What Would You Do...What Are You Doing????

This video came to me through one of my listserves. Did you find yourself understanding and feeling like the first woman, afraid to speak up or were you cheering with the second woman?

As a parent of a special needs child I of course loved the second woman's reaction but all too often I see and experience how the first woman reacted. I, myself...have even felt like that first woman. The controversy that rocks the blogging world about the use of the word "retarded" is one that I have personally struggled with.

I understand that fundamentally using the word "retarded" derogatorily is wrong and damaging to our children. However if I am being honest...I have used the word in that way and have felt an enormous sense of guilt and confusion that someone like myself...so adamant in raising awareness could make a mistake like that. I do view it as an awful mistake and am not proud of such a huge error in judgement. But I am human and I like many other people make mistakes.

I have heard my friends and family use this term and at times I have failed to react...to point out...to educate. I have been like that first woman, shocked but choosing not to react. I sometimes wonder if my indiscretion stems from my difficulty in acknowledging the aspect of mental retardation as part of Sam's diagnosis. Let me try to explain this further...

When Sam was diagnosed with Down syndrome I read everything I could about the diagnosis. I was okay with him meeting his milestones later, potential issues with speech, physical differences but the part I couldn't accept...couldn't quite wrap my mind around was mental retardation. For the longest time I couldn't even say the words "mentally retarded"...to this day I still say "cognitively delayed". I remember thinking so what does mentally retarded mean?? Is his brain different, different shape, different color...why can't he learn like we do??? Well, those were very early thoughts and I have come to the conclusion on my journey with all 3 of my children that everyone learns differently. The Doman's have explained to me that it may be harder and take longer but Sam's brain can make the needed connections. I live off of that hope...but in my years of working with Sam I have at times doubted that statement. I have often wanted just the child with Down syndrome...Sam's other issues of brain injury, apraxia, respiratory/immune issues and bi-lateral conductive hearing loss have given me a child that struggles in areas other children with Down syndrome don't have to deal with. I feel so confused at times...not sure if I'm dealing with a hearing issue, a processing issue, a behavior issue or if he just doesn't feel good. Again, why does this have to be so hard??

As I've travelled on this journey with Sam I have become stronger. I can now say "mentally retarded" although I still don't like the sound of it and prefer to say "cognitively delayed". I don't use the word "retarded", it just isn't and can't be part of my vocabulary any more. I correct my family, friends and friends of my children when they use the word "retarded". Not yelling at them but instead reminding them of Sam and how using that word negatively can hurt him. As I watched the video I felt the pain and shock of what can happen if we don't take a stand regarding the use of that word. It physically hurt me to think of Sam in that actor's position. I wanted to deck that woman!!

This video again has shown me how my journey with Sam has impacted and changed my life. I do believe that children with special needs are sent to us with a purpose. Sam has humbled me, he has caused me to look at my life in a very different way. I'm not always proud of what he shows me about myself, but I am forever grateful that he loves me anyway. This little boy strives each day to teach me life lessons that without him I would have never learned on my own.

"The only journey is the one within".