I’m amazed by my girl Diva every day. I post a lot about her progress in various places around the web, and people inevitably write about how they don’t think that XYZ could do that. They talk about other kids and say, “like Diva before Diva had her talker”. They add a lot of “buts” or other conditions. “My kid is severe… My kid is developmentally… My kid is…”
Every time I’m reminded of what one of my role-models, Erin Sheldon, says about her daughter. Her daughter didn’t change. Everyone around her changed how they viewed her daughter.
Diva still has many disabilities. The list is long: microcephaly, occipital encephelocele, cortical vision impairment, nystagmus, strabismus, amblyopia, moderate intellectual disabilities, dysautonomia, cerebral palsy, hyperacusis, apraxia, post-traumatic stress disorder… Basically, learning can be complicated for her. For most of her life, these things were seen was barriers. She could not walk, or talk, or even see that well. She was stressed and crying much of the day. Her life was seen in this way: cannot, will not, too hard, too much, too… She was too “disabled” for a communication device, for a bike, for a gait trainer, for learning. She was trapped by the making of her own labels, with foster parents who scoffed at the concept of her listening to stories, with doctors who focused on how limited she would be and for how long (read: forever).
And then she came to us. I’ve been around too many people with disabilities, too many self-advocates, to fall for that list. I saw something different: a girl who was feisty, who was determined, who had this vastly unknown and untapped potential. We responded to her. We responded to her words, her actions, her body language. We created opportunities. We read books. We sang. We played iPad. We talked. We attributed meaning to everything. If Diva turned her head, we assumed that it was on purpose. If Diva said, “ba”, we assumed she was calling us. If Diva threw a ball, we assumed she wanted to play with us. We created a world that wanted her. We created a world that saw her. We created a world where she had hope, because her actions were changing things. We refused to be knowledge gatekeepers, to limit her skill or potential to what our imaginations held. We created opportunity.
Diva is blossoming. She uses a communication device that has well over a hundred words open. She is beginning to walk independently, a few steps here and there. She can manipulate the iPad to play her favorite games. She found words on her electronic word wall with only one or two models. She is beginning to pick up books and hand them to us. She dictates words to us for her journal and scrapbook. She tells us what is wrong. She can fill in the words to hundreds of songs, even when she hasn’t heard them in months.
But she still has lots of disabilities. She has all the same challenges. She’s the same child that couldn’t, wouldn’t, never… We just see her differently. We see her as capable, and we give her the chance. We didn’t wait for her vision to heal or for her to gain magical finger isolation skills. We knew that she had something to say, and so we created a communication device for her. We made sure it met her needs — her vision, her motor, her language needs. We modeled. We created opportunity. And she blossomed. It keeps happening, again and again. It doesn’t matter how many days it takes, how many years it takes before… Walking, talking, reading, writing, etc… It doesn’t matter. We won’t stop giving her chances. We won’t stop seeing her.
That’s what I wish for every child with significant disabilities. I wish for them opportunity. I wish for them hope. I wish that people would stop thinking that educating and trying is pointless, just because of a bunch of labels. I wish we would stop measuring them against the typical, the norm, the mainstream, and start just seeing them, as they are. There’s this whole population of children and adults whose talents and gifts are being wasted on the world. A whole population. And we need them. We really, really do.