Having a child with special needs is not easy. I know, I have one. Regardless of the child’s disability, parenting a child with a disability is just harder than parenting a typical child. Throw in a significant developmental disability or a serious medical issue, and the stress and anxiety levels increase exponentially.
My son was diagnosed with a rare chromosomal disorder when he was 14 months old. The weeks and months that followed his diagnosis were some of the most challenging of my life. I struggled with the unfairness of it all. As I looked around at other, typically-developing children his age, I was constantly reminded of how far behind my son lagged. I can remember leaving many toddler music classes in tears because, for an hour, I had to watch the other children my son’s age display their budding skills and abilities. While the other parents compared notes about how their children were crawling, walking, beginning to talk, or smiling and waving, my sweet little boy just sat, not doing much of anything. It was a very tough time.
At some point, however, after a several-month-long pity party, I pulled myself up by the bootstraps and stopped feeling sorry for myself. I embraced our family’s new reality and got going on putting a plan together to address my son’s needs. As it turns out, those painful months proved incredibly formative in that they opened my eyes, ears and heart to the pain and the plight of other parents. They also instilled in me a deep desire to do my part to help parents through the challenges of raising their kids with special needs.
At first, my interest focused on creating opportunities for parents to gather and share information and experiences with one another. I believed then and now that there are a few things more comforting and empowering to a parent raising a child with special needs than learning that they are not alone in their journey. After starting a successful parent support group in New Jersey, our family moved to Nashville. There, we experienced a rather nasty indoctrination into the realities of the world of special education. What had been a relatively painless process of working with the school system in New Jersey became a nightmare in Tennessee. Our family of two lawyers was forced to hire two more lawyers to help us resolve the issues, and all I could wonder was how hard it must be for other families if it was that hard for us. The experience refined my previously broad-based desire to help families into a much more specific desire to help them navigate the special educational system. I didn’t want other families going through what we had gone through, and I knew that with my legal background, I would be equipped to help families with these issues.
Fast forward seven years, and I am pleased to say that I am now part of a dynamic duo that started the non-profit, Special Education Advocacy Center of Tennessee. The other half of this duo is my amazing friend and colleague, Wendy Tucker. She, too, is a parent of a child with a significant disability and because of the things she has been through with her child, she feels equally passionate about supporting families through the special education maze. Together we are doing our part in providing support and services to families struggling to ensure that their children receive an appropriate education. We are humbled that families trust us with their children and situations and are gratified when we can help them achieve positive outcomes for their children.
Make no mistake about it — if I could wave a magic wand and make my son’s disability disappear, I most certainly would. However, my journey with him has been incredibly rewarding and enriching,and I am grateful for all that I have learned and experienced through being his Mom.