Wednesday, May 4, 2016

Hemianopsia: the invisible disability

Many of Trevor's challenges are not visible on the surface. Perhaps the most profound is his vision loss.


 Most people are captivated by his beautiful, expressive eyes and never know that they are imperfect in their ability to help him see the world around him.




Hemianopsia is a very real disability and significantly impacts his life on a daily basis.


It's why playgrounds give me panic attacks and I won't allow him to climb them without someone to protect him from all the random death hatches openings. It's why he's anxious (bordering on terrified) in crowded places. So many people and things hiding on his blind side just waiting to pop out and bump or be bumped into. It's one reason why anything near water is terrifying for his dad and I. He could fall into a pond and drown without ever having known it was there. It's why I fantasize about getting him a service dog. It's why he's often marked or bruised on the right side of his face and body. My heart squeezes every time he injures himself on something he didn't see. Now that he's older and has more words and blossoming emotions, he'll often cry giant tears of unfairness and say, "I didn't know. I didn't know!" It's why I'm not sure if I'll ever trust him to cross the street alone. It's why sometimes he'll appear to lose interest in a game. I've observed teachers/care givers assume he's "all done" when in reality the ball just rolled into his blind side and he doesn't know how to find it. I try to use those moments to educate by helping him find the ball so he can continue playing. As he's matured, I've also been trying to educate HIM too. His hemianopsia is one layer of why teaching him to read is tricky and requires extremely individualized instruction. For instance, he continues to struggle with deciphering between the letters, u, v, and w. All characters which look very similar in appearance. Does his field cut make it difficult for him to distinguish? Because he has intellectual delay as well, it's very easy (and frightening for me!) to assume it's a cognitive issue rather than vision loss.


In spite of the profoundness of his vision deficit, he has learned to compensate well and most people would never even know and probably think I'm a loony toon when I share that he's lost half his vision in both eyes. 


I've listed quite a few ways I've observed his vision loss impact him (and us by extension) but without having hemianopsia myself there are absolutely areas that even I am not aware of. At this time, Trevor cannot articulate the way his vision loss impacts him from moment to moment, which is why my heart rejoices when those who are able to articulate share their experience with us. It's an opportunity to learn and gain more understanding, which will help me continue to provide Trevor with meaningful support.    


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