Recently, I've been reading a great deal of literature and material on the subject of special needs parenting (including an absolutely amazing manuscript I may be blurbing that I can't WAIT to tell you about in the coming months as it gets closer to publication), and the thing that strikes me once again is the incredible diversity of the experiences we have.In the past, I've addressed how those of us writing about our experiences as "Shepherds of the Broken" do so with a variety of perspectives and approaches to what our kids face. Some of us are pragmatists, some infuse our writing with spirituality or religion, some of us use humor, some report from a place of despair, and others write with cheerful optimism. One of the reasons I have largely rejected the idea of People First Language is that it only really works as intended when it's applied as a universal standard, which assumes that there is a common attitude and approach to special needs parenting. In my experience, nothing could be further from the truth.
Lately I've been especially aware of how the experiences we face as special needs parents are so wildly divergent as to seriously challenge the notion that we really even have a comparable perspective at all. We do, of course; the challenges we face in receiving services, the grief over the loss of the imaginary child bourn from our expectations who is not to be, the fight that we take on because if not us, then who? -- these really do seem to be universal experiences. But our kids all have individual monsters, with wildly different effects on their hosts. The variety of disabilities can be daunting when take a step back and take it all in. God, the Universe, Fate, whatever you believe in -- someone or something seems to have a limitless (and limitlessly cruel) imagination when it comes to ways to break children.
Among children with disabilities, Schuyler is luckier than most, we are aware of this. When people meet Schuyler, they tend to take her at face value; her monster is hidden, for the most part, and doesn't obviously stamp itself on her outward appearance. Her facial structure is "normal" (whatever that means), her social behavior is largely consistent with that of a neurotypical kid her age, and she is completely ambulatory, albeit somewhat clumsy. Truthfully, however, Schuyler tends to skew a little younger when she finds random play friends; her delay and her lack of language still makes her a more ideal playmate for kids who are a few years younger than she is. There are concepts that she simply doesn't get, concepts that a nine year-old should understand. It's nice to pretend that she's on track with other kids her age just because she's attending age-appropriate mainstream classes part of the day, but the truth is more complicated than that, and it's going to become more and more of an issue as she gets older. Will she ever catch up to her peers? Nobody knows, but she's not there yet, not by a long shot.
Still, it's easy to put her monster out of mind. This might be a strange confession from someone whose very identity as a writer and public speaker is largely defined by special needs parenting, but I don't think of Schuyler as a child with a disability, not most of the time. It's not that I forget, exactly. Rather, the accommodations and adjustments that we make as her parents when we communicate or interact with her on a daily basis have become ingrained in our natural behaviors. It's simply how it is with Schuyler.
When your child says something to you, do you automatically repeat it back to her to make sure she said what you think you heard? Do you keep an expensive electronic device within arm's reach at all times for the times that sign language and Martian fail to communicate a concept? We do, and the odd thing is, we do so without thinking about it most of the time. We've accepted the weird as our new normal, and honestly, your normal strikes us a a little weird. Normal conversation with a child? What kind of futuristic, science fiction concept is that? Do you have a talking cat, too? That's just crazy talk, man.
There are times when it all breaks down, though. Schuyler is a willful child, and while her school is, in most respects, the very best place in the world for her, she's still a square peg sometimes. This has very little to do with her monster and almost everything to do with her father, I know. Schuyler has a natural distrust for authority and a taste for random acts of meaningless defiance, personality traits that are nothing like Julie and everything like me. Notes come home from school reporting various acts of mild insurrection about once a week or so. "Schuyler refused to use a pencil today" was the most recent, and when asked why, she simply stated that she wanted to use a pen, as if the issue was obvious. She clearly understands the idea of her teachers as authority figures. I just don't believe she accepts it, not entirely.
I recognize this as a strength as well as a liability; it's a trait that is going to serve her well when she's older. But it presents a challenge and requires a delicate balance. The issue becomes more complicated when she disobeys Julie and me, of course. Schuyler defies us, because she's nine and because she's Schuyler, and we push back, because we'd like to avoid raising a feral anarchist if we can.
But when she gets in trouble, Schuyler shuts down. She freezes up when we insist that she use her device to explain herself; it's suddenly as if she has never used it before in her life. I mean it, too; she actually used it more proficiently back when she really had never used it before in her life. The problem goes beyond stubbornness, too. She seems to legitimately be unable to calm herself to the point that she can construct a dialogue. Instead, she tries to defend herself verbally, but the more upset she gets, she more unintelligible she becomes. Her words, already identifiable mostly through context and inflection alone, run together into an fretful, angry stream of sound. Her meaning disappears, replaced by an incomprehensible anxiety.
These are the worst moments for us, and while they don't compare to the worst moments some families face, they nevertheless involve a near-complete shutdown of communication. In those moments, our frustration and being unable to simply parent our child is exceeded only by Schuyler's frustration at suddenly finding herself under a baffling glass dome, shouting into a void. In those moments, we all feel broken.
I don't know what the answer is. It saps our strength, all of us, because it shines a hard light on one of the lingering deficiencies of Schuyler's use of the Big Box of Words. It illustrates just how far we all have to go, and how hard we have to work, in order to make this unnatural form of communication feel like second nature to her.
Most of the time, Schuyler doesn't seem broken, not to those of us who love her and live every minute in her world. Even now, though, after all these years and as far as we've come with her, it is painful and shocking when the monster bites.
