A-Typical

I’m sitting in the dark hallway guarding the door, the majority of the contents of the bedroom behind me now littering the second-floor landing. I’m exhausted, with my just-discharged-from-physical-therapy wrist wrapped in ice. I can feel a migraine forming above my left temple, and I’m really hoping the hanger I took to the nose won’t leave a mark. This might be the longest one yet.

Tonight’s battle lasted well over an hour. At first, the episodes were every 30 seconds or so: the door would open, a t-shirt, dirty sock or book would be hurled at me, and then the door slammed shut. Some minutes would pass, rarely without at least the door being kicked from the inside a few times before it was opened again. Every other time the door opened, expletives or offensive names were hurled at me along with the next of the room’s contents. And maybe every fifth time it opened, there was an attempt to refill ammo by retrieving some of the previous projectiles from the hallway, or to just escape the room altogether. It was during these failed escapes that I was usually kicked and scratched. But a new mode of attack was added to the arsenal tonight – spitting. Lodged between the salivary assails were threats to set me, and eventually the whole house, on fire. I mean, that wouldn’t be the worst outcome for the evening – at least I wouldn’t have to clean up the mess.

Eventually, exhaustion set in on the other side of the door and the attack ceased. That was about 20 minutes ago, but I haven’t moved. Partly because I wasn’t quite convinced a further coup wasn’t in the works, but mostly because tonight’s fight drained every last bit of my energy. My eyes long-adjusted to the dark, I scan the damage for what seems like the third night in a row, and I begin to cry. At this point, I’m sure you’re wondering why I don’t just call the police, or otherwise remove this assailant from my home. It’s because the assailant in question is my 12 year old daughter.

Minus A’s (very genetic) stubbornness necessitating a C-section, my pregnancy was entirely uneventful. She was healthy, beautiful, nursed like a champ and slept through the night by 10 weeks. It definitely seemed I had hit the first baby lottery. It was about 6 months into A’s time on Earth that I started noticing behaviors that my gut told me weren’t typical. But as an only child with no nieces or nephews for comparison, I begrudgingly chalked it up to new mom anxiety. She was somewhere around 7.5 months old when the daycare director pulled me aside one evening at pickup. I was still practicing law then, working at least 50 hours a week, planning a major house renovation and navigating motherhood, all while trying to fend off my husband’s escalating verbally abusive tirades. That’s the long way of saying I did not need one single thing more on my plate at that moment. The director expressed concerns about some of A’s gross motor skills. While she could get herself into a sitting position, she wasn’t moving out of that position like most kids her age. She just sat and smiled, occasionally twirling her hands and feet, but made no effort to move from her spot. I remember asking her why that deficit was significant even though inside, I knew the answer; it was to be the first of many things A would do differently than other kids, if at all.

A week before A’s first birthday, I was handing her over to pediatric ENT so he could place ear tubes; somehow she had 50% bilateral hearing loss having never had a single ear infection. Since that evening discussion with the daycare director some 4 months prior, she had gained a physical therapist, an occupational therapist and was being assigned a speech therapist once the tube surgery was complete. A month or two later, a special instructor was added to the roster. And a few times a week for the next 2.5 years, I either took her to appointments or appointments came to us. Instead of tracking her milestones in a baby book like many first time moms, I amassed countless progress reports prepared by her therapists so they could bill our insurance.

Going to multiple specialist appointments at the local children’s hospital was like being a member in a club I never asked to join, and it took a while before I stopped sobbing after every appointment. Four (formerly close) friends and I all had first babies within weeks of each other so we spent a lot of time together with the kids during those first few years. When it was just A and I, her deficits weren’t really that noticeable. But as the kids got older, A’s differences became more and more evident. It was a gut punch every single time.

And on top of it all, I was unexpectedly pregnant with my second daughter. I was exhausted, guilt-ridden and scared. I stressed about having enough time for both – A demanded far more from me than a developmentally typical child. I was also (irrationally) consumed with the idea that I had somehow caused A’s challenges and anxious it would it happen again with this new baby. Mostly though, as her challenges grew, I worried the world wouldn’t be kind to my little girl.

That little girl starts middle school in a few weeks and can’t yet tie her own shoes. In addition to the special education classroom and curriculum, she will have an aide at every cheerleading practice and game. For after school events like dances, she will enter through a separate, less-overwhelming entrance than her developmentally typical peers. She’ll have a key lock instead of a combination lock like the rest of the school. And she will have a change of clothes kept in her classroom in case of an accident like she has since kindergarten. Middle-school sucks for even the most neuro-typical child without adding all the additional challenges facing A and kiddos like her. She’s so small for her age that she is on daily growth hormone injections; I worry her peers will baby her like some did in elementary school – something her intellectual disability didn’t prevent her from perceiving and hating. She also has anxiety which this year manifested as compulsive finger biting and skin picking so severe she needed medication. I worry every game that her cheerleading teammates won’t want to touch her hands, something entirely unavoidable as she is one of the team’s fliers. Because she struggles with textures, she often wears the same clothes over and over. And because she is so little, not much of what she does agree to wear is age-appropriate for a middle school tween. So I worry kids will pick on her for her wardrobe. Raising a child is incredibly hard; raising a special needs child is exponentially more difficult. And while A has thankfully not suffered any major discrimination during her schooling thus far, I am no less scared for her than I was a decade ago.

My anxiety-filled thoughts are interrupted by a faint “Mommy” through the door. Momentarily, I worry this is a ruse. But the voice sounds subdued, defeated. I stand, placing the long melted ice pack on the floor, and slowly enter her room. She is in bed under her weighted blanket.

A: Mommy…

K: Yes, A.

A: (now crying) I’m sorry.

K: I know you are, A. It doesn’t mean it hurts any less, but thank you for apologizing.

A: Mommy…can I have a hug?

K: Of course you can.

A: (holding on to me like her life depended on it) I love you, Mommy.

K: I love you too, baby.

I lie there with her for a bit, waiting for the sobbing to subside. Eventually I kiss her goodnight and leave. Once back in the hallway, I exhale forcefully, willing the ever-present weight of raising a child with challenges off my chest if only for a few moments. This certainly wasn’t the worst of the episodes. And it surely is not the last. But for the moment, it’s over. She’ll soon be sound asleep, dreaming of all the wonderful things she wants to do in her life. And I’ll be not far behind her, drifting off into my own slumber hoping that one day they all come true.

6 thoughts on “A-Typical

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  1. The timing of this post is oddly appropriate in my life right now. My special needs kiddo is about half way through their senior year of HS. All those years of anxiety and fear you just described, I thought were behind us. Now I’m scared for them entering the world as an adult. Thank you for sharing and reminding me I’m not the only one facing these fears in the world.

    Liked by 1 person

  2. I have always had nothing but respect for you after following you on Twitter but reading through your posts on here has shown me that you deserve much more than respect. Your writings involve me in your story in a way that few people have ever done. I am an introvert and love my privacy while observing life from the sidelines without feeling the need to involve myself by comment or action. I am breaking that by saying how much your writings have moved me. I cannot begin to imagine how you cope and carry on, my words fail me, I just hope that time and love will prevail for you and your family. Wishing only the best for you and yours Kat!

    Liked by 1 person

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