This article was written by an North Carolina parent wanting to provide help to other parents that have just begun the journey of dyslexia.
Mother’s Perspective: My son is dyslexic, now what?
Receiving a diagnosis of dyslexia, whether for yourself or a family member, is just the beginning of the adventure. When my son was diagnosed in November of 2013, it was such a relief! I finally had an official answer and reason for his struggles. More importantly, it was much more specific than the general learning disability that he qualified for through the school district. Now we could move ahead and start to make progress closing his skills gap. In the weeks following Ryan’s test results, it was quickly revealed to me that his diagnosis wasnot the sort of finish line that I had envisioned but rather a new mountain of information and questions that rose up and intimidated me. I am a very organized person and normally I just dig in and begin tackling a task. But this time I felt truly overwhelmed. I know that I am not alone. Because I struggled and stumbled, I want to help others on their journey so I created this outline of first steps to get anyone facing this situation moving in the right direction.
When we started on this journey with our son, my husband and I knew nothing about learning disabilities or dyslexia. Neither did we know of anyone personally who dealt with these challenges. We had to start from scratch to educate ourselves about dyslexia, education, curriculum and our rights (to name just a few). Our first resource has been the clinician and therapist who diagnosed our son. She is a wealth of information and phone calls and emails to ask her questions are always free!
Some of the best resources we found that helped us develop our base of understanding are the following books and websites.
Basic Facts About Dyslexia and Other Reading Problems by Dr. Louisa Moats and Karen Dakin
Overcoming Dyslexia by Dr. Sally Shaywitz
I Have Dyslexia. What Does That Mean? by Shelley Ball-Dannenberg and Delaney Dannenberg (children’s book explaining dyslexia)
Reading Disabilities: Beating the Odds by Howard Margolis and Gary G Brannigan
The Dyslexia Empowerment Plan: A Blueprint for Renewing Your Child’s Confidence and Love of Learning by Ben Foss
The International Dyslexia Association http://www.interdys.org
The Exceptional Children’s Assistance Center NC http://www.ecac-parentcenter.org/
IDEA-The Individuals with Disabilities Education Act http://idea.ed.gov/
As you start to research and learn all you can about dyslexia and related topics, you will soon become inundated with the amount of information coming at you. We had clinician test reports, school reading test results, IEP documents (Individualized Education Program), notes from meetings with teachers and … well you get the point. All this great information had to get organized in a way that it could be accessible. I am a fan of a binder. I got a large 1.5 inch binder to start, sheet protectors and dividers. I was able to put post it notes in the front cover for immediate actions. I placed business cards in the clear inside pocket. You can sort your binder to suit your needs. As an example, my categories so far are: meeting notes, private evaluations/testing, IEP eligibility screening test and IEP documents, state tests and progress monitoring, basic dyslexia information, curriculum, other resources (parent groups, tutors, book suggestions). I am sure as time passes I will modify these categories to meet our needs as we keep up with Ryan’s education and progress.
It is imperative to communicate with everyone involved in this process. First, we
communicated the diagnosis to our son. We explained what it meant and what it did not mean. For example, we now know why reading was so difficult for him and that it had nothing to do with how smart he is. We also discussed that dyslexia is also not an excuse to avoid reading or other assignments.
Our next step was to request a meeting with his teachers. I sent an email and attached all
the test reports and recommendations so that they could be prepared in advance. We are
blessed to have a team of about 6 teachers that help Ryan. We all sat down and had an
informal discussion about the results and formulated the plan of action moving forward. We communicate regularly through email and in-person meetings with Ryan’s teachers. We make sure that we are all on the same page about Ryan’s curriculum. It is truly a team effort. Lastly, we communicated Ryan’s diagnosis to close friends and family. The emotional support from loved ones helps all of us tremendously as dyslexia is stressful for the entire family.
I believe as a parent, we have a natural drive to want to advocate for our children. We have been very blessed with our school system and t heir understanding and responsiveness. I know this is not always the case, unfortunately. We must educate ourselves about dyslexia, proper curriculum and our rights so that we confidently and firmly discuss expectations with teachers and administration at the school. We have to gather the proper tools so that we can sit down with educators at an IEP meeting and specifically outline how our children will be taught.
Parents will have to keep up with what is going on in the school and make sure that the services and accommodations are being followed. This is of paramount importance. It is one thing to write down the plan, but is it being followed? Stay involved!
There are many resources available to help advocate for your child. Our clinician who did
Ryan’s evaluation actually offers help for a charge. She can either call into a meeting or
attend in person. I found that our state’s Department of Public Instruction has an office with personnel that can also step in and assist. They can assist families in communicating the needs of their children with the school. Additionally, you can find information on the International Dyslexia Association, and Decoding Dyslexia websites.
Ryan is only 9 years old, so my husband and I have to be his voice. However, as he grows, we want to teach him how to advocate for himself and his needs as a dyslexic. It is important for him to gain these skills that he can carry with him for a lifetime.
Although my husband and I are a team in everything we do, I felt especially alone right after Ryan’s diagnosis. I felt this real need to connect with others who understand dyslexia and parents who have traveled this journey before me. I needed help guidance, reassurance, and solid resources. I needed to know that all the emotions I was feeling were perfectly normal. Slowly, I am finding solid communities of dyslexia-minded people and it is helping. I am learning, leaning and teaching. Below are some places to start. I am constantly looking online and reading about new ways to connect to the dyslexia community and how to learn more.
This website has links to some wonderful organizations and parent groups as a place to get started. http://thebigpicturemovie.com/parents/
Decoding Dyslexia NC http://www.decodingdyslexianc.org/
Facebook groups- I personally have joined the pages of Decoding Dyslexia NC, ECAC and local politicians who are being a voice for dyslexics in our legislation.
Ryan’s diagnosis as a dyslexic has been the best thing that has happened to our family. Yes, I can look at it that way now. His future looks bright! The pieces are falling into place as we build a network to support our son in embracing what makes him special. May your personal journey with dyslexia be a positive one of triumph.