A 2e Parent’s Journey

“My hope is that one day, we all will know the characteristics of 2e students, acknowledge and understand their needs, and be able to meet those needs.”

The personal story I share is that of a parent’s journey in persistence, partnerships, and the provision of unconditional love. I have four children, three of whom are twice exceptional (2e) in the context of the new Community of Practice (2e CoP) definition highlighted in this issue. Along this journey of discovery with my children over the past 14 years, I have realized and accepted the fact that they inherited traits from me that are a component of their learning disabilities and attention issues. For many of us parents, facing that reality brings guilt and remorse and can interfere with our ability to investigate what needs our children have.

I have been influenced by my three favorite 2e students—my children. I love them unconditionally and have always encouraged them to take a practical approach when facing the issues germane to being a child who learns easily in many ways but also faces significant challenges that many people do not understand or refuse to acknowledge as real. What I would often say to them, especially when they might really be struggling, “your hair is—, your eyes are—and you are dyslexic and have attention deficit disorder” or some variation of that. I wanted them to be empowered rather than burdened further by some unnecessary stigma. I was never embarrassed, and I never felt as if I should try to hide something from my children, our family, or their teachers. (I did always leave it up to my children to decide when they wanted to tell their friends, but I will say at times, with the new emphasis on group learning, I found myself trying to enlighten their classmates about how everyone learns at his or her own pace and you can be a terrible speller or not quick at reading out loud but still have great ideas.)

I also did whatever it took—whether it meant taking them back and forth to tutors 3 times a week, researching the topic, attending conferences for my personal education, networking with other parents, attending and presenting at conferences, writing a health column on the topic, or holding frequent meetings with teachers, program facilitators, resource teachers, administrators, or officials from the Department of Instruction to change state law. All of this took time, and I made the decision to continue to keep my professional career on hold so that I could focus on my children’s needs.

I was affected beyond postponing my career while doing everything I could to meet the needs of my three 2e kids. I could not help but acknowledge that I was a stay-at-home mom with a professional degree. I had the time, luxury, and familiarity with research to learn all I needed about the subject and then advocate for what my children needed in a collaborative but truly relentless way. I knew that with the support I could give them, my kids were going to be fine. What I did not know was what would happen to all the children who did not have such an advocate? What about the children who do not have parents who can afford private supplemental education? The public school system is completely underfunded by our state and federal government and is not likely to ever be able to meet all the needs of the students. And, the educational system in general is not designed to recognize, let alone meet, the needs of 2e students.

So, I worked hard to educate myself and to proactively partner with local, state, and national entities: to be not only an advocate but also an educator and resource on this topic. I then decided to run for public office with a focus on meeting the needs of all learners on the local front as a member of the school board. My ability to make a difference on a broader scale has been slow at best. Although I know meaningful change takes time, I struggle accepting any delay. My understanding now has evolved to appreciate that we need to work together to educate and empower parents, teachers, administrators, and the students themselves to be the future champions. My hope is that one day, we all will know the characteristics of 2e students, acknowledge and understand their needs, and be able to meet those needs. Our collective humanity will benefit from the contributions of these incredibly creative, bright children who are our future scientists, architects, comedians, actors, inventors, poets, artists, writers, physicians, and so on. I do not want to imagine our world without the benefit of their contributions.

Having a shared definition, like the one developed by the CoP, is a starting place. I know school districts need a definition that operationalizes procedures for identification and meets the needs of 2e learners to translate Individuals with Disabilities Education Act (IDEA) into Individualized Education Plans (IEPs) and understand how Section 504 applies to these children. Having a definition will legitimize the concept of a 2e student for teachers and administrators, which would definitely be helpful when they are trying to translate what parents such as me are loudly communicating. More importantly, they will be empowered to legitimately meet the needs of unidentified 2e children in their classrooms. If we do not identify the needs, these students cannot access the curriculum like their peers, and they cannot show what they know on tests. They will not experience the same growth that their nondisabled peers do and, in fact, often experience significant mental distress and drop out of formal school because they just do not fit in.

The definition will also help with the effectiveness of Exceptional Child (EC) advocacy groups who already gravitate to entities that have definitions. The potential benefit then goes beyond K-12 education but, hopefully, will affect undergraduate, graduate, and professional educational systems and the means by which students are assessed at that level. Finally, our government is organized so that interpretation of IDEA is left to the states. Without clear definitions, individual states have great leeway on how they translate federal law into state statute, which means a child in one state might qualify for services, whereas the same child in another state might not.

To help move this new definition from theory to practice, I plan to share it with our state parent EC support group and state Parent Teacher Association. As a school board member, I will make sure our state school board leaders and my local district administration are aware of the information. I would encourage all of the national and state organizations that are relevant to 2e students to adopt this definition for all K-12, undergraduate, graduate, and professional programs.

I hope this definition will facilitate appropriate interventions and accommodations for students across all grade levels, not only in the classroom but also in standardized tests. Assessments currently used to admit young adults to graduate programs also need to be given with appropriate accommodations; this is currently an area with great controversy. Finally, of course, I will share the definition with any students or parents I encounter on this journey.

I offer the following advice as a parent:

Trust your inner voice. If your child is struggling and you are surprised and are being told this is “developmental,” “they will grow out of it . . .” Make sure that is true. You know your child best, period.

Our kids take their cues from us, their parents, and, like all children, children with disabilities absolutely need to know they are going to be ok. They need their parents to believe in them and embrace all of their strengths and their needs. Every child who is 2e has a personal sense that something does not add up. Somehow, they are different. So many of their crises and needs along their life journey stem from the failure of adults to legitimize their perceptions, to be comfortable helping them define their identity, and to own it. As the parent, you are your child’s champion, and you absolutely need to acknowledge the reality head on and then figure out what needs to be done to facilitate their making the most of their life.

Time is of the essence. Your greatest opportunity for meaningful impact is as early as possible. Our children have so much potential—do not allow people to misunderstand your situation just because they do not know better: Telling you “no” only when appropriate because evidenced-based interventions do exist, can be done, and are appropriate. You absolutely do not want to miss out on appropriate interventions as early as possible so your children can unlock their potential and their creative spirit. You also will be helping reduce their risk of mental illness, depression, anxiety, and dropping out.

Remain collaborative. All the people you interface with in the public school system (my experience) mean well and are extremely passionate about children realizing their potential. They really are. However, they most likely have never heard of a 2e student and, if you try to tell them, they will question your motive. Who can blame them when they most likely NEVER heard of this term in their professional training? Give them the benefit of the doubt, do not question their motives, respect them as professionals, but never forget No. 1. You can be polite, respectful, collaborative, but tenacious.

Educate yourself. You need to become the expert; your child’s welfare is at stake and your child is in a unique minority so the likelihood that others (teachers, resource teachers, administrators) are resident experts is low. Not unheard of, but assume nothing.

Seek advice from others who have been on this journey already to give you advice about dos and don’ts. Your resource pool includes not just parents but also psychologists, psychiatrists, tutors, teachers, and administrators you will find along your journey who do understand what a 2e student needs and will assist you meet your child’s needs while enhancing their strengths.

Like any parent, a primary goal for my children is for them to understand their strengths and their needs while assuming responsibility for their education, their life, and, therefore, their destiny. Now that my children are all teenagers, my role is shifting from being on the front line to transferring that responsibility to them. As I reflect on my family’s journey, I am very grateful for the sensitivity and responsiveness we have encountered along the way from many different people. Without every single one of them, my children would not be where they are today—and I am grateful. Still, do not think for a minute that my tenacity has softened. I encourage all parents and champions for students to use the definition as a means to educate colleagues and increase our collective capacity to help children succeed, which benefits all of humanity.