Thursday, August 28, 2014

Super Powers

Special Needs Parents often joke that our super power is indeed simply raising a child who has special needs.  While that could conceivably be true to a large extent, it's been my realization that true super powers reside within my child.  With each passing year, I've watched Noah find ways around his physical challenges and growth of these incredible super powers.  Noah's eye-sight and hearing are phenomenal.  I mean better than the average human phenomenal.   He can see things in the distance before I ever do.  A plane in the sky that looks like a speck to me he can recognize, track and follow with such ease.   Vision therapists insist that brain injuries like Noah's are likely always associated with some level of CVI (Cortical Visual Impairment).  However, that hasn't been our experience with Noah.  His tracking and focus is spot on, and sometimes we even wonder if he's seeing things the rest of us can't.  


Yesterday, I thought I'd take a moment to troubleshoot Noah's Tobii Eye Gaze device.  He has a program called Sensory Guru, which is a series of eye-gaze games.  When you toggle between his talker options and Sensory Guru you have to disable a mouse-like feature which I can't seem to get down.  So I always try to work on it before I set it up for Noah as he isn't patient and it inevitably takes me a while sometimes to switch the settings back and forth.  Ideally, I need Tobii customer service support on speed dial.   I was in a bedroom at the opposite end of the house, and as soon as Noah heard me playing with it, he started throwing a huge fit because he wanted his talker.  

*Note to Self:
Next time shut the volume off first!

I tried to speed through figuring out what I was doing wrong, to no avail.  Noah's hysterics and tantrum growing larger with each second.  It was over the moment he heard what I was doing... with those super sonic ears of his.  I never dreamed he could hear what I was doing that far away.   I finally fiddled with it to the point of it recognizing my eyes, but triggering a pop up menu and circle guide that periodically wanted to magnify, but it was enough to get us by to stop his tantrum.  

Noah also has this uncanny ability to detect other people's movement, even if he's sleeping in his sleep safe bed which is a good four feet off the ground.   Without fail if I happen to turn over in bed, or get up to as so much go to the bathroom in the middle of the night Noah is up.  He senses everything!  It is almost as if he can sense or feel the movement no matter how quiet things are. We have a squeaky bedroom door that we leave open purposefully, the alarm that goes off at 4am that is set to a CD with birds chirping to make it sound as quiet as possible... none of it works.  He stirs, and wakes up to all of it. 

As Noah has grown older I've also found him cognitively working very hard on telling his body how to get around his limitations.  Noah has the ability to open and close doors with his feet, and can decide when he wants to close the door all the way so it will latch.  If you open the door he'll roll back and close it again because he wants his privacy.  He can open kitchen cabinets with his knees and legs, and close them with his feet and ankles.  He uses his face and chin to hold books and swipes with his hands to turn pages so the book can't get away from him.  He's very smart, and tremendously clever. 

Sometimes I just watch him in such awe.  He's finding ways around all these obstacles in his life.   And I love that he has the ability to out-think problems and things that are standing in his way.  I'm fascinated by his intentional movements and what he's telling his other body parts to do for him.   I suppose to some degree we all have the ability to compensate for things we can't do. 

Yet, I'd hardly say that things like me finding a way to reach an octave on the piano by habitually rolling cords because my hands were much too small to do it any other way (much to the dismay of piano teachers), even compares to what Noah is doing.   The level of his thought process and his heightened senses are indeed nothing less than super powers. 



The brain is amazing.  It has the ability to adapt to loss by giving itself a makeover.   The brain is able to navigate new ways of movement and thinking even when significantly damaged.  Researchers studying neuroplasticity know that our brains have the ability to change with experience.   Which is just one of the many reasons we are drawn to certain types of alternative forms of therapy for Noah.   We know that these therapy modalities are giving Noah the maximum opportunity to learn new ways of movement - his way of movement.  We are offering him the bridge to build new pathways.   And he's obviously building some super power pathways! 

Love,




Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.