Parents Wield Online Tools to Advocate for Children With Disabilities
When Amanda Morin's younger child, Benjamin, was about to start school, her older son, Jacob Lewis, then in 7th grade, told his family that they should switch school districts.
"He was really adamant that he didn't want Benjamin to be viewed as a problem," Morin said.
Jacob, now 16, and Benjamin, 8, are hyperlexic, showing an advanced ability in reading and spelling. Jacob also is a photographer, and Benjamin could tell the make, model, and year of pretty much any car. In addition, they both fall on the autism spectrum, and Benjamin is also diagnosed with ADHD, or attention deficit hyperactivity disorder. They are what's known in the disability advocacy community as twice-exceptional.
Twice-exceptional, or 2e, students are those who have both exceptional ability in some academic, creative, or other area, as well as a disability that can pose an educational challenge. For some 2e students, their giftedness may dominate, masking their disability, or vice versa. That may make it difficult for parents or schools to recognize and address the students' strengths and weaknesses.
But, with the help of the internet and social media, parents like Morin are finding new ways to support one another and mobilize for action in the face of confusing school policies and exclusion from other parent advocacy groups.
Twice-exceptional parents are not the first to take advantage of online connection, offering support and information to those hungry for it, and even driving state and national-level change. The advocacy group Decoding Dyslexia, for example, grew out of social media and now has branches in all 50 states, 42 of which have passed dyslexia-specific laws.
Robbi Cooper, a parent involved in policy and advocacy at Decoding Dyslexia Texas, says that social media connects advocates involved in various parts of the legislative process and builds support from lawmakers and administrators.
"Social media allows the door to open when the door's not locked. If the door is locked, then they won't let you in—but that doesn't mean there's nothing you can do," Cooper said, indicating that continued growth and research can serve as the key. "Once they start listening to you and start taking you seriously, then they unlock the door."
Looking for Resources
According to recent statistics from the U.S. Department of Education, about 80,000 students, or a little more than 2 percent of all those enrolled in gifted and talented programs, had a disability covered under the Individuals with Disabilities Education Act. Still, this number may be assumed to be underreported, since 2e students are not always diagnosed as both gifted and disabled.
Plus, that only accounts for students in schools that have a gifted and talented program. There are no federal requirements for districts to provide gifted and talented programs for students. According to a National Association for Gifted Children 2014-2015 report, of 40 responding states, 32 had some form of legal mandate related to gifted and talented education.
Before having Jacob and Benjamin, Morin was a teacher and an early-intervention specialist in the public school system, but even then, she had never heard the term twice-exceptional. It wasn't until Jacob was 8 and refusing to go to school that he was diagnosed as such.
At times, getting the proper services means parents of children with a disability have to take a hands-on approach to advocate for their children. For Morin, advocating for her kids felt like "talking into an echo chamber," in that she was not being heard by teachers and administrators. That is why she, like many other parents, turned to online resources.
For parents whose first child is going through the system, knowing what resources are available to them, or understanding legal requirements such as "individualized education programs" or "behavior intervention plans" can feel like navigating a labyrinth.
This labyrinth can get even more complex when their child can cope during the day, but when exhaustion and frustration are expressed at home, when a parent is the only one to experience it.
"Sometimes children that are disabled are compensating all day long. … That doesn't mean that the child doesn't have a problem that needs to be addressed," said Jennifer Choi, a moderator of the Facebook group Parents of Twice Exceptional Children (2E), which has over 11,000 members.
That's where social media can provide a boost. With what may feel like an isolating experience, Facebook groups and other online gathering places create a "community" that help parents share tips and ask questions, Choi said.
Community was just what Amanda Christy, a mother of an 8-year-old twice-exceptional son, was looking for. That's why she created her own Facebook group, 2e Kids ROC, specifically for families of twice-exceptional kids in Rochester, New York.
Small groups can help smooth the transition from online chats to in-person meetings.
"It's important to meet in person sometimes. It's validating to connect and know that we share similar challenges," Christy said. "It's good to see a face and have a cup of coffee and know that someone else gets it."
For some parents, their children are not only ostracized from on-level students, but also from subgroups, such as gifted and talented and special education students. In addition to having to convince the schools that their child belongs in higher-level classes and needs specialized assistance, parents must also convince their peers.
"When you have a kid who does not get along with their peers in school, who does not get invited to birthday parties, doesn't make any social connection, they're known as 'that kid,'" Maratea Cantarella, the executive director of Twice Exceptional Children's Advocacy, said. "And you're the 'mom of that kid.'"
In the same way that parents feel excluded from in-person groups, many also feel disconnected from Facebook groups and Twitter threads focused on gifted and talented or special education specifically, rather than the intersection of the two.
"There are a lot of parents that will say, 'Oh poor you, your kids are gifted,' but the truth of that is that they will never see the anxiety that goes with that," Morin said.
Advocating for Change
Other groups are hoping to make change through legislation.
In addition to running 2e Kids ROC, Christy is advocating for a New York state bill requiring districts to establish programs for gifted and twice-exceptional students. The bill is currently in the state Senate education committee.
For parents who are unsure where to start the conversation, blogs and podcasts also offer support and advice.
Jen Merrill writes about her daily experiences with her twice-exceptional son, as well as advises parents on topics ranging from self-care to preparing for parent-teacher conferences and balancing responsibilities, in her blog "Laughing at Chaos."
"What I hear the most is 'You're living in my closet, so thank you for joining us, and you're writing about what I'm living,' " Merrill said.
In the TiLT Parenting Podcast, Debbie Reber discusses 2e parenting and education with experts and her own 14-year-old twice-exceptional son Asher.
These resources not only provide parents support during the school year, but also during transitional points—such as entering or exiting school, or moving from middle to high school—when parents may experience the greatest number of challenges.
"I knew from the time Asher was very young, I wanted to do something to access parents like me," Reber said. "[I thought] if I'm in trouble, most parents must be really struggling."
Reber also lists resources organized by common issues encountered by 2e parents, such as anxiety and sensory issues and learning differences. This further opens to door to other supports that parents may need.
Source: Education Week Research Center analysis of IDEA and Digest of Education Statistics, 2018.
Online advocacy is not just on the personal level. TECA, headed by two mothers of their own twice-exceptional children, offers a directory of providers and outside intervention specialists tailored to 2e students and families.
Through such interactions, TECA hopes to stop schools from viewing 2e parents advocating for their children as hard to please, and make education a more collaborative process.
"I so want the schools to understand that this is the student that has a very specific set of needs," founder and president Melissa Sornik said. "It doesn't mean more, it just means different."
Vol. 38, Issue 15, Pages 18, 20-21Published in Print: December 5, 2018, as Online Proves to Be a Lifeline for Parents