Reflections on Where We’ve Been: A Mother and Son’s Journey with Dyslexia

October is Learning Disabilities/Dyslexia/Attention Deficit Hyperactivity Disorder (ADHD) Awareness Month.

Nicola — a mom of three, an advocate, and field manager in Colorado — and her son Dylan, a college sophomore, share what has made their journey unique in hopes of inspiring others. Below, they take turns asking questions and telling their story.


Nicola: I want to start by sharing what I love most about my son. He sees the world in many dimensions. He is inquisitive, caring and creative. Traveling with Dylan is one of my favorite things to do because he sees the nuances and details of the culture, architecture, food and music wherever we are. He expresses genuine joy when experiencing new things. He is very social and adventurous, and people seem to be drawn to him like a moth to a lightbulb. But what I’m most proud about is that after years of struggling with an undiagnosed learning difference, and battling self-doubt, he is a sweet and curious guy and he has found strategies to deal with his learning and attention issues.

 

Nicola: Do you remember what it felt like for you when you started school?

Dylan: I remember being asked in first grade to write down my name and to describe something I liked. I didn’t know how to write or spell, so I wrote how they do in cartoons with just a scribble in a bubble on the page because that’s what I thought writing was. I felt defeated — like I wasn’t normal, and I didn’t know why. I didn’t like going to school because I felt different, but I did like seeing my friends. Everything seemed easy for them, and it was frustrating that they seemed to understand what the teacher was asking but I didn’t. I kept waiting for something to click.

 

Dylan: When did you first really know that I was having trouble learning in school? Was it in reading or writing? 

Nicola: When you were young, we knew you had some trouble when it came to sensory things, and we worried you’d be overwhelmed in a big school. So we started you in a small, private school with your brother, hoping that a small community would make you feel secure and you could explore your ideas.

You were very creative and bright, but when it came to writing and reading you avoided the tasks; you had difficulty writing your name, yet your vocabulary was advanced.

When we asked the school why there was such a disparity and to help us figure out what was going on, we were told that you were “all boy” and you had a late birthday, but you would eventually catch up.

I knew there was something else going on, but I didn’t know what it was.

 

Dylan: At what point did you finally have hope and think it would get better?

Nicola: When you were in the private school, they wouldn’t do an evaluation, so we had to get a private evaluation.

The first big moment was when we finally had a name for what you were experiencing — dyslexia and executive functioning challenges. There was finally a reason why you were having such a hard time in school. However, there wasn’t a roadmap or any guidance from professionals on what kind of intervention services would best help you.

We spent years and a lot of resources finding tutors and trying to get you the services you needed.

It wasn’t until you entered middle schools — this time to our neighborhood public school — that things really turned around.

Finally, the school was proactive. They were quick to complete a full evaluation and get to the bottom of what was happening. They worked with us to put together an Individualized Education Program (IEP) and get the right interventions in place. It was then — once they were able to provide the specific type of reading intervention you needed — that you started to make real progress.

Nicola: What do you think your biggest accomplishment so far has been? And what are your goals?

Dylan: For me, it is being able to retain knowledge at a higher level and overcome my struggles with writing and reading.

It’s hard because dyslexia never goes away. I still have to work twice as hard as my peers. Ironically, it has made me a better student, and I have been on the honor roll since 10th grade.

Taking the SAT and ACT was difficult, but I was still accepted into many colleges including Loyola Marymount in Chicago, University of Colorado, Colorado State University, San Francisco University, Syracuse University, Oregon State University, Temple University and San Diego State University. Receiving those letters of acceptance made me feel that they valued my learning style and I had something important to offer.

In the future, I want to have a successful career that I enjoy and allows me to be creative. I am interested in design, and I can see taking my ideas into the world of advertising or clothing design.

What is very important to me is that I am surrounded by friends and family and never stop learning.

 

Dylan: What has been the best part of this whole journey for you?

Nicola: Even though it was hard to see you struggle and it took a long time to figure out how to help, the best part is that you taught me how to be an advocate.

You taught me that in order to succeed, you have to build partnerships. You can’t accomplish things alone, and if you don’t speak up then nothing will change. I have also met a wonderful community of other parents and educators who are passionate about children and a career that I love and never imagined doing.

 

Dylan: If you could talk to every parent who’s dealing with some of the same worries, what would you tell them?

Nicola: First, I would tell every parent to trust their instincts; if you feel something isn’t right with your child’s education then reach out to your teacher or pediatrician.

I would add that parents should get involved and know their rights. It is every child’s civil right to an education and because of the Individuals with Disabilities Education Act (IDEA) and the Rehabilitation Act, there are protections for your child.

If your child struggles with dyslexia, make sure he receives the correct evidence-based intervention services. Question everything, but also listen and learn. You don’t have to be an expert, but you do need to be an educated consumer.

Get involved, connect with other parents and educators, and create a team to work on the situation together. You can’t and shouldn’t do this alone.

 

Nicola: What’s one thing you want to say to younger kids who, right now, are where you used to be?

Dylan: The world isn’t built for us, but we shouldn’t conform to regular learning styles. You have a unique brain and you can use that brain to solve problems and come up with solutions that other people couldn’t even conceive of. When school is difficult, it doesn’t mean you should give up. It means you should try twice as hard and figure out a way to change the system. You cannot change the past but you can shape your future.

 

Dylan Frost is a sophomore in college, majoring in product design and development. He is an avid soccer player, ceramic artist, and world traveler when there is time. He is active in his fraternity and looking for an internship this summer in product design.

Nicola Frost is the Regional Field Manager (Colorado) for National Center for Learning Disabilities (NCLD). 

Cross-posted at the OSERS blog.

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