Blessings Counted

Feeling so humbled and grateful to have had the right people in my child's life, at all of the right times. I spent two hours in a council with some very brave parents tonight, discussing all of the ways that our state is failing our children, and facing the overwhelming question of how to turn things around. The possibilities are still nebulous, but you've got to have at least a little spark of hope when a council head has the humility to look at a room full of autism parents and say, "I'm not the expert in this room. You all are."

Two hours is time enough for a lot of sad stories to be told, though. Each parent's testimony was both heartbreakingly similar, and miles away from the next one--and worlds away from my own.

Hug your babies a little tighter tonight, guys. There is always--ALWAYS--someone in a worse place than where you are now. And to all of the teachers and therapists in C's life - thank you. Every second mattered.

School

My Facebook status last night:  

The Great School Open House event of 2014 is done. 

1. Thank the good LORD for a kindergarten teacher who remembers me (and my anxiety about [Little C]) from TWO YEARS ago, and demands that he be transferred to her class at the last minute. I almost cried all over her, y'all, and it's way too early in the year for that much crazy. 

2. Note to self: increase budget for teacher appreciation week. See #1.

3. Next year, I am strapping school supplies for two kids to my back like a SHERPA, rather than staggering into school, in a dress and heels, carrying multiple overstuffed bags...then wandering around in search of two classrooms located in polar opposite directions. Better yet, I shall train my kids as tiny sherpas.

5. Moving from here to there to everywhere else with two kids constantly in motion and going in completely different directions is very overwhelming.

5. This was just PHASE ONE, and it's gonna be a small miracle if I survive this week...but so far, so good.

Now, somebody get me cake.

It was sort of the epitome of an autistic kid's nightmare, although ironically, I was the one who had the biggest anxiety issues.  For an event organized by *teachers*, the whole thing was remarkably unorganized, but I suppose there's always something to quibble about.  We checked the teacher assignment board, my heart sinking as I saw that little C's assigned teacher was not who I'd hoped she'd be.  I was praying that we'd get Big C's kindergarten teacher, a woman I already knew and was able to talk freely with - a woman I'd discussed Little C with eons ago.  No such luck, apparently.

Still, we made our way to Big C's classroom first, only to find that he was (temporarily) teacher-less as the school was working on hiring a replacement for his class.  Okay, fine.  I can deal, he knows the sub, we're gonna be fine.  Breathe.  Supplies were (thankfully) dropped off, chat and well wishes were exchanged, and we soldiered on, one school supply load lighter.

Our second stop was Little C's classroom.  We'd talked about this, y'all.  We'd talked buses and classrooms and lunchroom behavior and bathroom breaks and staying in line, and now he was *finally* strolling through the halls of this much anticipated place, wide-eyed and bursting with excitement.  We arrive at his classroom, meet his teacher...only to find that she's not his teacher at all.  He belongs in the class *across the hall*, we were informed.

Immediately, I am miffed.  This was SUPPOSED to be well planned, and prepped-for, and special for him--and yes, he was perfectly fine, but *my* blood pressure was climbing by the second, because this is a mess, I thought.

So imagine my relief and chagrin when the teacher "across the hall" turned out to be Big C's kindergarten teacher.  The one I'd talked to TWO YEARS ago about little C.  She'd remembered our conversation, and she'd requested him for her class, but an administrative mix-up in the chaos of last-week-before-school time had resulted him being placed on another teacher's list.  When we talked, she told me laughingly that ten minutes before the doors opened, she'd run across the hall and asked the teacher there to simply send him her way when we arrived.  

I've never come so close to crying all over a grown woman, y'all.  She'd remembered.  And he mattered.  We mattered.  In the end, that's all we needed.

I stumbled through the "here's what's in store and here's your small mountain of paperwork to fill out" preliminaries, we shuffled through the remaining lines and paperwork drop-offs, and headed home.  

The chaos I feared never came to fruition - little C remained calm, (relatively) focused, and chipper about the entire process.  His mom remained frazzled, but all in all, I'm feeling very positive about this year.  Especially with people like his teacher on his team.

Five

Dear Little C,

You're five now.  Five, as in "the age of school" five; five as in, "no longer a toddler" five.  This milestone feels less a milestone as it does a crossroads, now.  Three years ago, I couldn't have fathomed what five would look like on you - I wouldn't, in fact, have been able to push aside the panic to think on it.  Five was too much--too BIG--to handle when you're taking autism one day at a time.

Five, standing on the cusp of your future.  It doesn't seem real, but every day I feel time barreling onward, faster and faster, and I realize that you are no longer the infant depending on me for everything vital in your life.  Nor are you the fretful, overwhelmed toddler in need of our guidance in a strange and frightening world that doesn't speak your language.

You're you now, sweet boy.  You always were, really, but you're coming into it now.  You're more comfortable with what you like--and what you don't--and every day there seems to appear another tool in your toolbox to communicate your what's and why's.  Instead of crying in distress, you pull words from your hard earned arsenal to tell me not just that you don't like something, but what it is about it that irks you.

As frustrating as it sometimes is when you glare and harrumph at me, glaring is precious--it's hard-fought communication.  I treasure your glares with as much fervor as I once prayed for answers as to why--why--my poor baby was crying, without knowing the reason why.

It makes me sad when you declare you no longer want kisses anymore - you request Eskimo kisses instead, and for as hard as you've worked to make yourself understood, I push aside my sadness and replace it with pride in your ability to express yourself, now.  I quietly thrill, though, when you place a gentle kiss upon my cheek in return, though you won't allow me to touch your own.

There are--and will almost always be--times in which I must be Parent, Teacher, Coach - there to push you beyond your self-imposed limits, prod you past your fears, insist upon the Trying instead of Fearing.

Now that Five has arrived, though, I watch the feathers of your wings inch out, bit by bit, and realize that the days of those decisions being solely mine are numbered.  My responsibility to push you to stretch your boundaries is equaled by that of the need to respect your decision when Enough has become Enough.

I don't understand why the smell of meat makes you so upset, but because you pushed yourself to try it anyway, I'll learn to cook your favorite meatless foods.  Peanut butter's practically as good as meat anyway, right?

Three years ago, I took a photo of you similar to this one, and the emotions that filled me at the sight were overwhelming.  I worried for you - we hadn't yet learned you were autistic, and I didn't know what that word did - and did not - mean.  I just knew that  I didn't understand why you did this, and it made me feel helpless.

Three years later now, though, and while you're still doing this--the same "quirk" that first alarmed me--now the sight fills me with wonder.  Your mind is fascinating to me, and a constant treasure.  I am proud that you see things that I don't, however you see them.  I don't need to understand to be proud.

Five

Little C turned five today. Birthdays have always been hard for an emotional mama like me, but this one was a little more momentous than most. He's five. The age at which children go into kindergarten, the age at which he's no longer considered a toddler. He's a kid now, which is hard for me to wrap my brain around.

Raising any child is a bit of a roller coaster, and Little C has brought us a few dips that were scarier than others.

The thing about roller coasters, though? The drops are nerve-wracking, but the view from the top is pretty damned spectacular.

He is funny and vivacious; kind, loving, and demonstratively affectionate. He is smart and bubbly and makes a friend of anyone he meets. He has confronted mountains, dazzled them, and left them bewildered in his wake. He is mine, and I am so proud of him.


Happy birthday, sweet boy. If it's possible to be any prouder of the kid you've become, I can't imagine how.

More than you ever wanted to know about me. No, really.

Tomorrow's my baby's 5th birthday, and I'm trying really hard to distract myself to keep from dwelling on this fact, so BEHOLD. I give you, Things You Never Really Had Any Desire to Know About Me:



What is the last thing you watched on TV? NBC's "Parenthood." I love that show with a passion that borders on irrationality. I spend every episode thinking to myself, "OMG, that is so me." Except I say that about every character in just about every scene, so I'm pretty sure this favorite show of mine may be a strong indicator of multiple personality disorder.


When did you last step outside? What were you doing? I went for a run this afternoon, making a 3.2 mile loop around my neighborhood. I always get a little fluffy in the winter time when it's too dark to run when I get home, so spring is always get-your-butt-back-in-gear time for me. As I have a couple of 5K runs coming up, the desperation level is a little higher than normal these days.


What is on the walls of the room you are in? Paint. And, um, a shadow box with visual rope-tying guides (which seems a little creepy when I say it out loud, like that. IT'S NAUTICAL, DON'T JUDGE ME). I edit and *computer* in my teenager's room while he's away, and his room basically looks like a guy's dorm room. I'm too lazy to care. Go, me.


If you became a multi-millionaire overnight, what would you buy? A new house (preferably with an editing room NOT resembling a dorm room), as well as every L lens ever made.


Tell me something about you that most people don’t know. Well, I think most people I know already know (and make fun of me about) this, but probably the strangest thing about me is my pathological fear of biscuit cans (although I am not alone, I swear). My anxiety issues and fear of random noises combine into a perfect storm of Oh my God, husband, stop chasing me with the Pillsbury doughboy every time I have the misfortune of being near one of those bastards. This is usually at a party or some other random place, as I absolutely refuse to allow anything in a pressurized can inside my house.


Who made the last incoming call on your phone? My husband. Probably. I'm not even really sure, it's pretty much a Facebook/Reddit/Calendar/Email machine for me that I occasionally remember is useful for phone calls now and again.


If you could change something about your home, without worry about expense or mess, what would you do? Redecorate entirely. We built the house, had a baby 6 days after moving in, had another baby, got an autism diagnosis, and then put off decorating indefinitely, so it's kind of a hodgepodge mess. Every trip to crafty friends' houses leaves me with smoldering resentment at my lack of inner Martha Stewart, so my first call would be to an interior decorator to say, "SOS, b*tch."


What was the last thing you bought? Drinks for a friend at a concert. I got to watch her get buzzed, which was basically all of the fun without the worry of addiction or hangover. WIN.


Would you go bungee jumping or sky diving? Hells to the no. I'd prefer my last words to not be "WHAT THE HELL WAS I THINKING?", thankyouverymuch.


If you could eat lunch with one famous person, who would it be? Serious answer: Kate Winslet. She's done a lot of wonderful work for autism, seems very down to earth and not at all full of herself, and I think I'd genuinely enjoy getting to know her. Not so serious answer: Jennifer Lawrence. Pretty sure we'd burn something down. More realistic answer: I am the quintessential socially awkward penguin, so it's probable that anyone I went to lunch with would end up extremely uncomfortable in my presence, as I spent the hour blinking at them and panicking inside.


Which store would you choose to max out your credit card? Amazon: seller of all wonderful things.


Is the glass half empty or half full? Half full, and preferably containing coffee.


What’s the farthest-away place you’ve been? I don't geography well. Is Washington DC further away than Colorado? What about Chicago? One of those is a safe bet.


What’s under your bed? Workout weights. And dog hair.


What is your favorite time of the day? Sunset if I'm outside, night time if I'm inside. The way the house just hushes when everyone is peacefully asleep makes me feel like I'm caught up for about five seconds.


What Inspires you? Brave bloggers. I follow so many who fill my newsfeed every day with personal stories, helpful instructional posts, motivational discourses, or just plain hilarity, but all of them put themselves out there in the wide, wide world of internet scariness on a regular basis to touch others in some way or another. Check out a few of my favs, and maybe write one of your own?


***


Stimeyland, inspirator (is that even a word? Nevermind, I just made it one) of this post, rockin' fellow autism mom, and brightener of many of my days.


Jess, at Diary of a Mom, who has helped me fumble my way through parenting a child on the spectrum, and toucher of the minds and hearts of autists and those who love them.


The Bloggess, who needs no introduction, but whose words both inspire and delight, as well as resonate deeply with me in so many ways. (Also, Knock Knock, Motherf*cker.)


Glennon at Momastery, who's just indescribable. Funny and irreverent, but also reverent and flawed and oh-so-much-me. Check her out!

The Birth of a Future Marriage

Last weekend, Big C had a Cub Scout event to attend with his friend B, which meant Little C tagging along and playing with B's little sister to pass the time.  Luckily, he and said little sister are fast friends.

Said little sister is ALSO a little bit of a diva-in-training, and loves to do all things girly.  She's forever hauling Little C off to play this or come see that, and talks his ear off along the way.

Generally, Little C is a good sport.  He loves everyone, and just about everyone loves him, so he's willing to go along with just about anything.  He humors Little Sister a lot (tolerance is something he mayhap learned out of self-preservation in this house.  Who knows about these things, really?)

So I was happily snapping photos at the event last weekend, and noticed Little C and Little Sister sitting and happily talking, being all friend-ly.  I still get a little choked up sometimes, seeing him play with actual friends, that I sort of habitually snap photos when I see the magic in action - partly to preserve the  memories, partly out of some irrational paranoia that his social skills will one day go poof and I'll need hard evidence that they ever existed (I didn't say I was a particularly rational person, now did I?).

Y'all.  I didn't realize the gold I had obtained with these photos until later.

BEHOLD: The funniest and most true-to-life photos I have ever taken.

 











You're welcome.

The Hardest Thing

I'm a person whose mind never really stands still.  If I am waiting in a line somewhere, my phone is usually  handy, and I am browsing my news aggregator.  Rather than close my eyes and drift off at the end of the day, I have to read myself to sleep.  My Facebook and Twitter feeds are filled with family and friends, yes, but is overwhelmingly comprised of various sources of information - news, forums, groups of every sort.

I like to think that this information broadens my horizons, informing me and stretching my mind, exposing me to points of view I may never hear in my regular circle of acquaintances.

I came across this link today in my news feed.  In it, a pediatrician discusses their decision to not accept patients whose parents choose not to vaccinate them.

This may sound shocking at first blush, I know.  Shouldn't a physician be impartial, non-judgmental, thinking first of the needs of the child without standing in judgment of the adults who make the decisions for him?

The words rang true to me, though, and reiterate what I've slowly come around to in my own life.

There is little point in arguing with those who choose not to vaccinate.

Don't get me wrong - I understand that there are legitimate medical reasons for vaccination refrain in some cases - compromised immune system, tendency to severe reactions, and various others.  I'm not saying that vaccinations should never be refrained from.

I just don't believe in making uninformed decisions out of fear.  I believe that I have a responsibility to my child to choose a doctor in whom I can place my trust, and to respect the opinions of a professional trained in a field in which I am not.

If my child were born with cerebral palsy, or spina bifida, or contracted malaria, for goodness' sake, I would bring him to a doctor.  What I would not do, however, is patiently let the doctor lay out the facts and course of treatment, all learned during years of hard study and practice, then politely decline to acknowledge or implement any of it.  I would not bristle and accuse that doctor of ignorance of "studies" I'd read about on Wikipedia, or heard espoused from a celebrity's mouth.

I would look at this professional who had spent countless hours studying and putting in clinic hours, and shadowing, and learning the names of chemical compounds I would never be able to pronounce on my best days, and I would listen to the words he had to say.  I would acknowledge that although I know and love my child, this is the first time I have ever seen this illness--and that having seen countless children pass through his doors, it is possible that this professional's knowledge of it is greater than mine.

I would keep in mind that while I am an expert at my job, so too is he an expert in his.  And I don't read medical textbooks for mine.

It is difficult for me to understand, then, why parents choose to adopt this attitude when it comes to vaccines.  It is ludicrous for me to think that because I gave birth to my children, I then automatically understand the inner workings of their bodies and minds.  I love them, but there is not a day that goes by in which I do not look at them and feel hopelessly unprepared to parent them--unprepared for being the guiding light in their lives which helps to shape them into the adults they are to become.  And that's good, I think.  The moment we as parents think that we have it all figured out is the moment in which we fail.  I parent my children for who they are today.  And then I start over tomorrow.

All this is not to say that I do not understand the need we have as parents to know best and fix things for our children.  The hardest lesson I've had to learn as a parent is to let go, and realize that it's not about me.  I still remember the frustration of not understanding why Little C was crying, why he was so frustrated, why he could not tell me what was wrong.  Then I remember the relief that swamped me when we got him into therapy, and realized that they understand him here.  These people, trained to understand how the autistic mind works, got him in a way that I, as his mother, did not.

That was hard.  I struggled with guilt and depression at the realization that these strangers were better prepared to parent him than I was.  I was his mother.  Why didn't I understand?

Years later, I realize now that the relationship of parent to child has no givens.  I don't understand him because I gave him life, I understand him because I make the effort to.  I subscribe to news sources, and peruse articles, and patiently (sometimes painfully) listen to viewpoints that I may disagree with, in the effort to never make a snap decision based on uninformed sources.  I also listen to him, which is a slow process at this point, but is ever evolving.

Until he is able to make decisions for himself, my responsibility as a parent is not just to arbitrarily decide what is best for him, but to make every effort to make informed decisions on his behalf - and in the medical arena, that means choosing a doctor I trust, and listening to what he has to say.

I'm not sure how to end this post, really.  I'm a little sad that the parenting war is so often such a bitter one, and that children so often are the ones that suffer the most for it.


{Helpful Links}

-http://www.thedailybeast.com/articles/2014/01/30/the-real-reason-pediatricians-want-you-to-vaccinate-your-kids.html

-https://showyou.com/v/y-lhk7-5eBCrs/penn-teller-kill-the-antivaccination-argument-in-just-over?utm_source=facebook&utm_medium=social&utm_campaign=timeline

-http://www.reddit.com/r/videos/comments/1whbqn/an_infant_girl_in_intensive_care_with_whooping/ *

*including the reddit link because the commentary there is so often thought provoking (and sometimes not, but worth reading nonetheless).  Original video link here: http://www.youtube.com/watch?v=S3oZrMGDMMw&feature=youtu.be