Through DyslexiaHelp, I have the privilege to come into contact with many parents from all over the country (and beyond). Some are wondering if their child might be dyslexic, others are looking for direction to help their dyslexia child, and some are voicing their frustrations over challenges in getting their child the needed help. I read their stories, answer their questions, and try to help them find resources. But I am not a parent of a child with dyslexia. The following “Dyslexia Story” was written by a mom, who will remain anonymous, of a dyslexic child about their experiences with their school system. In order to write this piece, she interviewed both parents and their children with dyslexia about their school experiences. This is the first of what I anticipate will be many more informative and helpful articles from someone who is in the trenches parenting a child with dyslexia. I am grateful to her for wanting to share this information with others. I suspect that her story and journey will resonate with many of you.

—Joanne Marttila Pierson, Ph.D.

Here are the numbers that keep me up at night.

• 10% of people are dyslexic
• 50% of prisoners are dyslexic
• 40% of entrepreneurs are dyslexic

In American public schools, 15% of all students receive special education. Of this 15%, 32% are receiving special education for a “specific learning disability in reading and writing,” the designation for dyslexia and a number of other learning disabilities.

Let’s look at the numbers this way:

• In a school with 100 students
• 10 will be dyslexic
• But only 5 dyslexic kids will receive special education

About half of the children with dyslexia attending American public schools are under supported.

I’m writing this as a parent of two dyslexic children. One who also has ADHD. The official word for a child who presents with both dyslexia and ADHD is co-morbid, which feels like an unfair condition to ascribe to a child. Of course, the diagnosis does nothing to describe their character. One kid is outgoing and a jokester, a natural leader. The other is a problem solver, a knowledge seeker, an inventor. Both are kind and brilliant and loved deeply.

My children attend a Blue Ribbon public school and receive private specialized dyslexic tutoring. Our network of friends and family offer access to lawyers, educational administrators, scholars, neuroscientists, advisors, doctors, and dyslexia specialists. Perhaps more importantly, our family has an endless belief in our children’s potential to make a positive and real impact. My brother is dyslexic, a successful entrepreneur, and an important role model for my dyslexic children. Many family members also have ADHD – they are successful doctors, authors, scientists (none of them can find their wallet). We accommodate with understanding and humor. I am sharing the extent of our (white, college-educated) privilege to expose the depth of systemic issues in our schools. It shows how the deck is stacked against children with dyslexia, even in the best of circumstances.

For starters, even in our district, I know more dyslexic children who are not supported by special education than those who are receiving services. And, I do not know a single child who is supported sufficiently, in a way that does not require private intervention. Not one. I talked to many parents (and their children) about different types of schooling experiences to find out how to best support my own dyslexic kids.

• Public School with an IEP
• Private School
• Specialized Dyslexia Private School
• Public Schools without an IEP

Public school educators (especially those invested in special education) care deeply about their students. Schools that provide appropriate IEPs for dyslexic kids create a positive learning environment.

Intensive Intervention:

• Intervention that enables a child to access grade level material
• Adequate and consistent hours of direct service
• Early identification, before a child experiences failure

Experience Shared from the Community:
The school told me that my daughter “may never catch up” to her grade level peers. They failed to take responsibility for educating my child. They did not have the ability to (or wouldn’t?) deliver appropriate services. When my child reached grade level because of significant private support, her IEP was dissolved. The school pulled the services needed to maintain grade level achievement. Teaching a dyslexic child to read is incredibly time consuming—it’s difficult work for the child and requires someone who is skilled in structured literacy. We didn’t receive the support needed from our local, public elementary school.

Research-Based Strategies Implemented with Fidelity:

• Curriculum meets best practices for structured literacy
• Educators have the skill to implement structured literacy effectively
• Educators understand dyslexia and can address weaknesses and strengths

Experience Shared from the Community:
Halfway through 3rd grade, I learned that the school was using Lexia–a digital phonics game–to provide a portion of the structured literacy minutes stated in our IEP. Even with a robust IEP, appropriate services were not implemented appropriately. In other years, my child received exceptional services at school but not enough to eliminate the private support.

Cross-Teacher Collaboration:

• Collaboration between the interventionist and the general education teachers to ensure
  the child is properly supported in all subjects throughout the day

Experience Shared from the Community:
Most of my high school teachers are understanding and know that I have an IEP for dyslexia. One teacher told me that if I needed more time on a test that I “shouldn’t be in her advanced math class.” My IEP allows time and a half, but this teacher wouldn’t give me time to finish the test.

Private schools go to market with inspiring philosophies about serving the unique needs of every child with a curriculum that plays to an individual’s strengths and weaknesses. Unlike public schools, private schools offer flexibility in how they address learning differences. And, they often have resources to enable more one-to-one support for the child. Educational flexibility at private schools, and less regulation, can
work for, but also against, the child.

Experiences Shared from the Community:

The educators at our school clearly care deeply for my child and are willing to invest hours in direct, customized support. But, they lack a foundational understanding of dyslexia. We did research and brought in experts to help the school build an effective plan. And, the school spent hours with our child implementing interventions that produced only mild impact. The team at the school wanted to learn, but they didn’t have the skills to make a significant impact.

Our school addresses the whole child, not just the disability. This includes intervention focused on reading, executive function, emotional development, and regulation. However, the school does not offer dyslexia therapy. On top of private tuition, we hire private specialists to address specific needs for our dyslexic kid.

Much like the public schools, the quality of reading instruction comes down to the skills of the people working directly with the kids. We have a hundred years of peer-reviewed, broadly accepted science showing that kids with dyslexia require intensive structured literacy instruction. The earlier the intervention, the better. This translates to a lot of one-to-one support, which takes a tremendous amount of time, skill, and energy. While there seems to be a stronger commitment to designing individual programs and working with parents on solutions in private environments, structured literacy intervention is inconsistent. Even the best resourced private schools in our area are not fully meeting the needs of the children with dyslexia.

There are a few highly specialized schools focused on educating students with language disabilities. These schools provide research-based interventions and specialized training for teachers focused on dyslexia and other language processing learning disabilities.

Experience from the Community:
My kid wanted to go to a school that understood how her brain worked. The Howard School in Atlanta, GA specializes in language disorders. The children learn general academics through a lens of how their brains process information. Self advocacy is a skill built into the curriculum. Children with learning differences are fully engaged and held to their potential. The curriculum is built around a child’s strengths, while weaknesses are appropriately remediated with research-based strategies. Learning needs are addressed with intensive interventions built into the daily curriculum. My child feels supported and is fully engaged in her learning experiences.

At The Howard School, instruction is differentiated so that kids can flex up or down in skill-leveled classes that match their ability. Compare this to a child who reads below grade level, but sits in a classroom with children who operate with significantly stronger reading skills. Additionally, assistive technology (like speech-to-text and text-to-speech) are fully integrated into the learning experience for all students, in all classes. The child receives researched-based interventions, intensively and as part of the school day (a real benefit when compared to fitting in hours of specialized tutoring on top of a busy school week). Specialized schools come with private tuition similar to other private schools in the area.

About half of the students with dyslexia in public schools are not receiving special education, even though they need it. I know many families who raised reading concerns in the early elementary years and were told to “keep an eye on it” or “it will click eventually.” And, in failing to recognize a need, missed out on the most effective years for teaching a child with dyslexia to read. Even at the 3rd or 4th grade level, below-
grade reading skills impact all areas of education. Even math requires the student to effectively decode word problems.

Experience shared from the community:
Our school will not provide an IEP for our elementary-aged dyslexic student. His general education teacher spends a lot of time reading aloud to my kid so he can manage classwork throughout the day. I don’t know how or when a decision was made to accommodate instead of remediate weak reading skills.

Children who move through school without appropriate literacy instruction do not magically become competent readers. These children suffer socially and emotionally. An adult who lacks basic literacy skills cannot fully function in our society. Remember the stat from the beginning of this article: 50% of all people in American prisons are illiterate. And, we have the science that proves that dyslexic people, even those with profound dyslexia, can become competent readers with appropriate instruction.

Educational options for children with dyslexia are not great, but children with dyslexia are absolute wonders.

Specialized dyslexia schools are a phenomenal option, but are not available in most communities and are cost prohibitive for most families. And not available in my area—making it an unrealistic option for my family.

We are deeply embedded in the public school community and appreciate the things that make public school great, like sports, neighborhood proximity, and a diverse community. Both of my children have fared well in the public school with appropriate IEPs (and private intervention support) for dyslexia. One child is well on his way, preparing for a successful college career.

Our neighborhood elementary school just yanked the IEP from my youngest child, citing “grade level proficiency.” I am navigating the IEP process and fighting for access to a Free and Appropriate Public Education. I don’t anticipate staying in the public school if my child cannot appropriately access grade-level curriculum.