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A story

April 30, 2018

Here’s what I’ve been afraid to say:

Last August, one of our kids was diagnosed with Autism Spectrum Disorder.

Not afraid because I’m ashamed of the diagnosis, or of the kid.  Afraid because I want to protect this kid’s individuality online and in person.  I don’t want people to judge this kid by their label–what many people know about autism is the stereotype: “the kid in the corner rocking back and forth, flapping their hands and making strange noises.”  That’s not my kid.  I don’t want to put details about my kid on the Internet before they are old enough to say, “That’s too private” or “Yeah, okay, you can publish that.”  I post funny or endearing stories and pictures of my kids, and I post far less than I used to when they were babies, because as they get older, their story becomes more theirs, less mine.

But part of it, part of this diagnosis and this journey, is mine.  Telling my story on this blog has become a way to figure out myself, to connect with others, to possibly make someone else feel that they are less alone.  Or even to make myself feel less alone.  So here it goes, Worry Wolf and Fear Flamingo be caged.

The autism spectrum has many possible symptoms:  language impairment, social deficits, repetitive behaviors, anxiety, ADHD, sleep disorders, sensory processing issues…(if you are at all interested, you can read more about it at these resources:  HHS, Autism Self-Advocacy Network, and Autism Speaks).

I joined a Facebook group for Autism Moms of Seattle, and one comment struck me, from a post indicating a person’s kid had just been diagnosed:  “Getting that diagnosis really is a roller coaster of emotions.  Relief.  Validation.  Fear.  Sadness.  Grief.  Determination.”

That about sums up everything I’ve been feeling since August.  Determination to get the kid an IEP as soon as possible (which felt like an eternity and which also possibly went a lot more smoothly than it does for other parents in other schools).  Sadness about both adults and kids who don’t understand and the resulting rudeness or dismissiveness.  Relief that there are treatment options available, even if the waitlists are often a year long.  Fear of the kiddo’s social isolation, of their confusion being in a world made by and for those without autism.

I do try to maintain perspective:  there are many symptoms of autism that are more challenging (non-verbal, GI distress, sleep dysfunction, etc.) that my kiddo does not have.  Every parent has something to worry about for their kid.

Ultimately, as parents, what we worry about for all of our kids boils down to this:  Will you be okay?  And I mean, will they, can they be happy and live fulfilling lives?  Will the kid with anxiety be able to cope with it, or will it become debilitating?  Will the stubborn, rebellious kid be able to strike a balance between being who they are and being able to take direction from an employer?  I can’t speak for every parent; I just know that I want this so desperately for each of my three children:  will you be okay?

This diagnosis is not necessarily at odds with living a happy, fulfilling life.

I have read some beautiful and heart-wringing stuff about parenting a kid with disability.  Beth Woolsey writes about her son here, and Carrie Cariello blogs every Monday about her journey parenting her son who is on the spectrum (most blog entries of hers leave me in tears, her writing is so beautiful and she is so honest)–here’s a sample, a letter to her husband about this parenting partnership.  A Diary of a Mom’s writer Jess posts this about getting the diagnosis, a real and loving message to parents who just found out their kid is on the spectrum.  (She also has a lot of opinions about sending positive messages to our kids on the spectrum instead of “fixing” them, which I appreciate.)

I worry a lot about the present for our kid:  are we giving them what they need?  Should we send them to a different school?  I understand that my normal doesn’t have to be everyone’s normal; not everyone follows the same path or interacts with the world in the same way, and that’s good and healthy and everything.  I understand that we have the opportunity to teach other kids about the beauty of difference, even as my Mama Bear crouches ready to launch at those damn kids who laugh at my kiddo who is learning, just like they are.

I worry that we do not know what we are doing.  There is a mystery to this kid, a way of thinking and of seeing the world that I don’t yet understand.  The kid has a fixed mindset that I don’t know how to make flexible, and I can’t tell which responses are habitual and which responses are real.  How do I help a kid whose articulation of reality is confusing and inconsistent, who sometimes focuses obsessively on the negative, who says things that are patently Not True as though they are the Truest Truth (even though this kid is so smart and should be able to tell the difference)?

I know.  The future is uncertain.  It just feels more uncertain for this kiddo.  Will they learn social behaviors that will allow them to function around their peers?  Will they be able to complete tasks that they find annoying in order to keep a job?  What is cute and quirky at age 6 will be at best irritating and at worst offensive at age 15 or 35.

Will you be okay?

I’m not writing about this because I think anyone should feel bad for my kid, because this kid is amazing in their own unique way and has their own gifts and strengths like their siblings do.  I’m not writing this so anyone feels bad for me either.  I’m writing to break my own self-imposed silence, because silence is never helpful or healing; to speak my and our family’s truth; to explore all the facets of this parenting and humaning thing.

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