An Open Letter

To the people I've encountered, family, friends and acquaintances, in conversation and in passing, in my home, my office, my world:

I'm sorry.

In the past 8 years, I have slowly changed. I have cried and wept and screamed, I have felt pain so acute I didn't see how I'd survive. I have worried and fretted and obsessed, wasting unknown quantities of time in darkness and ugliness of spirit. And I have continued to justify such actions because of "the bad things that have happened that are out of my control." It's my party line, my platform, my modus operandi. Any amount of bitterness, jealousy, envy, and depression was covered, because of "the bad things..."

What follows are messages to various people in my life - raw and personal but necessary. Some of them will be read by the addressee, some won't. All are confessions from a soul weary of toting the burdens. And this is long. Very very long, so be warned.

REALLY long.

To my son Stephen:

I have hung the lion's share of my unhappiness on your precious shoulders, and it is despicable of me. You are innocent and dependent on our care, and to make you and your autism "the reason" I've become who I am is deplorable and for that, my sweet one, I am sorry. You looked at me this morning as I helped you get in the car, and I felt the warmth of your expression as a stab into my heart. You trust me and I have used your plight as a reason to stay miserable.

To my husband, David:

I've used you, too, to justify my unhappiness. We've certainly had our share of struggles, as everyone does, but lately you have made real steps forward and I have dragged my heels, and my burdens, as I slog through life.

To my son Kerry:

I have not given you the best of myself, not consistently. Not only have I burdened you with my worrisome nature, but I have set a bad example at times. My bitterness, my cattiness (I'll explain that later) and my generally morose self do not a sweet and loving mother make. I have talked big, and expected your best in school, in football, in life - and I have stumbled and most certainly not walked the walk, as they say.

To my friends:

I have allowed ugliness and the general unfairness of life (see above: those "bad things") to become a constant shadow over my spirit. I have not reached out in love, or recognized that my pain, while understandable, is not the only pain that exists. How shallow and nasty and hurtful I've been, assuming that no one cared. How blind I've been to the many small kindnesses over the years. I have cowered in my corner and turned my back on you, and there is simply no excusing it.

To my mother:

You have been a constant and real source of comfort to me over the years, in more ways than I can count. But I'm afraid you also enabled me to continue feeling sorry for myself by being a willing participant in my regular pity parties. For all the love you have, you also have a problem with self-confidence and esteem...and so do I - what a pair we make, mutually enabling each other to continue to use these things as crutches, and going in circles, never moving forward.

To the people I encounter during the workday:

This one, this "letter," if you will, is really a tough one, and it sticks in my craw big-time. This particular group seems a clear-cut and logical beneficiary of my vitriol. There truly are "good" reasons to close myself off during a workday, to keep myself encased, to avoid all contact - I have not learned the art of appropriate boundaries, you see, and with me it seems to be that I either: a) bare my soul on an hourly basis, weeping over my pain and expecting you to comfort me or, b) stay closed and cold and suspicious, certain that everyone around me is plotting my doom. I'm starting to suspect that there's a middle ground...

To other people in general, at Wal-Mart, Target, the neighborhood pool or grocery store:

I can only imagine what my face must convey as I move among you on a daily basis. Do you feel the hate radiating from me? The sociopathic disgust? How dare you smile, be happy, be in love, have normal children, have plenty of money, be in shape, dress nicely and take pride in your appearance? Don't you know that you should all be in sackcloth and ashes, lamenting the dire straits of my existence? I have looked at you with envy and anger, because you've clearly appropriated MY life, and I want it back. You exercise, you care for yourself, you take time to fix your hair and present a pleasant face to the world...and I resent your confidence, your posture, your happiness. I have snarked and laughed sardonically at what I observe - "I can't BELIEVE she's WEARING that." I have refused to look inside you to the persons you are...the majority of you are people of value and good will and honesty. I have painted you all with a broad brush. I have used my own mean measuring stick and found you all to be sorely lacking.

How sad. How absolutely, incredibly sad that I have repeatedly looked outside myself, and made such shallow and ridiculous observations - often aloud, in front of an impressionable young son. I am ashamed. My face burns with the utter shame of using the people around me to further my own sad agenda. The victim of all those "bad things" can't be expected to be HAPPY, for God's sake! To smile? Come on. To look at the wealth of positive things that she has accomplished. To be the person she used to be...funny, witty, loving, compassionate, accepting of others' flaws, secure in the knowledge that every single person has them...

The fever of this humiliation burns so strongly.

You see, I have had problems with self-esteem for as long as I can remember. As a five year old, taking an entrance exam for a private school, I worried that I wasn't smart enough. At FIVE. I remember it. I remember the anxiety I felt, worried that I wouldn't measure up. My parents were told later that I made one of the highest scores the school had ever seen.

It didn't get better. Because of the unique shape of my eyes and the comments they elicited as I grew up, I began to realize that I didn't like being "different." I began to interpret comments remarking on my uniqueness as comments about my unfortunate and hideous ugliness. I never stood on my own, proud to be my own person, proud of who I was. I wanted to blend in, to be like everyone else, and I missed an amazing opportunity to forge a character to be proud of...and the irony of this is not lost on me as I try to teach my own son to stand on his own, to be proud of who he is, to never bow to the pressure to be just like everyone else. Again with the big talk, no walk.

Because I have lived most of the 38 years of my existence in a constant effort to do:

*What is expected.
*What is necessary.
*What is "normal."
*Whatever doesn't rock the boat.

I was so busy doing those that I forgot to do what I WANTED to do in the appropriate areas of life. I was accepted into an Honors English program as a freshman in college. I walked into the classroom on the first day (and it's etched in my brain: I wore khaki shorts, my one real Ralph Lauren polo, and, I kid you not, penny loafers) and sat down at a table with about 5 other smarty-pants freshmen...and I immediately decided I was in the wrong place. These people looked...different. They looked like they were comfortable in their own skins. The professor walked in and asked us to do an off-the-cuff essay...and I choked. I couldn't do it. I walked out, dropped the class, and went on to a "regular" English comp class, with "regular" students - and I excelled. I impressed my professors both terms with my writing. But the expectations were lower, so I was okay. Didn't want to stretch too far - that can be dangerous, because what if you make a mistake?

Everyone knows that the world very nearly comes to an end when I make a mistake. So, again, be warned.

So life continued on, as I exerted much effort, did really well with most of my classes, starting aiming toward a career in interior design - until I decided I didn't like the business aspect of that, and right about then, I met a young man. We worked together on campus and one day he took notice of me...we began to date and it was really a lot of fun. Right about this time, my school dissatisfaction was in high gear, and I changed my major to biology. Like David's. Because I thought that I should choose a career that MATTERED. You know, being smart and all, I should do something really snazzy. Like go to med school...

Oh, I could go on and on with how I tricked myself, how I truly believed I was following my heart - with the 20/20 vision of hindsight, I was only trying to impress everyone in my life and convince myself that I mattered.

And years and decades have raced by. I am a mother, a wife, an employee...all my "masks" for everyday life. Each them hides a tiny, pitiful soul who never learned to value her self, her soul, her unique spirit...that pathetically undernourished little thing cowers in a dark corner, its cries for attention echoing through the hard shell that wears the masks. That shell, layer upon layer, constructed over a lifetime...partly out of a need to develop a thicker skin, and yes, not to hinge all my self-worth on what others think...but its growth ramped up alarmingly and now, here I sit, trapped in this hardness of my own making.

If you've made it to this point, bless your heart. This manifesto, this "true confession" is heartbreakingly late, and carries tinges of adolescent angst - and coming from a 38 year old, that's kind of weird. But I have to start where I am, and this is it. Today I'm feeling the acute pain of having a mirror held up, and staring myself square in the eye...and oh dear, it hurts. It stings to start prying away a thin layer of the shell...I'm tentative and unsure. I hardly know where to begin.

I won't put the mirror down, though. As painful as it is, I must look at things, really look at them, and stop hiding behind the "bad things." I must accept that what I have done is grow so bitter, so cynical, so entrenched in negativity, that I couldn't even recognize the upward trends, the things that are good and true and noble.

Forgive me.

Another Pleasant Valley Sunday

If God is real, and is in any way interested in my well-being, then I don’t GET him at all.

I got disillusioned with religion years ago due to various things – too many questions I couldn’t answer, feeling like I was somehow missing something, and mostly because of autism. I mean, what kind of loving God lets autism happen and babies get cancer and children be brutalized and killed, sometimes at the hands of their own parents? And if he doesn’t LET it happen, it just happens, then how is he all-powerful? But even with all that, either because of habit or fear, or some inner need I couldn’t articulate, I never could let go completely of the IDEA of God.

At times I was happy to wash my hands of church – no more rushing around on Sunday morning, more time to get stuff done that I couldn’t seem to get done during the week – not going to church seemed a wise choice, a mature decision. Other times I missed it – I missed the warm feeling of community, the hymns, the peace, the wisdom I gained. Especially at Christmas I used to long for those feelings again. But by and large, I let it go.

This is the South, though. Besides football and church, what else is there that gathers somewhat like-minded people together? What other ties bind us in community? Not much that I’ve found. So, I pondered. Years passed, and I visited a church here and there. I found that I could no longer sit through a sermon that taught, for example, that I was to be a good girl and be submissive to my husband. Ummm…no. Not to mention that my husband would have a big problem with that, having long ago told me I had a good mind and I should use it. Kudos to David for always, without question, assuring me that thinking for myself is not only a good thing, it is essential to becoming a whole person.

I digress.

After years of wandering and pondering, my dear friend Rebecca invited us to her church, where they are beginning a program geared toward families with special needs kids. It’s an Episcopal church, and though I have darkened its doors only a handful of times, it feels peaceful and…holy…to me. Set apart. I still have all the same questions and doubts (if not more) but, if I step back and just EXIST, it feels wonderful to be in that little church, reciting creeds and being given the Eucharist.

I don’t know WHY it soothes me, but I thought, why question it? Just soak it in, a brief respite, an island of peace in the turbulent river of the week. I don’t have to answer all the theological questions. I can just…BE. Stephen has been happy enough downstairs in the nursery, watching DVDs. In fact, he started asking two days ago, on Friday, for church. I led him to his weekly schedule in the hall, and showed him that the next day was Saturday, then, "Sunday – church!" "Church," he intoned, with a smile. Well all right then! Now we’re getting somewhere.

Until this morning. He began asking for Zaxby’s, and I told him (as per our usual Sunday routine) that we’d go to church, then we needed to go by Publix (admittedly not part of the Sunday routine but a familiar place that we often frequent), and then…Zaxby’s!

"No no no no no."

"But, we’ll put on shoes and go to church! Church! Fun!"

"Bye-bye."

"Yes, we’ll go bye-bye in just a little bit."

"Zaxby’s."

"Church, Publix, Zaxby’s, home."

"No no no no no."

I fixed his portable schedule up with those four pictures, only to be told no again. And again.

Damn it! I should’ve known not to get so smug and self-satisfied. The kid who asked repeatedly for church now wouldn’t even get dressed to go. He cried as I was getting dressed – I thought, Fine, I’ll go…but no, it was way too early, and I didn’t want to aimlessly drive around. When he’s like this, nothing will calm him besides seeing me leave – because then, in his mind, at some point I’ll return with the desired food in hand, and that’s all he cared about today. I don’t know what the difference is. I don’t know why today, he balked. All my plans, compromised…again.

I don’t know what next Sunday will bring. Maybe this was a fluke. All I know is, the irony of FINALLY finding a place I feel comfortable, and perhaps even a little of that peace that passeth understanding, only to have Stephen throw a wrench into it all is more than I can take. I thought God helped with stuff like this? I finally ease out of my backsliding ways and show my face in a religious institution – I’m no longer throwing out desperate pleas for some higher power to help me, without setting aside time to at least be still – and this is the result? Maybe it’s the wine I’ve had at Communion. God must be a teetotaling Baptist and I have displeased him.

I was too upset to go to church anyway. I’m still too unsure of myself to go there, and possibly cry through the whole service. Instead I cried on the way to Publix, in the parking lot, and on the way to Zaxby’s. I’m quite proud that I didn’t push my cart up and down the aisles sobbing. I think that shows real restraint, don’t you? I mean, yes, I did completely ignore all the helpful Publix employees who said, "How are you today, ma’am?" I didn’t think it would appropriate to say, "Well, I’m completely distraught, on the verge of tears, and don’t know what to do next. Will you hug me while I sob? Thanks."

Sometimes, the pain welling up is so immense, I feel like I’m going to burst. The choices laid out in front of me are usually just differing degrees of yuck. What does the future hold? Eternal discord, living on the edge of a precipice – or placing Stephen outside our home only to worry about his safety endlessly? I discard both but have nothing to replace them.

We are increasing Stephen’s Risperdal in hopes that it will help to calm him – but it won’t suddenly make him understand abstract concepts, or gain the ability to reason or to understand reasoning.

Today I feel like God, whoever or whatever that might mean, is looking down at me saying, "Gee. Sucks to be you, huh?"

Yeah. Today it does.

Autism hurts

Autism hurts.

Autism hurts my innocent child, who had no control over what happened to his brain and body. I have no idea why he cries sometimes, why he pounds his head or wants "Pushes, please." It torments me not to know what is going on.

Autism hurts my family. The chaos, the storms of emotion and anger and screaming and tension...they make us tight and sore and exhausted. We walk around shell-shocked after a bad time with Stephen. We don't get invited out...you know, to be with people. I think we scare them. We're still a family, even if we're not like yours.

Autism hurts ME. I carry around the weight of uncertainty for the future, apprehension for the present, and anger over what has been robbed from me. I held this baby in my arms, loving him from the instant I saw him (and before) and imagining his future, tagging along after his big brother. Those dreams, though dashed long ago, persist. They won't go away. I see other siblings and my heart aches with an indescribable longing to just FIX things, damn it. I am bitter and jealous and cynical, and I detest those qualities in myself. Why can't this get better? Why?

Of course there are moments - times to catch my breath, to laugh with Stephen, to lose myself in a hug from him, his hair smelling of shampoo - but there's always the dread of when the next problem will arise. Don't tell me that I can't live like that, that I should be more positive...I try, believe me, but history proves me right on this. Fact: You relax too long and you get kicked in the teeth - sometimes literally.

There are more things to worry about than there are hours in the day. His diet remains horrible. Carbs, carbs, and carbs, with a side of carbs. His belly is huge and distended - he is plagued with horrible gas (and pains, I'm quite sure). He does take a vitamin, but come on...the kid hasn't eaten a vegetable in years. Potty training remains a pipe dream. And, damn Walgreens to the fiery pits of hell, they CHANGED the sleep pants that fit him so well, and were soft and comfy and stretchy. Now they're different. New and improved, my ass. They're rough, brittle, half as stretchy - they rip when we're trying to put them on him. I wrote the company, I complained, I bitched...I was asked to submit "before and after" samples, so I did. And nothing. No response. I was buying $150 of these things a month! We're using the Rite Aid counterpart to these, but they are only marginally better. And the smallest adult diapers are too long for him - they come up to his armpits and don't fit around the legs... These and other issues keep my gut clenched in an iron fist.

I'm tired of it. Tired of it all. Tired of coming home not knowing how he's going to be. Tired of constant struggles to fund respite care, to buy diapers, to have a life. Tired of looking at my child, wondering what he would've been like without this damned disorder. Tired of listening to people complain about their "hard to manage" kids, and having the gall to say to me, "Yeah, I know - being a parent is hard." Oh, give me a break. If you can TALK to your kid, and he talks back, he pees and poops in the toilet, and you can live your life without constantly planning every minute, then shut the hell up.

I know this is coming across badly.

(Everyone has issues, you say. Everybody has problems and pain and disappointment, you tell me, as you pat my arm. Don't act like it couldn't be worse...it could be, you murmur, and put your arm around my shoulders. Yes, but...this chronic, daylong, nightlong, yearlong, lifelong sorrow drains me...I feel my lifeforce ebbing away.)

At times I feel I can't bear up under it all anymore. I've lost patience with people who spout platitudes and never back them up with action. I'm sick to death of worrying about what the future holds for a boy who will never be able to care for himself. I'm tired of hurting...for me, for my family, for Stephen. God love him, he has no idea what autism is...the world must be bewildering to him at times. Sometimes we marvel that he is manageable at all - and yes, at times, he IS. But then, there are the other times...last night he asked me for "chicken" at least 25 times. His stomach was stuffed, and we HAD no chicken anyway. If we HAD chicken, he might eat two bites. But every time I said, "Chicken all gone," he cried, the cries escalating each time in volume and intensity. I couldn't eat my own dinner because I had to sit on the couch and push on his head for 20 minutes - trying to calm him down.

Lately I've found myself sitting, staring at the computer screen or out the window, with no recollection of how long I've been doing that. I'm more forgetful than ever. Common sense, something I've long sought after, is laughing at me as it speeds ahead productively. I feel like I'm slogging through some sort of thick, syrupy substance, feet dragging, heart pounding at the effort. How does one persist? What choices do we make about the future when none are acceptable? How do we do it?

I don't know.

All of my plans, compromised...

My heart races almost all the time. My mouth is dry. My hands shake way too much. I jump out of my seat when the phone rings. All this can mean only one thing.

It's summertime.

School has been out now for one week, and it has been one of the worst weeks in a long time...we are all exhausted from the strain of trying to get Stephen through the incredibly hard (and unfair!) transition of his beloved school days into days of endless "free" time. The poor kid...

And poor us, too. The phrase I coined (or at least I think I did), "chronic sorrow," has been ever-present on my mind lately. [nope - upon researching, it turns out that: "Chronic Sorrow is a term coined by sociologist Simon Olshanshy to describe the long-term reaction of parents who have a child with a disability." So I guess I READ it.] Over and over my heart breaks, even when I'm pretty sure there are no intact pieces left. David, Kerry and I have that perpetual look of strain, Stephen's wires are so sensitive to change that he is not very fun to be around, and sometimes it's hard to see a positive side to much of anything.

Except...there are some positives, if I shuck off my shroud of cynicism (say that five times fast) just for a moment or two. We're in a house now - let's not talk about the lack of a convenient pool right now, we're being POSITIVE. We have A/C that works like a charm - I'm remembering the days of last summer when we were living in a hellish sauna. Kerry is busy and has lots of plans for summer. He's grown and changed and matured, and is still absolutely the coolest kid I know. The fact that he is mine makes absolutely no difference here. (smile)

And, let's see...I've got a good job for which I am alternately grateful for and frustrated with, but again, the POSITIVE is my focus right now.

Okay, I can't do it anymore. It's just damned hard to do this, to live this life of constant stress and worry and unpredictability. Talk about waiting for the shoe to drop - we wait for the 2 ton crate of shoes to come crashing down. Even when things are calm, it's hard to relax, because all that can change in a split second...say, if a DVD that has been well-loved (read: lined up on the floor, used as a mirror for making funny faces while watching another DVD, scraped across the foot Stephen props up as he's watching) won't play anymore, or, will play, but one of the sidebar/bonus features/extra games parts of the menu won't work...or won't fast-forward at the speed desired, all hell breaks loose.

It may seem that I'm being overly tedious with my explanations here, but to understand our life you must understand the minutiae of caring for a kid like Stephen. When things don't work as his poor little mind expects them to - the internet acts fluky, or that obscure menu on "The Trumpet of the Swan" DVD doesn't respond, or you don't take him to McDonald's RIGHT NOW - you are likely to be subjected to screeching that would put the Jurassic Park velociraptors to shame, and, sometimes, a hearty tug of your locks, if your hair is long enough to grab...or endless endless endless endless (get the picture?) repetition... "Friesburgerdonaldshungry..." ad nauseum, until you want to hop in your fighter plane and bomb every single fast food franchise in a 20 mile radius...

Well, I can dream.

So in the midst of all this, I have to head out to work - leaving David or my mother to deal with the LOOOOONG days of this transition time of summer. It's a tough gig, and I imagine nobody really envies them the job. Everything requires planning, and it's just tiring to body and soul. I confess, with pre-emptive apologies to friends who may read this, that I am nearly eaten up with jealousy toward people whose lives are "normal" - people who can take impromptu trips to the beach, or impromptu trips anywhere, for that matter; people who don't have to make sure they've created a picture symbol just so they can go by a store they've never been to before; people to whom summer is a time of vacation, freedom, days spent in lazy leisure activity.

I envy people who can explain to their children things like:

"That DVD is broken because you haven't taken care of it."

"We can't get a hamburger at 6:45 a.m."

"School is out - you have a break until August!" (Saints preserve us...)

"Honey, you cut your toe on that poolside chair...let Mama clean it and put on a band-aid." I have to stop and note this particular scenario for posterity. On our first trip to the pool that we found to join, Stephen bumped his toe as we were leaving. I didn't know he was cut, because he didn't whimper or anything. No, I noticed it only when I realized one of us was leaving a bloody footprint, and it wasn't me. I grabbed a paper towel and tried to look at his foot, but to no avail. I managed to wrap a piece around his toe and put his shoe on for the trip home. We got home and Stephen kicked off his shoes and climbed straight into our bed...in between one of my two "good" sets of 100% cotton sheets...

His toe bled. Boy, did it bleed. It wasn't a deep cut, just "skinned," as my mother would say. But here's the kicker - every time it quit? He scratched at it. He'd stick his foot up toward me and say, "Tickles please" which basically meant..."Fix this mom - but use your magical healing powers because you ain't gettin' near me with that scary looking bandaid, and you can FORGET putting some antiseptic or liquid bandage on..."

Again, a tedious explanation, but it was at that point that I mentally and emotionally shattered a bit more. I can't wrap the kid in a bubble - he's going to get cuts and scrapes, and I can't even do Basic Mom First Aid. It's a helpless feeling. I sat and watched spots appear on my pale green sheets as he wriggled around, pausing occasionally to give his toe a big scratch, all the while he's saying, "Noooo, noo...nossir." Because that's what I say in an attempt to get him to stop doing something he shouldn't...and you can see how well it's working.

At one point later on, I caught him off-guard, crawled under the table where he was watching a DVD, and managed to finesse a tiny bandaid in between two small toes...all the while smiling and patting him. HA! He stopped abruptly, gave me a glare, stuck his foot in my face, and said, "No no no no..." and started tugging. "Oh, sweetie, it'll help your boo-boo!"

"NO NO NO NO NOOOOOOOOOOOOOOOOOOO!" in crescendo.

Bandaid removed. Blood on the kitchen floor. It finally stopped and I've snuck bandages on after he was asleep at night. Maybe he'll let it heal. Maybe.

It goes against my very nature to be unable to help, to fix things. I'm a fixer. I'm a nurturer, sometimes to a fault. Sometimes I need to learn to step back and just listen...but at times like the cut toe incident, or a thousand other "little" things, just to be able to communicate, to kiss and make better, to comfort, would make all the difference in the world.

And so the maelstrom of my emotions whirls out of control much of the time. I am as nervous and jumpy as the proverbial cat in the room full of rocking chairs, and it affects everything...work, home, the sad state of my wannabe-artist/writer soul, my ability to smile, to live, to love... I become comatose at night, sleeping deeply and waking early with my mind going double-time immediately upon becoming conscious. I don't know what the future holds, and damn it, it drives me batty (battier). I love my son and am completely and utterly frustrated by his disorder simultaneously. I am grateful for what I've got, and pissed off at what I don't have, all at the same time. I know it could be worse...but then, there are the dark, dark moments of my soul when it's really hard to see that it could be worse, in fact it feels like the very worst it could be, just then. I have tasted, over and over, the bitterness of life. It's a taste that stays with me, never quite going away in spite of the joys and sweetnesses I certainly experience. There are people in my life who love me and I'm grateful for them, more grateful than can be expressed here. But oh...the autism! It pervades all, it entwines itself into every waking moment, it rules our world and I hate it with an intense passion I would have once thought impossible to feel.

I look into the mysterious moss green eyes of my son - eyes that rarely contain the spark of connection, eyes that dance with humor I don't understand, eyes that cry at unknown fears, eyes that see things I cannot see or comprehend - and I am overcome with protectiveness, with disappointment, with fear, with joy. It's a complicated mix and one thing can never be separated from the other. I have been bombarded over the years with opinions of certain pundits of the autism world who think that I do my son a disservice by not "accepting" his autism as part of who he is. Well, yes, I suppose that there is a level of acceptance, or really, resignation - if by that you mean knowing this isn't going away anytime soon or being in denial - but acceptance in some sense of gladly welcoming his autism? No way in hell. I've said many times that if hacking off my right arm with a rusty pocketknife would cure autism, I would do it. Dramatic? Yes, certainly, but that is the level to which I do NOT accept autism and will fight against its insidious effects until I have no more strength.

Hopefully in the next week or so we will start to incorporate some summer services and outings for Stephen, and will hope with all our might that he accepts these as part of a routine. I must plan out these months as carefully as if I worked for the Pentagon and lives depended on said plans...really, they do. The future hangs out there, taunting me with a singsongy "I know something you don't know"...and the uncertainty of it could drive me completely over the edge if I let it. For now, I'll think about today, and this weekend, and next week...and hope against hope that we can overpower the horrors of summertime+autism.

It is not a good combination.

*The title of this post is borrowed from the song "Arriving Somewhere But Not Here" by Porcupine Tree. An excerpt of lyrics:

All my designs, simplified
And all of my plans, compromised
All of my dreams, sacrificed

Ever had the feeling you've been here before?
Drinking down the poison the way you were taught
Every thought from here on in your life begins
And all you knew was wrong?

It's a great song found on PT's Deadwing album, if you're interested.

Stephen is ten

Today, Stephen is ten years old.

We have "officially" known about his autism for just under 8 years now. I've mentioned here before that in some ways, he's doing better than I expected he would: sight-reading, doing pretend play (which is supposed to be "impossible" for kids with autism), and he's quite social and playful most of the time. In other ways, though, the chronic sorrow deepens as the years go by - his total lack of comprehension of using the potty; his inexplicable (but rare) outbursts; his inability to understand most abstract concepts...

We had his birthday party yesterday, and as soon as he saw that I had hung up a sign with his picture on it that said, "Happy Birthday Stephen!" he looked at me and said, "Open?" This concept he DID understand. :-) He has no understanding of age or the passage of this decade of his life, but he had a good time opening his dozen or so new DVDs, surrounded by a loving extended family, and last night while I was grocery shopping, he and his dad put together the Lego Buzz Lightyear figure that David found. This is a new and exciting bit of territory that we hope to explore. David said that Stephen was very interested in the process, and that he consistently matched up pieces to the diagrams in the instruction book, but his lack of fine motor skills made it hard to snap tiny Legos together. Still - it's an encouraging sign and a possible new area of interest, which is always good.

In the life in general category, we've had a pretty good stretch over the last few months, which is probably evidenced by the lack of new blog entries. I do always try to mark the anniversary of Stephen's birth though - it's a good time to reflect.

Stephen has instinctively been calmer since we moved into our house in August - of course, going back to school always helps, but in general he's been happier in our new digs. It's well-documented (don't ask me for sources, I just KNOW) that peaceful, calm surroundings have a positive psychological effect. Stephen can vouch for that, as can the rest of us.

Having recently watched the excellent HBO movie "Temple Grandin," David and I have been talking about how Stephen seems to have something more going on than just autism. Yes, he displays many classic "signs" of autism, but he lacks some significant ones: he seems to have few if any real sensory issues - he loves human contact for the most part. He also started pretending a few years ago, which is very unusual in the hyper-logical mind of many autistics. We know that he has mental retardation - and it hasn't gotten any easier for me to type that. He's ten and is still very enamoured with preschool themes. My dad said something yesterday about how Stephen might be very intelligent but can't communicate it...I had to gently disagree. No super-intelligent child, however limited in communication skills, still adores Blue's Clues, Dora, et al. It's just something we accept as part of who Stephen is.

One thing that I've learned from watching the Temple Grandin movie, and from David's sharing of some things he's been reading in TG's book Thinking in Pictures, is that Stephen's echolalia is his way of double-checking on something he's heard. I find that quite a revelation in and of itself. Also, in the movie, Temple zeroed in on a bit of dialogue from a TV show ("The Man from U.N.C.L.E.") and repeated it over and over, laughing uproariously. The words weren't funny, per se: "Would you like for me to open the gate?" delivered in a lilting tone. But Temple found them very funny. Stephen does that kind of thing ALL the time. It's one of the more charming aspects of his autism, those belly-laughs that don't really make sense, but hey - when is laughter bad?

So, happy tenth birthday to my little man. He showed up in our lives in a moment of surprise and in a hurry - and he keeps us on our toes to this day. He is a precious piece of humanity, given into our hands for safekeeping, and he depends on us utterly. It is a large burden to carry, but we are determined to keep him safe and happy and growing in his own way.