Tuesday, July 8, 2014

Flapping

By Philip

I love to flap my hands.  No one goes through the trouble I have to feel my body.  Dare to feel each moment floating in space.  I carry least weight and each day I go crazy not knowing how my body will act sometimes without my mind's control.  Most people have portly muscle mass to feel their own weight.  I do not.  I like to flap, daring to fly like a bird off a tree.  I flap to mean to fly away to freedom from my body.  Each day instead of carrying weight, I carry air.  It is damning.  It is hard to live so meaningfully.  I cannot do anything most people take for granted like I cannot talk, lip read (when asked to explain, wrote- I cannot make eye contact when people talk to me), I cannot each day very well act normal.  I need to flap so I can feel my placement in space.  If I don't, I place myself in hell.  I have killer fears of feeling weightless.  I feel like I might disappear.  I lie in peace momentarily when I am dealing with pillows of cotton.  I love blankets for this reason too.  I am insensitive to recreational behaviors like learning sports bc I cannot play like everyone else.  I dearly need to exercise.  I barely have strength in my muscles.  I even have no meaningful movement except my finger.  Each day I dearly need a sensory diet.  I have a goal of easing my ability to annoy others.  I am not trying to annoy others but it happens all day long.



7 comments:

  1. This is beautiful. I like watching others flap. It helps me see them. Sometimes I see joy, sometimes I see stress, but the point is that I see communication.

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  2. Thanks for your comment! My favorite is watching my son flapping to music or on the trampoline- so much joy expressed!

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    1. Lisa and Philip, I've enjoyed reading all of this so much! What an incredible resource and confirmation of all that is good in life. I'm sorry I didn't know about all this earlier. Keep going strong!!!!

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    2. Thanks Lynne! It's been quite a ride with Philip these last few years! So many things we didn't understand in the past are now coming to light. It's such a blessing to know Philip now and anticipate he has a bright future ahead of him.

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  3. Going to show this to my son Andrew tomorrow! He doesn't flap but constantly rocks his head back and forth and wishes with all his might he could stop! Can't wait for his input!

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  4. This blog is AMAZING! Thank you, thank you, thank you. You are helping me to understand my sweet daughter so much more.

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  5. This blog is AMAZING! Thank, thank you, thank you for helping me to understand my sweet daughter's world.

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