28 January, 2014

I Don't Hate Autism, I Hate Migraines.

Last night my baby girl had her first migraine. Or maybe it wasn't a "real" migraine, but it was a headache so big, that it made her cry on the floor, holding her little seven-year-old head, while afraid to touch her scalp. It made her need help lying down for fear that that her head would 'crash.' She wept and moaned, and looked scared by how the pain took over her entire brain and she told me it made her unable to think of anything else.

myGirl at 7
She didn't have the aura that I get, though she found it painful to read or look at light. It was a headache that built up over the course of the day, and had not diminished after water, food, exercise, or relaxation. She was so miserable, and almost unable to be understood between her sobs and pleas for help.

We have the tools to make those kind of headaches go away at our house, and so with a cool glass of water and a magic melting pill (Maxalt) she was able to crawl into bed, and lay flat, and eventually her swollen eyes closed, and she slept. She awoke today pain-free and chipper from a solid night's sleep. 

*** 

I don't sleep all the way through the night very often, between checking on children, and restless dogs and the occasional bouts of snoring (mine or my husband's, or the dog's) I awake at least once an hour, and I get out of bed 3-4 times a night to be sure that the hatches are truly battened down and no one has escaped, or died. But mostly I fall back asleep easily, unless there is something big playing around in my mind.

Last night, each time I awoke, I realized I had been expecting something. I listened each time waiting to hear the sounds of un-soothed uneasiness. I had been expecting Lucy to be throwing herself around her room, or sobbing, or screaming in pain, because I had been triggered, and I remembered all of those horrible nights when Jake was younger. All of those days we had before we knew he had migraines.

Watching Lucy on the floor of the hallway last night so upset, barely able to speak, I realized how lucky we are that we figured out Jake's headaches at all. Right in front of me was my eloquent daughter with all of her ability to speak, unable to communicate her needs; how did Jake ever stand a chance? 

myBoy at 7
It took us years-- years of testing, and reading, and researching, years of praying, with people we barely know, praying. We drove 'round and 'round, and devised elaborate set-ups to rock him gently even when his body was too big to be held in the gliding chair, or the IKEA swing. We hired caretakers to allow us to sleep, knowing that he would be crying and screaming all night long. We made his twin bed into a giant gated box so he could at least throw himself down onto the mattress over and over again. We took turns holding his hand as he leapt up from between us in our bed and threatened to fly off onto the floor. We tried to keep him safe even as he knocked into and broke our noses, and his grandparents' glasses. We tried to keep him eating and drinking. I remember holding him, crying with him, and making him every promise to try to help him, feeling like I was failing when I had to take a break and pass his care to my husband. He was at least seven before we had a handle on it.

And for all of it, as bad as it was for Descartes and I, and how ashen we got, and how it affected our friendships, and our careers, and our health, and our marriage. I know that it was so much worse for Jake. It was so obvious he was in pain, but no spinal tap, MRI or genetics test could tell us why he was biting at his own hands in frustration. You can still see the scars on his beautiful hands.

Those years before we figured out the migraines are often a blur, sometimes other people need to remember them for us, but I do recall how sad Jake was. So very, very sad. I remember the desperate look in his eyes, like he wanted out of his own body. I remember how he yelled at me, and I just kept hoping that the sounds would turn into words that I could understand, so I could help him. Not being able to soothe him was the most helpless feeling I've ever had.

He had all those sounds, and actions, and giant movements (despite his cerebral palsy), to try to tell me something, and I just couldn't understand the one thing he wanted to tell me: Mom, I have a migraine. 

***

Sometimes people in the online-world think that Jake must have very few needs because I speak about parenting him without saying things like "I hate autism." or "Autism can suck it today."  I have never felt like something "stole my child," or that the "real child" is "hidden behind the autism." I don't believe that saying there is an "autism epidemic" helps my child, or my family. I don't believe that autistics are burdens on society. But just because I don't buy in to all of that doesn't mean I don't find this particular flavor of parenting harder than I thought it would be. It doesn't mean that I don't sometimes long for my son to encounter the world with fewer hurdles. It doesn't mean that I don't want, sometimes, for things to be different than they are. 

But those notions or longings and desires are not always about autism, and my guess is that similar wistful thinking happens for all kinds of parents and people all the time.  I don't need to hate autism to want my son to have an easier time at things, just like I don't hate being tall just because no store-bought clothing ever fits me properly. Autism is intrinsic to who he is, and you can't hate a part of your child and not have that child feel like they are damaged goods. 

I don't hate autism. I hate migraines.








14 January, 2014

No Woe Here. It's a Happy New Year.



I drove past the building where my husband and I went to those prenatal classes. The ones we went to when I was pregnant with Jake, and a sob lifted up through my gut and caught me by surprise by gasping out so sharply it was like a gunshot in the distance.

I wasn’t sad, exactly, or happy, or nostalgic, just jolted by how very much I have learned since those classes finished; what a different woman I am.

We were late for every single one of them, every single class. We thought we were too good for them, I remember that now. I thought we knew more, and were smarter than every other couple in that class, before we even walked in the door. The nonchalant arrogance of youth and privilege, health and prosperity, kept my feet several inches off the floor, even as we were good kids who held doors open for others, and made plans to take our future children on world tours, so they could truly understand how blessed we are. I was not ungrateful or unkind, just unwearied, and undereducated by life. I didn’t know how much I didn’t know.

I remember that I liked that we were joining a new club. With the addition of  “parent” to college graduate, married, and employed, we were bound to just add to our parents’ pride in us. We bought a home and stripped the heinous paper off the bathroom walls. We had so much. We were almost done setting up everything to play out the perfect life.

But I wish I could talk to that younger me, take her to coffee and let her know just a few of the things that would be ahead. Our pastor quoted Dante at our wedding “Abandon hope all ye who enter here…” and, well actually, that’s what I would give her, like a talisman: Hope.

I would let her know that hope is not neurotic anticipation. Hope and hard work will be the foundation of every day from that day forward, and without one, the other will be useless, so have them both.

I would tell her that no amount of childhood can prepare you to be a proper adult, and our parents can’t be blamed or praised for everything, because every day is a new chance to be better, or to make bad choices all on our own. Who I am today is a result of my foundations, but more a result of all of the choices I’ve made since my parents stopped telling me what to do. So depending on the topic, I have been free to make my own choices about some things since I was five, and others I have just learned to manage on my own.

I’d remind her that there is no guide better than her own moral compass, so don’t get caught using someone else’s directions. And when hearing the words of others, I’d tell her to try to translate them to their best possible meaning, because most people don’t mean harm, even when their words are sharp, and most of the vitriol she will hear won’t really be aimed at her directly anyway. I’d tell her to remember the kind words that people say to her, because replaying only the mean things will break her heart. And when things finally blow over, whatever they are, she should let go of being sad, because people who do mean to hurt you rarely come back to check on you.

I would tell her to sleep easier, and tell that voice in her head to go ahead and think it through, and make a path, but not to lie awake each night branching out every plan until tomorrow is so, so far in the past you are regretting your future before today has even played out.  I would encourage her to enjoy each bite of life, and when there is a pause, remind her to recall what it was like just before that biggest problem you have ever faced, appeared before you, because that is life too, the sweet parts in between the hardships. And the truth is, there is more sweet in life than we think. 
__

I pulled the car over to breathe properly,  because I remembered the lightness, and remembered what I thought was hard then, before I had ever experienced all of the amazing twists of humanity I have seen since. And I realized that driving past the building thirteen years later is one of my sweet moments before something else comes to our door, so I wanted to remember the feeling. I know more than those people in that room now for sure, more than my younger self, but I know now how much more there is to learn.

As this New Year begins to unfold, I find myself grateful and humbled.  I am aiming to live joyously and without apathy. I want to hear each person’s best intentions, and help people hear the good in each other’s words too. I am full of hope, or I am trying to be full of hope. I really want to start each day with a full cup, and if most of it spills out, then I will try again tomorrow, but at least I’m going to try. 

 ***
because of course a Happy New Year post should include a giant quote about Hell.

Dante Alighieri (1265-1321).  The Divine Comedy.
Canto III
I then, with horror yet encompast, cried:
“O master! what is this I hear? what race
Are these, who seem so overcome with woe?”
He thus to me: “This miserable fate
Suffer the wretched souls of those, who lived
Without or praise or blame, with that ill band
Of angels mix’d, who nor rebellious proved,
Nor yet were true to God, but for themselves
Were only. From his bounds Heaven drove them forth
Not to impair his lustre; nor the depth
Of Hell receives them, lest the accursed tribe
Should glory thence with exultation vain.”
 I then: “Master! what doth aggrieve them thus,
That they lament so loud?” He straight replied:
“That will I tell thee briefly. These of death
No hope may entertain: and their blind life
So meanly passes, that all other lots
 They envy. Fame of them the world hath none,
Nor suffers; Mercy and Justice scorn them both.
Speak not of them, but look, and pass them by.”

TL;DR
do not live selfishly and
don't muddle through this world indifferent to good and evil;
there is no glory in a life of apathy.
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