We Tried Normal – 2e Family Stories: Chapter 4

We Tried Normal – 2e Family Stories: Chapter 4

The following stories come from interviews with parents of 2e children. I made up fictional families comprised of people I have worked with over the years. The families’ names are fictitious, to protect the real participants’ privacy, but the stories are true, the examples unaltered, and the quotes verbatim. I hope they demonstrate the lengths many parents of 2e children have gone to try to engender understanding and accommodation for their children.

I acknowledge that most of my families had resources, or knew how to find resources, for building systems to help their children. I am haunted by the knowledge that there are 2e children who have never had an advocate or been given opportunities to succeed. I know there are parents who don’t understand anything about twice exceptionality, or who know their child needs help but can’t pay to get what they need. I hope that increasing general knowledge of twice exceptionality, among those who hold the most power, will eventually lead to support for those who hold the least.

Overall, the experiences of the families in the stories are not positive. In many of the interviews, it was clear how often 2e children are seen as deficient or problematic. Most often their giftedness is masked by their disabilities. When considering what twice exceptionality looks like to those outside of the 2e community, these parents understood that their children do not fit the image of a gifted child. People might picture an eight year old musical prodigy, others a middle school chess grandmaster, still others, a sixteen year old computer genius. The vision might include a talented child actor or painter whose work is in demand. Or, perhaps, people might imagine a very young figure skater qualifying for the Olympics. They might even think of the toddler who appears on a talk show and astounds the audience with her reading ability.

micRarely does one picture, as a prodigy, the child who is covering his ears and rocking back and forth at a loud birthday party. Teachers usually do not think of the child who cannot sit still or stop disrupting the class as gifted. Neither does the painfully shy, socially awkward girl, come to mind. We may not consider that the boy who still cannot write legibly in fourth grade is also a math genius. Nor do we think the obnoxious child who talks non-stop about one topic is brilliant. We may associate emotional sensitivity with gifted artists, but rarely do we pair it with the child who is having a public melt down. We do not usually envision gifted children as socially inept or behaviorally challenged. Yet all of these 2e children are gifted. Giftedness has many hidden faces.

People learn through stories. The backbone of any culture is its stories: the shared narrative that reveals common history, values, and knowledge. The following are our stories, 2e stories.

The families I interviewed relied on me to accurately depict their experiences. As part of the 2e community, I comprehend, at a visceral level, the experiences and issues at hand. I was honored to undertake the task of writing these narratives to give voice to the families, but also tried to be true to the real life experiences they shared. I hope telling these stories will help you, the reader, to better understand their lives, so that the true faces of 2e children will begin to be revealed.

Tomas

Lupe sighs as she begins her story. “You know, telling this story could take hours and hours. I would say it’s been completely like improv, it’s like inventing it as you go along, every step of the way there is no script.” Lupe has five children and all are gifted, but her son Tomas is the most profoundly gifted and has had the hardest time assimilating into their life routines. From the time he was a baby, he was more interested in figuring things out than he was in interacting with other people. Lupe confessed that she was often struck by how “utterly socially charming and easy going other people’s babies were compared to Tomas.”

When Tomas started preschool at three years old, Lupe noticed that the caregivers didn’t interact with Tomas much, because he was always busy building something, or investigating how something worked, or reading. Once when Lupe picked Tomas up from daycare, one of the caregivers told her she thought it was cute how Tomas looked through books all the time. Lupe told her he wasn’t just looking through the books; he was reading them. They didn’t believe her. “It was one of those moments where I was just stunned that the people who had cared for him for over a year wouldn’t know he could read, because he talked about what he read all the time. It was his bridge to other people, he wanted to talk about what he was learning, and they didn’t even recognize that he was reading. They didn’t really know him.”

lookA few months later, Lupe came to pick him up and he was in a vertical cubby with a sheet duct taped over it. The caregivers reported he had duct taped the sheet over it to cover himself and he just wanted to sit in there. Lupe asked them how often he withdrew like that and the caregivers told her he found ways to be alone every day. Lupe was concerned, so she took him to the university to get an assessment. “I had always wondered if he was on the autism spectrum, but the assessor said he didn’t fit the classic definitions, even though he did have a lot of sensory overwhelm going on.”  The assessor thought he might do better in a different type of preschool, something smaller and more intimate, where the caregivers would be more attentive. Lupe looked for something affordable that fit the recommendation and eventually moved him to a small Waldorf preschool that offered a partial scholarship.

The new preschool focused on socializing, fine motor skills development, and self-calming techniques, all of which were areas of weakness for Tomas. They had a lot of hard days. Tomas often hid under his desk or tried to run away, but his teacher put a lot of effort into building a relationship with him. “He loved his teacher, she loved him. It was my first realization that it was mostly about the relationship with the teacher and how much the teacher got it. She just recognized how brilliant he was, she would say things like, ‘He cracks jokes at lunch and none of the other kids get it, but the adults are laughing our heads off.’ So there were some wonderful things that came out of that relationship.”

But there were some problems, too. The teacher felt Tomas was hyperlexic[1] and too focused inward. He didn’t like to engage in the large group activities, like the eurythmics[2] sessions, or community play during recess. The teacher believed it would help his social adjustment if he spent less time reading. She told Lupe they were trying to keep him away from books at recess and recommended that Lupe put his books away at home. Lupe was flabbergasted, “If I put his books away, that would be like taking away the air that he breathes.” She refused, but realized she needed to do something to support his connecting with others. Lupe found a social skills group at a local center that provided psychotherapy and educational support to special needs children.

Lupe also began to understand that Tomas was starved for intellectual stimulation. She felt that the Waldorf program had many positive aspects, but there were no high level academics. Once again, she decided to move schools. Lupe moved Tomas to a public school for first grade. She asked for a meeting, before school started, to talk about Tomas’ strengths and needs, and alert them to the issues she had seen in his previous educational settings. The administrator refused to accelerate Tomas or allow him to go into other classes for higher-level work, but they reassured Lupe that they would differentiate in the classroom. The principal assigned Tomas to a grade one/two split classroom with a teacher who was known for her academic rigor.

Tomas loved math, so Lupe also found an online Stanford program for gifted children and signed him up for its math courses. As the school year began, Tomas scored in the 99th percentile in the Stanford math program and was zooming effortlessly through the curriculum, covering a typical year’s curriculum in a few months. He told Lupe that he loved his online class and wished he could do more.

Yet, at school he was not doing well. The teacher told Lupe that Tomas was resistant to learning most of what she assigned. He had dyspraxia[3], so writing was very difficult and he often would lie down on the floor and cry, rather than do the assignments. He would forget to go to the bathroom at recess and then wet his pants in class. He was taunted by the other children for his self-calming behaviors, such as rocking and humming. Tomas started to tell Lupe that he hated school.

Lupe realized that success at school was more about compliance than about learning. Tomas wasn’t being given anything to learn. He already knew all of the curricula they presented to him, including their “rigorous differentiated work.” Lupe felt that there was a disconnect at school, “Here was this kid who couldn’t love anything more than to learn, yet who was seen at school as a kid who was resistant to learning. Really what they meant was he was resistant to complying. So basically he became an ‘after school scholar.’ He went to school for day care.”

They bumped along through first and second grade, navigating the issues at school and feeding his intellect at home. Tomas still struggled with social issues. He was bullied by many other students, yet the teacher and principal were dismissive of his problems. Lupe was told repeatedly that things were not as bad as Tomas reported. They told her that the other students liked Tomas, but they just reacted to some of the things he did “like any normal kid would react.”

For example, while standing in line for lunch, Tomas hugged a boy and the boy punched him. When Lupe asked what had happened, the teacher justified the other boy’s actions. “Tomas hugs other children all the time and he won’t let go, even when they ask him to. They feel uncomfortable.” Or when Tomas was taunted for picking his nose and eating it in class, the teacher sniffed, “You can’t blame the other kids for getting grossed out, of course they are going to react to that.”

Lupe could see the cumulative damage that was being done to Tomas; he started to mark an X on the calendar to count the days until he would be “free.” Lupe began to have doubts about the whole educational system at this point. She felt like every educator she talked to was seeking to make the child fit into the system, instead of figuring out what the system was doing to the child. “I just wanted them to see him as a whole person and ask, ‘What are the challenges about? How can we make it work?’ But it never seemed to be about helping him succeed.”

Lupe felt stressed and depressed by all the problems Tomas was having at school and the myriad of meetings she was required to attend. She always felt like her parenting was being judged and found wanting. She remembered walking into the classroom to pick Tomas up one day, and the teacher motioned her over. “She motioned me over with what I call the ‘finger of doom,’ you know, motioning you over like a bad child. I was like, ‘Oh God, oh God, what is wrong now?’ After she told me about yet another incident, I remember I was driving across the bridge and I had this crazy thought that I should just drive off the bridge and take us both out, because I felt like it was never going to be okay for him, and if it wasn’t going to be okay for him, it wasn’t ever going to be okay for me, either.”

Problems with Tomas’ classroom behavior and others’ social bullying of him continued. Finally, toward the middle of his third-grade year, Lupe dropped by the school one day during recess to bring Tomas his lunch and saw him surrounded by kids who were taunting, hitting, and kicking him. She pulled him away and went straight to the principal and insisted that something be done immediately. The district agreed to transfer Tomas to another school.

Tomas remained at his new school through fourth grade. The new school was better in some respects; they had more community building programs and better special ed support. Tomas qualified for occupational therapy and his therapist tried to help build relationships by including other students in Tomas’ therapy. For instance, when he came to pick up Tomas for his therapy he would ask if anyone else wanted to come and play, so it was like a reward or a privilege to hang out with Tomas.

Tomas also began to see the school psychologist once per week, to help him with his social skills. After several months of meeting with the psychologist, she began to caution Lupe about limiting Tomas’ time on the computer. The psychologist believed that he was overly focused on computers and that obsession was interfering with his social adjustment. Lupe felt the psychologist didn’t realize that Tomas did not use the computer the way a typical elementary boy would use it.

code“For Tomas, the computer is the tool through which he could pursue his passion and feed his intellect. She didn’t know that this ten-year old boy had built his own computer from junk parts he found at thrift stores. Or that he was learning several programming languages and already coding. It was the one thing that provided intellectual challenge for him, and it was the only thing he was excelling at during that time. It seems that everyone supports a music prodigy, or a sports prodigy, but there is no support for an intellectual prodigy. There just was no understanding of what he was doing with the computer and how it was keeping him sane.”

Although Lupe felt the public schools were not a good match for Tomas, she could not afford private school, so she didn’t see any other option. However, later that year, she read about a new school for gifted children that would be opening in her neighborhood. Lupe decided to take a look at the school to see what they were all about. “I hadn’t been able to consider private school, because I am a single mom, but I was offered a scholarship and this school was very alternative, with sort of radical ideas on how to support gifted children, so I was really grateful and hopeful.”

Tomas started his fifth grade year at the private school and Lupe noticed immediately that his anxiety dropped significantly. The school was very small and all of the children in attendance were exceptionally gifted people. Lupe thought Tomas felt like he was with people who understood him and that he could be himself, for once, without worrying about it. “It was just so wonderful to see this change come over him, his level of overall pleasure and enjoyment in life, and sense of just being settled was much greater. I thought, ‘Hallelujah! He’s found a home.’ ”

Tomas did thrive there; he was able to accelerate his learning without limitation and the teachers there were experienced in working with profoundly gifted students. The program focused on providing experts in each subject area, as well as mentors, who were assigned to support the students as they explored the topics they were passionate about learning. Tomas was able to work with a computer engineer who helped him further develop an already impressive ability to build and repair computers. There was no set curriculum; students were encouraged to design their own learning path, focusing on their strengths. If a student’s passion was art, they spent their day creating art. Naturalists got to be in nature. Singers could sing. Writers could write. Lego engineers could build Legos.

While there was support for their weaknesses, it never superseded their ability to work to their strengths. There was also a high degree of focus on positive social interaction. The students were taught how to build social relationships and were supported in all of their social interactions. There was also a great deal of investment in empathy training, which basically eliminated any bullying at the school. All in all, Lupe felt that this school truly was designed to meet her child’s needs. Unfortunately, the school did not go beyond sixth grade, and so after a little hiatus, Tomas was back in public school for his seventh grade year.

Lupe felt that his time at the private school had given him self-confidence that she hoped would transfer to the public school setting. She was worried about him going back, especially for middle school, which can be difficult even for the most typical kids. Tomas was excited about the idea of being able to take a foreign language class and, even though he was doing calculus in his online course, he was excited to take algebra in a classroom setting with a “real teacher.” Lupe mused, “Middle school is the cross roads for a lot of kids like mine; but I thought with strong leadership, a teacher who is on top of it, and a school community that tries to understand him, he could be pretty successful.”

That didn’t turn out to be the case. Despite meetings and assurances of awareness and support, fairly severe bullying started right away. Tomas was walking home from school on a pedestrian pathway and some kids rode their bikes past him. Tomas, who is offended by rule breaking, reprimanded them for riding their bikes on the path. The students jumped off their bikes and beat him up.

bikesOnce that happened, he became a target for bullying. One day he rode his bike to school and they loosened all the bolts. When he got on his bike to ride home, it fell apart. He was shoved and spit on in the hallways. Cruel notes were taped to his locker and he was mocked and ostracized when he was out of the classroom. At one point, he wanted to try out for a sports team and the other kids threatened to sexually assault him if he ended up on their team.

Lupe felt he was being systematically terrorized and beaten down. Yet, on his own time, he was making duct tape wallets and repairing computers to raise money for a nonprofit organization, whose mission is to give laptops to third-world children. Without Lupe knowing about it, Tomas contacted the nonprofit and told them about his ideas and offered his donation. They ended up inviting him to speak at a conference about his work. Lupe beamed, “He was the only kid presenting, I mean he still had this young sing song-y voice, but all of the adults in the room were impressed with what he was saying.” She was struck by the painfully stark contrast between how he was treated at school and how people in the audience saw him.

Lupe once again met with the administration and insisted they do something to protect her son. They tested him again and told her that he was not eligible for any special services, because he scored too high on the tests. Lupe pushed harder for understanding. She wanted them to look at the whole situation, how, despite his high IQ, he was not functioning in school.

Finally, Lupe borrowed money from a friend and took Tomas to a private neurologist. The neurologist diagnosed Tomas as profoundly gifted and autistic, but she recognized, that in the one-on-one testing, Tomas performed differently than he did in school. She told Lupe that if she only considered Tomas’ overall scores, he did not exhibit many of the typical behaviors associated with the autism criteria according to the DSM[4]. The neurologist recognized that she was going to have to look at it another way. She was going to ask herself, “In a school environment, is this child disabled?” The neurologist came and observed Tomas at school several times and found that when he was in school, Tomas’ behavior was consistent with a diagnosis of autism.

Lupe was so relieved the neurologist had the capacity to perceive her son was not disabled because of how his body and brain worked, he was disabled because he was in an environment that did not support his needs or allow him to be successful. Lupe said, “I’m grateful that she was willing to examine it from another angle. I was not sure if he would qualify because his IQ is so high, but I knew if I had an IEP, I could access necessary resources and the school would have to accommodate him under federal law.”

With his autism diagnosis, the school offered a reduced day and arranged to have Tomas only go to school in the mornings. During that time he worked one-on-one with a high school math teacher doing honors algebra and volunteered to help in the adaptive special ed PE classes. He was allowed to spend the rest of his time in the resource teacher’s room working on his online courses.

mathBut his math teacher didn’t seem to understand Tomas’ abilities. He gave him lower marks because Tomas didn’t write out the steps he took to solve his problems. Tomas could just see the answers to the questions, so didn’t need to write the steps. Even when Tomas met with the teacher and demonstrated that he could answer the textbook questions without showing his work, the teacher told him, “You know, not everybody has what it takes to be an honors math student. If you want to stay in an honors class, you have to push yourself to learn the conventional methods. You have to show your work.” Tomas just deflated after that, he felt like there was no way to be successful at school, even in a subject he loved.

In addition, while this schedule did limit his exposure to bullying, it did not eliminate it entirely. For instance, Tomas tried out for a part in a school play and was awarded a minor role. Even though it was a small part, he worked hard to learn his lines and do a good job. At the end of the play the cast members were signing each other’s programs and someone wrote on Tomas’, “You are the nicest, smartest retard I know.” Lupe cried, “People don’t realize what a major step that was for him to put himself out there like that, and then to have it all be devalued by cruelty is just heartbreaking.”

Tomas turned inward after that. He started talking about wanting to die, telling Lupe that he didn’t fit in anywhere, no matter how hard he tried. Lupe felt the depression was situational, totally related to his trauma and rejection at school.

Lupe was extremely frustrated with the lack of creative problem solving by the school personnel. She wanted her child to be part of a learning community, and had done everything possible on her end to make that happen, but felt she wasn’t supported by the educators, to the same degree.

As Tomas’ depression worsened, she realized that she needed an alternative to the public school system. After she threatened to sue them, the district agreed to pay for a small, private high school for Tomas’ last two years of school.

Even though the new school wasn’t a school for gifted children, it was designed to support children who didn’t fit into the regular school setting. When they went to see it for the first time, Lupe was struck by the differences from their public school. “It was beautiful and calm, set into a hillside with gardens and flowers. There was lots of space for the kids and even the building was beautiful and serene. Such an environmental change from the overcrowded, sterile institutional setting he came from.”

When he started going there he was immediately accepted, even though the other students weren’t gifted, they appreciated and admired his abilities. The teachers worked with him to design a program that allowed him to take online open courses and mentored his philanthropic interests. Lupe was relieved to find that the more support he got, the more he began to open up. “He began to take risks, to put himself out there again, and he was rewarded every time. The other kids were like, ‘Wow, you are so good at this,’ and that built his confidence. He made great strides socially and in his confidence levels.”

Lupe wished the school would have had better academic support for Tomas. She knew he was just scratching the surface intellectually at school, but, at that point, she felt the emotional and social support were the most critical aspect of his education. “It’s like you have to settle, you know, which part of him needs the most support, because no one is going to give him everything he needs.”

As she looks back on Tomas’ school experiences, she muses, “When you have an ultra-sensitive kid like mine, who at five years old is going to bed and saying, ‘I just can’t sleep thinking about what could happen with all these nuclear weapons,’ and then we take that kid, whose awareness and stress are already heightened, and we put him into an environment that is crowded and not adequately supervised and requires a lot of social and life planning skills to survive. When you put kids like mine in this environment, they are just sitting ducks for abuse.”

Lupe feels, at best, she has just managed to avert the worst of the crises during Tomas’ life. She doesn’t feel like Tomas has ever had the opportunity to be fully educated, mentored, or nurtured in a way that would allow him to develop his abilities to their fullest. Lupe has had to educate herself, for the most part, and felt she didn’t have anyone to support her or help her understand her child for a very long time. Lupe didn’t know anything about twice exceptionality until Thomas was finishing high school.

Yet, she feels like she has made a difference. As he is nearing the end of high school, he has been able to find clubs and groups, like a computer-programming group, where he has found peers. “Even though he has had a pretty rocky time growing up, I think he is going to be a successful adult. We have done enough to give him the confidence to find his tribe, wherever they may be, and that will be the key for finally feeling like he fits in somewhere.”

Lupe remarked that though there have obviously been twice exceptional people around for a very long time, no one seems to know what it is or how to work with them. Consequently, these 2e people suffer needlessly. “They can’t find a way to fit in, so they take themselves out, either through committing suicide or disengaging and hiding themselves away, because they just realize they can never meet the demands of this human environment. I am thinking of Emily Dickinson sequestered in her room, lowering her buckets of cookies down to the kids in the neighborhood, while writing all that exquisite poetry.”

Lupe is advocating for a change in how we educate 2e children. She thinks school administrators and teachers should just admit that public schools don’t work for these kids and figure out a better model. “When I think of how many people are broken by these institutions, it makes me sick. Parents like me have to be on a quest to find the very few people who understand and can help our children. If your child had any other kind of special need that could ruin their life, or even take their life away, you wouldn’t stop until you found the solution. Why should it be any different for 2e children?”

Lupe feels most people just don’t understand the needs of 2e children, or the effect the relentless advocating has on their parents. “The level of stress for parents of 2e children is intense; there is constant trauma, misunderstanding, feeling scrutinized, and feeling judged. Underlying all of that is a constant, terrible worry that you aren’t going to be able to help your child.”

 

[1] A syndrome characterized by a child’s precocious ability to read, combined with difficulty in understanding and using verbal language, and problems with social interactions.

[2] A system of rhythmical physical movements to music used to teach musical understanding (especially in Waldorf schools) or for therapeutic purposes, created by Émile Jaques-Dalcroze.

[3] A form of developmental coordination disorder affecting fine and/or gross motor coordination, and possibly speech, in children and adults.

[4] Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) is the standard classification of mental disorders used by mental health professionals in the United States.