I am sitting on a conference bridge now, trying to figure out what one of the presenters is saying. He speaks so incredibly fast that I don’t understand him a LOT. I know this is my problem, because he has a really strong accent, but he obviously speaks English a heck of a lot better than I speak, well, any other language besides English. I could swear he just said something about “managery Russians” and I don’t know where that could come into our topic.

Tim says I do this all the time, even to him. I will miss-hear something, and look at him and say, “Did you just say ‘managery Russians’? Because I don’t know what that means…”

Then he laughs at me.

This happens when he writes notes to me as well. Infamous story in our early marriage: Tim added something to the shopping list, and like most of his handwriting, it was a scribble. We had been spending a LOT of time working on our old house, and I just figured he wanted to use the “cheap clothes pins” to hold up something, or keep it in place while it dried, or whatever. So, I shrugged and bought a bag of cheap clothes pins.

I get home, and he asks me why I bought a bag of clothes pins.

“They were on the list! See, right here.”

Yeah, that would have been “cheap cloth napkins.”

I’ve never lived it down. Any time I either miss-hear him, or I can’t read what he writes, he says “cheap clothes pins.” If one of us is feeling particularly grumpy that we have to go to the store, the other will covertly add “cheap clothes pins” to the list.

We still have the bag of cheap clothes pins. We’ve used a couple.

I think they’ve saved our marriage. You have to be able to laugh, especially when you deal with county people, and paperwork that you swear you’ve filled out before, or strange family, or whatever. You have to know the code words to get yourself and your partner to laugh.

Cheap clothes pins. Get yourself a bag.

Some days, the best you can aim for is to make it to bedtime and hope that nobody pees on the carpet, and even that is negotiable. I’ve been so dead tired lately that even typing this is a real effort. I’ve got all the classic signs of being way over-stressed. And I think I just stared blankly at the screen for five minutes before writing this sentence.

Some have encouraged me to write down a few good things J-Man has accomplished even in the midst of the really bad days. Since I wouldn’t call him having digestive issues and whining constantly for the last several days worth celebrating, I had to try a bit harder. I just feel like wallowing in self-pity, and the sage advice I received once that “when life gives you lemons, remember to lead your targets and follow through with your throws” seems a lot more appropriate. Regardless of your strategy, whatever works is good enough.

In OT today, I watched him actually ride a plastic rocking horse for the first time. He pushed back and forth a few times and leaned along with it some to build up a little momentum, too. For him to coordinate all of the motor functions needed to rock that thing on the floor by himself was quite an achievement. He even sat on one of those pushable riding toys and pushed it around in reverse using his feet. He hates those things, so again, this was a real achievement. It was only a few minutes of the day (though he did well in OT overall today too) but it has gotten me through most of it.

It’s not really despair or hopelessness by any stretch. I think it’s just sheer exhaustion with the gravity of knowing that we have a couple of very busy, very stressful months to go before it lets up much at all. I look at all the to-do lists for preparing for his IEP, all the people we need to contact, all the stuff we need to write up, all the day-to-day stuff we need to do, all the projects on my work lists, all the stuff that needs fixing or cleaning around the house, the weed-infested yard in front of our house, some green junk growing on our deck, all the lint stuck in the dryer exhaust which vents out from the roof, and God knows what else, and in the moment it all feels like too much. I notice a loose toilet paper roll holder and feel like sobbing. That’s just how it’s been.

It’s like getting to mile 17 of a marathon and realizing you just hit the wall, except you can’t just turn right, get in the car, and go home. Deciding not to run isn’t an option. In our area of the world, people often call it being ‘bone-tired’. That sounds about right.

If you go looking for it, some nugget of something will pop up and hopefully nudge you a while longer. I forget who it was, but someone once said something to the effect of, “We can only see in the dark with our headlights a few feet in front of us, but we can make the whole trip that way.” From some recess of my brain, that came up and bumped me along a little bit. I guess getting through the day is sometimes just about driving a couple of feet at a time.

Not long after, I read this quote in a book about typography of all things (it was an example in the book - no idea who said it): “Today’s mighty oak is just yesterday’s nut that held its ground.”

I guess sometimes feeling like a nut isn’t so bad. Good thing. I’d still prefer some other way.

We met with the county people yesterday to see if the J-man would “qualify” for the school-system-run preschool. We had to take the J-man with us in an un-napped state, because the ONLY slot they had available was at 3 PM. You know, right in the middle of rest time. Good times.

The people were nice and all, and they think the J-man is adorable (because he is) but seriously, the woman who took minutes? Has no business ever writing again. And she’s a teacher. Also, the coordinator may want to re-think her strategy of “sharing” her monitor with me because obviously “sharing” is “inconceivable.” (”You keep using that word. I do not think it means what you think it means.”) Sharing does not mean briefly flashing the screen towards me, and then choosing what you think is best without consulting me.

Today I had to send the coordinator an email giving her all the errors in the reports and minutes. She was NOT pleased with me, and kept insisting that something had happened yesterday, when it obviously had not. Really, why would I tell you that my child knows his numbers, when he doesn’t? It seems bizarre, since from what I understand, parents should make their child’s issues look as significant as possible to get the kind of support actually needed. *sigh* We went back and forth, and finally she said she would just attach my corrections to the bottom of the report (where they are oh so likely to be read *eyes rolling wildly*).

Not exactly the way I wanted to start our relationship.

In completely unrelated news, my boss’s wife is in the hospital today being induced with their newest child. Last I heard, he was tracking the contractions via a spreadsheet. I seriously work for a geek. But a nice geek.

Assuming you have good relationships with them - which to a person we’ve had with all of ours - your child’s therapists become your friends; they leave and you mourn. They bring you the one blessing you want as much as anything. They help your child take the one step at a time they need in order to grow into the fullest expression of themselves that they can.

J-Man’s developmental therapist is moving away this week. Her last day is tomorrow. She’s worked with him for about 15 months now - almost half his life, and far longer than anyone else. When she started, he would become immediately frustrated and upset when you tried to get him to do most anything. Stacking two blocks together or putting a big plastic coin in an even bigger slot looked like asking him to climb Everest. Even being near an open container of Play-Doh would make him gag. Touching fingerpaint would make his little sensory system go into red alert. He had at best a handful of random, unclear words. If an activity took more than two seconds, he couldn’t sit still for it or complete it. It’s hard to realize that when we started working together, he also couldn’t walk on his own. And it would be some time before he did. He had only very recently started sleeping through the night at that point. We were worried, exhausted, and growing more distraught by the day. It was a very hard time.

I see how he still struggles, and every day I grapple at least some with keeping perspective and staying positive. With her leaving, it’s made me look back and see just how far he has come. She was there when we had no idea what was going on, she’s seen us through his autism diagnosis, and she’s given us the tools and resources to know where to go next. She’s given us a wealth of information on how to set up his new home classroom and a home program to complement everything else he’s doing. Over the span of the last few months, she’s poured out so much of what she knows into us. We’ve learned more than I imagined possible, and we have a plan. I hope I’ve been a good student.

She has given us something words cannot describe, but those of you who have been through this know exactly what it is.

In a couple of months, we’ll also say goodbye to his other preschool teachers and therapists as we move into the county school system. Her departure starts this season of transition and mourning that we won’t get to see these people every week who have meant so much to us. I’ll feel this way a lot over the summer as we keep saying goodbye. They have all been so wonderful to us. It’s impossible to adequately express our gratitude to them. They’ve kept us upbeat when we were struggling. They love every kid who walks in their doors and steadfastly refuse to give up on anybody. If they ever wonder how much their work matters in the grand scheme of things, they need only to ask people like me.

I’ve realized that this isn’t a sprint or race; it’s a marathon relay. It’s the kindness and commitment of these once-strangers who have seen us through this far. It is because of them that we have hope in the people we have not yet met and things that we have not yet seen.

Whether they are developmental, occupational, speech, physical, or another other kind of therapist, the ones who enter our lives and offer their hands, heads, and hearts to people like us are often unsung superheroes.

They are worth their weight in gold, and probably get paid their weight in recyclable plastic.

They are reimbursed for gas at about the same rate as pizza delivery people - except they can’t take tips.

They are energetic Macgyvers, making limitless supplies of therapy aids out of egg cartons and dollar-store junk. They don’t even need duct tape, though give them a laminator and they can rule the world.

They will stand on their heads if need be. They will come up with stuff that boggles the mind.

They see our son achieve his latest miracle, and they cry, too.

They’ve never grown up, and we love them for it.

They can turn animal crackers into an epic story.

They know how to work an inscrutable health care and insurance system to get what your child needs.

They will hold your hand and believe, even on the days you can’t. They know when to talk and when to stay silent.

They believe every child has a bright future. They don’t give up. They love each and every child just because. No one needs to prove anything to them first, and no one needs to earn their love.

They work for sticky hugs and don’t complain about the rest.

They still deserve more money.

As families come and go and as they themselves move from place to place, they often don’t get to see who ‘their children’ become. In many cases, at age 3 many of those kids move on. I hope that at 13, 23, or anywhere in between or beyond that I’ll be able to send them a story or two about the kind of person J-Man grows up to be - better yet that he will be able to write to them - and to say thank you for everything. They are as much responsible for the progress he has made as they are for all the things he will yet discover how to do.

Thanks, Meg. We owe you. May the dollar stores always have what you need for your magic therapy kits, and may all your days be blessed.

I found these words in a journal I was writing in almost three years ago, before J-Man was born. What it would be like for the me-of-then and the me-of-now to meet given everything that has happened! And what would the me-of-then think of how many layers of meaning there were to his words that he couldn’t possibly have known about then?

These entries are excerpts from those journals and are addressed to our son. (Don’t worry, this isn’t going to go over the whole 40 weeks!)

——————–

(written a few days after Mary got her positive pregnancy test)

It was only a week ago that we found out that you were going to become a part of our life. We have been stunned most of the time ever since. Becoming a parent for the first time, especially when you are over 30 like us, is hard to comprehend. For me, it’s the sense that I won’t be a good father and that I won’t be all you need me to be. Maybe by the time you read this, I will have proved more to you than that.

There’s always the fear at the beginning that things will not go according to plan. It happens to a lot of people. We tried very hard to prepare the way for you to come into the world and have wished so hard that it would come true. As I often do, it’s also a time for a lot of anxiety wondering whether something will go wrong. Writing my thoughts down here perhaps is a way to make it seem more real, but mostly as an expression of faith that I know now that you will come safely into the world and into our lives.

(when Mary was about seven weeks)

Next week comes the first exciting doctor’s visit. Using some Doppler ultrasound device I don’t remotely understand, we should be able to see your heart beat for the first time. At eight weeks, such a thing astonishes me, especially because the pictures in the book say you probably look like a very tiny, wriggly, alien-shaped entity attached to an oversized head. I’ll still think you look great regardless of the pictures.

Sometimes during this process of waiting, I wish I could dump everything I know through your cord and into your head. Not book knowledge really, but experience and hopefully some wisdom. I imagine, though, that there are a lot of things we’ll just have to learn together. I’ll apologize in advance if I’m overprotective or obsessive about helping you learn how to be and live in the world. It can oftentimes be a scary place. I know you’ll figure it out though.

(after the first ultrasound at eight weeks)

In the first eight weeks, you know that you are going to be parents and feel excited about it, but it’s still so hard to believe you are actually coming. Seeing and hearing your heartbeat brought it all home in this one overwhelming moment. Someday when you are in the same place, you will know what it feels like.

We will always remember this day because your heart lit up in front of us for the first time and our love for you was so strong that in that moment I could not imagine being able to love you more; but I know I will. It has been that way with your mom. On our wedding day, I looked into her eyes and knew all the way down to the very core of my soul that I loved her far beyond any love I had ever felt. I could not imagine loving her more than I did then, but it happened anyway. The great thing about love is that there is room for everybody, and it never has to know any limits.

(about nine weeks - right after our Snow Storm From Hell that year, and strangely symbolic of things to come)

Someday someone may mention this storm to you and you can tell them this story about how I left one part of town at 1:00 PM and didn’t get home until 9:00, over what should have been a 20-minute drive. I feel a strange sense of accomplishment for beating the odds and getting home. Maybe the moral of story for you is, use common sense but stick with it and work your way out of whatever is in front of you. Determination mixed with some good common sense is a valuable gift to have.

(after the 11-week ultrasound - don’t worry, last entry)

To see you today with a very identifiable head and face, your torso, and little arms and legs was amazing. How far you have come in only three weeks!

You were pumping those little legs like you were trying to run around in there. Your heart is strong and you are starting to stretch your legs out to come into this great big world. Keep doing your dance. Grow strong.

[Back to the present day - Three weeks is still a long time in your world even now. And how I love to see you dance.]

——————

If you’ll humor me a bit longer, this is a little poem I wrote about what it feels like for me to watch J-man grow up so much each day. I wrote it well over a year ago, but it still fits me. It expressed both my joy for all the memories I have of him when he was really little, and the grief that comes when you box up your child’s baby stuff. You have to admit to yourself that they’re growing up. It all goes by so quickly.

As I read this poem now, I think how much of my fear of not being a good dad has been boxed away now, too. Experience is a great teacher, but my son may be the best teacher of all. When I wrote it, I never imagined we’d be where we are now. I’ve realized how many of my old ways and habits that brought a lot of negativity and fear have gone away either because I put them away intentionally or because they seemed to have worn out on their own.

That doesn’t remotely mean I’m all ‘with it’ now. What a joke that would be. It just means that this is a good sign I’m learning something - something I never would have learned without being the father of this wonderful little boy. You are the best Father’s Day gift I could ever hope for.

Outgrowing

I put new griefs into boxes
reminding myself to store them
somewhere away from the old.

There’s the little, white onesie with
	the tiny, yellow ducks,
the sleeper with I Love Daddy on it,
the little footie socks you wore last winter,
the blue hat with the doggie ears
	that you refused to keep on,
the red and white-striped jumper you wore
	your first time at the beach,
the soft, cream-white sleeper you wore in the hospital
	against your jaundiced skin.
It was the only newborn outfit you ever wore;
we had to stuff you into it for pictures.

You’ve outgrown these blankets that swaddled you
while I plowed furrows in the carpet
during your walking naps.
They go in with the hooded towels,
especially the one with the teddy bear head
that covered your long, wet, hobbit hair.

You’d pull the hood over your face
waiting expectantly for us to find you;
we always would.

Someday I hope you get to pack away memories like this. 

I guess I should put away too my fear
of being a bumbling father.
We’ve done well together so far.

I tell myself, it’s OK to outgrow things.

Thanks for reading.

The J-man has a new and exciting talent - the ability to say a whole phrase. That phrase? “My name is ‘J-man’!”

It goes like this:
Mama: My
J-man: muh-muh
J-man: na-na
Mama: name
J-man: i-i
Mama: is
J-man: na-na!
Mama: ‘J-man’!

[We assume you know that neither 'na-na' nor 'J-Man' is his name, and in both instances he and Mary got his name right. ]

He’s getting so big, and it seems like it’s all of a sudden. We had to switch to Good Nites instead of the Huggies Overnights because he outgrew the size 5s in what seemed like a week. He’s wearing “big boy shoes” every day now, and thankfully the Preschoolians came in, because the other shoes were getting harder and harder to put on. He’s VERY clear about what food/drink he wants now, and will go over and BANG on the picture if he thinks you are ignoring him. Tonight was the best stair-climbing he’s ever done, with very little leaning on me.

In terms of communication, it seems like a lightbulb went on over his head. Now he gets that if he makes the sound, he gets what he’s asking for. He’s so proud of himself - now he runs around and bangs on his belly and yells.

My little boy is growing up, right before my eyes.

I originally wasn’t going to weigh in on the recent, reprehensible treatment of Alex Barton by his kindergarten teacher in St. Lucie County, FL because it’s been written and blogged about at length all over the Web. I didn’t really know what I could add to it. But prominent bloggers who write about issues related to autistic children are calling for all who stand with Alex and his mother, Melissa Barton, to post their thoughts and show solidarity both with them and autistic children everywhere.

To briefly catch you up if you missed this, Alex Barton is a five-year-old boy on the autistic spectrum who - I can’t believe I’m writing this - was voted out of his kindergarten classroom after his teacher, Wendy Portillo, polled the class about whether they wanted him removed from class for the day. The class voted for him to leave by a count of 14-2. I wish I was talking about some alternate, bizarro, Survivor-esque universe, but I’m not.

[To catch up on the latest news, here's an article from the Palm Beach Post. There's a great post at Asperger Square 8 that you also must read.]

For what my thoughts are worth, here they are.

One of my biggest fears for J-Man is that other kids will regularly bully him in school just because he is ‘different’. Honestly, I fully expect it, and the hurt I already feel is terrible. He most likely will start preschool in our county’s autistic children’s program this fall. I confess my breathing gets shallower just writing about that. This will be a major transition for him, obviously, and I don’t need the fear of bullies making that worse. But that will be something I’ll have to deal with.

When I read that afterwards Alex kept repeating “I’m not special,” my heart broke. I tried to imagine J-Man sitting in the floor repeating those three words over and over again. I couldn’t. It hurt more than I could bear. Even writing this hurts. I can’t imagine being Melissa Barton right now.

As parents, we need to know that we can count on our children’s teachers, and for the most part, I believe we can. J-Man has had excellent teachers and therapists so far, and we are thankful every day for them. We need to know that people at our schools will be there to help our kids be the best they can be and serve as a voice that counters bullies and other people who might belittle them. We need to know we can count on them to treat our children as special and uniquely wonderful, not fear having to count them among the bullies.

Regardless of what anyone believes about children inherently wanting to rebel against their parents and adults in general, adults still have an incalculably powerful influence on them. When an authority figure teaches children, especially at that age, that excluding people who are ‘different’ from the community is OK, what do you think they are learning? What do you think that will translate into as these kids progress through school and into adult life? What kind of future are we creating as a result?

In a world overflowing with messages to exclude and reject those we do not like, those who are different, and those who ‘make us’ feel uncomfortable, there must be voices that proclaim the inherent and immeasurable worth in each person. We must be those voices.

Every kid needs the authority figures in their lives to accept them where they are. That doesn’t mean we’re not supposed to set boundaries and have rules and expectations. We start with a fundamental acceptance of the truth that every child, regardless of their abilities, has infinite worth. That is the foundation we must build everything else off of.

There are truths in our society that are self-evident and inviolable. We don’t get to put these things up for a psuedo-democratic vote. You don’t get to decide Alex’s or anyone else’s innate worth as a person and member of our society. That kind of world shouldn’t be allowed outside your TV. If you watch that kind of junk and take it seriously as something to emulate in your ‘real’ life, it’s time to go bury your TV.

In case I haven’t made my point clear yet - You don’t get to extinguish his light or anyone else’s. Period.

Shaming like this just leads to greater and deeper shame, creating this endless, horrible, destructive cycle. Kids who have special needs will get enough shaming in their lifetimes to make our hearts ache every day, if not every hour or minute. They need to know we’re sticking up for them.

They need to know that the people who love and value them simply for who they are will be ready and able to champion them no matter what. They need to know that our voices are stronger than those who either through intention or ignorance would tear them down. I hope in some way that my words will help him know this. And I hope every day that I will have the courage of strength and conviction to stand for them, no matter whose children they are.

There are lines you simply do not cross, and in this act, this teacher crossed it. As parents, we must hold that line without compromise against anyone who willfully or ignorantly breaches it. We are the first and last line of defense for our children. If not us, then who will?

What do I think should happen to Ms. Portillo? Schools have zero tolerance policies toward students, and I think teachers should have similar expectations and consequences for such egregious actions. She may just have been poorly trained and made a ridiculous error in judgment. I don’t know. And at the moment, I’m having a hard time caring about the difference between intent and poor decision-making.

Regardless, I think termination of her employment and suspension of her teaching license would be the minimum I would ever accept as a parent. If she finds some way to show by her actions that she has earned the trust needed to be a teacher again, then I believe in reconciliation, but I imagine that will be a long time coming. But my advice to her would be, don’t be surprised if many people neither forgive nor forget. You just don’t mess with our kids, and we won’t take ignorance as an excuse.

I try hard to find something to build from in every situation, no matter how awful the whole thing seems. Here’s what I found to hold on to from all this.

I’m heartened by the overwhelming support and action that has flowed forth from parents and bloggers of every kind from every corner. The world of autism has many factions, many controversies, and much disagreement, but mess with our kids and we will act as one voice. Our children are more important than our differences, and this has reminded us of that.

In the Internet age, we are serving notice. Acts such as these will find the light of day. We will make sure of it. We are watching and listening. We aren’t some tribal council; we are the entire village. We have spoken, we are speaking, and we will continue to speak until our children are treated with respect and dignity.

Given the challenges we face every day, we do not give up easily (or at all) and we have developed incredible endurance. We’ve had to. Autism is an endurance event. It requires all of who we are. We’ve learned that this is what it takes to help our children grow and thrive. And we recommit ourselves to it every day, by both necessity and by choice.

I wish my son didn’t have to work so hard at everything, but he does and does so bravely. He inspires me every day. If I can love him through his challenges by the sheer force of my will, I will. I celebrate him just for who he is. He has become my teacher. Maybe when this teacher decides to become the student for a while and learn what all this means, she will understand what all the Alexes of the world have to offer us.

Also, two kids - for whatever reason - voted against this abominable act. It’s been 30 years since I was in kindergarten, but I don’t recall going against your peers being any more popular then as it probably isn’t now. I don’t know their motivations, reasoning, or feelings about their choice, but I applaud them regardless. My hope for them is that their light of compassion, decency, and their sense of right and wrong is such that no teacher, adult, or peer can ever take that away from them.

I close with two messages.

To Melissa Barton - There’s nothing I can really say that could possibly relieve you of what you have to carry right now, but I will say this. We’ve got your back. You are not alone.

To Alex Barton - You are wonderful and special and perfect just the way you are. You are unique in all the world. Don’t let anyone ever tell you otherwise. Let your light shine. Let it shine, let it shine, let it shine!

You know those days where there are some rotten times (like when the person who was supposed to be helping me closed all my browser windows remotely, even though I had one open to the exact place she ended up going back to, and then saying, “Yeah, this isn’t what I do. You have to call someone else.”), and then there are sweet times?

This is about the sweet times.

The J-man still has this nasty cough, and it seems to get worse when he tries to go to sleep (maybe because of positioning or something), so he really hasn’t slept a lot. He was so tired today before his nap - he essentially snuggled up on Pepaw until I went downstairs for lunch, then snuggled between us for a bit before Pepaw carried him upstairs for his nap. It was lovely and quiet in the nursery, and I nodded off several times, and the J-man was just about out, but he MADE SURE to kiss me before I put him down.

Then, when he couldn’t sleep from the coughing and got upset, Tim went in and rocked him for a very long time. No sleep, but some rest snuggled against Daddy.

Every time I’ve been near the J-man today, he has wanted a hug, or a kiss, or to hold my hand, or something. I could eat him with a spoon if it wasn’t illegal in this state. He smells better than the chocolate/caramel dessert I had yesterday (which I DID in fact eat with a spoon - could possibly be illegal here considering some of NC’s stupid laws). Even when he’s refusing to follow any of our instructions, or being noodle boy, or even when he smacked me with the remote today (on accident people!… uh… person) - he’s still yummy enough to chew on.

As I’m writing this, Mary and I are sitting in the Seattle airport waiting for our red-eye flight to George Bush Houston-tinental Whatever Airport, where we’re be long enough to eat and pee and get on the plane to our real destination - home.

Well, our REAL destination is wherever J-Man is. Her parents are bringing him to meet us at the airport when we arrive, about nine hours from when I’m writing this. We’ve missed him terribly over the past three days - to put it mildly - even though I’ve felt less mental about it than I thought I would.

Every child under age five we’ve seen has reminded us of him. (Mary just ‘awww-ed’ at a child going by us at the gate…) It’s been hard seeing other parents with their kids out traveling, but we’ve gotten through it well enough. Besides, there’s no way in this world he would have lasted more than a few minutes on a plane.

We’ve called home a couple of times a day to check in on J-Man, who - according to Grammy - has done swimmingly well. So either, 1) he’s been doing swimmingly well, or 2) she’s trying to reassure us while he’s swinging from the furniture and frothing from the mouth. For the sake of our own sanity, we’ll assume it’s the former until proven otherwise.

We had a great time at The Wedding - Part Deux, even though it was downright tropical by Seattle standards (upper 80s) and no one here has air conditioning. Luckily, we wore guayaberas for the wedding, which are worn in tropical climates for an important reason - they are loose, breathable, and very comfy when it’s hot. The happy, twice-united couple should be off in Hawaii by now drinking in the sun, sand, and alcohol. Meanwhile, we have a lot of laundry to do when we get home.

We had fun visiting with Mary’s best friend’s family, too. We all went to high school together, frighteningly enough. Special thanks to their kids for de-aging us a few years by getting everyone in the Ford Focus POS rental to headbang to whatever was playing on their scary phones while I was also trying to dodge dead Raccoons-of-Unusual-Size roadkill and follow their mom to the pizza place. They should also get bonus points for attempting to teach me how to play Guitar Hero, which by the way seems to have set off a wave of arthritis in me after failing badly at playing Metallica. My dork score was off the scale there.

I think the lesson here is that it really is good to get away and get a break for a few days. Mary and I have enjoyed being together as just us, crappy plane seats and all. I’ve missed us just being an ‘us’.

We’re probably idiots for flying overnight back to Charlotte and then driving three hours home instead of going 45 minutes to Mary’s parents’ house, sleeping, and trying it again tomorrow, but we just want to get home. I want to sleep in my own bed for once. It’s been nearly a week. Most of all, we just want to see our kid. Of course, we’ll probably go bat-crazy when he see him and be so full of adrenaline and parenting chemicals that it’ll fuel us all the way home.

More trip post-mortem-ering when we get home. (Gee thanks, Alex. Have some Chap Stick. )

We’ll be back to normal programming soon, I hope.

Greetings from 30,000 feet above the East Coast of the US! I don’t know whether there’s a Mile High Blogging Club, but let’s not go there.

I’m on my way home from Boston and the wedding of my best friend - second only to the person I’m married to, of course. I was best man in the wedding. What a great ceremony it was, filled with wonderful people who celebrated like few weddings I’ve ever been to. The outpouring of support was moving, and I especially appreciated the free rides that liberated me from the ridiculous tolls and travails around Boston’s airport, plus a futon to crash on!

It was a bilingual service (English and Spanish), and of course being the lame American that I am, I don’t know Spanish at all. One thing I learned is that there are those moments when you don’t need to know a language to understand the power of the meaning behind them. When my best friend’s now mother-in-law put a double lasso rosary necklace (el lazo - not so great pictures of it here) - a family heirloom of great significance - around their necks to join them together, I had no idea what she was saying, but I knew it was beautiful. I could see the pride and the blessing in her eyes.

Of course, all weddings remind me of ours. It was good to be reminded of what we felt like then and how far we have come since. That’s a mighty long way, baby!

After six hours of sleep over the past two days, I am borderline incoherent, though I’m sure many people think I’m usually that way. Two mornings in a row getting up before 4:00AM has been a bit rough. We’ll be off to Seattle and The Wedding - Part II tomorrow morning. With family and friends spread out all over the country, I suppose no one can have just one wedding anymore.

The Boston trip was a solo for me, but Mary and I are going to Seattle together. The hardest part of all this isn’t the lack of sleep - a few lattes, some sugar, and various other jolting chemicals can artificially keep you awake long enough - it’s traveling without J-Man.

There’s no way on earth he could have handled the wild travel hours, the plane ride and having to stay in a seat that long, the air pressure changes in flight, the noise and the people, and (not) sleeping in strange places. I don’t like flying either so I can imagine what it would be like for him.

(Currently, I’m cruising six miles up in a metallic paper towel roll with wings that was constructed entirely by people under four feet tall…I could just see him in here…)

So after I limp back into the house today, I’m going to shower, eat, dump out the Boston pile from the suitcase and replace it with the Seattle pile, then we’re driving to Charlotte to Mary’s parents’ house. We’re going to leave J-Man with them, fly from Charlotte to Seattle in the morning, then return overnight Sunday night on the red-eye. If we actually come through all that with some measure of alertness and our blood latte level is high enough, we’ll meet her parents and J-Man at the airport, transfer the car seat and luggage, and drive the 3 1/2 hours back home. I may sleep for a month after that.

He’s in good hands with the ‘outlaws’ (just kidding!) as Mary’s parents are hard-wired for grandkid spoilage and do their jobs incredibly well. Lord knows what they’ll have gotten him by the time we come home!

Still, it’s so hard to leave him. I was talking with one of the moms at the wedding and she told me about her - now adult - special needs son. We talked about how hard it is to be with your child most every hour of every day and work so intensely with him and then have to switch all that completely off when you leave for a few days. It feels to me like throwing a speeding car suddenly into reverse.

I saw other toddlers at the wedding and felt terribly homesick. I only last saw him about 36 hours ago, but I couldn’t help but look at his pictures and watch a little bit of a home movie on my iPod on the plane.

When I called home last night to tell him goodnight, I sang him Old MacDonald (one of our new favorites), he pitifully said ‘oh-oh’ after I did “e-i-e-i”, and Mary said he stuck his bottom lip out after that and started crying. She also said he wandered over to my side of the bed and patted it, looking around for me. Let me tell you just how hard that is. Well, some of you probably already know.

We all need breaks, but I also feel like part of me is missing. It’s like leaving home without your car keys, wallet, phone, shoes, and half your clothes, only ten times stronger. After the intense, day-to-day life at home, I realize I don’t know how to switch it off.

I say I worry about how he’ll handle all the normal away-from-home anxiety he has without us around. We’ve never tried it before. In all likelihood, that’s my way of making an excuse for my own feelings. I’ve gone mental about leaving him and my worry about how he’ll handle it is just a good excuse. I’m just going to be one of those parents, and I’m alright with that. It’s a learning curve, that’s all.

Since typing in this tin can of a plane is like trying to line dance in a closet, it’s time to wrap this up. Expect a “holy crap, I miss my kid!” post at some point on the next leg of the journey. Otherwise, we’ll be quiet for a few more days.

All that said, we’ll have even more joyous celebrating to do in Seattle and I expect that will fill us again with a renewed sense of who we are as husband and wife as well as daddy and mommy. Given the stress of recent weeks, that may be exactly the best possible thing for us right now.

“I love you just as you are. I accept you as a blessing from God. I join with you today to be the partner of all my days, to be the mother of our children, to be the companion of my house; we shall keep together what share of trouble and sorrow our lives may lay upon us, and we shall hold together our store of goodness and plenty and love.

When our way becomes difficult, I promise to stand by you and uplift you, so that through our union we can accomplish more than we could alone. I promise to honor and care for you, to speak the truth to you in love, and to cherish and encourage your own fulfillment through all the changes of our lives. I will stand beside you in joy or in sorrow, in ease and in conflict, putting the commitment we make today above any obstacle that we may face.

This is my solemn vow.”

These are the vows I made to my wife almost six years ago.

In the midst of all the strains of all the effort all of us put forth for our children, reminding yourself of the vows you made to your spouse can help you reclaim some perspective - on this day in particular for me. We can give so much to our children and all the day-to-day administrivia of our lives that everything turns into effort. It’s easy to lose track of joy.

When you’re ear-deep in evaluations, preschool planning, therapies, preschools, research, reading, phone calls and e-mails, work, home therapies and activities, and God-knows-what-else, and then you lack enough sleep and energy to make sense of even half of it, it’s easy to assume marriage will just work itself out along the way.

This is not a healthy assumption. There’s a reason why the divorce rate for people with special needs children are so high. It’s very hard, very consuming work, and it’s easy to lose track of your relationship in the middle of it. This is one of the essential parts of Mother’s Day they tend to forget on the cards.

Today, I give eternal thanks that I was able to marry my best friend in all the world to be the mother of our perfect little boy, and that together we have been given all the gifts and joys he brings to our life together.

I give even more thanks for the joy she brought to my life before he was born, and how that joy has multiplied each day since.

When I see her hold him, I get goose-bumps - every time. I see him kiss her and I know everything is right with the world.

I would also be remiss if I did not celebrate the fact that 2 1/2 years ago, this Wonder Woman gave birth ‘the old-fashioned way’ to a 9 lb 4 oz, 21 1/2″ long, 99.99th percentile head-sized boy. After he was out, she did everything but jump on the table and flex her biceps. I’m still in awe.

Today I commit to work harder to not be an ass so much of the time.

Today I vow to do a better job remembering that we are literally three-in-one, that you are the partner of all my days, the mother of our children, the companion of my house. I will stand beside you in joy or in sorrow, in ease and in conflict, putting the commitment we make today and every day above any obstacle that we may face.

This is my solemn vow.

The Holland Tourism Board would like a word with you…

If you’ve ‘gone public’ with having a special needs child for about this side of 37 minutes, odds are stellar that someone has sent you the “Welcome to Holland” poem by Emily Perl Kingsley. For the uninitiated, click that link and go read it. I’ll wait.

While it’s not as controversial a topic among parents as say vaccines, you’ll still get a wide range of reactions and emotions about it, and those may change drastically depending on the mood they’re in at any given moment.

Regardless of what I say next, most people who have sent it to us have done so out of concern and love for us. To them I say, I appreciate you more than you know, and I hope you’ll understand that the emotions of parents of autistic children are complex, varied, and wild. And we get more honest about that as time goes on.

At first I hated that poem. Then I felt like I got it. Then I felt like the poet was a bad parent and I cursed her name to the darkness (I was bitter then - duh). Then I kinda got it again. Now I have a completely different reaction to it:

What the hell did Holland do to deserve this?

I’ve never been to Holland or Italy, and beyond one having the Pope’s house in the middle of it and the other having a higher population of blond women, I don’t know what the primary pros and cons are. I have no clue why the plane full of all the special needs kids and families got rerouted to Holland, except perhaps the flight attendants thought the screaming indicated a potential terrorist threat.

Luckily, I’m not alone in this wondering. A funny reply came in the form of “Holland Schmolland” by Laura Krueger Crawford. Apparently a cottage industry of these things is popping up.

Then I found “Welcome to Beirut,” by Susan F. Rzucidlo, which is utterly brilliant. It’s got me wanting to write my own.

In the end, I only have one reaction to the Holland poem, and I think this one is here to stay. Neither Italy nor Holland nor all the countries in the world combined can hold a candle to our son.

Our house can range from idyllic to insane, but I wouldn’t trade it for anything. Not even all the artwork in Italy together could impress me more than what my son struggles to create with crayons and computer paper. The art on our walls at home is the symbol of all the hard work he’s put into overcoming his challenges. He is our masterpiece.

Rzucidlo lasers in on one of the biggest truths I’ve learned so far when she says, “You will know sorrow like few others and yet you will know joy above joy.” We celebrate every little step, no matter how small. We give thanks to all those parents who’ve gone ahead of us and given us roads to follow. We feel affirmed by those parents who see us go to tears when he says a new word and know why. We rejoice for the gifts given to us by skilled, committed, kind-hearted therapists who work for pay far less than the weight-in-gold salaries they deserve.

We have very high highs and really low lows, but between that vast expanse, we see all the little details of the world. I sit and stare at the sky because he does. I discover microscopic pieces of dirt in the carpet just because he does. I wonder what all I would miss if he didn’t show them to me.

One more thing I’ve learned - There are a lot of good and kind people in this world, and we’ve only just begun to meet them. We wish our son didn’t have to struggle like he does, but he is accepting it with bravery and grace and determination. We can do no less.

While I’m trying not to act like the above title (10 points if you know where it’s from. 20 if you sing it!), it’s a little glum around the ol’ Flashlight house these days. We’re still trying to work our way through the stages of grief everyone talks about – and I’m stuck in the anger/despair part.

Really, why does this have to be so hard? I, like all parents, want my child to have an easier life than I have had. I want him to have the good things from my life: to grow up loving to learn, go to college because it’s just what we do, find a wonderful partner like I have, and have beautiful children that I can spoil someday. It reminds me of that line from Steel Magnolias where Julia Roberts’s character says, “I want to sit on the front porch, covered in grandchildren, and say ‘No,’ and ‘Stop that.’” I want him to skip the bad things…

Instead, his life will be immeasurably harder than mine. He will have to work harder at EVERYTHING than I had to. Everything (ok, except peeing while standing up, which I still can’t do unless in the shower… it’s OK, I’m the one who cleans the bathroom).

This changes our lives for the long term. It changes our plans for ourselves (second baby? Moving to the mountains someday?) and our plans for him (doctor? Lawyer? POTUS!?).

Interestingly enough, it doesn’t change our lives for the short term. J-man will still have the same therapies he had before, since he was already in developmental, occupational, and speech therapies. He will still attend the special preschool. He will still pull us to the back door to go out and swing every day. He will still continue to delight us with his smiles and giggles and sense of mischief. He will still be the wonderful boy we know. He will not know the difference that 3 letters can make.

We will though.

In its own way, it seems fitting that today is Good Friday. There are symbols and themes that go along with this day that speak to how I feel about everything going on with us.

People either skip over Good Friday on the way to Easter or don’t bother to contemplate what that Friday was really like before anyone ever knew there would be an Easter.

It’s not about what will happen but what has happened and what that feels like right now.

Good Friday is about believing that things have turned out in the worst way you could imagine. It’s about once having all of this hope and then feeling like everything fell apart. It’s about being told it would happen and not believing it until you saw it with your own eyes. It’s about people’s entire view of the world and their role in it one day abruptly ending, left instead to wander aimlessly and reinvent your life. It’s about believing you were promised one thing and then having it taken from you. It’s about feeling you’re going to be shunned from this day on by society. It’s about believing from now on, you’re on your own.

It’s about the story not ending like it’s supposed to.

I think most of theology can be summed up in one word - ‘but’. I’m a writer, so I tend to see things through the lens of language. Today, I see God as the Great Conjunction.

I once believed our lives would follow a certain path, but instead a different one lies before us.

On that first Good Friday, everything fell apart, but the sun came up that Saturday, and then that Sunday, and then that Monday, and every day since.

One of the most powerful forms of speech in the Bible (depending on the version you read) goes like this: “You have heard it said that… but I say unto you…” Things will be transformed, but we’re not there yet. I’m still carrying around a lot of anger.

Good Friday is about being in the moment before the ‘but’, long before there is any hope that it will come. I may be stuck on Friday for a while.

I completely broke down Wednesday when I was giving J-Man a hug and said “I-IIIIIII… Looooooooooove” and then he gave me a kiss. I barely got the “you” out before I choked on tears.

I believe J-Man will be a living example of how to put things back together again. As frustrated as he gets, I know his stubborn, determined streak. If there is a way, he will find it. Right now I’m having a hard time believing in much, but I know I believe in him. And for now, that is enough.

If he could talk, I could see him saying, “You may say that there will be things I can’t do, but I’ll have something else to say about that.”

I had a rough night last night. It was one of those cumulative sort of episodes where you stockpile stress and worry and get to the point where you have to empty some of what’s in that bucket to get to the next day. I’m sure that means I need to focus on better ways to deal with that.

Part of this is not paying enough attention to all the positives that happen every day. So before our big appointment today, let me tell you one.

Yesterday, he ate a mouthful of a peanut butter and jelly sandwich.

This may sound utterly trivial to a lot of parents, but this is the equivalent of me orbiting the earth without a spaceship. There are a number of textures in a PB&J that normally make him gag (the literal, retching kind). He didn’t look terribly excited by what he ate, but he chewed it and swallowed it - no taking it out of his mouth and handing it back to us in a panic.

He earns every triumph, and every one is cause for celebration. I needed to be reminded of that yesterday.