What does freedom mean for my son with special needs?

Tomorrow is Independence Day, and while it's a great time to have a barbeque with friends, watch some fireworks and head to the beach, have you ever taken time to think about your rights, liberties, and pursuit of happiness? Or, to think of it another way, on a day that we celebrate our freedoms, maybe we could all take a moment to think about what liberties we are granted (and maybe also take for granted) that others may not have the same right to. 

This year, celebrating our freedom certainly means something different to me than it did last year when I was pregnant with Mark, and even more so than it did all of the years before that. Before Mark. Before I knew anyone with Down syndrome. And, most of all, before I ever imagined what life with a child with special needs would be like. Now, let me be perfectly clear: our life with our son is wonderful. He is a happy and loving baby, and if you asked him what "pursuit of happiness" means to him, he would undoubtedly tell you that it means food and snuggles. Yet, while we are enjoying watching him grow and just be an infant like his peers, we have had our own challenges already and it is not lost on me in any way that there will be trials ahead. We will be tested. We will have to advocate for our son with Down syndrome, our son with special needs. We will have to fight for his freedom to be included in school programs; we will have to fight for his right to be included in the workplace and be given equal pay for equal work; we will have to fight to ensure his happiness as a contributing and accepted adult man living with Down syndrome in this country. 

And the fight for freedom and equality, inclusion and acceptance starts now. It starts by raising awareness. It starts by educating people around us about the inequalities and civil rights issues that continue to face people living with Down syndrome and those with other disabilities. Mark may be a baby right now, doing cute little baby things. But before long he will be in preschool, and we will begin the process of creating an individualized education plan (IEP) that will continue with him for the duration of his education. He will go to elementary school, and that will begin the fight for free appropriate education in the least restrictive environment (e.g. FAPE in LRE) that could go on for the remainder of his education. We don't know what Mark will enjoy or want to do with his life, but he could very well want to go on to a college program or do some kind of post secondary education; we may have to fight for that too. And when he holds a job, we may have to fight against the antiquated and restrictive laws that continue to allow employers to pay individuals with disabilities below minimum wage. 

So, we will all celebrate tomorrow doing fun and festive activities out in the smoldering July heat and humidity of Maryland wearing red, white and blue in commemoration of our great nation. Because it is great. But, it will be done with all of this in mind. It will be done with the knowledge that the future for Mark, for our family, for all children - neurotypical or those with special needs - is only as bright as we are willing to make it through our own love, devotion and hard work. Please, take a moment today to think about all of the freedoms and liberties that you and your children enjoy. Be thankful. I know that we are thankful for all that we have, but we are also here to fight for the people that we love and are grateful to call our family and friends in the Down syndrome community. 

And we hope that you will be by our side.