I was telling my friend Maureen about how obsessed we have become with the Showtime series, "Homeland" when she told me we should watch an HBO movie featuring Claire Danes called "Temple Grandin". We finally started watching it about two nights ago and were immediately mesmerized by the story of Temple Grandin.
Grandin was diagnosed as having autism in 1950 went on to earn her Ph.D. and is one the leading livestock handling equipment designers in the world as well as a self-advocate for individuals who have autism.
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| Claire Danes stars as Temple. |
While her mother, Eustacia, was told to institutionalize Temple, she refused. She fought to have her daughter included in typical schools and to have every opportunity her other children had.
Her mother's motto throughout the movie was that Temple was, "Different, but not less." How her words rang so very true for our family. Tom and I sat in silence and watched Temple's journey and struggles to be given the same opportunities others were given. Our eyes filled with tears as we watched her mom go from struggling to teach her to talk to attending Temple's college graduation.
Being a parent advocate is such a fine line to walk. You have to learn to balance your passion and emotion with clarity and calmness to be heard. You have to advocate (which literally means to plead the cause of another) in a way that is meaningful and helpful instead of detracting from the cause you are trying to champion.
In a world where the idea of perfection and "healthy children" are the supported ideals, it is sometimes an uphill battle to help convince the world that while your child might be different, he certainly is not less. Watching what the world looks like to Temple Grandin made me really wonder what the world is like for our Joey. Is it frustrating for him not to be able to verbalize his feelings? Does he get tired of not knowing how to walk? Do our every day noises overwhelm or bother him? I don't know the answers, but I do know that this movie was a great reminder of trying to be empathetic and trying to continue to understand that the world can be a very overwhelming place at times for individuals who have special needs.
Do different people stress you out? Have you ever avoided making eye contact with someone because they were in a wheelchair or looked different than you? Have you ever found yourself saying something incredibly awkward because you didn't know what to say to someone who was different than you? Why are differences so difficult for us as humans to accept? I'm just as guilty of it as anyone else. There are times when I look away from another family or child at the hospital because I just don't know what to say. I know what I should say is something from my heart. The same things I would say to any child. Things like, "I like your shoes." Or, "How are you today?" It is something I continue to work on and try to improve.
In our world, there are days I handle the stares and awkward conversations with grace and ease. Then there are the days I'm just not up for it. Days like today while I stood in line to get my medicine for strep throat and the woman in line in front of me JUST KEPT STARING AT JOEY. I smiled the first time we made eye contact, but it started to get awkward after about 5 minutes. It's the same old problem I have. I honestly forget he has Down syndrome. I forget that it's a thing to some people. I forget that Joey probably looks different to some people. In all honesty, the woman probably knew someone else who has Down syndrome and wanted to say something, but she didn't know how to, so she stared at us. It also could have been that she felt bad for my two kids having such a disheveled mom in her house slippers out at the pharmacy. Whatever it was, it just happens sometimes and it is our mission to continue to educate the world that Joey and people like Joey might appear different, but they certainly are not less.
It is also for this reason that I am so very passionate about prenatal education and information for parents who find out their child has Down syndrome (or any other syndrome) in utero. If I could I would stand from the highest of mountains and scream to the world that children with Down syndrome might be different. They may have some additional health concerns. They may have some additional learning challenges. They may be a lot of things, but they are certainly not a single bit less in the eyes of God.
While Temple's mom was advised to institutionalize her daughter back in the 1950's we were encouraged to abort or even put our child up for adoption. If I can help change that thought process for even a single parent, I will have succeeded. An excellent source for expectant mothers who have received a prenatal diagnosis is Down Syndrome Pregnancy.org.
Have you spoken to someone outside of your comfort zone lately? Are you okay with differences? What would you do if you were pregnant and were told your child has Down syndrome?
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