligence disorder, because a lot of kids with autism are brilliant. They have trouble with language and abstract concepts. They have trouble understanding emotions or purposes.” Spitalnick cites Applied Behavioral Analysis (ABA) as the cutting-edge therapy designed to help kids with autism learn how to understand social cues and better fit in socially.

“That’s sort of the goal—to help them communicate in a meaningful way that other people will understand,” Spitalnick says.

Although labels are needed in order for insurance to cover many goods and services a child with autism and other special needs requires, the diagnosis for autism spectrum disorder, in particular, does not come quickly.

“There’s a real shortage of what they call developmental specialists [to make a diagnosis], such as developmental pediatricians,” says Spitalnick. “And it’s just impossible to get in. It takes about a year.”

 

Searching for Assistance

And then there’s the paperwork. Christine’s dining room table is covered with notebooks filled to capacity with diagnoses, evaluations, progress reports and even Ruby’s schoolwork—the collection of “proof” needed to qualify her for the resources she needs. Today, Christine is in the process of trying to get Ruby qualified and enrolled in the Jump Start program for children with special needs, where the teacher-to-student ratio is smaller than the Preschool Intervention Program her daughter currently attends three mornings a week. But openings for enrollment are very limited.

“I know Ruby isn’t going to be valedictorian; I know she’s not going to be typical,” Christine acknowledges. “But if having her and talking to other mothers has taught me anything, it’s that I have to push harder because I have to for her.”

Often, parents of children with special needs are pushing for resources that are severely limited in the state of Georgia.

“We are still in the bottom 10 percent of support for people with disabilities compared to other states,” says Lynnette Bragg, the founder and CEO of B and B Care Services.

B and B Care Services functions as the regional “middle person” between families in about 132 counties and the resources available through the state. “The dollars flow through us, and we, in turn, connect families to goods and services throughout the community,” Bragg explains. “A pretty intensive family support plan is developed and with that is a budget. We can sit down with families and see what they need and try to put some dollar amounts to it and let them prioritize to us how they would like to spend their money within the caps that exist.”

Bragg founded the company in 1999 after having difficulty obtaining services in rural southeast Georgia for her eldest son, Scott, who had significant disabilities. And she’s not alone. Three of her employees also have children with autism or developmental disabilities.

“We feel if individuals who work with us have a very personal understanding of what families are going through and how they’re trying to survive and succeed, and have their children be as independent as possible, they understand what all the other families are going through and can help mentor them,” Bragg enthuses. “I think that’s what sets us apart from other agencies.”

 

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All in the Family

As limited as resources for families of children with special needs may be, those that do exist are often founded and operated by those with a “dog in this fight,” so to speak.

Maranda Porter’s nephew was diagnosed with autism at 18 months, and she was in turmoil watching her sister—a single mother—struggle to get him the resources he needed.

“We didn’t know what to do with him or how to communicate with him because he’s nonverbal,” Porter explains. So she left her teaching job, went to graduate school and became a board-certified behavioral analyst treating patients with autism and other developmental disabilities at Chicago Autism and Behavioral Specialists in Savannah. In this position, Porter was able to hire a therapist for her nephew and help cover the expenses.

“Insurance is a pain. The out-of-pocket expenses, the deductibles, the copays—it’s ridiculous,” says Porter. “That’s why I decided to invest in myself. And by investing in myself, I’m able to help my nephew.”

She didn’t stop there. Porter’s “hobby” is a company she started called F.R.I.E.N.D.S. of Coastal Georgia that runs summer camps in Swainsboro, Richmond Hill and Savannah, and an “out and about” community program for kids with special needs and their typically developing peers. F.R.I.E.N.D.S is about to launch an after-school program. A fitness program is also in development.

“I didn’t want other families to deal with what we were dealing with because it’s heartbreaking,” Porter laments. “It makes me so overly emotional, but it’s a happy emotion, then it’s an angry emotion, and I then channel that anger into how am I going to make a difference. Because no one else is going to do it for me.”

 

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The Long Road Ahead

Christine likens Ruby to a 15-month-old who doesn’t nap. She requires constant stimulation. She is not potty-trained and may never be. She cannot communicate her wants, engage in imaginary play, nor does she have the motor skills to complete what are considered simple tasks for typically developing children, like feeding herself or dropping a ball into a hole. But this also makes the small things inordinately big. Christine tells me how just this week, Ruby got her cup to indicate she wanted something to drink.

“Everything has to be broken down into such small, slow steps. Like her getting the cup—that’s freaking amazing,” she says.

When Barney finally runs its course, Ruby makes a deep growling noise and then begins to cry. Meanwhile, Alexa, who has since returned from school, is playing tug-o-war with Ava for control over an iPad. Christine plays referee between the sisters and distracts Ruby by moving her, and our conversation, outside, sighing, “It’s just hard”—a phrase she often repeats when words seem to fall short. It’s drizzling outside and Ruby, who enjoys nearly all forms of sensory stimulation, stands in the rain and smiles at the cool drops falling on her body and the wet grass underneath her one un-socked foot. While Christine and I sit at a table shielded by an umbrella, Ruby expertly spins balls and then meticulously places them in a perfectly straight line, evenly spaced apart, always smiling.

“She’s really good at that,” I acknowledge.

“Yeah, I bet your typical child can’t do that,” Christine teases, laughing.

“It’s pretty cute.”

She’s quiet for a moment.

“But, will it still be cute when she’s 20?” she asks.

I hadn’t thought about that. I haven’t had to.

 


Where to Turn

It’s not uncommon for families of children with autism and other developmental disorders to experience feelings of social isolation and worry over the financial costs that accompany the high-priced goods and services their child may require. Although this region’s resources are currently more limited than most states, there are a number of organizations whose assistance can make a significant, positive difference.

 

“Families pretty well thrive once they feel like they’ll keep their family together,” explains Lynnette Bragg, founder and CEO of B and B Care Services, who raised a son with special needs and is very familiar with the struggles families face.

 

The following are some local and regional organizations that can help:

B and B Care Services provides personalized services, including state-funded respite care, to families with children and adults with disabilities in about 132 Georgia counties.

754-0817 | bandbcare.com

 

Babies Can’t Wait, an early intervention program through the Georgia Department of Public Health, offers preliminary evaluation and coordination of services to assist children with special needs up to age 3. Some services are available at no cost; others are available on sliding-fee scale.

404-657-2700 | dph.georgia.gov/babies-cant-wait

 

Chatham Academy at Royce Learning Center provides college preparatory and practical studies for children with language-based learning disabilities and attention deficit hyperactivity disorder.

354-4047 | roycelearningcenter.org

 

Chicago Autism and Behavioral Specialists administers individual consultation and therapy services to children with autism spectrum disorder, communication disorders, behavior disorders and learning disabilities.

800-844-1232 | autismbehaviorspecialists.com

 

Effingham County Navigator Team is a support and advocacy group for families of children with special needs and organizes a number of recreational activities.

659-9855 | effinghamcountynavigatorteam.com

 

Easter Seals is a national organization with regional programs to provide a range of services for children and adults with special needs, including advocacy, education, employment, access to therapy and financial support.

800-221-6827 | easterseals.com

 

F.R.I.E.N.D.S. of Coastal Georgia provides a social skills summer camp and behavior-based services for children and young adults, such as a parents’ night out and peer mentor program.

888-558-9897 | friendsofcoastalga.com

 

Katie Beckett Medicaid Program was established under the Tax Equity and Fiscal Responsibility Act. The state-run program provides benefits to certain children 18 years of age or younger who qualify.

678-248-7449 | dch.georgia.gov/tefra

 

Kicklighter Academy is a learning center for children ages 6 weeks to 6 years with autism spectrum disorder as well as their typically developing peers.

355-7633 | krcacademy.org

 

Lowcountry Down Syndrome Society is a support group to benefit people with down syndrome and their families through local leadership, outreach, education and advocacy.

663-8573 | ldssga.org

 

Matthew Reardon Center for Autism is the only day school in southeast Georgia for children ages 6 to 18 with autism spectrum disorder. The center also operates advocacy and outreach programs.

355-9098 | matthewreardon.org

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