Advocating in the school setting for my son (who has Down Syndrome) has been one of the most challenging and hardest roles of my life (especially as a sole parent)—and one of the most rewarding.

Unfortunately, exclusion still exists in our communities and despite public education being designed and legally mandated as the most inclusive, sometimes parents do have to speak up and show up for our children, particularly those with special and different learning needs. We not only have to advocate at every IEP meeting, but many times in between. It can be daunting and overwhelming and exhausting, frustrating, and, yes, it’s ok to say, infuriating. It can even be traumatic.

Parents who are also caregivers for children with special needs need all of the help and resources that we can get. We, ourselves, need compassion and allies who are willing to work with us for our children’s advancement—which can be emotionally and practically taxing when we are sometimes perceived as adversarial for simply asking for the best for our children. It is a long road. I have experienced differences between the seasons of growth and promotion from early intervention (EIS) to elementary school into middle school and eventually to high school and beyond. The lessons do literally become different and more difficult to navigate for some. That’s why attrition is higher among secondary school students with disabilities. Parenting and advocating requires stamina and steadfastness. It also requires knowledge and assertiveness—and follow-up, follow-up, follow-up. One principle that guides my advocacy is this: we collaborate in reality with reason while continuing to expect an appropriate education (FAPE).

I’ve experienced (and survived though what feels like barely) hard fought battles within the system, and offer my experiences and lessons learned as well as the knowledge I’ve accumulated. I help other parents and students practically navigate this complex process of special education (especially the older our children get), and hopefully plant seeds of possibilities and for progress.

We have personally experienced a variation in educational settings: early intervention (EIS), then public school, then private school, then homeschool, and eventually back to public school for most middle and high school.

My son is graduating from high school soon, and we are exploring post-secondary educational and employment options. And—we as special education parents in order to discover the surprisingly many options available to them after high school, must be more involved, more aware, more knowledgeable, more persistent, more committed and more willing while they are in school to address and meet their needs and potential. It is never too late to advocate for your child.

It would be my honor to simply talk with you or walk with you on the path to your child receiving the wholistic education they deserve to prepare them for a future that awaits them.