I borrowed this from the Down Syndrome Program at Boston Children's Hospital. It is so well written and I must admit I was guilty of wondering "how bad" Clay's Down syndrome would be in those months of the unknown. After spending 10 wonderful months with him, I know his Down syndrome is...just his. It will be a part of him forever and that will make for good and bad days but it makes him his wonderful, unique self and you can't "rate" that...just like Hazel's hot temper or Wyatt's struggle to do things independently. I don't rate their struggles and accomplishments.
Post #25 for National Down Syndrome Awareness Month!
"He must be mild? Will he be high functioning? First let me say, certain things bother me, certain things just rub me the wrong way but I try to be tolerant and patient. I try to smile and nod. I try to let things slide off my back BUT please, oh please, don’t ask me to “rate” my child or “compare” him to other kids “like him”. Why on earth do we do this? Why do we do it amongst ourselves and our own community? I get told “Isaiah seems to be high functioning”. I won’t even discuss this….my reply is always “Isaiah has things he is good at and things that are tough for him like ALL kids” I don’t see him as high functioning, I don’t see him as medium functioning or low functioning (whatever that even is). I see him doing what he does as he is able to do it. Enough with labels, enough comparing and rating! Mild DS? He has DS, so be it. What that means for him is different than what it may mean for another kid but they are DIFFERENT kids. I am a 43 year old female with black hair (some greys if behind on coloring)…compared to other 43 yr old females I am functioning at a moderate level. WHO SAYS THAT? Is that even human? What does that mean? My sister went to Harvard…does that mean she is higher functioning than I am since I didn’t? I think folks grasp at straws and think the more “mild” the more “higher functioning” equals more capabilities but why does it seem wrong to me. Why does it pain me to feel that a mom is being told out there somewhere that her child is lower functioning. Her child has their successes, her child has their abilities, her child has their strengths…no matter how we rate them or feel they aren’t the most capable…they are hers. Isn’t it enough to know what is good and what is hard. What is gained by more labels? What is gained by the pressure of hoping your child is mild? What is the benefit of saying someone is low or high functioning? Is this child benefitting somehow? Is the family getting better care, services, love, celebrations, pats on the back, awards? Maybe it’s just me and my quirks but I just don’t get it. I celebrate my son and see him as he is NOT where he rates in the eyes of someone lumping him into a category amongst his peers with DS. Is anyone else tired of these words? Isaiah is Isaiah, Jack is Jack, Sofia is Sofia…let them “function” as they will, let them be…."
One of the great moms from my Down syndrome group said this to me in an email shortly after Clay was born and I thought it was brillant - not just for our children, but for so many moments in life!
"Comparison is the thief of Joy." - Theodore Roosevelt
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