I don’t often write about my family, but I was deeply touched by a recent post by Melissa Wiley concerning her son’s recent diagnosis.
Her post got me to thinking about the many different ways that parents of special needs children are their child’s best advocate. I don’t have experience as a special needs parent, but as a sibling. My younger sister was diagnosed with Cornelia De Lange Syndrome, a form of mental retardation many years ago. My parents unconditional love and advocacy for my sister have taught me the importance of learning all you can about any situation you may face and that you can be your own best advocate and for those you love.
Melissa mentions in her post that there is debate these days over the words mentally retarded being used to describe this community. A new set of words are popping up, intellectual disability and developmentally delayed. I suppose that part of the reason some have pushed to change the words mentally retarded to developmentally delayed or intellectual disability is because of those who have abused the words.
I’ve been with my sister to many a medical visit where they ask what is wrong with her and we tell them she is mentally retarded, or more specifically was diagnosed with Cornelia De Lange. However, those times are not a cruel use of the words, they are just factual. I experienced the cruel times as her sibling growing up and hanging out with others who’d call someone else a retard to make fun of them. If you don’t have a mentally retarded family member, I suppose you wouldn’t be as sensitive to that usage, but since I do, it has been irritating to hear in jest and maddening when it has been directed at my sister directly. I’m hoping that as other parents of so called “normal” children become informed, they will inform their kids and that Wonderboy, his siblings and others will receive a little bit more of that wonderful unconditional love they willingly give and so deserve themselves.
Melissa’s website, her books and her blog are wonderful resources for all parents 24/7. I’ve added a special needs category to the blog and I hope that if you know of any special needs resources, you will leave a comment or send them along for me to share here. I can’t think of a better first special needs resource to share here with you than Melissa’s recent post, My Wonderboy .