Monday, October 31, 2016

Down Syndrome Awareness and Acceptance

Well, it's October 31st. The 31st day of  Down Syndrome Awareness month.  For the last five years, I have chosen to honor it by posting here every day.  But this year, I didn't want to do that.

Partly, it's because my gradually dwindling posts on this blog have been intentional.  I want to honor Cora's privacy and not share too much of her here.  And equally responsible is the fact that I've been feeling that what I do have to share feels muddy and mixed up and is sometimes hard for me to sort out.

Of course, I can always share about how wonderful Cora is.  And she is.  Of course she is.  She is beautiful, radiant, and delightful. She is so loved, and for such good reason.

She is in full-swing in her kindergarten class these days. She is learning alongside all her peers. Learning to write, learning letters and letter sounds, and sight words. She has developed impressive skills with scissors, and has already cut her bangs twice in the last few months.  Just yesterday, she drew her first recognizable drawing. She has so many friends, and we get to see kids greet her with delight whenever she appears.  One of her friends regularly announces his intent to marry her. Another of her classmates has told me that Cora is her best friend.

She impresses us every day. Because she is a wonderful kid.  She is a wonderful kid who has Down syndrome.  It affects most things about her, from how she processes the world, to how she learns and communicates. It is a part of her that is inextricable from who she is.  So I can share how wonderful my little girl with Down syndrome is and hope that that counts as my part of awareness, but lately that just doesn't feel meaningful enough.

The things that have felt meaningful to me lately are things that I've been reluctant to share.  Because they're not all sweet, rosy, feel-good sentiments.  They are complicated and stressful and concerning.

They're not specifically about Cora, but about the world we live in.

So I struggle with what to focus on. I can choose to focus on the things for which I am grateful; the things that make us so lucky. We are so lucky that Cora is in a wonderful classroom, with a fabulous teacher, a teacher's assistant and an amazing paraprofessional.  We are so lucky that she is in a school and district that wants to include her in a regular general education classroom.  We are so lucky that she has a dedicated and loving special education teacher to help her and oversee her schooling.

We are so lucky that our family lives in a community with diverse and incredible resources for families supporting people with disabilities.  We are so lucky that I had the opportunity to participate in a year-long training program to prepare our family to support Cora in her preparation for and entrance to kindergarten.  We are so fortunate that I had the time to spend learning, seeking out resources, and preparing to advocate for Cora's education.

We are so lucky that our community loves and supports Cora.

We are so lucky.

But so many people aren't.  Many don't have easy access to support resources, or the time to pursue those resources.  Many of my own friends are in battles with school districts over their children's access to a fair education. Many are long, intensive, exhausting legal battles that drain them of time, money, and energy.

My family is so fortunate.  But the fact that I feel that way is so disheartening.  It is so sad to me that our positive experience is considered so special when compared to that of so many others. It is so frustrating that it is necessary to spend countless hours preparing to advocate for my child.

So much of it is so frustrating to me.  So when I choose not to share many of my thoughts, it's largely because I am so full of concerns and disappointments and don't know how to convey them without seeming to be consumed by the doom-and-gloom. That doesn't feel very helpful.

It's a tricky place to be, and one that takes up so much of my energy of late.  There is the part of me that perseverates on the problems, and the part of me that just wants to celebrate and support my wonderful child.

My simplest truth is that this girl deserves so much.  She deserves to be the valued, beloved child that she is. She deserves to be seen for who she is, and to participate just like everyone else.  She deserves the supports that she needs to help her be successful. She deserves a great community, and a school that supports and appreciates her.

She deserves it all.  And it's our job to help her access it.  It's our job to educate and advocate and give her opportunities, choices and experiences. I just wish that we lived it a world where it didn't need to be such hard work.