I used to manage a campground. One evening, when Dylan was about six months old, I had a lengthy conversation with a camper. Eventually the conversation shifted to Dylan and I shared that he had Down syndrome. She began asking me a variety of questions, which I welcomed. However, I was suddenly blindsided. She asked, "What is it like to raise a retarded son?"
To be completely honest, I have no recollection of how I answered her. I know the conversation ended not long after that, although this specific question was not the reason for the end of our talk. I know I spoke. I know I responded. The question that will always be in my head is, how did I respond? The Lord knows exactly how I answered and the words that escaped my lips that night where His. All I remember is standing there and thinking, “Retarded”. My son, in the world's eyes, is “retarded”.
It felt like a punch in the gut. It felt like a knife in my heart. I felt as though I could not breathe or talk. Somehow, I managed to finish our conversation amicably. In fact, I remember waving to her as we went our separate ways…even though I have no clue what was included in the final sentences we shared!
Hearing the word “retarded” took me back to my childhood. I was a young girl on the playground - running, joking and laughing with my friends. On occasion, the words "that's retarded' or "you're retarded" would emerge. My heart sank. Had I ever used such a derogatory term towards another peer who really did have special needs? Had they heard? Had a friend, sibling or parent heard? I do not honestly remember. I was not a "mean" kid, but I was a kid once and I am sure I said something inappropriate in this regard somewhere along the line.
Things can roll off our tongues so easily and we think nothing of it. I knew the woman meant no harm by her statement. She was probably in her mid to late sixties and came from a generation that had very little interaction with individuals like Dylan. Years before, individuals with Down syndrome or other disabilities would have been whisked away and placed in a institution immediately, unless the parents insisted otherwise (which was rare). The terminology she used was technically correct but she was uneducated through no fault of her own.
Times have certainly changed. My road of raising a "retarded son" has been much easier to travel than mothers who have gone before me. The comments that are made now are nothing like they once were. Still, my heart was shattered. When I look at my sweet Dylan, I see "Dylan" first. His Down syndrome is secondary. It is just a percentage of who he is. His IEP reads "Mental Retardation", yet I see a little boy who knew his upper and lower case alphabet by the age of three - in both English and Sign Language! From the time Dylan was born, he has been referred to as having Down syndrome or Special Needs. Those were - and they still are - the words that are socially acceptable today. The words “retarded” or “mental retardation” are still used today, but usually only in the medical or educational setting. However, even in these settings they are being seen less and less. The word "retarded" has many stigmas attached to it and it is these stigmas that hold society back from accepting those like Dylan.
Raising Dylan is no different than raising our other children. Can he be more challenging at times? Yes. Do we have to make modifications here and there for him? Of course. However, raising a "retarded son" is certainly not a death sentence or the end of the world, which is the picture I believe the woman I spoke with saw in her mind. So many "normal" people fear individuals like Dylan. People point and stare – and that is to be expected – but Rob and I work daily to embrace this aspect of our life.
I want to encourage you to ask questions. It is not easy, but there has to be a starting point. Life has awkward moments, but it is how we learn and grow. There is a movement called "Spread the Word to End the Word". It will not ever be illegal to use the "R" word, but it can certainly become socially unacceptable, just as other terms in various cultures and races have come to be. I challenge you to join the movement.