“There is always sadness in our lives…”

It’s that sad feeling that keeps us going” (Sailor Moon).

Almost one month ago today, my son was diagnosed with autism spectrum disorder. Technically he is still just “high risk” given his age (under 2) but the psychologist impressed upon us to act immediately to receive early intervention.

In the immediate wake of the diagnoses, my spouse and I fell into what has often been described as grief: an intense process of fear, anger, panic, and guilt as well as mourning the loss of the future we didn’t even realize we had been dreaming of. This isn’t like, Tiger Mom “My snowflake is going to do/be XYZ” nonsense but the simple things you hope for under the luxury of assumed normalcy. Out son doesn’t speak yet so we often wondered what he thought about, especially right before he falls asleep. That sentimental curiosity is bittersweet now, turned into an entirely different and desperate question: will he ever tell us what he thinks about or feels? I love anime so I assumed we could all go to anime conventions together when he was older. Now I fret that it is too visually overwhelming, too overstimulating, and simply too dangerous — autistic children tend to elope (aka run away). My husband bought a baby-sized soccer ball and would roll it to him at home, wondering when our son would learn to roll it back. Now that strikes us as sadly misplaced, subordinated to questions like: will the therapist teach him not to walk on his tiptoes all day? Does he even see the ball? I mean, that is actually a major goal of therapy now: broaden his play beyond his current obsession with wheels, fences, spinning lights. We went from “I hope someday I can play soccer with my son” to “I hope someday my son will realize there are soccer balls in front of him instead of escaping inside himself.” It is maybe a minor difference but the paradigm shift is, well, difficult.

So it is only after they have been foreclosed and replaced with FEAR that we even realized we had been storing, collecting, many small little dreams for him. It is backwards.

The anxiety is all consuming. Well…my husband is processing this mostly as sadness and fear, I think I have just been feeling angry. Why why why? My sweet, wonderful, affectionate, cuddly son – why does he have to struggle in an overwhelming world that was not designed for him? I emailed my doctoral advisor and informed her that my dissertation — the Thing that had been taking up all of my mental energy and focus for ten years, the Thing I blog about as the ultimate monster to challenge, the Thing that I thought would bring validation and order to my studies — was on hold indefinitely because who seriously gives a fuck? It was an angry email.

And of course it is. For autism, everyone screams “Early Intervention! The earlier the better! Brain plasticity is highest in babies!” and yet every single step of the Early Intervention process requires a round of scheduling, waiting, assessment, waiting, meeting to discuss, waiting, clearing insurance and payment options, waiting, referred to therapists, waiting, more scheduling, waiting, then more assessment and paperwork. And I am so angry that we didn’t start all of this months earlier – a wild, explosion of anger that lands on myself, my pediatrician, and all the well meaning friends who assured me that “kids develop differently! Wait it out!” – a hysterical anger that has no meaning, no direction, and no resolution.

But…

I know I have to keep moving forward as the best advocate for my child. And I cannot just sink into panic, self-pity, and fear. Because this blog has always been the repository for my frothiest, most escapist, most self-indulgent goals (lose weight! this outfit is cute! write stories!), I thought it was only appropriate to make this post here. As infantile as it is (and something I probably would never admit to someone in real life), I have always drawn inspiration and imagination from my childhood heroines. I think I need to feel my way around this new world but I don’t want to lose the happy, stupid parts of myself to the anger. I’d like to remember that despite the fear, there is always hope too and that is something we must hold onto for the sake of our son. If we despair, then what will he do?

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3 thoughts on ““There is always sadness in our lives…”

  1. spectrummummy says:

    Hello, my son was diagnosed aged two, he’s now six and all that grieving, because that’s what it is I think, weirdly because you still love who they are so much, gets so much easier. There is a panic to get early intervention started as soon as possible, found out lots but go with your gut feeling you know your son best. My best advice is find friends in the same situation if you can, they keep you sane.

    Like

  2. Sumire says:

    “I don’t want to lose the happy, stupid parts of myself to the anger.” I think it’s wonderful that you already have that thought in mind. I work for my state’s department of public health and environment and right now we are in the midst of a campaign focusing on caregivers taking care of themselves. It’s easy to think your own needs are less urgent and can be pushed aside indefinitely while you focus on your son’s needs which are so much more pressing but if you don’t take care of yourself, you will gradually not have the energy to take care of him. Those “happy, stupid parts” are real sources of power (as Sailor Moon taught us ^_^) so I applaud your commitment to not let them get lost. You and your family are in my thoughts and prayers or to put it in mahou shoujo terms, I’m cheering for you!

    Like

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