Standing with neurodiversity.

I’ve been really wrestling with what it means to honor neurodiversity, while also being real about the challenges that we all face — Little Man, Diva, our family. I don’t want my celebration to make our life into some Pinterest rainbows and sunshine montage, because that’s not real. I want my son to be able to grow up and read what I’ve written about him, though, and feel nothing but my absolute and unconditional love. I want both of my children to grow up in a world where that love is taken for granted, where they never feel less-than or needing-to-be-fixed.

I’ve been on a bit of a “diagnosis rampage” as I sought out doctors to help explain what’s happening with Little Man. The other day, someone directed me to a local doctor that I have heard many things about, and that I would never, ever trust with my son. She claims to cure autism through quackery and “sorcery” as my snarky husband says. She can “bring back your child” with her diet, oxygen chamber, et cetera et cetera. It was a slap in the face that I needed.

I don’t want to cure autism. To cure autism would be to change both of my children’s brains in ways that would alter the very fiber of their beings. It would eliminate the fascination with lights and sounds, the sensitivity to touch, the giddy dancing movements of joy, the role as memory keeper and language monitor. I don’t want them to be anyone other than themselves. I don’t want to be the parent who is on a never-ending quest to make my child “better”.

Yes, sometimes things are fucking hard. Pardon my language, but it’s appropriate. It’s hard when Little Man is biting and kicking and screaming, when he is running out of the house in fear. It is hard when you’re writing yet another safety plan, or managing a multiple hour tantrum over something not being the right brand. It is hard when Diva is waking up throughout the night. It is hard when I don’t know what they want, when I feel helpless to meet their needs, when I regret my raised voice or use of time-out. It is hard when he’s in the hospital (again) and it is hard when we have to plan for Diva’s next (and almost certainly not last) surgery. It is hard when your friends abandon you. It is hard in so many ways.

In other ways, it is unbelievably, breathtakingly easy. Loving them is easy. Their smiles catch my heart; their hugs renew my spirit. I miss them when I have date nights. I see the world anew through their eyes. I am made new through being in their lives. I appreciate the simple joy of swinging, of letting sand fall through my fingers, of a favorite glass of juice. I remember to put my phone down, to run down a big hill, and to be grateful for each of these moments. The pride in their accomplishments is no less than any other mama would have for their child. There is contentment, there is the deepest knowing that we are all here, just as we are, in our imperfect perfection, and that it couldn’t be any other way. We don’t need all that other stuff. We don’t need witch doctors and empty bank accounts. We need joy, just joy. Does this doctor and therapist bring more joy into our life? No? Hasta la vista, baby!

That’s what neurodiversity is, after all. It’s freedom. It’s freedom to just be. It’s not about sugar-coating. It’s just realizing that — our world is better off for having Diva and Little Man in it, as they are. My life is better off for having them in it, as they are. They don’t need fixing. They don’t need magic doctors. They don’t need magic formulas. They will never not have autism. Diva will never not have cerebral palsy. So it goes. Life continues, in all of its beautiful splendor, perhaps even more beautiful with the dropping of “the search for answers”. Nay, not perhaps — certainly. It is certainly more beautiful.


2 thoughts on “Standing with neurodiversity.

  1. I just posted about this exact thing: attached was a poll. I’m doing research to find out how many ASD parents believe that ASD needs a “cure” versus how many adults with Autism share that same viewpoint. It is on my blog under the title “Treading on Thin Ice: The Greatly Hated Debate.” Feel free to read and share the links to the polls for your readers: the more data we collect the better we can trust our results. My hope (slight bias) is that the actual number of parents seeking a cure is the exception, not the rule, and that hopefully armed with this data we can coerce organizations that collect donations in the name of Autism to put that money I to the ASD community, instead of into research for a “cure” (AKA prenatal test, which “cures autism” by eliminating Autists.).

    I do love your candor and appreciate your thoughts! I feel the same!!!!!!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s