Note: October is Down Syndrome Awareness Month
by Dria Law, Moorestown, N.J.
I am the mom of two teenaged girls, one of whom has a disability.
My youngest daughter, Julianna, or Juls for short, was born with Down syndrome, and like many parents of a child with a disability, I found myself thrust into a whole new world. This world revolved around early intervention services, medical appointments, and learning as much as I possibly could about Down syndrome. I was discovering early-on that not only would I need to be Jul’s parent, but also her advocate.
I remember feeling excited when Juls was turning three and about to become a preschooler in our local school district. I was also feeling very overwhelmed at the thought of her first Individualized Education Program (IEP), which would establish the roadmap for her education, and for better or worse, become an integral part of our lives for years to come.
It was around Juls entering preschool that my husband and I started gathering as much information as we could about special education, parental and student rights, inclusive education and the legal underpinnings of the Individual with Disabilities Education Act, or IDEA. We learned about FAPE (free appropriate public education) and LRE (least restrictive environment) and a whole host of other acronyms relating to IDEA. We wanted to make sure we were doing right by our daughter, asking pertinent questions (or even knowing what questions to ask) and pushing for her to get the best, most inclusive education possible.
Before we even went to our first IEP meeting, we grappled with so many questions. Should we hire a family advocate? Should we trust the school district’s recommendations? Should we record the IEP meeting? Even, should we bring coffee and snacks? It was very clear that this was a “whole new ballgame” than what we had come to experience with our typically developing older daughter upon entering preschool.
Over the years since that very first IEP meeting, I have learned a lot about who I am and who I needed to become, as both a parent and an advocate. I’m an introvert at heart who values peace and collaboration, so initially it was a bit disarming to hear talk of fighting for your child’s rights, going to battle with schools, and pushing back against societal prejudice, which it often seems is the conversation in special education circles.
With time, however, I discovered that it was essential to carve my own path and do what worked for me and for my family. I made a concerted effort to get involved and build relationships. I signed-up to be a class parent and volunteered to come in and read to my daughter’s class. I attended parent and school district meetings and tried my best to keep up on the countless blogs, Facebook groups and Pinterest ideas about inclusive education and how to create fabulous tools, like a back-to-school profile about your child. I was proud of my involvement and the things I managed to accomplish. However, on many occasions, I seemed to fall short on time and energy and had lots of moments when I thought, “ahh — if only I had done this or that.”
My journey in education and advocacy has grown and expanded in ways I would have never imagined, or frankly, ever thought I wanted. Case in point, last year, I decided to run for a spot on the board of education for our town. I ran for the school board because I believed I could add value and a unique perspective as the parent of a child with a significant developmental disability. I wanted to have a voice in the culture and policies that guide our school district.
I was fortunate to be elected and am currently finishing up the first year of my three-year term. Being on the board so far has been extremely informative, at times exhausting, and an overall rewarding experience.
After years of participating and advocating as a parent of a child with a disability, and now as a school board member, I’ve seen firsthand the power and impact of knowledge and community. I’ve learned how important it is that education policy align with the values and vision of the community and the best interest of all students. I’ve learned that a positive school culture with a clear administrative vision and understanding of how students with disabilities will be included and provided services is essential.
So therefore, as my journey evolves, I will continue to learn, be involved and advocate for my daughter and all children.
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