“Asking if I want to be healed is like asking if I want to like anchovies. I cannot imagine what liking anchovies would feel like, what taste they would have in my mouth. People who like anchovies tell me they taste good; people who are normal tell me being normal feels good. They cannot describe the taste or the feeling in a way that makes sense to me.”

– Elizabeth Moon, The Speed of Dark

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liking anchovies

Posted in quotes

what is autism?

The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable […]

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

(Please read the complete article here – it is the best brief introduction to autism that I have ever come across.)

I want to be careful about oversharing sensitive aspects of Rondel’s life, so I’m not going to list specific examples here, but I will say that this description makes so much sense in understanding him – his reactions to stimuli, his emotional swings, his physical being and course of development. What is more, it gives me that understanding without making him seem broken or deficient: he is simply different. His differences may mean that he requires extra support and accommodations in a world designed for people whose minds don’t work quite like his, but they don’t mean that he needs to be fixed or changed. He is who he is. He is beautiful the way he is. And I love him for who he is, without changing anything.

(In case anyone was wondering, we don’t have a diagnosis for Rondel right now, but in seeking to understand and support him we have found that a lot of resources aimed at autistic individuals are quite helpful for him, and descriptions like this one in particular lead me to believe that he could most likely qualify for an official diagnosis under the (very pathologizing and depressing) terms of the DSM. So while the very long diagnostic process is underway, we’re going with “suspected autism” over here, per his pediatrician.)

“In all great works of fiction, regardless of the grim reality they present, there is an affirmation of life against the transience of that life, an essential defiance. This affirmation lies in the way the author takes control of reality by retelling it in his own way, thus creating a new world. Every great work of art, I would declare pompously, is a celebration, an act of insubordination against the betrayals, horrors and infidelities of life.”

– Azar Nafisi, Reading Lolita in Tehran

insubordination

…the same thing that distinguishes addiction from passionate interest also divides unhealthy love from that which is the highest experience of humanity. That is, love is real when it expands and enhances your life – and troubling and problematic when it contracts or impairs it. Whether you love a person, a drug, or an intellectual interest, if it is spurring creativity, connection, and kindness, it’s not an addiction – but if it’s making you isolated, dull, and mean, it is.

– Maia Szalavitz, Unbroken Brain: A Revolutionary New Way of Understanding Addiction

 

healthy vs. unhealthy love

“If you manipulate, coerce and bully your children, you will have no power at all. If you lead with humility, gentleness, and by example, you will need no power at all.” – William Martin

power

Posted in family life, musings, quotes

different (a full review)

Sally and Nathan Clarkson’s book Different didn’t exactly live up to my hopes and dreams for it – that is, I suppose, it didn’t give me a checklist to follow or an instruction manual to read or even a set of principles to live by which would ensure success in the endeavor of parenting a unique and uniquely challenged child.

But that really wasn’t the point of the book. As Sally writes, “…don’t try to use our family’s experience as an exact template for your family. Every child is unique and requires a unique approach.”

And the story they told together, of struggles, pain, faith, and triumphs, was just as beautiful as I thought it would be. While they shared specific aspects of their personal lives, they made those intimate and individual stories relevant to a whole range of readers, drawing out empathy for both the challenging child and the challenged parent (or in other words, for both the different child and the parent who longed for normalcy). As there are in my close family many people on both sides of this dynamic, it spoke to me on a number of layers, and both encouraged and convicted me about several of my relationships.

(For example, it is easiest for me to apply the need for patience, acceptance, and understanding to my children, while failing to give that same grace to my husband, parents, siblings, or in-laws. Different, while primarily about that parent-child relationship, continually challenged me to scrutinize my motivations and intentions in my other relationships as well, and to try to bring them also into a more open, gracious, and loving posture.)

My primary take-away from the book in this season of my life is the value of making a home in which everyone in the family can feel at ease and accepted for who they are: a place where each one of us can truly feel that we belong. When my children are losing their tempers over trivial affronts, or melting down for inexplicable reasons, or refusing to answer a simple question when everyone else is waiting for their response, or taking out their frustrations on each other; when my husband is tired, preoccupied, or worried and speaks more sharply than typical; when I am moody and irritable and impatient – in those times, it is very hard to accept each other, to love each other, to give grace to each other. It is tempting to construct a narrative of the people in our family using only those negative moments, to focus on their immaturity or sinfulness, to attempt to fix and correct them with annoyance and frustration for their present state. But Sally addresses that temptation directly (emphases mine):

“…creating a welcoming home also includes the choice to accept the unique design of our families and the limitations of each family member. We have to learn to lean into life as something beautiful even if it is not exactly what we expected. Trusting that God works all things together for the good despite the challenges we face is a gift of worship we give to God. Acceptance with humility must eventually come to each of us if we are to please God and not always fight against the limitations of our own family pattern.

If Nathan had grown up in a home where he was constantly put down and corrected, I think the oxygen of God’s love would have been strangled from his heart, which needed a wide berth of unconditional acceptance. Love is the food our hearts need to grow, and so I had to figure out a way to give it in a way he could feel.”

I can choose to be impatient, irritated, frustrated with the imperfections I see in myself and my husband and the immaturity inherent in my young children – or I can choose to see the beauty and value of who we are and what we are building as a family. Only one of those choices will fill our home with the love our hearts need to grow, and the welcome we need to feel that here, at last, is a place where we – no matter how different – can truly belong.