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Why do you post conversations?

I don’t prioritize full length blogs the way that I would love to, but I do post snippets and conversations of our life over at Facebook at all the time.

Why?

Because the internet is still filled with stories about how disability = unable, how “non-verbal” = nothing to say… One such story posted on HONY today, a story I tried to give the benefit of the doubt when a friend messaged me about it. Except that she was right, and I was wrong. We cannot give those stories the benefit of the doubt. We don’t have the privilege, not when the mainstream story is still that reading books and learning is a pipe dream for the majority of our kids.

I share these conversations because I want to show the world — and many parents — how much their child can do, right now, as their child is. We didn’t “uncover” Diva. She wasn’t “hidden inside”. She is just herself. She has multiple disabilities. She learns differently. She is impacted both by her disability and by the way society treats her. One of those things can be changed.

Diva has conversations with us using single words and telegraphic speech. She uses signs, body language, AAC, and vocalizations. Sometimes she goes all day only talking about Diego & The Wolf Pup Rescue. Sometimes we go a long time with her ignoring us and hanging out in her room. All of those conversations can — and should — be respected and valued just as much as any conversation with past tense and contractions. Her conversations are shared because you need to know that your child can do this too.

Little Man sees the world through a completely different lens than the neurotypical child. He struggles with the gray areas of thinking and problem-solving, but he also is creative. He struggles with abstraction and social norms, but he also has a big heart for friendship and kindness. He struggles to understand jokes, but he also loves to be silly as he recently told his aunt. None of these things are not mutually exclusive. His conversations are shared because you need to know your child can do this too.

I don’t want their lives to be inspiration porn. I don’t want people to read a conversation and think that Diva has “overcome”. Overcoming is crap. The only thing she has to overcome is this world’ stupid projections on her, and I don’t think that’s fair. I’d rather tear those projections down than force her to fight against them. My biggest hope for each of my children’s lives is simply that they will be seen and loved without feeling a need for pretense or hiding. Isn’t that what we want for every child?

The true story is that there is value in their way of thinking, being, and interacting in the world, without a need to become more neurotypical. In fact, I don’t want them to be more neurotypical. Their value is being who they are as they are, just as my value or yours is made. And so I write. I share the everyday moments of our lives. And I hope that every child with a disability will know the same things — that their voice is heard and that they are seen.

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Why am I blogging?

Things are going to be real on this blog. I’m going to talk about my real kids with real stories — the joys, the challenges — and I’m going to talk about my life. I’m putting a lot of stuff out there, standing in the field of vulnerability. I’m linking this blog to my Facebook, and people will know this is me. Why do it? Why have the commitment to writing several times per week? Why share the intimate details of our lives?

Because this world sucks for my kids.

I wish I could write in a more poetic way, in a way that didn’t sound so crass, but it’s simply true. We live in a world that does not accept either of my children, much less celebrate them. We live in a world where people don’t ask about mental illness, where people become afraid of someone with mental illness, where people ignore mental illness. We live in a world where my daughter is seen as incompetent and incapable, not even worth thorough evaluations. We live in a world where the parents of children like mine feel lonely. They feel isolated and abandoned, by friends and family members alike.

This is not okay.

We have to talk about it. We have to talk about the reality of these children, these families, these lives — the beautiful reality, with the rough edges and cracks that come with every life. I write so that other children will have their beauty recognized. I write so other families will not feel so desperately alone. I write because there’s not enough out there to help us figure out what’s going on and what to do; we have to create the resources ourselves. I write because every family deserves to have those family moments. I write because every kid deserves to be seen. I write because the world needs to change.