Monday, November 19, 2012

Not So Very Special Needs

I do not have a special needs daughter in the same way that I don’t have a Down’s daughter in the same way that I am not a special needs mom. Ah, deep in denial, you say. And after all these years!

Not really. It’s just that I have become convinced that all these terms take away from the most obvious of obvious—that our children, from the moment they are born, are children first and an integral part of our families, communities, and society just as they are. And when people ask why disability it not a part of mainstream discussion, I think the answer is, in part, in how we name ourselves.

I believe that Jessie (and every person labelled disabled, or labelled in any way) does not have “special” needs, but very typical and basic needs that sometimes (often) have to be met in special ways. If we allow ourselves to admit to just how typical these needs are (for sustenance, shelter, love, a sense of belonging, an education, and a sense of being valued, to paraphrase Maslow’s oft-quoted hierarchy), we can stop focusing on making the story be about difference and start making it be about diversity. We can stop people in systems from saying it’s just all too much, too exceptional, and there is a place (a special place) for that, and start doing whatever it takes to meet those very basic and typical needs, which sometimes might be in a special place.

Maslow's Hierarchy of Needs
Once we, as parents, shifted from seeing Jessie’s needs as special (hence outside the realm of typical or normal), we became more inspired advocates, enticing service providers, educators, and administrators to see Jessie as her friends and family did—as having very typical needs that we had to get creative in meeting. She needed friends, an opportunity to learn, the chance to be valued in her community, the chance to contribute.

And once we saw Jessie’s needs as typical, our allies and advocates became the world at large, not just other parents of children with so-called special needs. And our (and Jessie’s) world and experience expanded ten-fold. There is some great beauty in the common; in all the variations and striations and unique flicks of the personal that emerge, but do not submerge what joins us. And somehow, when we allow ourselves to let go of how we label the need, but focus instead on how we meet the need, we create a space where we can struggle meaningfully, as a family, a community and a society, with how we can make this happen.

I will admit, I did not come to this on my own. It was actually the other parents in our original school community (a small, creaky, no-gym public school with sometimes fewer than 100 students and principals at the tail-end of their career) who kept pointing out that Jessie had the same needs as their kids, just sometimes we needed to meet them in a different way. This included the parent who taught Jessie how to climb up the down part of the slide when the teacher was not looking (because that’s what kids did, and Jess had trouble with timing), the one who made sure she had lunch duty in Jessie’s classroom so she could start games and make sure that Jessie was included, and the one who forgave the biting incident in junior kindergarten and invited Jessie to his son’s birthday party anyways. 

And when the principal changed and with him the supports for Jessie, it was the other parents of so-called typical children who were my allies and advocates as we did battle to remain at the school. These other parents were, and continue to be, my teachers. They keep me honest, they ground me, and when I so badly need it, they fill me with laughter. They remind me that we are none of us so special as not to belong to each other. And that is good. 


Jess said...

Maybe naming the disability, and for some, giving the level of disability a name, is the beginning of acceptance. The beginning of understanding.

I see how Jessie's needs are the same as "typical" kids/people, they just need to be met in a different way. A different approach.

But that's how it is with each individual isn't it?

I am still in the beginning of this journey that you have been traveling through for a very long time. So it helps me to categorize the disability and the level - whether that is right or wrong.

This was a really thought provoking post for me and I'm so glad I was able to read it! This is the kind of conversation that helps/will help me on my own journey through this unknown.

Nan said...

I agree Jess, naming is the beginning of acceptance and understanding, or understanding and acceptance. And often labels are very helpful for opening doors to communication and acceptance. But I think by seeing our children as children with special needs, we make everything so special we forget what is common. And sometimes we need to bring all back down to earth.

Margaret Bender said...

I agree with you Nan....we have to recognize that are kids are kids first to embrace the fact that we all have different abilities...not disabilities :)