Tuesday, July 19, 2011

What IS Wrong With Collin?

Of all of the things I've dreaded since first learning about Collin's diagnosis, the most nagging and joy-robbing has been a fear of the question: "What's wrong with him?"

I'm not sure why that question in particular seized my imagination. People essentially ask it all the time with their stares and beat-around-the-bush questions. But something about the thought of hearing those words just froze my blood. I felt like it would make my sweet and remarkable son an object of scrutiny, put me on the defensive for something that wasn't his fault, and generally make painfully obvious the chasm I already felt between us and so much of the world around us.

Imagine my surprise when, sitting in my parents' living room with all my dear family, I heard the words, "What's wrong with him?"

It was my uncle. The one who taught me to tie my shoes and how to be a good name-caller (He always came up with the best ones, like Chicken Fur and Pack-a-Rat); the one I always had a special bond with and the one with major developmental disabilities.

I was so shocked that I didn't know how to respond, so he went on to try to explain to me why he was asking the question. But he had trouble putting into words exactly what was different about Collin - a problem many people have - and so there was some confusion between us as we muddled through a hard thing together. I'm sad now that I had let my fearful anticipation of a question keep me from having an answer ready. Because of that, the conversation didn't clear anything up for anyone.

But now the first asking of the dreaded question is over and - what a relief - it came from someone I love, someone with genuine interest and no desire to pry or hurt, from someone who in many ways prepared me for this life and for the very question he was asking. It's kind of beautiful, when you think about it.

And the equally beautiful thing that has come out of it is that I have felt free to think more about my answer to the question than the question itself.

As I see it, there are three answers to the question, and they are all right:

1. Hypotonic Cerebral Palsy, Seizure Disorder with Infantile Spasms, Cortical Visual Impairment, Global Developmental Delays, and Feeding Disorder:
Collin's brain did not develop like other children's.
- Because of this fact, his brain doesn't communicate with his muscles well and his muscles have very low tone, making it hard for him to control his body.
- Because of this fact, his brain has a history of throwing off crazy signals in the form of seizures that delay development and cause all sorts of awful problems.
- Because of this fact, his brain has trouble understanding what his eyes, which are anatomically fine, 'see'.
- Because of this fact, his brain has difficulty processing the world around him, making it hard for him to interact with it, which inhibits his development.
- Because of this fact, his brain has a tough time handling all of the incredibly complex steps that go into eating and so he gets his nourishment straight into his tummy instead of through his mouth.

2. We don't know.
We don't know the underlying cause of all of Collin's challenges. It is likely genetic, though we may never know if it was inherited or a spontaneous mutation. There is no name for his constellation of symptoms.

3. There is nothing wrong with Collin.
Track with me on this. Early on this journey, I felt very annoyed by parents who described their special needs child as 'perfect' or 'just how they were supposed to be.' It felt trite or even glib, like they were minimizing the enormity of the situation and the challenges that lay ahead. What particularly bothered me were phrases like, 'God doesn't make mistakes,' and 'God made him/her special.' I thought that people were trying to ease their minds about a terrible thing by pinning it on God and thus making it okay. Granted, I believed in God's providence in my life - that he would sustain us through the crushing difficulties that came with Collin's issues, that I could ultimately trust Him as my Father even though I often felt so tired and alone - but the thought that He would have caused this to 'happen to' my son seemed unthinkable. Then I found this book. I tried to read it to Collin, but I couldn't make it through more than a page at a time at first, because the pictures and words pierced me so sharply. I won't delve too deeply into theology here, I will only say that once I started to consider the possibility that Collin was the way he was by design, my perspective started not just to shift, but to morph. I found myself examining the standards by which I was measuring Collin and the sources of those standards. I spent time meditating on purpose in a person's life. And, finally, I started to accept the mystery that something that doesn't seem like it could possibly be right is not, in fact, wrong.

So even though there is a list as long as your arm of things that keep Collin from being 'typical,' and even though we will probably never know the physiological source of his symptoms, there is nothing wrong with him, because 'wrong' signifies something incorrect or erroneous and Collin is neither. Different? Yes. Confounding? Yes. Difficult? Yes. Wrong? No.

Feel free to ask me about it.

Wednesday, July 13, 2011

Grace

This is something that's been on my mind for months now. It started out as a blog on how to interact with kids who have special needs and their families - a practical how-to designed to alleviate some of the awkwardness and insensitivity I felt like I encountered so often. But once I got past 'don't ignore the presence of a kid with special needs' and 'never use the word retarded in reference to anything,' I couldn't really come up with anything universal. A comment that might seem like a no-brainer encouragement in some instances could be very hurtful if you've just had a rough day with therapies or development or doctor's appointments or you-name-it. The same question asked by two different people could come across as either kind interest or offensive prying.

So, I thought, maybe it has to do with intent. Maybe the point is to make sure that a person's heart is in the right place, so to speak -- to ask yourself what you're hoping to accomplish before you plunge into a conversation with someone else based solely on their differences. And certainly, this is helpful. If you find yourself tempted to ask a question or make a comment about someone before even saying hello, or to pass by without making eye contact, asking yourself Why? can be very eye-opening. But not everyone does that. And even people who do don't magically learn the 'right' thing to say by examining their motives. Plus, as the object of the questions/comments/avoidance (or, the mother of said object), judging intent puts you in the position of mind reader, which isn't fair to anyone involved. People who seem genuinely interested may end up condescending or just nosy. People with the best intentions may come off sounding like jerks. Heck, I grew up with a beloved uncle with developmental disabilities and I live smack dab in the middle of the special needs community and I often don't know the 'right' thing to say to another mother or her child.

The conclusion? If you can't issue general guidelines and you can't rely on good intentions, how can you make people learn how to better and more compassionately interact with individuals with special needs? You really can't. But does that mean that you're doomed to a lifetime of awkward/rude interactions that subsequently ruin your day? Oh no no.

I suggest that the answer is grace. There are all kinds of synonyms for grace I could list: mercy, pardon, favor, etc. The common factor in each definition, though, is that it is freely given. It isn't earned, and in fact can't be. I can't make people say or do the things that are most encouraging or helpful, but I can choose how to respond to them. And lately, I've been trying to choose (and strive and pray) to practice extending grace even when people don't deserve it, even when it seems like they should know better, even when they're doing their best but I'm just in a funk. When people stare, I catch their eye and smile. When a lady comes up to me with a sad look and asks if my baby is blind, I explain to her about cortical visual impairment and introduce her to Collin. When people avoid Collin for whatever reason, I offer them my example of interaction. When I just don't feel like answering the battery of questions about Collin's medical and developmental history, I try to be thankful that someone is interested and answer anyway. When someone uses the word 'retard' or 'retarded' in any conversation, I refrain from kicking them in the kneecaps.

I don't always do this well and I definitely don't do it because I'm trying to be the better or bigger person. I have my own reasons for thinking grace is the answer. I believe in Jesus as the Son of God and everything that comes along with that; and the way that ultimate Grace was extended to me has changed everything about my life and the way I live it. And now I wonder if there is really any other useful way to do things outside of grace. If you don't offer it, what will change? Are you going to teach someone a lesson if you come up with a witty retort? You may feel a little better (temporarily), but likely no one will learn anything. It's grace - freely given favor, mercy, help, compassion - that makes people want to change.

So, I don't know why I was surprised that my interactions with others concerning Collin became markedly better when I started to err on the side of grace. The lady who asked about Collin being blind now knows him by name and makes a point to stop and cheer him on during aquatherapy. I have found myself more willing to share about Collin and have consequently had the privilege of others confiding in me about struggles of their own. By responding with grace, do I keep myself from ever being hurt by insensitive remarks or ensure that every person I encounter goes away enlightened? Not even close. But it has made me more accepting of others and others more accepting of Collin. What's not good about that?