Thursday, December 31, 2015

That Sweet Spot

Jude turned three on December 16. We marked the occasion in our own quiet way. Never a big family for elaborate birthday parties, we usually just do something small at home. Jude got gingerbread cupcakes, a doll stroller, and a very shiny very loud Elsa doll. She got to do trapeze after her teacher softly sang Happy Birthday to her. She yelled at us to "Stop" when we sang to her later that night. We looked at pictures of her as a baby and she ooed along with us.

Everyone told me I'd see when we hit the three year mark. Things would change. Things have changed of course. She's a three year old not a new born. They change with all kids. They grow from babies to toddlers to preschoolers to kids. But I don't think that's what people meant when they said those words to me. They meant things would get harder. I wouldn't see her as so wonderful. I'd notice her delays more. I might see some special magic things about her. She'd become more different basically in both good and bad ways.

I'm not going to list all the things Jude can or cannot do. I've not written much lately about our life together because I've started to really think about this idea of privacy. With Camille, I can field posts I write whereas Jude like all three year olds is a bit young to make those choices. I would keep my child's dignity intact and listing her developments would chip away at that dignity. In fact, I made a commitment awhile ago to not blog about my children's disabilities as much anymore. To make things general, to focus on my own disabilities, etc.

But, she's three, and I want to write about those words that felt like bullets in those early days. Those words made me scared when I laid awake at night. I adored Jude, and I worked  hard on eradicating the ableism inside me. In order to be the parent she deserved, I needed to change. But sometimes those words haunted me. Would things get harder? Would I be made to eat my words about liberation, freedom, and equality? Would I discover whatever magical thing came from Jude's 21?

As the days passed into weeks into months into years, I stopped worrying. Each day with Jude seemed like a gift to me. This baby I'd imagined dead inside me at one point, conceived after a miscarriage made every day a bit brighter. Just like her siblings did. There was nothing special about this ability. She just existed and that was enough. After my miscarriage in June followed by a tubal ligation, I held her even closer. Well as close as one can hold an independent determined three year old.

As the fall days wound down, I realized soon Jude would be three, and I started to remember those dire predictions. They made me smile a little because none of them manifested. Jude's life is still her own. She's developed into a self that is yes, sparkly and extroverted, but not because of her chromosome.  Life has not gotten harder. I don't wish her typical or without Ds. I don't look at my friend's kids and feel any mourning. Nor do they seem to remark on her difference. She is one of my beasties. I noted this in the aftermath of R's trapeze show. Jude tumbled around during the whole performance making those around her smile as we remembered me being hugely pregnant with her. Her teacher scooped her up afterwards to introduce her around. She has become a part of the community. Eased in with the naturalness of any kid who hangs around a place long enough.

And yes of course some days are hard. But really they were hard with all my kids at this age. It's a challenging age for any kid and it's harder sometimes because she doesn't always have the language to tell us what's up. That said we've all learned to communicate with Jude and how to read her body language. We've adapted and it's been fine. Sometimes when I feel worries creeping on me, I remember that adapting is what our family does best. All of our children have some neurological stuff going on from Autism to epilepsy to anxiety and depression. It's cool. We've got it covered. We've been adapting for years now. Long before Jude came along we mastered the art of listening to our kids, respecting their needs and then rolling with it.

In the end, I'm the one who changed. Things shifted for me. I learned much about acceptance over the last three years. I found a space in which to meet parents and Autistic people who shared my views on having a child with Autism. I read a lot about the early fight for disability rights. I've become involved in small ways in the broader disability rights movement, and in bigger ways in the body positivity movement. I've learned to recognize ableism as soon as I feel it and feel more than free to call it out in others. It's important because things are going to be hard for Jude if we don't change society. Things get hard when schools don't think our kids belong in "regular" classrooms. Things get hard when employees pay our kids pennies. Things are hard when we don't have reasonable independent living options for people with intellectual disabilities. Things are hard when we don't have a single payer health care system making it difficult for families to give their kids the care they need.  Things are hard when we continue to turn people with disabilities into inspirational memes instead of seeming them as the messy, real, people they are. What makes Jude's life hard has nothing to do with having Down syndrome. Jude's life is hard because of what people think about those with Down syndrome.

I keep hearing Morrissey singing "There's no such thing as normal." Cause in my family this is so true. Or maybe it's just our version of normal. For us there isn't such a thing and that makes life beautiful, messy and pretty much perfect.

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