As a preschooler, Colin Erfle struggled to learn the names of colors. He couldn’t memorize the ABCs. Rhyming was tough.
“He couldn’t memorize our phone number,” recalls his mother, Julie Erfle, of Phoenix. “I couldn’t teach him the names of the letters. He would spell his name ‘C, circle, straight line, dotted line, hump.’”
Colin was exhibiting warning signs for dyslexia, a neurological difference that affects reading, writing and spelling. “I was told it couldn’t clearly be diagnosed until he was reading,” says Erfle, a political activist and writer.
She didn’t wait for the official diagnosis, which came midway through her son’s first-grade year. Colin, now 10, has had intensive tutoring since kindergarten.
“He is in all honors classes at his school, which speaks to his academic abilities,” says Erfle, “but I’m more proud of the fact that he’s starting to view his dyslexia as a difference, much like having red hair is different. It sets him apart, but it doesn’t define him.”
Phoenix mom Heather Nassar’s son George didn’t talk until he was 2, though he communicated easily using sign language. He has always loved being upside down—Nassar jokes that he learned to stand on his head before he learned to walk. When it started, she didn’t know it was typical of vestibular stimulation-seeking behaviors—one of many characteristics that can be associated with sensory integration dysfunction. (Also on the list: spinning in circles; constantly running, jumping or hopping; vigorously rocking or trouble sitting still.) At 7, George began working with an occupational therapist.
George also has attention-deficit/hyperactivity disorder (ADHD). Children with ADHD are often easily distractible, restless, forgetful and impulsive. Now 12, George is “really super smart but has a low frustration threshold when things don’t come easily to him,” says Nassar, a registered nurse who works at a surgical outpatient center.
For Scottsdale mom Linda Parkis, it started with a trip to Disneyland. She had always noticed that her then-3-year-old son Athan had an in-toed walking style. But that day, while visiting the theme park, “he was literally falling over his feet.” At age 4, Athan’s small-motor skills declined significantly. Then came the excessive throat clearing.
Athan, now 8, copes with a complexity of issues defined during what Parkis describes as “a long road” toward answers. At 6, he was diagnosed with dyspraxia, a developmental coordination disorder. At the same time, Athan was determined to be “intellectually gifted,” which Parkis says comes with “a host of additional adjustment issues.” Two more diagnoses came when he was 7: Tourette syndrome and ADHD.
At school, Athan struggles with small-motor skills like writing and drawing shapes. “He’s reading at a fifth-grade level in the second grade, but he always questions himself,” says Parkis, a partner in the Phoenix law firm of Lewis Roca Rothgerber. “He has days when he calls himself stupid.”
Three different families. Three different sets of concerns. Three bright, capable kids who are growing up “different.” And three moms whose lives took an unexpected but decisive detour into a world of diagnoses, labels, accommodations, therapies, struggles, setbacks and successes.
These women have worked with experts in multiple disciplines to help their children overcome learning and attention differences. Now they are working to ease the path for other Valley parents.
“We found the road to be frustrating and lonely, so we got together and decided we need to do more,” Erfle says.
In August 2014, they launched PEN Phoenix, an affiliate of the San Francisco-based Parents Education Network (PEN), a nonprofit organization that works to demystify learning and attention differences and collaborates with parents, students and educators to support academic and life success. Nassar’s sister, Laura Maloney, is executive director of PEN San Francisco. Maloney is a dyslexic learner who raised a daughter with dyslexia.
Nassar remembers the day she got the call requesting a conference about her son’s classroom struggles. “The hairs on the back of my neck stood up,” she says. “You immediately feel defensive, adversarial. But I took a deep breath and decided not to say anything.” She called her sister, who advised her to go to the meeting, keep quiet and just listen.
“I did,” Nassar says, “and later, when I came up with a plan, she helped me write a letter to the school.” She emphasized her belief that “we all have George’s best interests in mind and we all want to help him.”
Too often, “emotions get in the way and it becomes a struggle between the school and the parents, says Nassar. “It doesn’t have to be that way if we all step back and take a deep breath. We all love[the kids]; we want to support them.”
A long-term goal for PEN Phoenix is to develop a school liaison program. Volunteers will provide resources to parents and teachers and maintain communication with the schools to develop and support “best practices” for dealing with kids with learning differences (LDs). “People really need the information; it’s just not out there,” says Parkis.
Another goal is to create a mentoring group for teens with LDs. “Self-esteem is a huge issue with learning and attention issues,” says Nassar.
In Student Advisors for Education (SAFE) groups, students will learn to recognize their strengths and be encouraged to advocate for themselves. “You need an ability to request your own accommodations, have confidence in yourself,” Erfle says. “To say ‘Yes, I have an LD. My brain works a little differently but I’m fully capable. It’s OK.’”
As these women—all volunteers—work to build a bigger network of support, they have focused their efforts on building awareness. After assembling an advisory board of leading local experts, they launched a series of monthly educational events for parents.
Many children with learning challenges are labeled “lazy” or not as bright as their peers when “they just don’t have the resources necessary to succeed,” says Erfle. “That takes a very heavy toll on these kids.”
It is also common for learning challenges to be overlooked as misbehavior, adds Parkis. “Our goal is to bring some of the research-based information to parents.”
For her son, a gifted and sensitive teacher has made all the difference. To accommodate Athan’s handwriting challenges, for example, his teacher discusses the books he reads with him so she can gauge his comprehension without requiring him to write.
“The message is that there is hope out there,” says Nassar. “If you have a child with learning or attention differences, it’s not because they have a low IQ. They have so much to offer, all these great strengths. Learn to tap into those strengths and focus on what the child can do in collaborating with teachers and schools.”