Organizing for Advocacy

By Mara Cantarella

January, 2018

It’s normal for parents to feel confused, overwhelmed, and exhausted when raising their kids — that’s why some wise person said it takes a village to raise a child. When parents are raising a twice-exceptional (2e) child, they may feel more like they wandered out of their village and took a detour into the Twilight Zone. But when parents of 2e kids have access to appropriate resources, information, and a knowledgeable community of peers, and when their children are understood, accepted and appreciated, they can begin to find new bearings to help them navigate their parenting journey.

Although 2e children are exceptionally bright, they can have a constellation of issues that challenge them in any number of ways. Parents of neurotypical children may turn to family, friends, or their pediatrician for advice; but parents of 2e children generally have a much harder time finding resources to help them understand their child. Parents often find that conventional parenting wisdom does not apply to their 2e son or daughter because the development of these kids follows a different trajectory. They are brilliant in some areas but surprisingly challenged in others; they can have a hard time with social skills; their school may find it hard to keep them engaged or manage their behavior; and it can feel to parents as though no one they consult can shed light on what is happening and why. It can be a deeply unsettling, and isolating experience.

The Challenges Parents of 2e Children Face

While every twice-exceptional child is unique, exhibiting a range of different types of gifts and challenges, certain characteristics are common among 2e children. The primary hallmark is asynchronous development, meaning they can have the chronological age of 8, for example, the intellectual capacity of a 16-year-old, and the emotional development of a 4-year-old — all in one small package! They can be arrogant and aloof, yet incredibly sensitive, insecure, and compassionate. They can have hair-trigger tempers; be picky eaters; or be hypersensitive to smells, tastes, textures, or sounds. They often suffer from anxiety and depression because they are keenly aware of their challenges, yet unable to appreciate their giftedness. These wide-ranging traits can be confusing to parents, as they often are to the children themselves.

Despite having interests more akin to those of older students, 2e learners are often less mature than their classmates. Having interests and capacities misaligned with those of their peers can make it hard for these children to find friends. Consequently, given that parents tend to develop friendships through their children, the parents of 2e kids often miss out on the opportunity to form relationships with other parents. In addition, parents of neurotypical kids may not want their children to hang out with 2e kids — fearing that a 2e child may be a bad influence — or they are unwilling to risk managing a 2e child’s meltdown. The resulting isolation can be almost as hard on 2e parents as it is on their children.

School problems can add to the sense of isolation 2e parents feel. Teachers and administrators may be well intentioned; but more often than not, they lack the time and training to figure out what makes these kids tick. When a teacher has difficulty figuring out how to address the needs of a 2e child, the relationship between the school and parents can become combative and counterproductive. The school may want parents to solve the problem because school personnel don’t know how to help the child succeed.

Yet another source of stress can be spending time with family or friends. For many parents, family and friends can be a source of support; but when it comes to 2e children, these important people in our lives often lack an understanding of the 2e child’s needs and complexities. Furthermore, their offers of unsolicited and unhelpful advice may cause parents to feel insecure or angry. Well-meaning as they may be, family and friends may come across as judgmental or uncaring, leaving parents feeling even more alone and misunderstood then ever.

Before a 2e child is diagnosed, finding relevant information to explain his or her struggles can be hard. Often the first stop is the pediatrician’s office. A primary care doctor may refer the family to a developmental pediatrician or for services such as occupational or speech therapy. However, if these providers are unfamiliar with twice-exceptionality, such referrals can end in frustration. Even when parents get specialists on the case, the resulting diagnoses and treatments can miss the mark if the doctor or practitioner lacks knowledge of twice-exceptionality. A scarcity of comprehensive information about these children — for families as well as for health-care providers and other professionals — can often lead parents to feel lost or inadequate, as though they are failing their gifted, yet somehow off-track, children.

Turning It Around

So how can parents faced with all of these challenges get the help they need? When parents feel at a loss, it may be time to create a new village — one made up of other parents who truly understand what they are going through. That was the story of the founders of the organization Twice Exceptional Children’s Advocacy (TECA). As parents of 2e kids, these three moms experienced an abundance of parenting challenges firsthand. Then, in 2003 when a school social worker introduced them, what immediately became clear was that together they could draw support, strength, and knowledge from one another. They felt so validated and empowered by this experience that they became determined to start an organization that could help others.

Fifteen years later, members of TECA find that they still face challenges along the way, but what once seemed impossible is more manageable with the support of a community. From the practical advantages to the social/emotional benefits, both children and families gain much from joining together with others who understand and appreciate twice-exceptional individuals. While it’s just one small part of the puzzle, TECA is dedicated to helping the families of 2e children become united and strong so that together we can provide support across the spectrum of needs of these families.

What TECA Has to Offer

As parents in the 2e community, we all start out on this twice-exceptional journey wondering what we’ve gotten ourselves into and how we — and our kids — are going to survive it. We feel frustrated, lonely, overwhelmed, confused, and scared that we are failing our children. We know we have to fight hard on their behalf, even if we don’t know how.

Over the years, TECA has created a range of programs and tools for parents to help them combat their isolation. Since I joined TECA as its Executive Director in 2015, the organization has focused its energy on finding new ways to bring parents together, regardless of where they. Among them, all at www.teca2e.org, are:

  • Discussions, an online message board for TECA members, where parents can ask questions, post resources, and even share humorous stories about their kids. Most importantly, they find a community of parents who experience the same types of traumatic, overwhelming, or just plain odd parenting moments and a place where they don’t have to explain or apologize for them.
  • Online support groups and workshops that address topics important to parental success and self-care, while providing parents with opportunities to connect with one another and share strategies.
    A nationwide 2e Services Directory, which lists a range of programs and services providers who have experience working with 2e kids and families. All are recommended by parents who have experience with them.
  • Downloadable provider screening tools to help parents identify their child’s specific traits and needs. Also available are guidelines for determining whether a provider would be a good fit for their child and family.
  • TECA’s Advocacy page, where parents can find basic information on their rights and definitions of common terms with which they will need to become familiar as they advocate for their child. Parents can also contact TECA directly for help finding additional resources, such as educational advocates and attorneys who can work with them locally.
  • The annual Building 2e Awareness & Community Conference, which features a full day of programming designed to provide 2e families with comprehensive information and resources. The day includes informative workshops and panel discussions, community-building activities, and networking opportunities. Psychologists, therapists, educators, lawyers, and advocates share insights and expertise on topics such as identification, evaluations, talent development, advocacy, programs, home/school connections, interventions, and assistive technology. 

Mara Cantarella is the Executive Director of Twice Exceptional Children’s Advocacy (TECA). Since joining the organization, she has worked to expand the grassroots organization into a vibrant online resource and community for parents of twice-exceptional children. As the mother of a 2e child, she experienced firsthand both the scarcity of resources and information available to help parents raise these uniquely challenging children and the sense of isolation that comes from having a differently-wired child.

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