In the last year, Steven has begun to notice the stares, the comments, the pointing. And, he's finally figured out why some kids try to grab his arm on the playground and poke it. He's different. His arm is different.
And, all the normal things that come from that realization have happened. He's less comfortable when out and about. He's angry when people look at him and point. He will dirty stare any adult that hovers or tries to be overly helpful. And, he will definitely sic the sisters on kids that try to grab his arm. And, they will talk your head off with big words like "amneotic band syndrome."
In Steven's annual visit with his limb deficiency clinic (yes, that's really what it's called), they concluded he was a healthy, capable, nothing-can-stop-me little boy. So true, so true! We also talked about ways to help Steven deal with the attention. It won't go away, every kid or adult with a limb difference or a wheel chair or something that makes them unique, has to learn their way of handling the uninvited attention. We know as Steven grows his natural sense of humor, charm, and curiosity will help him handle it with grace, good will, and the occasional alligator joke.
But, for now, he's three. And, it's a lot. So, the doctor recommended we try a 3d printed arm. Not because he needs it, but because it could be a bridge to language that will help him talk about his differences to other kids. The words amneotic band syndrome mean next to nothing to Steven or any other kid on the playground (sisters excepted). However, the concept of a "robot hand." Well, that's easy to have a conversation about at almost any age.
Thanks to the incredible volunteers at Enabling the Future, Steven received his very own "robot hand" in the mail this week. It is unbelievably cool. It has Lego patterning so you can build on it, there is a train hidden in the fore arm. It opens and closes as he bends his elbow.
Steven loves everything about his robot hand... except wearing it. Awesome as it is, it took Steven only about 60 seconds to realize that he was way, WAY more functional without the large hunk of plastic on his arm.
So, he'll carry it around. Build legos on it. Wave it at people. Yell at Jefferson if he touches it. But, he doesn't really want to wear it.
Are we disappointed? Nope. What better lesson could he have learned from getting a cool robot hand than this, he is already perfectly capable and awesome just the way he is. No hardware required.
And, all the normal things that come from that realization have happened. He's less comfortable when out and about. He's angry when people look at him and point. He will dirty stare any adult that hovers or tries to be overly helpful. And, he will definitely sic the sisters on kids that try to grab his arm. And, they will talk your head off with big words like "amneotic band syndrome."
In Steven's annual visit with his limb deficiency clinic (yes, that's really what it's called), they concluded he was a healthy, capable, nothing-can-stop-me little boy. So true, so true! We also talked about ways to help Steven deal with the attention. It won't go away, every kid or adult with a limb difference or a wheel chair or something that makes them unique, has to learn their way of handling the uninvited attention. We know as Steven grows his natural sense of humor, charm, and curiosity will help him handle it with grace, good will, and the occasional alligator joke.
But, for now, he's three. And, it's a lot. So, the doctor recommended we try a 3d printed arm. Not because he needs it, but because it could be a bridge to language that will help him talk about his differences to other kids. The words amneotic band syndrome mean next to nothing to Steven or any other kid on the playground (sisters excepted). However, the concept of a "robot hand." Well, that's easy to have a conversation about at almost any age.
Thanks to the incredible volunteers at Enabling the Future, Steven received his very own "robot hand" in the mail this week. It is unbelievably cool. It has Lego patterning so you can build on it, there is a train hidden in the fore arm. It opens and closes as he bends his elbow.
Steven loves everything about his robot hand... except wearing it. Awesome as it is, it took Steven only about 60 seconds to realize that he was way, WAY more functional without the large hunk of plastic on his arm.
So, he'll carry it around. Build legos on it. Wave it at people. Yell at Jefferson if he touches it. But, he doesn't really want to wear it.
Are we disappointed? Nope. What better lesson could he have learned from getting a cool robot hand than this, he is already perfectly capable and awesome just the way he is. No hardware required.
I am a robot.
Beep, boop, beep.
Gotcha baby panda.
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