Monday, May 16, 2011

Living Blind*

I began this blog with the intention of committing to a specific range of topics and sticking to them, but instead I've found myself branching out and making it a bit more personal then was my intention.  I still want to commit to not making this a journal of my daily life, or even my daily thought life, but nevertheless my thought life, and the events and situations in my life that stimulate it, are what I have to bring to you.  I hope to also include some opinions and theories based on research into the psychological and sociological topics that interest me, but as I've come along with this over the past month I've also felt led to share the lessons I've learned and the moments that touch my life, in the hopes that I can offer new insight or even hope to someone who may read this.  (If I do, please comment! I think there is also a link to contact me privately by email, or alternatively you could post it as a comment, but mention clearly that you do not want me to post your comment, and I will read it without posting it.)

I am not a fan of ignoring or bottling up my hurts.  I believe that the first step of learning to cope with or manage the negative feelings and painful circumstances of life is acknowledging one's emotional responses to them, and that keeping them contained in some back corner of one's brain prevents a person from dealing with the pain, which can only result in more pain in the future.  Usually I can be accused of just the opposite of this, in fact -- I am often guilty of stating my feelings in the moment, without stopping to think about how others may react.  In the past few years, however, I have experienced a few hurts that have shown me that bottling the feelings, or keeping them boxed up on a shelf as I like to think of it, has its place.  For the first time in my life I am encountering something so painful that trying to deal with the hurt as I experience it is simply too much for me.  If I were to allow myself to truly experience and express my emotions on this as I felt them, I would be an invalid, because these feelings would overcome my ability to live a normal life.  For that reason, I store them away and don't talk about them much, and then only with those with whom I feel safe.  I can have it no other way, simply because I have a family and responsibilities and I need to keep on living each day.

My father was diagnosed with Early Onset Alzheimers Disease at fifty.  My grandfather, his father, died in 1987 of the same disease, along with my great aunt a few years later.  It is suspected that their father also died of the disease, and possibly a number of other relatives before him, though the Alzheimers diagnosis was not available at that time.  About a year ago my father received the results of some genetic testing and what we'd always suspected was confirmed -- our family carries a gene mutation that causes the disease.  With this confirmed it leaves me with at least a fifty percent chance of contracting the disease, probably around age fifty, and dying about ten years later, at sixty.  And there it is -- my greatest pain, my greatest fear.  It is a fear that consumes me, despite my best efforts to keep it in a closed up box at the back of the closet that is my brain.  It is a fear that prevents me from being able to fully cope with the reality of losing my father to the disease, probably within the next five years.  In fact, my father's disease leaves me so terrified that I find myself afraid of my father himself.  This disease being what it is, it seems to be gradually consuming his personhood, and while I value him no differently, to see him and speak to him is to see a shell of the man I once admired.  He seems lost in a fog, lonely, at times reaching desperately for the parts of reality he can still grasp, at other times just quietly slipping away.  

When I think about the very real possibility that I will one day be the one slipping away, it grips me.  I am not afraid to die.  I am somewhat afraid of the pain, or more likely the mental anguish of slowly becoming lost in my own mind.  But the fear that threatens to undo me is that of what I will do, and what I have done, to my husband and children.  I may carry a gene mutation that will cause my brain to slowly turn to ameloid mush, and unlike the more typical form of Alzheimers disease that comes after age sixty-five, this may begin as early as my late forties, and kill me by sixty.  And so my thoughts go:

When I am fifty, my children will be twenty-seven, twenty-six, and twenty.  My husband, who will be tasked with carrying for me, will be fifty-eight.  I have one child with a disability, who may or may not continue to live with us at this point.  I may never know a son or daughters-in-law.  I may never know grandchildren.  I may never see my children become the age that I am now.  They will have their own lives, and I will interfere with them, needing care around the clock, but unable to thank them for it because at some point I will forget their names.  And then the worst thought of all -- if it happens to me, chances are strong that it will happen to at least one of them too.  

On Christmas Day, the first year after my father's diagnosis, E, IC, and DJ and I were driving up to visit my parents for the holiday week.  We stopped at a truck stop, where friendly employees and truckers headed home themselves stopped to admire my sweet babies.  One trucker sat down at the next table to talk to me while I nursed, and mentioned that he'd always wanted to have kids.  The reason he didn't?  He had ADHD, and didn't want to pass on such a "terrible thing" to a child.  This was the moment when it first hit me about what I had potentially done to my children, simply by becoming their mother.  Already lost in one of the worst periods of depression in my life at the time, I hit rock bottom for awhile.  I had never seen myself as a good mother, but now my parenting didn't even seem to matter -- my children were doomed by their genes.  While the genetic mutation was not yet confirmed in my family, I had always assumed it to be there.  Three generations of dementia and early death can't be wrong.

The floodgates opened up again last night when I read a friend's blog in which she lamented the possibility that she may have passed on bipolar disorder to her son.  I cried for quite a while, I sat in a dark room and watched the rain, and I pitied myself and my family.  I asked God why.

Then this morning, sitting in church trying to keep my brain the in service and not on which child needed what and when, I followed my pastor's instruction to open my Bible to John 9, and God spoke to me, and I was reminded once again why we call it a "living Word".  In this passage, Jesus is walking along with the disciples when they see a blind man.  Apparently this wasn't unusual; the man had been sitting in the same area begging for probably most of his life (9:8).  They didn't have the Americans with Disabilities Act in ancient Israel.  The disciples ask Jesus the same question I asked God last night -- why.  Why would God allow this man to be born this way?  Informed by what they had been taught as good Hebrew boys, though, they made an assumption.  They asked, "Who sinned, this man or his parents, that he was born blind?" (9:2).  Having read this story a hundred times, their question seems immature to me now, but isn't that exactly what I was asking God last night?  Why, God?  What did my father, or my grandfather, or my great-grandfather do wrong that made you decide to curse my family with this awful sickness?  What can I do for You so that it doesn't happen to me?  Why am I facing this horrible way to end life?  Why is there even a possibility that my children will have to deal with this? WHY?  Though it was uncommon for Him to do so, Jesus gives them a direct answer:

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."

My pastor went on to talk about how the disciples looked at this blind man.  They saw him, and perhaps anyone who was seen suffering, to be a sinner, doomed to suffer with illness because he had sinned.  Jesus directly challenged this assumption, and explained that God uses illness to show His greatness.  Our pastor wanted to change our perspectives with those of the disciples, to see weakness in others as a canvass for God's strength.  Today, for me though, I was sitting in the other seat.  I was the blind man.  I might even be the blind man's parents.  I realized that I was still holding onto an idea I'd had as a child -- that my family was cursed with this illness.  It's amazing how childish thoughts, left unchecked, can grow to become a part of our adult perspectives.  It'd been there so long that I'd accepted it as fact, never accepting this simple truth, that our weakness, including illness, exists to showcase God's strength.  

No, I have no idea why or how God will use Alzheimers disease to reveal his goodness through my father, or perhaps me.  I still can't really imagine something good coming from something that still hurts me so much.  But what I can see is how God has already used my father, and I have enough faith to know that He still can, even as he slips away.  I don't believe that God will miraculously heal my father, like Jesus did the blind man, and I don't believe that He will heal me if I do indeed develop this disease.  What I believe is that there is more to life than how or when we die, and that Christ conquered death, not just so we can go to heaven, but so that even crippling illness and death can be enveloped in His love.  I don't quite know what that will look like, but if I see it in anyone, it will be my dad.  

*Please note that this post was written on Sunday, 5/15/11 around 10PM, but Blogger was down, so it is being posted now.

Wednesday, May 11, 2011

The Beauty Cult

Do I look like them yet?

Almost every night for the past two weeks, just before I go to bed, I have lathered myself in Jergens Natural Glow tinted moisturizer.  It's basically a body lotion with a small amount of self-tanner in it, so that after a few nights of use you develop a very light tan.  It's not as dark as typical fake-baking, and I think more natural looking.  The trouble with this stuff is that in order to prevent all the color from coming right back off, you have to wait for "several minutes" after applying before you can put on clothes over it.  They make it sound like this is no big deal on the label, but I don't find that my life affords me a lot of time to sit around naked and not touching anything.  As a result I end up doing this around 2AM, when everyone is asleep so that no one in my family is subjected to staring at me naked for a long period of time.  Then I sit there naked with the ceiling fan on high so that I can dry faster and just get to bed for goodness sake.  And while I sit, I wonder why in the world I am going through this trouble to have slightly browner skin.  

The short answer to that, of course, is that my brother is getting married on June 17th, and I am very concerned about my appearance for the occasion.  One is supposed to look their best for a wedding, it seems, but I had a baby last August and I am significantly overweight.  The other two bridesmaids do not have children, and while they are not super skinny either, I am the biggest by quite a bit.  I'm the fat bridesmaid that you try not to notice when you look at the wedding pictures and remark about how beautiful everyone looked.  The dress my future sister-in-law chose is OK, but not very flattering on me.  That said, I'm not sure I would have thought any dress was very flattering right now.  It just isn't a good time for me to be in a wedding, but that isn't exactly my choice.

So I find myself lacquered in smelly brown lotion every night and buying $50 undergarments that would make Madonna proud.  Which brings me back to wondering why I am doing this.  More importantly, while I probably will discontinue the tanning lotion after the wedding, why will I continue so much of the rest of my beauty regimen?  For that matter, why must I lose fifty pounds?  Why must I stand on the scale every morning, begging it to register a lower number?  Why are so many of us spending our precious time carving and sculpting and tinting our bodies to fit some culturally defined standard?

I just reopened Eve's Revenge: Women and a Spirituality of the Body by Lilian Calles Barger, ironically while I was waiting for the tanning lotion to dry.  Barger argues that in all of us there is a desire to find and define an authentic self, and that this desire is placed inside us by our Creator to point us toward Him (Barger 28).  "The beauty cult" takes advantage of this universal desire, and through media and cultural expressions, teaches us that we can manipulate our bodies in order to bring us closer to self-actualization (Barger 15).  "In providing prescriptions for our disconnected selves, the beauty cult understands our spiritual need to be who we 'really' are and preys on that need" (Barger 15).  

We all get these cultural messages our entire lives, and though we're taught to approach and interpret them slightly differently, as women, we all must face them and choose our responses.  My life, as you may have guessed from my chosen content for my blog, can be interpreted as a series of my responses to the cultural messages I have received about my femaleness.  Despite all the opportunities and settings in which I have had to face the issue of the disconnect between my physical and spiritual self, I have never found an answer to this issue that works in the long term or across the many ways that the issue rears its ugly head.  As a young teenager I embraced cultural standards of beauty and sexuality.  I felt more confident the closer I came to meeting them, but of course I never met them completely, and so I maintained a constant level of discontent with my body, my appearance, and my sexuality.  Almost anyone can see easily that the cultural standard of beauty is unattainable.  Again from Berger, "Continual exposure to the media ideal skews reality for all of us.  Its effect on the average young woman is a body dissatisfaction rate higher than 60 percent in high school and 80 percent in college.  The obsession with weight starts early, with 42 percent of girls in first to third grades expressing a desire to be thinner" (19).  After my experience with sexual abuse in my early teens I also saw myself as damaged, and sought approval and greater confidence (or perhaps self-actualization) through my appearance.  Discovering that it was easier to gain the approval of young men than of my female friends who were struggling themselves, I displayed myself as a sexual object, and though I longed to be much more, it seemed to me that that was life, and that my need for confidence and individuality had to be somehow negotiated either through or around my physical body, which as Berger implies, was forever getting in the way.

As I got older I tried a few times to escape the body battle entirely.  There were two periods, early in my marriage and later during the postpartum period of my second child, where I adopted what I saw as my modesty uniform: long loose skirts, deliberately unfashionable; solid colored t-shirts, and sneakers appropriate for long hours on one's feet caring for small children.  I woke up each morning and put on this uniform, and it reminded me that I was not a part of that world, where a woman must seek approval and love through the modification of her natural body according to cultural standards.  Both times, however, my desire to be socially acceptable overcame my desire to leave the beauty mold behind me, and I went back to more conventional clothes and attempting to keep up with fashion trends.  Even in my "uniform," I couldn't escape the focus on appearance.  When I met other young wives and mothers, they frequently remarked about my clothes, and I felt as if my choice to dress so differently came between us.  I sought their approval, and in the end decided that I valued forming new friendships more than avoiding the beauty cult.  While there is a part of me that wants to go back to the uniform, it would be a false representation, because obviously I am not truly liberated from beauty standards, and I'm not sure that true liberation would be expressed this way anyway.  "But must we subdue the fertility of the female body and truncate our emotional life to function authentically in a male world?  Must we surrender to the images and meaning that our bodies have received in culture, embracing their assigned sexual power to further our own ends?  As we silence our body or manipulate its meaning, we end up more alienated than ever, live sculptures for the male gaze and caricatures of ourselves" (Berger 25).

All these struggles are why Berger's book stood out for me when I saw it in the bargain bin for $5.  The price, as it turns out, is a real insult to her research and the significance of the body in women's search for spirituality and authenticity.  I directly relate to the mental struggles she describes.  "Yes, we were good girls and followed the script handed to us by the second wave of the gender revolution in the 1960s and 1970s.  We attempted to redefine womanhood on our own terms with a 'You go girl!' attitude.  But we are still haunted by the question What is a woman?  In the last forty years women have attempted to unpack this for themselves: Is woman simply a womb?  a domestic goddess?  eye candy to be consumed by the male gaze?  Or are we more than our bodies?" (24).  

I shudder to think what I am teaching my daughter about the value of beauty, or what beauty even is.  I see her striving for it, and already I'm afraid, because as of yet I have no answers for her.  I want her to believe that true physical beauty can be seen in the great variety of appearances and abilities that God has given to His women, and that the purpose of her body is to bring Him glory, but I don't even know what that means for myself.  And as long as I am staring discouraged at the number on the scale every morning, and marinading myself in tanning lotion at night, she is watching.  To simply say that appearance doesn't really matter is certainly one option, but how long will it last?  It can't last forever because the hard truth is that appearance does matter.  True, the last time I checked the Proverbs 31 woman was not worried about how she looked in a bathing suit, but as I've said, standards of beauty are culturally determined.  Short of isolating ourselves in a way that is socially unhealthy and unrealistic, we can not avoid cultural scripts.  Somehow the body must be negotiated.  Our bodies must be incorporated into our understanding of ourselves.  I just haven't figured out how yet.  

Saturday, May 7, 2011

A Mothers Day Message For My Children

To my oldest:  I love you for your tenacity and perseverance.  You were born from the belief that parenting was a divine calling, and that creating good people was a blessing we could bestow upon the world.  You were born to a mother who despite years of playing grown-up, was still very much a child herself.  You were born under the assumption that it was possible to parent the right way, and that each and every move I made was shaping you forever.  You came as you grew and as you live --with endless hard work, painful moments that gave way to pure joy, and a reluctance to embrace what eventually become your passions. Your parents were poor but blessed, and brought you home to a one room apartment where your crib sat next to the refrigerator.  Your screams in the night were like the moment just before a car accident.  You forced me to learn how to rock a baby and use the toilet at the same time.  You challenged me past the point of insanity, and left me wishing that I'd never taken this path, yet knowing all the while that you were also one of the greatest things that would ever happen to me.  You taught me that it is possible to love so much that you ache, that you want to run away from it because the desire to be perfect and to live up to what it deserves is so much that you know you will be forever a failure.  You made me question whether I would ever be able to care for you, whether you'd be better off without me.  You made me see that there was so much in me that hurt, that needed to be healed, that needed attention.  That it's possible to scream along with your child and mean it.  You taught me that it's possible to give all of oneself and have it still not be enough.  You taught me that it's OK to ask for help, to admit that you are trying to do something completely beyond your power even when it is in fact your responsibility.  You lived through a suicidal mother, forced feedings, never ending diaper rashes, and horrific blood tests.  You showed me that it's possible to live on toast and noodles for years and still grow.  You showed me that sometimes you have to be pushed kicking and screaming into the best possible place you could be.  You showed me that one simply can't raise a child on her own.  You are showing me what it's like to love people deeply and still have no idea how to speak with them.  You are showing me that relationship doesn't have to be about conversation.  You are showing me that it's OK to back into a hug, to retreat to the reading corner, to cover your ears at unpleasant noises, and to need your food made just the right way.  You helped me know who my friends were, and who they weren't.  You've shown me what it's like to be deeply connected to someone you don't understand. You showed me that a school with broken toilets, no air conditioning, and a dilapidated and partially flooded building in one of the worst sections of the city might be exactly where you need to be left everyday. You entered school at barely three years old, unable to speak without repeating phrases from children's videos, unable to drink from a cup, to use the toilet, or to separate from me for even a few minutes.  Now, at seven, you read and write superbly, you have friends who play with you as an equal, and you tell stories about your day. You also chew your shirt sleeves and eat dirt. Once I thought you might never grow up, and now it is happening so quickly that I look at you and wonder if I'll ever have the kind of relationship I really want to have with you.  Where have you gone, my beautiful, squalling, train wreck of a child?  You are beginning to look and act like a mature girl, and I have done nothing to bring you this far.  I can take no credit for this person you have become; everyday you work harder than any of your friends will ever know to simply move and live in a world that you don't have the right instincts for.  At times it seems that you do it effortlessly, and at other times I watch you struggle and become sad and angry, faced with the hard work you must go through just to have what everyone else takes for granted.  You inspire me to look at every person I meet as an amazingly unique and complex child of God, and have taught me not to judge in any situation, ever.  You are my only girl, my precious one, my thinker, my sage.  It is possible that you have taught me more than any other person on this earth.

To my middle child:  You arrived in the middle of the worst moments of my life, bringing with you an equal mix of hope and trepidation.  You were unplanned, unexpected, and I was unprepared.  When I learned that you were inside me I cried in fear of the type of mother you would have when you were born.  I felt sorry for you even before I knew you, believing that I could never be a good mother to you.  With your birth I realized that God expands our hearts in direct proportion to the love He places in them. You came as you have grown and as you live --fast and furious, with unrelenting waves of pure energy and enthusiasm.  With you in a sling and your sister on my hip I stood barefoot in front of my doublewide trailer, yelling at my husband, and wondered when I'd become everything that I never wanted to be.  From birth you had to make accommodations to a family whose life had been full before you arrived.  You did not have a bedroom until you were two.  You slept next to me on a mattress on the floor.  You taught me to laugh.  You showed me that parenting could be fun and rewarding, that it was OK not to be perfect, and that sometimes the best way to handle the unexpected is to embrace it with a hearty smile.  You threw the sofa pillows into the tub with your sister, and I laughed.  You rubbed tomato sauce and ricotta cheese into your hair, and I laughed.  You pooped all over yourself and your father and I laughed like crazy.  You brought joy to a family that needed it desperately, and you continue to infuse every moment with a vitality that is absent without you.  You showed me that I can have and raise a normal child, and that no child is normal.  You showed me what it's like to be amused and exasperated simultaneously.  You have an insatiable need for attention and knowledge.  I have lost so much of your earliest years to exhaustion and traumatic memory loss, but I know that with you came a ray of sunshine, a hope for new possibilities and a future that was bright and beautiful.  You cherished me.  You wrapped your arms around me when you saw me cry, and you smiled and asked, "Are you happy, Mommy?" and then jumped for joy when I said yes.  You have moved me forward and kept me going when I wanted to give up.  You have renewed my energy when it seemed like I had nothing more to give.  You light up every room you walk into, announcing, "I'm here!" and the people inside are as happy about it as you are.  You've taught me that maturity isn't all it's cracked up to be.  So much of my joy is entangled in your person.  One day I lost you, and in the ensuing moments of terror I wondered if anyone else would ever be able to show me how to be happy.  Your favorite color is orange, which in a way defines you by itself.  You were my skinny, baldheaded, big-earred baby boy and now you are becoming the little man we have always called you to be, who shows us the fun in everyday life.  As your first teacher said, you are enthusiastic about your yes and your no, and you never cease to challenge us.  Where have you gone, my sweet little Manny Man?  You have become the spitting image of your father, and are a constant reminder of the love that brings us all together.

To my baby:  You are my prize, my reward, my sweet relief.  I prayed for you to come into my life for months, loving you even before sperm and egg united inside me.  With you I wanted the chance for a new beginning, an opportunity to fix the mistakes I've made in the past, to enjoy each moment of babyhood and not be in a constant hurry to achieve the next milestone.  I revel in you, I breathe you in, I hold you a little longer and remind myself that anything else can wait, but you will grow up and not be this smiling, needing, warm little bundle that you are now.  With you the pressure is off.  I have already seen myself a parenting failure, I have already seen myself make every mistake I said I would never make.  I have already seen myself say and do things that I would judge others unfit for doing.  With you I know that I am who I am, and God has put you in my life to refine me.  I know that much of the beauty of your growth will not result from anything I have done for you or any choices I make in raising you.   I know that you will still love me if I am not always a good mother, and that you will not cease to trust me if I leave you to cry for a few moments while I use the bathroom or finish my lunch.  I know that a baby can get a few bruises without suffering permanent damage.  I also know that, as they say, the days are long and the years are short, and in no time you will be grown, living a life that I know little about.  So with you, I will try to capture each moment, each portion of time that I am close to you.  I will look into your eyes as you suckle my breast; I will sing silly songs to you in public and not worry about what other people think; I will laugh when you make messes, and I will dance when you dance.  I will do my absolute best not to begrudge you your need for closeness to me, and every time I lug you around for hours until my arms hurt, I will remind myself that it will only be a short time until I wonder if I've hugged you enough.  You have brought simplicity into our life.  You came as you live --with a straightforward ease, uncomplicated by the world you have entered.  With you I have found my peace with motherhood, and I can exhale, knowing that I am being and have been the mother God called me to be --sometimes good, sometimes terrible, yet growing and living out a very gradual and clumsy movement toward integrity.  With you I will know that mothering is not a job, but a role, a calling to the constant creation and sanctification of relationships.  With you I will be imperfect and exactly what you need.  With you, our family is complete.  Where are you going, my years of stretch marks, weight gain, sling wearing, and constant breast-feeding?  You have grown into a family that will grow and love and learn and do amazing things long after I am gone.  You have become my legacy, the part of me that will still be here when I am with my God in my eternal home, the part of me that will linger in the hearts of generations who will forget my name.  You have become the greatest gift God has given me.

IC, DJ, and HT --Thank you for where you've been, who you are, and who you are becoming.  I love you.

Wednesday, May 4, 2011

Everything and Nothing about Autism

Everything I need to know I learned in Applied Behavioral Analysis.
I just finished watching Temple Grandin, and HBO movie from last year.  Temple Grandin is a female professor at Colorado State University who speaks on and studies animal handling.  She is also autistic.  I can't claim to have done a lot of research on her, and I have not even read her books, although I'd like to.  I can't tell you that learning about Temple Grandin or how her mind works will help you understand an autistic person.  It was a good movie though.

My little girl is autistic, and she is everything and nothing like Temple Grandin, or how Temple Grandin was portrayed in the movie.  There was one point in the movie where it showed Temple being very scared of an automatic sliding door at a dollar store; IC is afraid of the doors like that on trains and elevators.  She mostly seems scared that either the door will compress someone, or that the door will close with someone, like herself or me, on the opposite side of her.  Temple was shown eating only yogurt and jello.  IC eats probably about 10-15 different foods, all of which must be prepared to her exact specifications. But there are huge differences too.  Temple has stated, "the part of other people that has emotional relationships is not a part of me" (Wikipedia article, see above).  IC is very invested in her emotional relationships, and has even stated that she wants to be a mother when she grows up.  In fact emotional relationships seem to be a major interest for her, but she looks at them differently.  She likes to analyze them by saying, "Daddy is your husband.  You are Daddy's wife.  Daddy is my daddy, and DJ's Daddy, and HT's Daddy.  I have two brothers.  I do not have a sister..." and on and on.  Temple describes her mind by saying that she thinks in pictures, and was portrayed in the movie as having the ability to take a mental photograph of whatever she is looking at and remember it indefinitely.  I theorize that IC can perform this mental photography as well, but as of yet she has not shown the connection with math or engineering.  She is more likely to connect her "mental photograph" memory to words.  For example, there is a bulletin board in her school classroom with each student's name and birthday written on a cut-out shape.  IC can reproduce this bulletin board at will, and can list every birthday in her class, as well as her family, in order by month.  She can do this as fast as she can write them down; she doesn't have to think about it.  She can tell you the day and date of any event she deems important for roughly the last two years, such as what day of the week someone's birthday fell on, or when was the last time it rained.  Yet she struggles immensely with trying to understand what other people might be thinking.  If she says something to you, and you don't look at her or respond to her, she doesn't know that you didn't hear her; usually she doesn't even notice your lack of response, or if she does, she doesn't know what it means.

Now I'm going to tell you that I have no idea if anything of what I just wrote about IC is true.  There are times where I must advocate and argue and get angry so that my daughter can get the help she needs, and the truth is that I'm never completely sure what she needs; it's usually just my best guess.  It would be for anyone, with any child.  Think for a minute about how you interact with someone and what you're thinking while you're doing it.  You're thinking about what they're thinking, how they're responding to what you're saying or doing, and you're determining how to continue with the interaction based on that.  You're in effect comparing your perspective  with theirs, and that is how you know them- only through your own lens.  I think my lens isn't very successful at zooming in on my daughter.  In fact, I wonder if my neurology will ever allow me to understand her in a way that is meaningful to her.  And then I wonder if being understood is even important to her.  After all, I only assume that it is because it's important to me.

The truth is that my neurotypical brain can not understand her autistic brain.  The issue is much more complex than the problem of neurotypical v. autistic thinking.  As I said, my daughter is everything and nothing like Temple Grandin, yet they share the same diagnosis.  She is everything and nothing like Mordecai, a little boy she went to school with for two years.  Mordecai's needs were overwhelming.  His sensory and stimulation issues were so severe that his goals at school were things like learning to sit in a chair without falling out, walking down the hallway without falling down or needing to be restrained.  While Mordecai was working on these things IC was in the same class, working on writing letters, learning to introduce herself and listen to others and respond in a conversation.  Different needs, different levels of care, yet the same diagnosis, the same label, the same category.

Raising, caring for, and watching IC grow has taught me more than I ever could have imagined about people, and their differences and similarities.  IC and I stare at each other across a line between "autistic" and "neurotypical".  It is not a solid line, it's more of a spectrum, with complete autism on one end and complete neurotypicality on the other end, and everyone falls somewhere along the line.  By some measures the space between us on the line may not be that big at all, but when I need to help my child understand something, and I have no way to explain it or teach it other than the way I understand it, that space is like the grand canyon.  I can only imagine what that space must have felt like for Mordecai's mother.  But what I've learned is that that space isn't necessarily there because she has autism and I don't.  It's there simply because we are two different people, and our lives and experiences and thoughts and feelings differ by necessity, with each difference building that space between us.  IC and Mordecai are both autistic but IC was probably closer to me on that spectrum line than to him.  My mother and I are both neurotypical, but maybe I'm closer to IC than to my mother.  Our God-designed brains are only one factor, it's the choices we make with them and the feelings we feel with them that create the distance between ourselves and others.

When I found out that IC had autism, it felt like a death sentence.  Words can't really describe what it felt like without either trivializing it or sensationalizing it, but I cried almost non-stop for days.  I was aware that different people with autism succeeded at different levels and that it was hard or perhaps even impossible to predict at the time of diagnosis what the outcome would be for my child.  Perhaps she would "outgrow" the diagnosis, spend a few years receiving special therapies at which point she would seem so "normal" that the label would be dropped, and we wouldn't ever have to think about it again.  Alternatively, we could find no therapies that she responded to, and she could remain the same developmental age (at the time, about 24 months) as she was at present.  For IC, the journey so far has been closer to the former.  After a short period of moving around she was placed in a school program that utilized therapies that were very successful for her, and we continued from there, reevaluating her needs and growth every few months to determine what changes were necessary, what new things needed to be done, and what old things were no longer needed at all.  I can't say for sure how much her success has effected my perspective on her and her diagnosis, but as I reflected, the word "autism" changed for me.  It morphed from a noun -- a disease, a handicap -- to an adjective that describes my daughter.  I realized that while the condition shaped her and played a major role in how her mind works and who she is as a person, there is so much more to her than that.  Autism is just one part of her life, albeit an important one, just as it is just one part of my life.  IC is thoughtful, girly, fun-loving, humorous, loving, cautious, careful, picky, emotional, deep, whiny, cheerful, and autistic.

I don't mean to downplay the role this condition plays in her life or anyone else's.  I don't mean to disregard or downplay the huge responsibility that caring for an autistic child is, but what I do want to point out is that every child's experience, autistic or neurotypical, and every parent's experience, is different.  While I think support groups for parents of children with autism are a wonderful idea, I have never gone to one, because I think I'd be just as likely to see the differences between our experiences as I would the similarities.  In the end, I would share with them just as many experiences as I share with any other parent.

IC has taught me to look at people as a collection of their experiences, beliefs, values, ways of thinking and ways of feeling.  She has taught me the dangers and the inaccuracies of categorizing and labeling individuals, as necessary as it is to do those things in our world.  She has taught me that the words we use to describe someone can reveal as much or more about ourselves than they do the person being described, and that in the end, not one single person will fit neatly and perfectly into any category with another, nor should they.  God in His infinite wisdom loves infinite variety.  If I could see in pictures the way Temple Grandin does, and then use that skill to dig inside and analyze all the ingredients that make up an individual, only then could I begin to describe him, and even then it would be through my own flawed and tainted perspective.  None of us is capable of understanding another individual completely on our own, which is why I love believing in an benevolent God who knows me better than I know myself.  For me, the true joy in life is studying the people I love and gathering up all those little bits of information that come together to make up their personhood, and just when I think I've almost got them figured out, they shock the heck out of me.  It's a lot of fun.