A Parent’s Point of View: The 2e Journey, by Dr. Dan Peters

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Even though I work with children and families as a professional psychologist, I am first and foremost a father to three children. My experiences in raising them has informed my work greatly. Some people may not know that and for this very reason, I decided to share an article about my own experience as not only a psychologist, but also a dad. This piece originally ran in the 2e Newsletter.

I am sitting at my oldest child’s pre-school, attending the last teacher conference. Her kind and veteran teacher is telling my wife and me that our daughter is not picking up her numbers and letters as she should for kindergarten readiness. The teacher suggests we have her evaluated for a learning disorder. Although I evaluate kids for that exact issue, I tell my wife that our daughter is young, her teacher is over-reacting and she will be fine. After all, our daughter is creative, imaginative, and says things and asks questions that are beyond her years.

I am now sitting at my daughter’s kindergarten conference, and her teacher is showing us her numbers – out of order, some backwards – and the letters she is able to recognize consistently – not many. I have a sick feeling in the pit of my stomach. Was her preschool teacher, right? Could she really have a learning disorder? She is smart and artistic. How could this be? I am sitting at our kitchen table. My close friend and colleague has come over to give us feedback on the testing she conducted on our daughter. She starts with the spiel I usually give about what testing measures, how this is only a snapshot in time, and that our daughter is young and development is on our side. She begins to show us the data.

Our daughter’s visual memory is beyond the 99.9th percentile. She remembers shapes and designs and can reproduce them from memory at a level of someone several years older. But…she has so many low scores. Her processing speed is very low. So is her letter recognition. So is her number recognition. Her reasoning scores are “average,” but she had trouble sustaining attention to numbers and letters, she had challenges with her “executive functioning,” and she has auditory processing challenges as well. Our daughter is cognitively advanced and has learning and processing deficits – she is twice-exceptional (2e).

I am confused. I have a sick feeling in the pit of my stomach. I feel the tears welling up in my eyes. I see the tears in my wife’s eyes. My friend tells us that our daughter has dyslexia and may also have ADD – the inattentive type. How can that be? What does this mean? I feel a tremendous loss that I cannot explain. It doesn’t make sense.

I am sitting at our first IEP meeting, a meeting to develop an Individual Education Program for our 2e daughter. The team is reviewing the testing results we gave them and reviewing her classroom performance. We hear “slow to learn,” “inconsistent performance,” “trouble paying attention”; and we hear, “She is young and will be fine.” Even though I am a psychologist and have sat through hundreds of these meetings advocating for families, they are talking to me as if I don’t know anything. Actually, they aren’t talking to me, they are talking at me. They are telling me and my wife what they are going to do, but it doesn’t fully make sense. They don’t really know my daughter. They don’t know what she is good at or how she learns. I have these thoughts, but I can’t find the words to express them. My daughter is smart, creative, and imaginative, isn’t she? I feel helpless and have a sick feeling in the pit of my stomach.

And so the journey begins. Tutors, occupational therapy, and vision therapy become the regular afterschool activities. Although I am a professional in the area of child development, neuropsychological evaluation, and educational intervention and planning, I feel as if I am learning things for the first time. I now know what it is like to be my clients – trying to understand their children’s learning profile and challenges, trying to get the school to understand who their children are, trying to set up all the out-of-school intervention needed, trying to figure out a way to pay for it all, and trying not to worry about their children’s future.

It has been nine years since that first preschool meeting, and our two other children have since been diagnosed with dyslexia. Two of our three children have IEPs. What have I learned since I started this journey?

Schools

Schools are complex systems, filled with inconsistencies. While federal, state, and local laws and regulations govern what goes on in schools, there is a lot of interpretation about who gets qualified for what and what services a child receives. Having an understanding of the laws that govern your child’s education is essential, especially with regard to:
• A child’s right to FAPE, a free and appropriate education
• Parents’ rights such as the right to call a meeting about their child, the right to request a comprehensive evaluation, and the right to stay involved with their child’s academic development.

Meetings

Parents of twice-exceptional kids often find themselves at IEP meetings or at Student Success Team (SST) meetings. These kinds of meetings often take on a life of their own. Administrators generally follow a set process that typically involves discussing a list of topics that include strengths, weaknesses, areas of concern, current academic performance, behavior, and action plan. These meetings can be surreal experiences, as if you are watching yourself in a movie where you have no speaking lines.

It is critical for parents to realize that they have a voice in these meetings and to take the opportunity to assert their concerns and their goals. Based on my experience, that often means taking deep breaths and repeating your goals and concerns over and over until they are heard. It can also mean bringing an advocate to the meetings – maybe your child’s counselor or psychologist, an educational advocate, or even a family friend – someone who can provide support or just serve as another set of ears.

Comprehensive Assessment

A common goal among parents of twice-exceptional kids is to get a comprehensive assessment for their child, a detailed evaluation to determine whether the child qualifies for special education. 2e children are highly complex. Many have subtle learning disorders that go undetected because of the 2e kids’ ability to compensate for weaknesses with their advanced abilities. Through compensation, twice-exceptional students are often able to perform at grade level, and their learning and processing challenges go unnoticed.

Many times, parents and teachers can tell that a child is “not performing to his or her potential” without a comprehensive assessment. However, having a child undergo this evaluation process produces a detailed profile of a child’s strengths and weaknesses, making it possible to identify learning issues and address them through appropriate interventions. Comprehensive assessments can be conducted by school psychologists and resource teachers in the school setting, as well as by private clinical and educational psychologists.

Dyslexia

Dyslexia is a complex pattern of weaknesses that includes challenges with identifying letters and numbers, hearing letter sounds (phonemes), spelling, writing, expressive language (finding your words), auditory processing, and executive functioning. 2e kids with dyslexia can often read at an average level or slightly above, but they do so slowly. They get the gist of what they read, but they may change words while reading, skip words, or leave off parts of words.

On the other hand, dyslexics also have an identifiable set of strengths. They are often highly creative. These individuals tend to exhibit advanced visual-spatial and 3D reasoning abilities, experience life through stories, be highly intuitive, and demonstrate the ability to integrate complex and varying concepts into useful, novel ideas.

Intervention

Intervention, especially early intervention, is key. Because dyslexia is complex and each dyslexic’s profile unique, intervention should be based on the individual’s presenting weaknesses. For example, a child who has trouble hearing sounds of letters should receive help improving phonemic awareness. A child struggling to sound out words needs the help of a research-based instructional approach to dyslexia remediation, such as the multi-sensory Orton-Gillingham approaches. A child who finds it hard to track words on the page needs an evaluation from a developmental optometrist (also called a behavioral optometrist) and possible vision therapy.

Interventions are only successful when they target the child’s areas of challenge and when the program addressing this challenge is designed specifically for dyslexic individuals. Unfortunately, most school personnel are not trained in interventions for dyslexia; and, as a result, parents must often seek the appropriate interventions outside of school.

Advocacy

Always remember that, as a parent, you are an expert on your child. Trust your instincts and take a long-term view. Advocating for your 2e child at school does now end (or at least does not seem to). Even when you can get an IEP or 504 Plan (classroom accommodations), you must make sure your child’s teachers, who multiply in number from middle school on, know about and follow the plan. After teachers are aware of the plan, you will still need to remind them that your child is given extra time for tests, allowed to take tests in a quiet room, needs copies of extensive notes, should not be called on in class to read out loud without pre-warning, etc. An equally important part of our job as parents is to train our 2e children to advocate for themselves, learning to tell teachers what they need without shame.

Growing Healthy Kids

Ultimately, what I’ve learned through my journey is how important it is for parents to keep their eye on the ball – in other words to keep always in mind that our job is to raise healthy children who find value in themselves and accept their strengths and weaknesses. That is the ultimate goal.

Achieving that goal means helping our 2e children to learn how to “survive” school and then figure out ways to thrive – not just in school, but in life. We can help by guiding them in discovering their abilities, talents, and purpose. We can normalize their “differences” by teaching them about other twice-exceptional individuals with dyslexia who have grown up to be successful adults. We can encourage them to accept themselves and find their place in the world. We can do these things by always, always highlighting and leading with their strengths.