Navigating the rough seas that come with advocating for your child

If you've ever sat through an IEP (individualized education plan) meeting, you've likely found yourself confused, determined, frustrated, curious, optimistic, pessimistic, and a hundred other competing emotions. And it's not just parents, I know educators who feel the same way in these meetings. None of our children, special needs or not, come with a road map. And when parents and educators sit down at the conference table for an IEP meeting, tensions about what's the best educational path are inevitable.

In 2015, when Emelyn was approaching three years old, we began the intake process for her IEP at our local school system. Despite my best research, I still felt unprepared, confused, and timid. Were we walking the correct path, with the correct people, with the correct goals? I had no idea, but January of 2016 came and we signed the IEP and sent Emelyn off to the local school system’s preschool special education program. 

Fast forward several months and it was clear our IEP was not a success. Emelyn was not making progress—if anything, we were seeing regression since her departure from early intervention. After several meetings we decided to pull her out of the school system and enroll her in an ABA-based clinic. (See my two other blog posts about our ABA experience: New diagnosis, new therapy, new opportunities and ABA, it may not be what you think it is.) 

ABA was an immediate success for Emelyn. Within weeks of starting she gained skills we thought were years in the making. And she began opening up to the world around her. I’m convinced, more than two years later, she would not be where she is at today without the wonderful people and solid plan at her ABA clinic. They love her and they push her to be the best Emmy she can be. But, her time at her phenomenal ABA clinic will come to an end in 2019. She will age out of their program and we will return to the school system to continue Emelyn’s educational journey. This time, though, I will be a different kind of advocate for Emelyn. I have experience and knowledge that I didn’t have last time.  

This time last year, as I approached my final essay for my master’s degree, I sat with my advisor, curious about how in the world I was going to find inspiration to fill approximately 50 pages with coherent and purposeful words. With a broad umbrella of leadership, my advisor asked me what I was curious about and what would be meaningful for me to research and write about. Without much hesitation I shared my frustrations with advocating for Emelyn in an educational setting—how I lacked confidence in the next best steps, how the relative newness of DDX3X meant there wasn’t much data, and how I wasn’t alone in these feelings. And an idea was born.

Before I could write a word, I needed data—there was a tremendous amount of informal data floating around our private DDX3X Facebook group, but I needed data suitable for a scholarly publication. Collecting data on human subjects requires involvement from the Institutional Review Board (IRB) and when you’re talking about a vulnerable population, they (understandably) make sure you follow all the rules. Their approval process took two months, an 18-page application, and a lengthy survey. Once I had the IRB seal of approval I started collecting data and researching relevant peer-reviewed journals. I probably could have researched the thing to the end of the internet, but luckily my advisor, the wise Abrina Schnurman Crook, Ph.D, reeled me in. At last, after months of writing, my final essay was off to the second reader and this is where I held my breath. The second reader and director of the MALS program at Hollins University is a well-respected, retired superintendent of schools, Lorraine Lange, Ed.D. Would she tear it apart or bless it?

To my pleasant surprise, my final essay received her blessing (with a few small changes, mainly to grammar because let's be honest, that's not my thing) and I had the last requirement for graduation complete. My master’s journey came to an end. I’m embarrassed to admit, that was more than eight months ago. From time to time I talk to different DDX3X parents and share the completed essay to help them on their educational journey, I just haven’t devoted the time to sit down and prepare a blog post dedicated to sharing it broadly. Shame on me. But, finally, without further delay, here it is:

Leadership Strategy Manual for Navigating Elementary School Services for Children with a DDX3X Genetic Mutation (Also available for download on Hollins Digital Commons.)

You’ll find I grouped the essay by barriers—barriers our children face as a result of their DDX3X mutation, barriers our children face in the school system, and barriers parents face as they advocate for their child during the educational journey.

Is the essay perfect? Most definitely not, but it’s a start. If you’re a parent wondering aimlessly on the educational journey, I hope its content will provide guidance and direction to you. That is its intent—to help you navigate the rough seas that come with advocating for your child.

Graduation day with Patrick and Aubrey.
It was a gorgeous day on the Hollins campus.

I have a confession to make

Confession: This blog exists for many reasons and one of those reasons isn’t all that altruistic.

Here are the five reasons this blog exists:

Reason #1: I want to be a resource for families. When we received Emelyn’s diagnosis in September of 2015 there was only one medical journal about mutations in the DDX3X gene and their link to developmental delays and intellectual disabilities. There was no website, no foundation, no video, no brochure...nothing! This blog was my way of giving DDX3X a real spot on the world wide web for folks to learn about DDX3X.

Reason #2: Writing is a form of therapy for me. Each blog post allows me to unpack the latest Emelyn happenings, be it joyful or challenging, in a deeply reflective way. While writing does not possess this kind of therapeutic power for everyone, it certainly does for me.

Reason #3: Language matters. I’ve developed a love of language over the last few years and it’s important for me to put thought and intention into how I frame up Emelyn’s strengths and weaknesses. I never want to speak about Emelyn in a way that evokes pity or paints an unrealistic picture. This is especially important for families who just received their child’s diagnosis. I want them to leave my blog with hope for their daughter.

Reason #4: Emelyn has a fan club made up of family, friends, church members, co-workers, friends of friends, doctors, therapists, researchers, teachers, and even perfect strangers. These are the people who love and pray for Emelyn, donate money to the DDX3X Foundation in honor of Emelyn, fight insurance companies and school systems on behalf of Emelyn, and cheer for Emelyn at each and every accomplishment. Because of the love from these folks, it’s important to me that I keep folks informed of  how Emelyn’s doing.

Reason #5: Lastly, and here is where the confession comes in, this whole blog thing was a course requirement. Yes, that’s right, I had to do it! In early September of 2015, as I sat in my fourth course for my masters degree, I was informed by Dr. Ken Nicely that one of the course requirements was to start a blog. Seriously! What the heck was I going to start a blog on? Couldn’t I just write a paper or take a test. Then, as divine destiny would have it, just a few days later came the call from our genetics counselor with Emelyn's DDX3X diagnosis. It was that sequence of events that led to this blog.

While that course ended in December of 2015, the blog has lived on. No longer is this blog a four-credit course requirement for graduation—instead it’s a labor of love to share Emelyn’s story with you and to raise awareness about DDX3X.

It’s not always easy to keep current on the blog—for me as the writer and for you as the reader. We live busy lives. Some days I grow weary of writing. Between work, school, and volunteer work I have far more screen time that I’d like, but today I had confirmation that this blog matters. A mom from Australia was doing what every mom does when you have an undiagnosed child and desperately needs answers—she turned to the internet. This particular mom found this blog and saw her daughter in the words and photos of Emelyn. She visited DDX3X.org to further her research. With her momma-gut guiding her, she consulted her daughter’s doctor and requested they look for a change in her daughter's DDX3X gene. Turns out, her momma-guy was right. Her daughter has a mutation in her DDX3X gene. Not only did this blog get me an A back in 2015, it got a family answers and direction.

So here is where I’m going to get a little sappy in you. Do you ever feel like God has a plan for you? I certainly do. He knew good and well that I wasn’t going to start a blog on my own—He (through Dr. Nicely at Hollins University) had to make it a course requirement to get me started. And because of that course requirement I’m helping others get answers to the questions they have about their child.

So, there you have it, I’ve confessed my intentions and I have to say, I’m proud of this little venture. And I’m proud of you, my faithful readers, for sticking with me. Your support means so much to our family.

(I leave you with the following video of Emelyn sporting her new helmet and walking like a champ.)