The Importance of Advocacy

“She’ll grow out of it.” “It’s developmental.” “She’s so cute!” “It’s just a maturity issue.”

All of these phrases and more were used by teachers, family, and me to describe my daughter, L, when she began school in Pre-K and on in to early elementary school. I suspected that something was not quite right with her reading development, but I wanted to believe what her teachers were telling me…so I did. And to be fair, they believed it, too. In kindergarten, it took her all year to memorize 100 sight words, but there was no way she could spell or write them on her own. When she began first grade, that spark and excitement about school started to fade and we had so many tears and angry outbursts over the nightly reading requirement. I tried in vain to get her to segment words and sound them out phonetically but she wasn’t making any headway. I remember thinking, “I’m a teacher, for crying out loud! Why can’t I help my own child?!” A conversation with her second grade teacher confirmed my suspicions that she was lagging behind her peers, and so my spouse and I decided to get her a full educational and psychological evaluation done by a private agency. We wanted a complete profile of her as a learner and wow did we get it. Though her IQ was average, her phonological memory and phonological processing was weak. These issues along with a few others led to her being identified as dyslexic, with a bonus diagnosis of ADD. I didn’t know it at the time, but this was a turning point for me not only as a mom, but as a teacher and I coped the best way I knew how: I started researching and learning about dyslexia. This put me in the front seat of an emotional roller coaster that I am still on today. The biggest question I had was: Why on earth, in all my years of teaching, have I not received any information or training on a learning disability that can affect up to 20% of the population and is relatively easy to fix if it’s caught early on? The mom part of my brain was heartbroken, knowing my child had a lifetime of extra challenges ahead of her, as well as knowing how much she had been struggling in school but wasn’t able to verbalize it to me. The teacher/ mom part of my brain was frustrated because I didn’t know what to do to help my own child, despite my years of experience in the classroom; and the teacher part of my brain wondered how many parents had I said the exact same sentences to over the years, when really their child was facing a struggle that was beyond my knowledge and expertise? Argh!

But back to the turning point:  It’s worth noting that I teach in the school that my children attend, and before you start thinking about how lucky I am, let me be clear that it’s hard. It’s much harder than I imagined because of this whole thing– now I was in a position where I had to advocate for my child, and the thoughts and feelings of colleagues I had worked with for years had to be secondary and this shift didn’t happen overnight. I will spare you the details, but for the past two and a half years, I have been fighting to get my child the help she needs, while educating everyone I can on the true nature of dyslexia. Throughout this process, I have learned all about nuances in the Individuals with Disabilities in Education Act (IDEA) and the ridiculously complicated process of proving that my child needs help beyond what the regular education teacher can provide. We have been fortunate to have many teachers past and present who are willing to listen and want to help. Unfortunately, it’s a subject they know little about and in no way do I fault them for that, but I am trying to do something about it.

Somewhere along this journey, I got in touch with a grassroots advocacy group, Decoding Dyslexia. I initially saw them as a resource, but after I posted a few comments on their Facebook page that may or may not have been a little rant-y about the lack of awareness of dyslexia in North Carolina public schools, they reached out to me and asked me if I wanted to be a parent advocate. I jumped at the chance– how could I turn down an opportunity to help not only my child, but thousands of kids across the state of North Carolina?

These past few months, I have been on the phone with parents in similar situations, blown up my Facebook feed with dyslexia facts and symptoms; attended a Charlotte City Council meeting with the head of Decoding Dyslexia NC, Linda William (who is a force to be reckoned with!), where they declared October “Dyslexia Awareness Month” and played a video where I shared L’s story; all of this leading up to a meeting this past Tuesday (March 14) with our state’s new superintendent of public instruction, Mark Johnson.

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All of these women are an inspiration, and they are getting it done. They are moms, advocates, teachers, and everything in between. We shared our stories, and emphasized the need for legislation addressing dyslexia. North Carolina is one of only 11 states with no laws addressing students with dyslexia, dysgraphia, and dyscalculia. Of those 11 states, 7 of them have pending legislation, so we will soon be one of 4 states.  We were grateful to Mark Johnson for taking the time to listen to us and ask questions, and being willing to learn more about what we as a state need to do to meet the needs of ALL our kids. Never in a million years would I have imagined that I would be where I am now, but I am proud to be a part of this. Stay tuned for another post soon about signs of dyslexia and resources to learn more about it. If you made it this far, thank you of reading. I share this because I know there are other parents out there with similar experiences and if that is you, then please don’t hesitate to reach out. Leave a comment, DM me on the Twitter, or fill out the blog contact form; and know that there are people working very hard to get kids in North Carolina the very best possible education they can. Good night, all.

–M.

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5 thoughts on “The Importance of Advocacy

  1. My children are in the same situation as your daughter and I would love some help with getting their IEP’s back if you have any helpful info. Advocating like crazy and it isn’t working.

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      • We are in Wake County, NC. My daughter sounds exactly like yours she is in the first grade and my son in the second. Both doing well enough that they were exited but not able to show their full potential. We don’t have official diagnoses but they are the third generation of kids with Dyslexia in our family. I’m ready to try again for my daughter going to a neuropsychologist, but I did with my son and it didn’t help the situation.

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    • meganmehta says:

      Send me an email via the contact page and let me see who I can put you in touch with up that way… I’m sorry your are having to deal with this– I know how frustrating these things are!

      Like

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