28 Nov We Tried Normal – 2e Family Stories: Chapter 11
Sasha and Damon
Sasha and Damon are twins. Both have learning disabilities and are also highly gifted. They were born prematurely and their mother, Nicole, thinks that may have contributed to their disabilities. Damon and Sasha have always had difficulty with reading, writing, and math. Initially, Nicole was not actively concerned with their academic levels, as she was an advocate for what she called “free-range learning,” allowing her children to explore and naturally grow into their interests. She didn’t like labels like “gifted” or “disabled,” and didn’t want to use them. But as her children grew, she eventually changed her approach.
Nicole is a single mom. After her children were born she found a sweet, grandmotherly woman to take care of her babies while she was at work. She loved her children’s caregiver; but as they neared kindergarten age, they begged to go to school. “It was hard for me to accept that my children wanted what they saw ‘normal’ kids doing. Here I was, trying to give them all this freedom to be whoever they wanted to be, and what they wanted was to be conventional.” Nicole did some investigating and selected a small, private, play-based kindergarten that she thought would be a good match for her children. That fall, Sasha and Damon started school and were excited to attend. Nicole was happy because the staff seemed attentive and there were many free choice activities for the children each day.
After a few months at school, Damon began to cry and cling to her every time she dropped him off. He sobbed that he didn’t want her to leave him. Nicole wasn’t sure if this was just a phase he was going through or if there was something happening to upset him at school. When Nicole talked to the director about it, she admitted that Damon had to be put in “time out” quite often, because he wasn’t listening and following the rules. Nicole was surprised by this; she hadn’t realized that they even used time outs at the school. When she told the director that she didn’t discipline her children this way and didn’t want them to put him in time out, she was told that all of the children were expected to learn and adhere to the rules.
Nicole felt like there were some racial overtones to their discipline of Damon, as her children were the only African American children at the school and the staff was all white. “There was just some weirdness there, like they were looking for trouble. For example, he was playing with a little girl under the slide and she started to leave, so he grabbed her pants to keep her from going. It pulled her pants down before he let go and they told me it was inappropriate because he was taking off her pants. But I was there when it happened; so I know it wasn’t about trying to take her pants off.”
Nicole decided to try to find a better school option. She is a non-conformist; she has lived her life according to her own liberated beliefs and wanted her children to grow up free to choose their own paths, as well. Nicole found a small, offbeat free school that matched her ideology of how children should learn. The free school was designed after the Sudbury model, a democratic school model where students have complete responsibility for their own learning and are considered equals to the teachers. In this school, Sasha and Damon would have complete autonomy about how they spent their time. Their learning would be through experience, rather than classroom instruction.
Sasha loved her new school because it allowed her time to play and interact with her friends all day. She developed a close little circle of friends who enjoyed playing elaborate pretend games, creating art, dancing, and singing as much as she did. There were also a number of pets at the school and that was a big draw for Sasha, as she loved all kinds of animals. “She has such an affinity for animals, she just loves to be with them and take care of them. When she was not with her animals, she liked to pretend to be various animals. So she had this great overlap of all the things she loved at the free school.”
For Damon, the school was an opportunity to build and create things all day long. He had always loved to tinker and make things from junk parts, activities that were well provided for at his new school. Nicole believed in giving her children their freedom to play, socialize, and create, so she had no concerns if they chose not to participate in the few academic classes offered at their school. “Damon got to spend all day every day with gangs of kids outside playing in the mud, playing in the sand, riding bikes, building forts, creating art, just a fabulous outdoor experience for him. He hated being in the classroom and he avoided any reading or math lessons. Consequently, he didn’t get that much formal learning there, but I didn’t care because I am pretty much a non-schooling advocate.”
Sasha and Damon made great friends at their school, loved their teachers, and especially loved being able to choose their daily activities. They continued schooling this way until they were near the end of first grade. Then, Nicole was told that the school would be closing at the end of the year, as the people who ran it decided to retire.
Nicole was saddened by this news. She didn’t want to put her children into public school, where she knew they would experience a culture shock. Nicole was also worried that her children would be identified as learning disabled, because there were things they didn’t know how to do, since she had allowed them to learn what they wanted to learn. She didn’t want them to be pigeonholed as needing special services and placed in intervention classes. “I don’t believe all children learn the same way or at the same time. Many children aren’t ready to read until much later than their primary years of school, so I wanted to give my children time to develop at their own pace, without being made to feel they had a deficit.”
Nicole looked for another Sudbury-type school in her area, but was unable to find anything. As the summer ended, she decided the only option was to homeschool her children. She felt she could allow them to develop reading and math skills in an organic, pleasurable way, without being told they were behind or delayed. Also, Nicole believed that if any real disabilities emerged, she could find resources to help her children mitigate the issues.
Nicole had a flexible work schedule, and could often work from home, so she decided to hire a caregiver to be with them when she was at work. When she was not working, she would incorporate learning into their normal lives. That fall, Damon and Sasha began homeschooling and continued to have the freedom to determine how they spent their days. Nicole believed children learned best when at play, so she often tried to find ways to make learning playful and fun. For example, they learned to add by playing restaurant and totaling the bills; they learned history through listening to, and enacting, favorite stories. Nicole was proud to say that her children experienced no trauma about learning; and they associated it with having a pleasant time with her.
Nicole also made sure her children had opportunities for play dates and socializing with other children. She took her children to outside classes on topics they were interested in learning. Sasha participated in a dance class and Damon took a carpentry class at their local community center.
Nicole felt that her homeschooling efforts were working beautifully. She was a little worried that Sasha consistently resisted any efforts to teach her to read or write. She loved to be read to, but the moment Nicole tried to get her to read a word in the story, Sasha would refuse. One of Sasha’s eyes turned inward, and Nicole wondered if that was affecting her ability to read.
This was not a big issue at home, but it began to impact her ability to participate in her outside dance classes. “I started to see things like her problems with directions and sequencing; she would have trouble with stuff like forwards, backwards, sooner, later, more or less. In her dance class they had the kids fill in these charts to mark off their progress on different movements. Sasha just could not get how to do that. She always had to get other kids help her every time.” Nicole began to wonder if the difficulty with her dance class record keeping and Sasha’s refusal to read or write could be due to something like dyslexia.
Nicole decided to talk to her pediatrician about Sasha’s eye and see if there was something she should be doing to correct it. The pediatrician referred her to an eye clinic where Sasha was diagnosed with amblyopia. Sasha began to work with the eye clinic on tracking, focusing, visual perception, and eye teaming (training the eyes to work together). While Nicole was proactive about resolving health and development issues, she still did not want to push her children academically. She believed they would learn best, and without impact to their self-esteem, if she allowed their learning to emerge organically.
But Damon was also having learning difficulties. He was more receptive to learning to read, but his efforts were slow and laborious, and he often got very frustrated and embarrassed if Nicole asked him to read something aloud. While she recognized that Damon was a slow reader, Nicole didn’t think that was too unusual for a child who was at a second grade level.
Damon also refused to do math of any kind, which made Nicole wonder why it was so problematic for him. He seemed to have no trouble with building simple models, often following the graphic directions without her help. Damon was very adept at drawing elaborate designs for Rube Goldberg-type machines, and, even at times, building some of his designs out of household items and toys. He also didn’t seem to have any problems with measuring and figuring out things in his carpentry class. Nicole had no doubts that her children were intelligent enough to learn to read and compute, but wasn’t sure how to best help them become proficient at these skills.
As they began their third year of homeschooling, Nicole sought the advice of a friend who was a teacher. While she was still reluctant to label her children as disabled, she began to wonder if having them evaluated might assist her in doing a better job of helping them learn to read and do basic math. Her friend encouraged her to have them assessed, so Nicole made arrangements with a neuropsychologist recommended by her friend.
The testing revealed that Sasha had dyslexia and Damon had dyscalculia. The neuropsychologist also believed that Damon might have ADHD. Results were unclear because he had never been in a traditional classroom, which would have allowed a teacher to evaluate how he responded in that setting. Nicole reluctantly agreed that the diagnoses made sense, considering Sasha’s struggles with reading and Damon’s refusal to do math. She also acknowledged that the ADHD diagnosis could be possible, given that Damon always had been an extremely active, impulsive child. What Nicole did not expect, was an additional test result that showed her children were both highly gifted individuals. It was the first time she heard the term “twice exceptional.” Nicole had trouble believing the “highly gifted” label because she saw gifted children as being much more demonstrative of their abilities than her children had been.
As Nicole digested the neuropsychologist’s findings, she began to ponder how to use that information to help her children learn and grow. “I want my kids to beat to their own drummer and honor their own learning timelines. I have to admit, sometimes I have doubts, but then I look at how happy they have been in their learning up to now and it makes me more willing to stick to my beliefs.”
Nicole decided that she would not pursue any academic interventions for her children. She felt that knowing the diagnoses was enough for now. She decided to school herself on ways to help Sasha and Damon so she would be ready when they asked for help in mitigating their disabilities. “I think there is just too much focus on what kids can’t do and not enough on what they can do. Why would I want them spending all of their time having someone try to pound things into their brains? I don’t want to make them feel like failures. I would much rather let them pursue what they are great at and celebrate their successes.” Nicole emphasized that didn’t mean she was ignoring the fact that they needed support with their disabilities, but she felt it could be done in a holistic way when her children expressed the desire to do it.
Nicole’s approach to her children’s disabilities was upsetting to her family and friends. They put a lot of pressure on Nicole to intervene on her children’s behalf. “I know my mom worried a lot. She sent me web articles with titles like, ‘How to teach your child to read in five easy steps’ and ‘Great strategies for reluctant readers.’ So I knew she was trying to be supportive, but, at the same time, it’s not just, ‘Oh here, I thought you would find this interesting,’ it is, ‘Oh here, you need to do something about what’s going on with your daughter.’ It was like a subtle knife thrust every time she sent me an article.”
The relationship with her dad was also affected by her approach to her children’s learning. “Whenever I spoke to my dad, he would try to bring up their schooling and he would have a lot to say. He was an engineer, and I think he saw himself in Damon, so he was very invested in getting him to be able to do math. I wasn’t going there, so I just refused to talk about schooling with my dad.”
Nicole knew her parents loved her children and wanted the best for them, but she also believed that they were looking at things from a strictly traditional way of learning that underestimated her children. She knew her children had technology at their fingertips and were good at finding ways to learn things that interested them. Nicole admits that she was often amazed at how fast they figured out ways to use technology to their advantage. For example, Damon watched YouTube videos to learn how to make and do things, and Sasha learned how to use the accessibility options on her iPad to have web pages and instructions read to her.
Over the next few years, Nicole stuck by her decision to let her children determine their own learning. When Sasha was ten, she began to express frustration at her reading limitations, so over the next year Nicole successively enrolled Sasha in two well-known reading programs for kids with dyslexia, Linda Moot Bell and Barton. At the end of that year, Sasha was reading fairly well. Nicole believes the programs helped Sasha’s reading, because the timing was right. Overall, she thinks that giving Sasha time and a pressure-free environment has made a bigger difference than any reading program.
Meanwhile, Damon continued to resist any formal instruction; but Nicole believed he was learning a great deal through his real world activities. While she was sad to see him pass up many opportunities, she never wanted to pressure him into taking classes or working with a tutor, because she didn’t want to make him hate learning. “I wished he would learn to play an instrument, learn to swim, learn martial arts, but he didn’t want to do any organized classes.” Nicole believed this resistance was because Damon was always very self-directed and didn’t like to be pushed into working in a prescribed manner; but, also, because he was nervous about people judging his abilities or disabilities.
As Nicole’s children reach their teen years, she admits she has some doubts about her decisions. “I realize that they are perfectionists, and they have often refused to try to do things, because they think they will mess them up. It’s like they want to do it perfectly from the first time they try it. I know that giving in to this resistance over the years has in some ways narrowed their options.”
However, Nicole believes that she has exposed them to much of what life has to offer, which has helped them figure out what they love to do. She also knows that her children enjoy learning and are pursuing their passions in their own way. Nicole doesn’t believe that would have happened if she had focused on their disabilities and spent all her efforts on mitigating those issues.
Nicole also acknowledges that the teen years are a difficult time for most children. She sees that Sasha is beginning to have some insecurity about herself, and will often point out her own flaws when she meets new kids, including disparaging herself about her lazy eye. “When she meets new friends she often points out her eye, almost like she is getting it out there to give people a chance to reject her. It’s a protective measure. ‘Let’s get this out of the way and then see if you still want to be friends.’ ” This distresses Nicole, as she has tried so hard to teach Sasha to love herself and be her own best advocate.
Nicole also sees some emerging issues with Damon. He is easily discouraged when things are difficult and often doesn’t want to work hard or stick with a task to completion. She also sees that he is lacking confidence with his friends and would rather not confront issues or try to resolve problems. She wonders if her approach to schooling them had any effect on his inability to persist through hard things, or if it is just part of being twice exceptional.
Despite her efforts to raise her children to be independent, Nicole has noticed that conformity is important to Damon. While she understands that some of this desire to conform is developmentally appropriate for teenagers, she feels he is disproportionately upset by anything that sets him apart. Nicole reported, “His friend commented that he looked like a hipster one day, and from that day on, Damon refused to wear any of those clothes, even though he had just picked them out and liked them in the store.”
Like most parents, Nicole wants her children to be confident and able to stand up for themselves. She believes that she has worked hard to give them a strong sense of self-worth. Nicole hopes their current issues are just normal teen angst and that time and maturity will improve their self-confidence. “I realize that everybody struggles with some aspect of their life and if I could wave a magic wand and remove any stigma attached to being different, then maybe my kids would not look down on themselves as much. But, in the end, they are going to be who they are going to be, and I just want to protect who they are while they are getting there. I want to give them a space to grow in, to mature into adults with the confidence to make good decisions when they get out there in the world.”
Overall, Nicole is happy with her child-rearing methods; she believes she has focused on what is most important in preserving her children’s individuality and self-image. She admits that it was often difficult to stand by her beliefs, as there was a great deal of pressure to conform, particularly in regard to their disabilities. “Worry and fear. That’s the first thing that comes to mind when I think of everyone’s approach to disability. And that had an effect on me, even if you try really hard not to be a parent that cares what other kids are doing, somewhere in the back of your mind there’s still a running tally of what other kids can do that your kids can’t.”
Nicole also got pressure to develop her children’s intellect in a more traditional way. Over the years, she was often told that not pushing her children academically would waste their intellect and jeopardize their future. “I have been told many times that I am keeping them from developing their full potential. But what does that mean exactly? Who judges what full potential is anyway? I think I am giving them the chance to figure out who they are and what they are passionate about in life, which in the end, will go much further toward developing them into fully realized human beings.”
She admits that one of the most difficult aspects of raising her children was always feeling like she was swimming upstream. She never felt she could talk honestly with anyone about her approach to her children’s learning. “I put forward this calm face, I appeared to be assured in what I was doing, and mostly I was sure; but sometimes, behind the mask, I was thinking, ‘My child will never be able to do that.’ It made it hard to be confident when all the experts, and well-meaning friends and family, told me that I was doing it all wrong. I can’t tell you how many times I was warned that, in the end, it was my kids who would pay the price for my mistakes. I just wish I could have been surrounded by people who understood and supported what I was trying to do for my children and myself.”
 A general term for disorders that involve difficulty in learning to read or interpret words, letters, and other symbols, but that do not affect general intelligence.
 A condition where vision in one eye does not develop properly.
 Severe difficulty in making arithmetical calculations, as a result of brain disorder.