When I hear this word I feel like I've just been punched in the stomach and then I get furious and then I cry.
I am a single mom raising a son with autism. 21 years ago, I read "Autism: a permanent developmental disability requiring lifelong care for which there is no known cause or cure". In that moment my world shifted. Today more than 3.5 million readers have shared in our journey through this blog as I have detailed our 21-year journey of grief, joy, disappointments, successes, lessons, strategies, personal challenges, frustrations, fears all as they unfolded- day by day.
Thursday, February 14, 2008
Words Matter - When you take away hope
“Plateau” I hate this word. I just heard it again in describing how Nicky was doing in one of his programs.
When I hear this word I feel like I've just been punched in the stomach and then I get furious and then I cry.
This time when I calmed down I asked myself “why does that word take me to such a bad place?” I’m sure the word “plateau” has a clinical meaning and when professionals use it they are just stating facts as they see them. Nonetheless I think there are some words that professionals should only use when talking with each other and not when talking to parents and plateau is one of them.
Because when I hear "plateau" I hear, there is NO HOPE he's not going to learn any more. All I hear is someone telling me that my child has reached his potential. Hell I'm an adult and I haven't reached my potential! I hear he’s not capable of doing any better. I hear he is not going to improve any further. And hardest of all I hear, any hope I have for him developing further needs to stop here, because he’s reached is full ability. I hear that my HOPE for his future - which is what keeps me going – is a fantasy and I need to accept that he's not going to do any better.
I logically know this word is used in a clinical way and not meant to hurt me. But it does hurt me and it scares me and it makes me furious. Nicky is a 9 year old, and we don’t know enough about autism and no one, not even me gets to say what he’s capable of and no one get’s to say my 9 year old has reached a plateau. No one gets to take away our hope. No one get’s to put him in a box. No one gets to say “that’s it”. Maybe that’s not what people mean to convey, but it’s what I hear.
When I hear this word I feel like I've just been punched in the stomach and then I get furious and then I cry.
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