Approximating the ASL sign for “more”

As a photographer of people with disabilities, I must be especially resourceful and creative for my clients to have a great photo session.

The people I photograph also need to be especially resourceful and creative throughout their own lives to achieve their goals.

Take my son Harrison, for example.

We knew from the very beginning, due to his particular chromosomal abnormality, and his epilepsy, that speech was most likely going to be delayed.

As the years went along, it was clear that “delayed” was an understatement. Verbal speech seemed, and still seems, like a pipe dream. Oh we have heard a few words here and there- no, go, hi, mom- that was a great one! But realistically, probably not going to happen.

So I was excited, and hopeful, about the idea of teaching Harrison American Sign Language (ASL), as well as learning it for myself.

I soon realized, however, that like many of the goals and objectives we have set for him, this would not be an easy task.

Epilepsy isn’t just about the seizure. A seizure is an episode of abnormal electrical brain activity. This excessive brain activity can wreak havoc on development. It can literally cause trauma to the brain.

My son has something called Cortical Visual Impairment, which is a neurological issue rather than a physiological one. It is a result of the brain trauma he suffered when his seizures began. His eyes work fine; it’s the message that his eyes send to his brain that is affected. Poor peripheral vision, trouble seeing anything directly in front of him too…best scenario is when the object is moving, and he can detect the movement. And if the object is not moving, he moves his head back and forth so that his field of vision is moving. Smart kid. Very resourceful.

Harrison was able to learn a few signs- he may have picked them up on his own with his incredible Kindergarten teacher who signed everything she said, and he had some hand-over-hand assistance as well.

Well… shame on me for not having faith in my child. I’ve already pointed out that he was resourceful regarding his visual skills. He is, in fact, an amazing problem solver.

Despite those poor fine motor skills, he approximated (made up his own version) the signs for yes, no, help, and more. During his preschool years, he started pairing his approximation for “help” with behaviors like tapping his diaper to let me know he needed to be changed, and tapping his chest when he needed his trach to be suctioned. That’s impressive! Two-word sentences from my nonverbal toddler!

He makes it clear that he understands what’s going on…like when he laughs at me when I can’t find my keys or my phone or my glasses.

Like when he closes his eyes and pretends to be asleep and smirks when I call him out on it. 

Like when he giggles at the bad words in a Kid Rock song (his favorite, thanks to Dad).

He now knows the sign for “toilet” and it seems like his hand is permanently in that formation- he could sit for hours on the toilet watching a movie on his iPad, and just like any typical kid, he requests the bathroom not only when he needs to go, but when he wants to get out of an activity. What a sneak! (He laughs when I call him out on that one too).

He understands what’s going on, and he figures out a way to make things work.

Just like our children, we find ways to make things work. 

We are creative, we are flexible, we are resourceful, and we are persistent. We figure out how to give our kids what they need. 

We are great role models for our children, and they are great role models for us, too.

As a special needs portrait photographer, I bring that same creativity and flexibility and resourcefulness to my photo sessions. 

I don’t just say “Sit here, turn your head this way, smile.” That’s not realistic for a lot of individuals with special needs. I try to get to know the person I am photographing, figure out what works best for him or her. 

These images have to truly represent that individual. I figure out how to catch that mischievous expression, that look of concentration, that face full of pure joy, no matter their special needs, disabilities, or medical challenges. I invite you to take a look and see what I mean.

When you see your final images you will say “Yes! That is so my kid!”

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