The Angry Chromosome

I bought the domain name about a year ago.  It made me laugh really hard to think of writing blog posts from Larkin’s point of view when she is pigeon holed into a stereotype of what kids with DS are like.   Of course this will morph into which is making me giggle even more.  My humor aint right – which I readily admit but man o man do I love to laugh at life and what it hands me at times.

I am here to let the world know that EVERY child has a range of emotions.  Extra chromosomes or not. Larkin displays the following:  joy, anger, cranky, sweet, loving, don’t touch me, frustration, and the list goes on.  So when I hear the following comments:  she will always love you, they are such happy children, she will never leave you, all she knows is love, she is for sure going to heaven because she is pure, (yes that has been said to me more than once)  it is more than a little patronizing …. it’s rude and at times offensive.

Here is one definition of pigeon hole:

A pigeon is a type of bird, and a pigeon hole is a very small hole made in a piece of wood for pigeons to stay in. This hole is only slightly bigger than the pigeon, so the pigeon has little room to move.   If you “pigeon hole” someone, it means that you make too many generalizations about that person based on a stereotype.

So if we stuff everyone with a disability into a hole that is only slightly bigger than they are, we aren’t giving them much room to grow and show the world exactly what they are capable of.  Think of being stuffed into a tight spot and not being allowed to express who and what you truly are.  Would that make you happy?  Would that make those who love you and want you to thrive – happy?

We have a friend Joel who we came to know because he showed up at the little league games where Fourteen played when he was known as 8, 9, 10, etc.  We enjoyed Joel’s company, stories and jokes.  Joel also worked at the County Market down the street and he touched my heart when we were shopping in the store after Larkin was born.  Joel knew I was going to have a baby and he was so excited to see her and I was excited to share her with him.  Joel worked there for years, always showed up on time, never sick, never complained, cheerful and responsible.  Joel asked for a weekend off to go on a family vacation and the store told him no.  Joel was so angry when he told me this story and he quit because the he felt the store was taking advantage of him.

Joel is the one person who moved me to tears because of Larkin’s diagnosis of Down syndrome.  You see Joel, like Larkin, has Down syndrome.  Joel is very aware that he is “different” and is also aware that he has Down syndrome.  Joel knows when people are talking about him, making a joke, or treating him with their version of the pigeon hole.  He told me that he is lonely and that brings me to my knees to this very day with an ache that I can’t tolerate or explain.

Did you read all of the emotions and ability that Joel displays in the above paragraph?  Fun, excitement, hard working, cheerful, responsible, anger, and loneliness.

Think of it from this point of view.  How would you feel if you were not able to express your most basic needs?  Couldn’t sign or speak the words to tell someone what you want or more importantly DON’T want. Larkin has many ways of expressing to me what her thoughts are.  She giggles when she is happy.  Throws both arms around my neck really tight and tries to climb me when she is happy to see me and wants to be held.  Has the biggest upside down frown you have ever seen when we try to brush her hair – which turns into sobbing – and now we know she has a sensitive scalp so we are careful.  The other night at dinner she would spit out the carrot I put in her mouth and pull out the pineapple with her hand and then look at the grilled cheese with an unhappy look.  She didn’t want anything but her grilled cheese.  But it took our intuition and being in tune with her needs and way of communicating to know what she wants.

How frustrated would you be?

About as frustrated as I get when she is pigeon holed.  Remember that everyone has strengths and weaknesses and we have to be able to stand back and assess the situation at hand, be open, and most importantly not judge someone based upon stereotypes. “Aerodynamically, the bumble bee shouldn’t be able to fly, but the bumble bee doesn’t know it so it goes on flying anyway.”

Mary Kay Ash

Larkin has shown me more times than I care to count that her song is being played and I have learned to move to her rhythm vs trying to rewrite her tune.

The next time you see a person who happens to have a little something extra – think outside the box.  Think of WHO that person is vs what you’ve been handed through misinformation.

The next time you see a child having a complete melt down in the grocery – think that perhaps that child needs deep sensory pressure and is out of their element for that moment in time.  Think that perhaps the parents you are judging as not in tune or oblivious are in fact moving to their child’s rhythm for the given situation and children on the spectrum experience all kinds of emotions at not so opportune times.

The next time you see a young man on his bike  pulling his cart, riding in the road,  creating a momentary back up – remember that he walks among us as a productive citizen.

When your groceries aren’t bagged perfectly or the young lady doing so seems a little bit slower – remember she is doing a great job and has been given a chance to show her wing span and how high she can fly.

Dance to a different rhythm.  Find their beat and move your body to their grace and time.  I’m willing to bet you just might find it inspiring, calming, and maybe – just maybe – a little bit fun 🙂

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8 Responses to The Angry Chromosome

  1. This is Joyce. Very well stated. Thank you.

  2. RK says:

    Oh, we miss Joel so much! We knew him for years, before we got married so obviously before we had Braska. His mom was so encouraging to me through some very difficult times, also before we knew of B’s diagnosis. We’ve thought of him often since we left, so thanks for reminding us of how great he is, once again.

    Oh, and M says he loves

  3. Amy says:

    Amen, sister, Amen!!!

  4. Irina says:

    Right on Aim

  5. Anne says:

    Well Joel might have complained just a little bit about his C.M. job… 🙂 Very well put Amy, I might have had a single tear – at least a little misty eye!

  6. Ecki says:

    “I have learned to move to her rhythm vs trying to rewrite her tune.” Oh, Amy, that is just PERFECT!

  7. jfro says:

    that MARY KAY ASH zinger — KA-CHING!! very nice, moving, and heartfelt writing !

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