20 Dec We Tried Normal – 2e Family Stories: Chapter 14
What you have read is a glimpse into the daily lives of families with 2e children. It is just the tip of the iceberg. You may be a parent with a young 2e child, you may be his or her grandparent, or you may be a professional trying to understand twice exceptionality. Whatever your interest, we are grateful you are educating yourself about the challenges faced by 2e children. Over the course of our PAR groups’ research, we compiled collective experiences from many families and drew some conclusions that may help you and others to understand and embrace 2e children and their families.
Twenty-two Reflections: What We Learned
- When our children began to display abnormal or precocious behavior, many of us had no familiarity with twice exceptionality, the characteristics of 2e children, or recommended practices for meeting the needs of 2e children.
- Parents who lack knowledge about the needs of gifted children are more likely to experience intense stress and are less capable of successfully parenting their children than knowledgeable parents. Educating parents about the social, emotional, and intellectual needs of their gifted children can help to lower the pressure and tension of parenting.
- Additionally, we find that having a support group of other parents of 2e children provides a great deal of relief. We feel a strong sense of community identity and solidarity with other parents of 2e children and want to build supportive networks.
- The majority of our parental pressure comes from trying to garner appropriate professional support, and from trying to help our children fit into the larger community.
- We are frustrated to find we usually need to educate professionals and practitioners about our children’s characteristics and behaviors. However, we believe that educating medical, therapeutic, and educational professionals is an effective way to get better support, which ultimately helps to reduce parental tension.
- Our children’s disabilities are often acknowledged and understood, but not their abilities. There is little recognition that there can be overlapping diagnoses.
- Upon receiving test results, or other confirmation of our children’s giftedness, many of us felt a sense of disbelief and inadequacy. In addition, when receiving a diagnosis of our children’s disabilities, we often experience a sense of anxiety, denial, loss, and grief. For many of us, raising 2e children can be traumatic, for both our children and ourselves.
- We are often socially isolated, ostracized, and judged by others because of our children’s behavior and/or our parenting techniques.
- We believe that our children also are often socially isolated, bullied, and ostracized by other children, and invalidated or treated with condescension by adults.
- We must expend a great deal of energy to create environments and build social networks to help our children find true peers and caring mentors. If we are unable to appropriately advocate for our children, we perceive ourselves to be unsuccessful, and believe our children’s success is also impaired.
- We are proud of our children, but we are often reluctant to share their attributes and experiences, because we fear retribution. Parents of typically developing children think we are bragging or comparing our children’s accomplishment and abilities to those of their children.
- We often worry that we are not able to fully meet the needs of our children; that we need a higher level of support than we currently have, to successfully understand and cope with the mental, physical, and emotional demands of raising our children.
- We expend a great deal of time, energy, and resources to accommodate both our children’s exceptionally high need for advanced learning, and the demands of mitigating their disabilities.
- When discussing our children’s abilities/disabilities, many of us experience disbelief and judgment from professionals.
- Many of us have also endured lack of understanding and support from our extended family members.
- We’ve found that there are no appropriate educational models for our children that will allow them to flourish academically and reach their full potential.
- Twice exceptional children often believe there is something wrong with them, struggle to fit in, and try to keep their disabilities hidden, and, at times, also underplay their abilities.
- We know twice exceptional children are challenging; it requires an enormous amount of time, energy, and resources to raise our children. Yet, we rarely have any source of respite or mandated support programs to rely upon.
- Most of us believe that our children are more intelligent than we are. The result is, we have difficulty understanding (or helping others to understand) how to successfully parent our children. Our children often logically dissect our parenting decisions and do not respond well to typical childhood motivators. We are often at a loss to find a way to get our children to comply and cooperate.
- Some of us are 2e, ourselves. Parenting requires us to relive painful memories of our own difficult childhoods, and our own efforts to cope with being twice exceptional. We grieve for the lost possibilities in our own lives. As we attempt to advocate for our children, the combination can have a detrimental effect on how well we cope with our daily stressors, which, in turn, affects how well we function as parents.
- Most of us do not feel there is a safe and supportive environment within our society for our children. We are confronted daily with just how different our children are and how little they are understood.
- We are often worried that our children will not mature into someone capable of living a fully realized adult life. The lack of accommodation for our children’s abilities and disabilities cause them to develop behavioral and emotional problems. We have ample reason to be concerned.
As a group, we understand that many individuals may not have the prior knowledge, time, resources, or ability to follow our recommendations. We have experienced prejudice as twice exceptional persons, but acknowledge that there are others who experience additional levels of exclusion due to differences such as race, class, and gender.
We understand that there are many parents of twice exceptional children who also belong to other marginalized cultures, and the overlapping membership in those communities can render them invisible to those in power. Finding the time, resources, and support to meet the needs of our 2e children was difficult for the members of our PAR group, who are predominantly educated, middle class families. We recognize that, for many families, these recommendations might not be feasible.
However, we also acknowledge that forming our group led us to find community resources, which we had not been aware of, or had access to, in the past. The combined resources and knowledge of our group helped many of us to feel powerful, more able to interact with society, and work toward change.
What Can We Do
We have compiled a list of recommendations to help you better understand the intellectual, physical, emotional, and social needs of our children. These recommendations arise from our group members’ trials and errors. They reflect, as well, advice from members of the larger 2e community, whose children are now adults.
Again, we realize that paying for private school, tutoring, or therapies is beyond the financial capacities of many families. However, we are trying to help people understand what 2e children need to thrive. It is our hope that appropriate resources will eventually be offered through public venues, as now happens for children with disabilities.
On the Intellectual Front
- Do not base grade levels or curriculum on age but rather on abilities and interests. 2e children can accelerate through material very rapidly; or conversely, they may want to stay with one subject for a very long time to explore it in-depth and develop expertise in that area.
- Be aware that most schools (public or private) will not accelerate children more than a few grade levels, due to concerns about emotional and social repercussions. Yet, for most 2e children, an acceleration of two or three grade levels is not enough to keep them intellectually challenged. In addition, without integration efforts by the teacher, acceleration may not be socially successful, either. You will probably have to advocate relentlessly for your children’s needs to be adequately met, or find an alternative to more traditional forms of education.
- Many people believe that 2e children will succeed without any additional accommodation because they are intellectually advanced. Some teachers are resentful of the extra work required to accommodate 2e children. If your child’s teacher is unwilling or unable to accommodate your child, find or advocate for another placement.
- Most schools do not differentiate curriculum adequately for 2e children. Often, teachers do not have specific training to meet the needs of 2e children. Find out your school’s policy on 2e education and plan accordingly.
- Even the most well meaning teachers often do not do enough, or do the wrong things, to try to accommodate 2e children. Talk to your child’s teachers about what they have planned for your child. Compare what they are telling you to what the experts recommend to see if it is compatible and fits your child’s learning needs.
- 2e children like to see the big picture first. They are good at making system-wide connections and will fill in the details as they examine the overarching system. So, if your third grader wants to learn calculus, but does not have the multiplication tables memorized or the ability to do long division, proceed straight to calculus. Find a gifted tutor who can follow his or her thinking and guide logic without using rote practice. Let them explore online tutorials and utilize self-directed learning sites. When your child sees the need, he or she will expend the effort to learn the details.
- 2e children may intimidate adults in positions of authority. This can result in forms of oppression and psychosocial bullying. Make sure that the adults in your child’s life respect her differences and support his needs.
- For 2e children, school is often a painful waste of their time and abilities. Take your child seriously when she tells you that school is boring. Do not let him languish in a classroom where she is not learning anything. Parents often think that school provides a social venue, or their child will learn something, despite being bored. The result is to leave him in school much too long. This can be very damaging intellectually, socially, and emotionally. When it is clear that school is not working, find an alternative, immediately.
- If you have not been successful in advocating at your child’s school, or can’t find a private school that works, try home schooling. Some of our group members are single parents, and had to figure out creative ways to homeschool, but they found that homeschooling was worth the effort. As homeschoolers, 2e children can learn at their own pace and according to their own interests, which creates a successful learning environment for them. It can be daunting to undertake homeschooling, but there are resources online and several national gifted homeschooling organizations, some of which have 2e resources and connections. If you live near a university, it may have programs for gifted children and some of them may have 2e programs.
If you are homeschooling:
- Support your child’s passions from early on, even if they change regularly.
- Consider yourself a facilitator and spend you energies finding books, classes, websites, clubs, educational programs, and materials in your child’s area(s) of interest.
- Do not be afraid to let your child pursue wide-ranging topics to adult levels of learning. Twice exceptional children often pursue a topic until they have mastered it and then abandon that topic and move on to another. This allows them to engage their intellect, make connections among topics, and maintain creative, divergent thinking skills.
- Don’t be too concerned about covering every school subject. Twice exceptional children are intrinsically motivated to learn everything about an area of interest, and in that learning, they usually cover many other subjects (such as language arts, history, and research skills).
- 2e children often have asynchronous development and may far exceed grade level standards in one area, while being well below grade level in other areas. Be patient. Most children have their own learning style and will find their rhythm given the chance. If your child is completely adverse to a subject, or her disabilities affect learning in that area, don’t focus on that weakness. Let him use adaptive technology, such as dictating his story using speech to text, to help navigate around those roadblocks. Find her a teacher/tutor who can approach learning creatively and make it enjoyable to learn in those areas of weakness.
- In their areas of high competency, or as their learning advances, find them an instructor, expert, or mentor who can help them learn without limits.
On the Physical Front
- Twice exceptional children often have gut problems, such as food allergies or digestion issues. Their issues can have a serious impact on their health. If your child is a picky eater, has food aversions, or often complains of stomachaches, you should have her examined by a specialist who understands the mind/gut connection.
- Many 2e children are overly sensitive to physical stimulation and may become overwhelmed by stimuli that are not bothering others. Young children may throw temper tantrums when they are in large crowds, noisy areas, places with a strong odor, or if they are being repeatedly bumped or touched. They may refuse to shower or swim because of the intense sensation on their skin. They may not like to be touched lightly, or refuse to wear tight or scratchy clothing. Many children with autism have similar issues with physical sensation. There are protocols to help them cope, such as wearing noise canceling headphones in a loud venue, or a weighted pressure vest when in crowds. Most 2e children outgrow their tendency to publicly overreact to these sensations, but the sensitivity itself remains throughout their lives. Occupational and physical therapy can help with sensory issues.
- Twice exceptional children often have trouble sleeping. They may not be able to sleep at night, may have irregular sleep patterns, or need less sleep than typical children. Exercise and sunlight exposure during the day may help. Some parents found melatonin to be useful. Others have just allowed their children to follow their natural circadian rhythms and tried to adjust their own lives to fit.
- Many 2e children are not aware of their bodies. They often have issues with proprioception (how their bodies move), and physical sensation. They may seek sensory stimulation, such as, firm touching, swinging, wrestling, and hugging. Many of them do not realize when they are hungry, cold/hot, or need to go to the bathroom. You may need to teach them explicitly how to be in touch with their bodies. Occupational and physical therapy designed for sensory processing disorder often work well with 2e children.
On the Emotional Front
- Twice exceptional children are often quite aware of world problems, at a very young age. They have a mature understanding of inhumanity, but do not know what to do about it. You can help your child deal with these emotions by getting him involved in a local activity that helps alleviate suffering or works to bring about change. This is particularly successful if the charitable work is geared towards problems your child is passionate about
- Many 2e children are overwhelmed with their own, and others’, emotions. They feel emotions much more intensely. Teaching coping mechanisms, such as mindfulness, yoga, meditation, or deep breathing, can help them work through intense feelings.
- Most 2e children are perfectionists. They are full of ideas and start many projects, but often abandon them because they can’t reproduce what they see in their mind. Teaching them that mistakes are important learning opportunities can help them to be confident in their ability to achieve, without worrying so much about getting it perfect.
- Many 2e children also have issues with transitions, being rushed, or any type of timed test. They may get very emotional if they are pressured. Give them lead time before you change activities, and try not to pressure them when they are feeling scattered. To help them be more flexible, you can practice changing plans and making snap decisions when the stakes are low. Most 2e children get better at this as they grow older.
- While 2e children may appear to be arrogant, supercilious, and emotionally disconnected, most of them are deeply in tune with the emotions of others. Early empathy training and social skills training can help to mitigate the tendency toward self-centered perspective and adamancy. This is usually a protective response to intense emotions. They actually care very deeply about those they are connected to, such as family members and friends.
- Most 2e children are highly empathetic. Normal parental incentives such as rewards or punishments, may not work with 2e children. However, explaining your reasoning logically, building bonds of trust, and engaging their empathy, are often successful motivators for 2e children.
On the Social Front
- Twice exceptional children often struggle to adapt socially, because they approach peer interactions in an atypical manner. No matter how many years it takes, continue to teach them social norms. Sometimes, this requires explicit instruction about why people behave in certain ways, why your child’s actions might make her uncomfortable, and what to do instead. This may require teaching her specific social scripts, or examining step-by-step actions to figure out what went wrong after an unsuccessful event.
- Twice exceptional children often find their passion very early in life. Help them find others who share that passion. They will have a more authentic social experience, regardless of the age of their peers.
- It is emotionally devastating to believe you have no true peers. 2e children often feel there is no one like them, or nowhere they fit in. Try to find and attend events that are geared specifically for 2e children, it is a very reaffirming experience for your children to meet true peers.
- Twice exceptional children can form lasting friendships with people older than themselves, who share the same interests, because of their advanced abilities and seriousness about their areas of passion. It is not unusual for 2e children to prefer the company of much older children or adults. You can help them find safe and appropriate adult mentors/friends to enrich their social lives.
- Often, 2e children are reluctant to publicly display their abilities. Do not put your child in a situation where he or she will be put on the spot, unless your child asks to do it. Twice exceptional children say that displaying their abilities can be as socially devastating as coping with their disabilities.
- Many 2e children are highly sensitive and not as emotionally resilient as typical children. Do not assume that they can just toughen up or get over it. They need extra support to deal with life’s hardships.
- Twice exceptional children are bully magnets. The extent and severity of social bullying should not be underestimated. These children may be more sensitive and less resilient than other children. It is very unlikely that they will successfully cope with bullying. If you find your child is a bully target, take swift and decisive action to protect her. Once she is targeted, it is difficult to change the social dynamic. She may experience severe, relentless, and dangerous bullying. If your child is being bullied, get her out of the situation permanently.
- Twice exceptional children can be very rigid about rules and rule breaking; yet, at the same time, they can be very resistant to rules and authority figures. Discussing the rules/rule breaking calmly, as you would with an adult, and listening, as they challenge the underlying logic of the rules, will help to prevent oppositional behavior. Twice exceptional children like the democratic process and will be more likely to follow rules they helped to design.
This list of recommendations is not intended to be comprehensive; it merely touches on some of the most common issues experienced in parenting 2e children, as generated by our group members. Overall, our group felt the best way to offer advice on parenting 2e children was through ongoing interaction with a support group. It is a way to share, to learn from and with each other, the place from which to organize and act.
Having someone to call when things are going terribly wrong can be a lifeline for parents. It is very comforting to describe your situation, and receive understanding and sound advice, from someone who has been through similar experiences. It is also validating to have someone with whom to share your child’s success and accomplishments. Many of us do not think we can honestly share the extraordinary accomplishments and abilities of our children, with those outside of our community, without fear of being labeled as elitist braggarts. All in all, our PAR group felt one of the most effective strategies for parenting 2e children was to form a support group and meet regularly.
A Call to Action
We cannot be unmoved by the marginalization of 2e children and their families. Many of our societal systems oppress 2e people and prevent them from living full lives. These children have the right to be educated appropriately, to live unmolested in their society, to be given adequate medical and therapeutic care, and to have the opportunity to achieve their full potential.
Our current educational system does not provide for the needs of 2e children; it must be changed. Twice exceptional students have the right to be intellectually challenged at school. They should be allowed to work without limitation, to accelerate as fast and as far as possible. In their academic career, 2e children should feel safe and free to express their abilities and individuality. These children hold immense potential for our society. It is imperative that they are supported as they explore possibilities and develop their passions.
Medical and therapeutic practitioners need to understand the unique abilities and disabilities that are common traits among 2e people. It is unconscionable that 2e children are routinely misdiagnosed and mistreated. Too many 2e children are prescribed medication and treatment protocols for illnesses they do not actually have. The results can be devastating for both the children and their families.
In addition, because twice exceptionality is not an officially recognized diagnosis category, parents of 2e children must shoulder the entire financial and physical burden of care. For many families, treatments are prohibitively expensive. That means their children are denied necessary medical and therapeutic care. Parents of 2e children often have nowhere to turn for professional advice or respite from the daily stress of caring for their children.
We have programs that support our population’s welfare—food stamps, Medicare, Social Security, public education—our care for those populations, who need it most, defines us as a society. We need to recognize that 2e people are a distinct community with specific needs. They have the right to live as fully included and accepted members of the greater community. We can achieve this, if we build empathy and understanding about being 2e. Twice exceptional people should feel they can be their authentic selves, in both their personal and professional relationships, without rejection. Every individual should have the opportunity to both contribute to, and benefit from, his or her interactions with society.
Since I began this journey to educate and advocate, I have seen small changes in the recognition and help offered 2e people. It is my hope that this will continue; that a time will come when the designation “2e” will be recognized and understood by the general public, just as autism came into our consciousness in the 1980s. It is my hope that these changes in awareness and attitude will have a real and lasting impact on society’s recognition and response to the needs of 2e people everywhere.
There needs to be a lot more emphasis on what a child can do instead of what he cannot do…I get satisfaction out of seeing stuff that makes real change in the real world. We need a lot more of that and a lot less abstract stuff. – Temple Grandin