(Dis)belief

I’m confused, and I hope writing this will help me figure out what I’m feeling.

Yesterday my mom told me about the accidental drowning death of the two year old son of a local radio personality. Any time a child dies, it’s heartbreaking…and even though I’m not a fan of the radio show the guy hosts (with a sidekick, of course) I spent several minutes thinking about how devastated the family had to be. Apparently the little boy slipped away from his siblings and went outside while his mom was in the shower, and drowned in the family pool. The dad (the radio host) was out of town and had to fly in after he heard the terrible news.

Now, when this radio duo first started their show here in Birmingham, I listened to them. They were down to earth and funny – at least to me at that time. I was probably 25 or so, and that was B. A. (before autism). Eventually the show became more popular and was syndicated in quite a few southeastern states, and, as a result, it also became more gimmicky and just plain stupid – bumper stickers galore and silly on-air games. The show popped around from one local station to another, and occasionally I’d see a commercial on TV, but mostly it dropped from my radar screen completely. I heard enough scuttlebutt to know that the two guys hosting the show had become very vocal about their Christian faith.

Which brings me to this morning.

I was curious about what format the radio show had taken this week – the little boy died on Saturday night – so I tuned in this morning as I drove to work. The first thing I heard was the dad’s voice, and I was surprised since I figured he’d take a long break after this tragedy. After a few minutes I realized that what I was hearing was pre-recorded; after a few more it became obvious that the father was in fact speaking (preaching) at his own son’s memorial service. The family attends one of the largest churches here in the Birmingham area, and I have no doubt that the service was attended by hundreds if not thousands. I listened in utter shock as this man who had lost his tiny baby boy a mere five days earlier preached and pontificated as enthusiastically as Oral Roberts or a sweat-bathed Jimmy Swaggart. This man’s son is DEAD…gone, vanished from his life, and he was not only in perfect control of his emotions, but able to preach as authentic a Southern Baptist sermon as I’ve ever heard. I listened for the inevitable and I wasn’t disappointed. To paraphrase him: “Now, some of you have asked me how I can stand here and do this, and to you I say that I can’t. But He [God] can. I am weak but He is strong.”

Okay. This is familiar territory to me. I was born and raised a Southern Baptist, and up until about 6 years ago was still very active in that life. I know that people of strong faith are meant to call upon it during the hard times, and to draw strength from it…and you know what? That still makes sense to me. Find a place, a storehouse of peace, and draw from it when you feel down or burdened. In my mind that does not, however, translate to preaching a sermon over the tiny body of your precious son. Where's the screaming and wailing? Your soul shredded and broken as you wonder how you're ever going to BREATHE again?

In short I was horrified, sickened…frightened by this man’s words. I have often observed to David as we sit watching the latest tragi-drama on CNN that people seem incredibly capable of appearing in the spotlight mere hours after losing a loved one. They stand there calmly, sometimes even smiling, while Anderson “Aren’t I handsome yet caring and serious” Cooper asks them inane questions like “So how are you feeling now that your [son/daughter/spouse] has [disappeared/been killed/been trapped in a coal mine]?” I got that same sense of surreal disbelief as the radio guy pounded the pulpit, demanding to know if people in attendance could handle what had just happened to his family…asking if they were “prepared” to give up what they loved most, since that’s what God did for us. He smoothly rolled out the platitudes about someday seeing his son again, and how there were certainly still “times for weeping” ahead – but he reiterated again and again that he was going to be fine, and that he knew that God meant for him to renew his commitment to sharing the Gospel, and to inspire others to do the same. Again, paraphrasing him: “On that plane as I was coming home, God told me that He wanted people to look at me, at my circle of family and friends, and wonder HOW we could go on and rejoice in this…He wants people to be amazed… If God had sat me down and asked me to give up my son, I couldn’t have done it. So He had to take him.”

WHAT?!!????

All I could think about was how I would feel if I lost one of my sons…all I could imagine was the grief that countless parents have felt at losing a child, and how utter despair would be the only reaction in my soul…it was sickening to hear this man basically telling me that if I’m unwilling to give up a child, or unable to immediately bounce back after a tragic loss that I’m not as good a person as he. If I lost one of my boys, I can’t predict how long I would be paralyzed by grief, and would do nothing but huddle in the fetal position in a corner. I couldn’t speak to anyone…or eat, or sleep. And he's OKAY with this? He's rolling with the holy punches?

I’m not saying this man didn’t love his son. I’m not even so far gone as to say that I don’t believe in a heaven, of some sort. You people trying to label me as an atheist…back away! I’m not even ready to admit to being agnostic yet. I’m just…confused. There, much better. Anyway…I DO understand the desire to know that people we love who die aren’t gone forever. I have lost beloved family members whom I have tucked away in my heart, and want to believe that they are “up there” and at peace. That comforts me, and that seems to me to be an appropriate but eventual place to come to after the other stages of grief have passed. About the only spiritual matter I can say I’ve come to believe for sure is that whatever religion we choose (or don’t choose) should be a source of comfort and protection…not something to be used to beat people over the head – especially if they don’t seem to respond to tragedy in the “right” way!

Now, more than ever, these words mean a lot to me.

We hold beliefs as a consolation
A way to take us out of ourselves
Meditation, or medication
A comfort, or a promised reward

Sometimes the spirit is too strong
Or the flesh is too weak
Sometimes the need is just too great
For the solace we seek
The suit of shining armor
Becomes a keen and bloody sword
(N. Peart)

Believing in something higher than ourselves – it can be a consolation. That may mean different things to different people, but that’s okay. Taking comfort when possible, peace from prayer or meditation, believing that our spiritual selves somehow live on after we die…I can accept those things without crimping or confusing my soul too terribly much. But how true is it that sometimes the “need is just too great”? Being told that God “allowed” Stephen to have autism, or that He “chose” us because He knew we could handle it? Sorry. That need is just too great, and there’s no solace in those thoughts for me.

The bottom line is ultimately this: I don’t understand it all. I don’t get how it’s all supposed to work, or even IF it’s all supposed to work. I know that there’s a part of me that feels moved by the great overwhelming peace of nature, or by beautiful music, or by a child’s face. I want to believe in something…a comfort? Maybe. A reward? Who knows. A suit of armor…to protect, to hold me up if I can’t stand on my own? Sometimes.

Today I heard a man proclaim that God took the life of his two year old son to teach him to be a better Christian. That “keen and bloody sword” kind of faith is frightening to me…and in my most humble opinion isn’t what spiritual life is about. Not even close.

The Calm

Stephen and I have been early risers for the last week or so...but today (a holiday!) he slept till almost 8 a.m. I feel like I could run a mile! Or at least a few yards.

More than getting a decent night's sleep, the 25 minutes I spent with Stephen this morning have calmed my soul and given me a bank of good feelings to draw on over the next week. I heard him get up and go down the hall to the living room, so I went to see what he was doing. He was on the couch, and so I took a chance and stretched out beside him. Sometimes he's receptive to that kind of closeness, but sometimes he's not.

Today, he was. He reached down and pulled a quilt over us as I put my arm around him. He snuggled close to me and I felt his tiny hand circle around me. He even patted my back briefly. So there we lay, two contented souls in the still-dim room, watching the sun begin to brighten the spaces between the vertical blinds.

After a few minutes I began to expect him to pop up, or push me away...but he didn't. He laid his head against me in that timeless "baby and mama" way. He lay so still I wondered if he could hear my heartbeat and felt comforted by it. Every so often he would tilt his face up to mine, pull my face toward his, and give me a "kiss" (smooshing his lips against my cheek). I concentrated on the little details that resonate so perfectly with a mother's heart: the smoothness of his hair against my cheek, the faint smell of shampoo, the tiny bump of his nose, just visible when I looked down at him, the seriousness of his dark green eyes as he looked deeply into mine. For those quiet moments, there was no autism, no stress, no sadness. Just one small pool of silence in what is almost sure to be a typically chaotic day, but it'll stay in my memory for a long, long time.

Twenty-five minutes out of twenty-four hours, but it was packed with meaning and love. We moved quickly from that idyllic state to a giggle and "To-as James competter?" (Thomas & James on the computer?) - just that quickly it was over and he was everyday Stephen again, doing his computer game and flapping away. That brings a smile too, but...it's a different one filled with a bit of sadness and resignation.

For now, though, I will look back on those early morning moments and treasure them. Their rarity makes them indescribably special - I got a glimpse inside Stephen and saw the boy without the shadow of autism. I feel humbled and very, very thankful.

DAN!, Neurodiversity, and Me

Warning: this one's LONG, folks. Lots to say today.

After being immersed in the world of autism for over five years now, I believe that I can divide that world into three rather distinct camps.

You have the DAN! folks, which we used to align ourselves with almost exclusively. If you haven't heard of it, DAN! stands for "Defeat Autism Now!" - and who doesn't want to do that? They even include an exclamation point because, hey...this is urgent! And of course it is. The sooner science can find some answers, the sooner these kids might have some chance at a full and meaningful life. In short, the DAN! folks focus on biomedical interventions: gluten-free/casein-free diets, vitamin and mineral supplements, chelation of heavy metals, and various other treatments designed to treat autism as a medical condition. You can find countless anecdotes from families who claim that their children have been completely cured of autism by using these methods. I am hopeful that those reports are true, and that these methods really are working for some kids. We spent a great deal of time, effort, and money to pursue various forms of testing and treatment along these lines, and did not see any appreciable change in Stephen. We did the diet (for over 3 months) and he got worse. We did testing for heavy metals (after months of struggling to get a urine sample) and we did chelate Stephen for lead. It's hard to tell if he became more verbal due to the chelation, or other behavioral therapies he was undergoing at the time. That's part of the problem with the DAN! folks - almost all kids are getting therapy at the same time they are undergoing biomedical treatments, and who's to say which is helping?

But, I digress.

So, you've got the DAN! group. Then you've got what I'd like to call the "middle-of-the-road-open-minded-but-intelligently-skeptical" group. Clever verbiage, no? That's where I'd place David and myself right now. Because of some things he uncovered while taking a histology course recently (both of us have biology degrees, just to provide some history) we now question the efficacy and accuracy of some of the biomedical interventions. So, while we still firmly believe that we want to investigate every possible avenue, we are less than impressed with the DAN! protocols at this point. I want to deal with this particular journey separately, and will do that another time.

Meanwhile, we find ourselves in that "middle" group...hoping always for new medical breakthroughs but doing our best to use good judgment, and more importantly, not expecting a miraculous cure because we feed Stephen crushed violets while he stands on one foot under a full moon. The DAN! protocols may not be quite that outlandish, but sometimes it feels pretty close.

That brings me to the newest camp - at least for THIS parent: the group of people who vehemently insist that autism is a NATURAL phenomenon, and that it is something to be celebrated...a place where joy can be found...autism isn't a disability, or a disease, or a problem. It just creates NEURODIVERSITY.

Now, before I get into this too far, let me make a couple of things crystal clear: there isn't a day that goes by that we don't experience some happiness, or even joy, with Stephen. Is it BECAUSE he has autism that we have those positive moments? No...emphatically no. We find those things IN SPITE OF his autism. Secondly, autism has become such a widespread, umbrella term for a mind boggling array of "spectrum disorders" that I wish the people in charge of such matters (whomever that might be) would change the classifications. My son's autism is classic in nature. He flaps his hands, he does not have conversations, he wears a diaper, he tantrums for often unknown reasons. There are kids (and adults) with HFA (high-functioning autism) and AS (Aspergers Syndrome) that live very functional lives, often with some idiosyncrasies or unique and different behaviors, but functional nonetheless. If people who live with HFA/AS want to consider themselves as adding to the neurodiversity of the world, I am happy and thrilled for them. They should enjoy their lives to the fullest and print up T-shirts that say, "I have HFA and I'm neurodiverse!"

But those same people, preaching the neurodiversity message, have absolutely no right to lump my son in with their "joy of autism" seminars, or their "autism is fun!" workshops. We don't belong there, and we refuse to sit back quietly and struggle to accept the ludicrous notion that Stephen's autism is something to celebrate and enjoy. Because, dear readers, let me tell you in no uncertain terms...THIS kind of autism is something to obliterate. It needs to be GONE from the face of the earth.

I have, I believe, been quite candid in describing some of the situations we have found ourselves in as far as Stephen's autism is concerned. In a moment, I'm going to completely take off the kid gloves...it may be uncomfortable to read, but there is a point here. First, let me share with you some quotes from and links to sites that wave the neurodiversity flag the highest. I have a bone to pick with some of these folks.

I have done a bit of skimming of a few sites that fall in this category...nothing that really got to me much. Until yesterday. I had five minutes to kill before I left the office, and I casually did a YouTube search for "autism." On the second page of results, I found a film entitled "Autism Every Day is a Doctored Film." http://www.youtube.com/watch?v=46LYd4Xe63Y Now, I have directed many friends and interested parties to the powerfully moving film "Autism Every Day," provided by the organization Autism Speaks, as a way of showing what life with an autistic child is really like. I wasn't able to watch the entire anti-AED film till later last night, but in reading the comments on YouTube I could see what the gist of it was. Here are a few quotes from the YouTuber's (christschool) description of his film:

"What Autism Speaks will offer you is hopelessness, pity, and research to find a cure for future generations of autistic people so we won't exist anymore. If you believe Autism Speaks will help your child right now, you are wrong."

"This video is strictly about how Autism Speaks funded a manipulated film and marketed it to the public for the sole purpose of stigmatizing autism and autistic children in order to raise funds for research that will eliminate autistic people. No other interpretation should be applied."

To the first quote I simply say...we are not trying to exterminate autistic people. We are trying to exterminate AUTISM. To think otherwise is delusional. I love and adore my son, but I want him to be cured.

And the second quote? The person who posted this film claims that the director, Lauren Thierry, instructed the families not to "do their hair, or vacuum" so as to emphasize the negative nature of life with a child with autism. This in itself is so silly I can't even begin to express it...as a parent who lives with autism, every day, I can tell you that there is no manipulation of the facts in this movie. There is no stigma here - our children didn't CHOOSE to be autistic. This is a disease with a cause (and someday a cure) and this film opens people's eyes, and promotes understanding.

Many people have commented on YouTube in support of this person's agenda; parents claiming that raising a child with autism is no different, or certainly not harder, than raising a neurotypical child. Some of the parents claim that since autism is a part of their child that they cannot hate autism - to do so would be hating the child! I could cry at the injustice of such statements.

The people reading these words - friends, family, people who know my heart - know how deeply and profoundly I adore Stephen, and how I thrill at every accomplishment, and celebrate each little victory. The negative comments I left for the YT guy were met with snide responses such as "You don't think your son deserves to be celebrated for his positive qualities?" or "Too bad you didn't take this chance to mention something good about your son..." This guy seems to be trying to take the attention away from what I'm saying. Maybe it's too painful for him (a self-proclaimed Aspie) to admit that I'm right. If he doesn't want to be cured, great. If he's happy with himself and his child whom he says has "classic" autism? Super. But don't tell me I'm a bad parent because I'm fighting against autism.

So here is where it gets ugly. Here is where I lay out the bare bones of living with a child with this detestable disease, for it can be called by no other name. I want someone who carries the banner of neurodiversity to tell me how living this way is to be celebrated and enjoyed.

My son stopped saying his precious baby words (gone-gone, bye-bye, Mama, Da-da) when he was about 15 months old. They went away. He withdrew into his own world, and left us. With great effort we have pulled him back, at least partway. But a part of him isn't here, and it may never come back. Isn't that fun?

I don't know what Stephen's favorite color is. I've never been able to tell him about the day he was born. I can't sit and reminisce with him about his toddler years and watch his face light up the way his big brother's does when I talk to him about his life. It's fabulous!

Stephen eats about six foods. I've never been able to bake cookies and give him a little taste, and watch his face light up because he likes them. We don't have family meals...Stephen eats when he gets hungry, and there's no other way around it - unless of course we want to enjoy tantrums at dinnertime. It is SO special!

Stephen wears diapers. He is almost eight years old. He is about four feet 6 inches tall, and weighs close to 90 pounds. He has no desire or understanding about using the toilet. He comes to tell us when he has pooped, and we lay him down like an infant to clean and re-diaper him. The people yammering on about how "Autism Every Day" doesn't preserve the childrens' dignity need to come over and watch as I wipe my son's little butt and put on his new Pull-Up. Now THAT is how you instill dignity in kids with autism. It's so...neurodiverse!!!

In his short life, Stephen has hurt others while having a tantrum - not in any way maliciously, but he can be aggressive, strong, and hurtful. I have had two bloody noses, assorted scratches that drew blood, kicks in the stomach that made me lose my breath, and a knee to the throat that had me spitting up blood. It's a laugh riot, let me tell you.

Stephen plays with preschool toys, and watches preschool videos. He should be chasing his big brother, and borrowing his Bionicles without permission, and wanting to be just like Kerry. Instead he is sweetly but almost pitifully attached to his baby toys. Joyful, isn't it?

Stephen often gets up at 3 in the morning, and one of us must get up with him so he doesn't get hurt or injured somehow. If we're lucky he's in a good mood at 3 a.m. If we're not, he's fussy and crying and loud. It's especially fulfilling when the downstairs neighbor comes up to complain about the early morning noise. We just giggle and say, "Don't be silly! It's neurodiversity time!" And the constant state of sleep deprivation I find myself in? Pah! It builds character. Who needs sleep? It's way overrated.

Stephen sometimes gets hurt, like any other child. If I'm fortunate, I witness the bumping of the head, or the stubbing of the toe, and I can try to offer comfort if he will accept it. Sometimes, though, he cries and sobs, and I don't know why. I could ask him till I'm blue in the face, and he will only cry more. I can't ask my son if his tummy hurts, or if his throat is sore. He can't tell me, you see. But, that only makes life more interesting, no? It's like being a detective. Yay!

My beautiful, gorgeous son can't tell me if he had a bad dream. He doesn't tell me he loves me unless he's prompted. Barring a cure being found SOON, he will never have a girlfriend, go to the prom, play a sport, go to college, get married, or have children. It's...beautiful?

Forgive what I know is an overuse of sarcasm. But I am so angry. This is the real deal. This is autism. This is what I hate and detest and deal with EVERY SINGLE DAY. I'm not saying this is everyone's story. I'm thankful that it's not. But this is OUR story - and the story of countless other families dealing with "classic" autism. Autism has made it impossible for us to do even the simplest things as a family. We don't know what it's like to casually decide to go the park. We don't get to go on vacation as a family. We don't get to have a relaxing dinner out as a family. Not ever. We deal with these issues on a daily, sometimes hourly basis...and we get tired. We get hopeless. We fall into despair when these issues build up and build up over the course of a day, or an evening.

That is why the film "Autism Every Day" is therapeutic for me. I need to know that I'm not the only one. There is real comfort and strength in the bond of shared experiences. One point from the film that has been criticized to the nth degree is when one mom says that she has been to the edge...she felt like she wanted to put her daughter in the car and drive them both off a bridge.

The anti-realists decrying the film gasp! How HORRIBLE! This woman is clearly a would-be murderer!

Give me a break. I know parents of typical kids who have wanted to throw them out a window after a trying day. Do they do it? No. A huge majority of people express their frustrations (healthily) and move on, resolving to be better parents. Multiply these frustrations a hundred fold, and you get what it's like to be the parent of an autistic child on a bad day. Of COURSE you walk to the edge of that deep, dark hole. Of COURSE you want to give up. Of COURSE you think that life is one long series of hopeless disappointments. But then, as I've expressed in this blog, your child smiles...and the despair recedes...for the moment. The idea of condemning this mom (and the filmmaker) for expressing this honest, raw feeling makes me sick. Unfortunately there HAVE been tragic ends to the lives of some poor babies with autism (and for a great many more innocent babies who DON'T) - but that does not mean that every parent who tiptoes to the outer edge of desolation and hopelessness is to be condemned for merely expressing those feelings. On the contrary: getting those feelings OUT is a key to survival, and to being able to continue on.

So tell me. Where's the joy of autism? Parents who want to believe that autism is present from birth (christschool again) are more than welcome to enjoy the "benefits" of autism in their families. Quirky behaviors, non-potty-trained children, what have you...live it up, people! But know that you are deluding yourselves. Do you think that if you admit that autism is a DISEASE that your children suddenly don't matter? That they don't count? Nothing could be further from the truth. My child counts as any other child - and as such he deserves a full life, and a chance to interact with the world around him with understanding and perception. There's a blog called "The Joy of Autism" http://joyofautism.blogspot.com/ where a mom details the joyful life she shares with her son. I can tell from reading a few of her entries that her son is fairly high functioning. Well, here's a quote:

"Thank goodness I've got my son, and not them and not whatever they claim to have 'kidnapped' him, cause it sure doesn't look like the Autism we know. You see, autism around here looks normal to us. It looks friendly, it still learns and grows, and it makes our family happy when it smiles. It's learning to type, it's learning to swim, it goes to school with other children and it seems quite happy there. It likes to travel and tends to speak more when relaxed and seeing new things. It likes to jump and likes to run and is just learning to ride a two-wheel bike. It likes to play musical instruments and likes to coordinate its beat with its music teacher. It reads signs well and is learning about dangerous things. It sure doesn't look like it's holding anyone for ransom here. Our son knows he's different, even if he doesn't know who your Autism is, and it's only what you make of it that he will be fully aware of. You can choose. You can tell my son that Autism is holding him for ransom or you can tell him that he's free to choose what he wants and he's alive, and beautiful and we are all here to help him succeed."

Okay. Autism does NOT look normal "around here." Look at all the things her son is doing. It's wonderful, and should be applauded...but Stephen doesn't do those things. Stephen doesn't "know he's different." Stephen doesn't know he's "free to choose what he wants" - I don't even know how much self-awareness he has. It's not beautiful. Not even close. No wonder she doesn't see a problem! No wonder the parents of high-functioning kids say, "We're great, don't call OUR kids disabled!" That's all well and good, but MY son is most definitely disabled, and I want him to get better. End of story.

One more quote from "The Joy":

"My friend with two disabled children is here too. She said to me last night, 'it makes me so sad to think that there won't be any more people with Down Syndrome in twenty years.' I think she has summed it up for many of us parents with genetically different kids. We don't see the problem, here. (Well, I can think of a couple of bloggers who think there are major problems, and as they are parents themselves, I cannot relate to them whatsoever). It is only the medical profession and the media which profits from such a gaze -- the medical gaze, if you will."

Sad that there won't be any more people with Down's? What? Oh, wow. THIS parent of a "genetically different kid" most certainly sees a problem, here. Isn't eliminating a genetic disease that limits the lives of certain individuals a GOOD thing? Call me crazy, but I'd say that's a fantastic thing. Eliminate all diseases! Down's, autism, Fragile X, CP, cancer, AIDS...all of them! They are all diseases that rob people of vitality and well-being.

Did I say "eliminate all the people who HAVE these problems"? No. That's patently absurd. Love them, cherish them, celebrate them...but don't tell me that because I wish those diseases didn't exist that I'm some kind of neurodiversity Nazi.

I will step gingerly down from my soapbox now. My legs are tired, and my brain is buzzing from trying to get these thoughts out in a (hopefully) coherent fashion. At the end of the day, I hope all parents can agree that loving our children as they are is the fundamental rule of parenting and raising a happy family. I love my babies as they are, and want only the best for them. For Kerry, that means continuing to be surrounded by friends, and with laughter, and with the best personality I've ever seen in a kid. Do I want more for him? Always! Reaching higher, and teaching our children to reach higher, is part of being a good parent. For Stephen, it means fighting autism every step of the way. It can't have him. I won't let it. I won't lay down and let it take him away any further.

It's a hard fight, but one we are determined to win.

The Lady With the Spinning Head

On the way to work this morning I realized another blog entry was forming in my head, and was going to pester me till I posted it here. Then my inner censor, looking scornfully down her skinny nose, pushing up her horn-rimmed glasses, scoffed, "Will you stop bleating about your troubles? Don't you think people get sick of hearing you whine? Everybody's got problems, girl. Pick yourself up by the bootstraps and get over it." I considered those ideas for a while - maybe she's right. Maybe I've done enough venting. But then I realized that this blog has become vitally important to the retention of my sanity, so I slapped that bitch into submission and got on with therapy.

The last 24 hours have been...trying.

I'm caught in the whirlpool of "wow, my son really, REALLY has autism" emotions. Yesterday morning we fought the battle of dark vs. light. Again. We got through thirty minutes of that and within five minutes he was happy as a lark and ready to "go-we school...socks, shoes..." and I was reeling with the whiplash of his turn-on-a-dime behavior.

Then, David had a hard time getting him to LEAVE school yesterday afternoon. Usually Stephen grabs the backpack picture from his schedule, pops it in the "all done" pocket, and he's ready to roll. But yesterday, his new teacher was reading him a book, and he didn't want to leave till she was done. That would've taken another 10-15 minutes, and so they had to stop after one story...and he melted down. David had to drag him, kicking and screaming, to the car. He fought like a wildcat in the car...wanting his daddy to somehow "weeed!!!!" and drive at the same time. They got home, up the stairs, into the house...and SNAP. He runs to his room and starts playing happily.

Is your head spinning yet?

I got home from work to relative calm (that's what comes before the STORM, dummy!). I got started on dinner, and even decided to get a head start on the next night's meal. Kerry was playing with Legos, David was watching the news, and Stephen was playing somewhere in the back of the house. He was quiet and, for the moment, self-sufficient, and that works for me, especially if I'm trying to cook.

Somewhere in the back of my mind, a little niggling thought started pestering me - like a gnat that won't stop buzzing around your head. I ignored it once, and then...I heard a sound. The toilet seat? Yeah. Kerry's in the hall bathroom.

Except...there's Kerry still at the table. Must be David then. I lean out of the kitchen and glance toward the living room, expecting the couch to be empty. Except...David's still sitting there.

Damn.

I ran down the hall, and there sits Stephen, in front of the toilet, scooping out water with the cup we use to wash his hair, and pouring it down his front. I grabbed him, and he looked up at me, dripping, and said, "I take a bath?" Oh, god. He pulled out one of his golden oldie tricks...playing in the toilet. It got so bad several years ago that we had to put locks on the outsides of the bathroom doors. Eventually he got over that behavior, and one of the locks broke anyway, so we assumed (wrongly, ya think?) that we had successfully deterred him from doing that.

I stripped him down, threw his wet clothes in the sink, and started running bathwater. Of course NOW he doesn't want to be wet...he wants to watch a "vee-yo." At this propitious moment, someone knocks on the door. It's the downstairs neighbor (aka the dragon lady) complaining that there's a water leak in her bathroom. I said, "I guess it's from the water Stephen just spilled in here," and indicated the hall bathroom. "No," she says, "It's the bathroom in the back."

OH GOD. Leaving David with Stephen, I ran to the back. Sure enough, there's no water left in the toilet bowl, but plenty on the bathroom floor.

Gritting my teeth, I went back to Stephen, forced him into the tub, crying and fighting, and got him cleaned up as quickly as I could amidst his "I gee yout. I gee yout!" demands. Finally, I was done, and said, "Okay, you can get out now." He sat there, suddenly content, looking at me as if to say, "What? No, mother, let me sit and soak in this nice tub of water."

Is your head spinning yet?

I got him out, finally, and got him dressed and settled with a book. Gritting my teeth again I went downstairs to explain that he had spilled water in the back as well, and apologized. She was actually pretty decent (although she couldn't seem to look me in the eye) and said, "It's all right."

Trudging back upstairs I'm thinking, "Yep. I'm definitely tired of this crap." How's THAT for expressing myself?

We got through the night, and Stephen slept. Thank goodness for small favors. I got Kerry to the bus stop and then came back in to get Stephen up and ready for school. He woke up fairly easily, and was just starting to feel damp from a saturated Pull-Up, so I got his clothes and got him cleaned up. The shirt went on with no problems, but for some reason today the nylon running pants he's worn a dozen times wouldn't do at ALL. He started crying, and so I gave up on those, and grabbed some regular sweatpants. Fortunately those were acceptable, and then we moved on to socks. He grabbed them and handed them to me in a very dismissive way. "That will be all. Thanks. Buh-bye."

GRRRRRRR.

Thus ensued a wrestling session. I tried in vain to grab a small foot and at least partially put a sock on it, but he would have none of it. Kicking with all he was worth, he cried and fought and sobbed. At this point I wanted to sit in the floor and scream right along with him. Finally I got him on his feet, (with difficulty - he's upwards of 85 pounds now) grabbed his socks, shoes, and backpack, and hauled him to the living room. It took David and me five minutes to hold him down and get his shoes on. Before we could get him upright again, he had both shoes off once more.

With a last ditch effort, I shoved the shoes back on, we got him on his feet, firmly put his backpack on his back, and I dragged him out the door, crying as if his heart would break. See, at this point, I'm hoping I'm doing the right thing...what if he's sick? What if he really doesn't feel good? Unless he's throwing up or running a fever, there is often no empirical way to know. So, we go on the assumption that this is a product of transitioning issues. Plus, he's got that new teacher at school (who is freshly graduated from a local university, and is at least 10 pounds heavier than Stephen) and so we've got those changes going on as well.

He sniffed and whined and snuffled on the way to school, but was slowly calming. I even heard a whispered "Gone fishing!" or two. I felt my chronically tense muscles relaxing ever so slightly. We turned into the school driveway, and parked in our normal spot. I got out, opened his door...and he started crying again. I leaned in, hugged him, wiped his tears and said, "Come on, baby...time for school." The little guy finally let me swing his feet out and he shrugged on his backpack. We walked down the sidewalk, and out of the corner of my eye I saw his left hand come up and flicker in front of his eyes. That's a sign that he's getting the idea, that the transition is complete. Seeing a "stim" usually indicates that he's feeling like himself again.

His teacher met us in the hall, and we walked to his classroom. A tiny smile is forming, and by the time we get to the room I can almost feel Stephen sighing..."Here's my space. I KNOW this room. I know these puzzles and pictures and desks." He turned to me, "Goo-bye" and he was off into the sensory area. I left, and looked back through the little window in the classroom door. There he stood, slightly rumpled as usual, face still a bit pink and puffy from crying...and he's okay. His teacher promised to call me at lunchtime to let me know how he's doing, so I'll hope for the best. My little love, struggling so hard just to exist in what has to often seem to be a maddening world.

I'm going to close, as is becoming a trademark (habit) of mine, with some lyrics. It's been long known that "Music hath charms to soothe the savage breast, To soften rocks, or bend a knotted oak," and that is certainly true in my case. Music has become a real part of my life, and I love the kind that expresses raw and honest feelings, and that gives us a connection to the collective thoughts and experiences that link every human soul.

It's such a cloudy day
Seems we'll never see the sun
I feel the day is all uncertainty
Burning in the moment - trapped by the desperation
Between how it is and how it ought to be
~N. Peart

Trapped by desperation...nothing could sum it up better. But, we made it through today, and we'll make it through the next. Until things become what they ought to be...

Babies, Hopes, and Dreams

A new year. Seven days into 2008, and the hits just keep on coming.

Stephen's sleeping pattern has been erratic lately - and that's putting it mildly. Readers dating back to the humble beginnings of "Inside Out" might recall that my very first blog came along on a dark and sleepy October morning. And, so it was again this morning (and 2 days ago...and 1 day before that...) that Stephen and I got up at 4:00 a.m. to usher in another day.

Usually if we manage to get through those 2 1/2 hours before Kerry has to get up (and by manage I mean no tantrums over which video to watch, and no meltdowns about turning on the lamps at 6:30) then I can usually drag my tired-and-puffy-eyed self into the bathroom and sort of get ready for work. But not today. Just couldn't do it, and so once the boys were sorted out and off to bus and school, respectively, and David headed out for his class...I crashed. A little bit of rest in my darkened bedroom, and I emerged feeling fairly close to human.

I treated myself to a couple of favorite shows on the Food Network, which is the only channel I really like, and enjoyed some "me" time, as they say. But you know what happens when you get too much time to think. At least in my case, the memories come pouring in. At first it was just a trickle - I'd walk to the bathroom and pass the boys' baby pictures that are arranged in the hall - and I'd smile to myself remembering the tow-headed butterball that was Kerry at age 2. Next on the wall, three-month-old Stephen...a bundle of chubby baby fat, soft brown hair, dark eyes crinkling like his mama's...and then the dam holding the memories bursts, flooding my head till I could barely see.

My lifelong affliction is rearing its ugly head...when this happens, it's just not a pretty thing. "Experts" call it chronic sorrow and in this case, they've hit the nail on the head. This thing, this disease, or syndrome, or disability... it took my baby from me. It's just as simple as that, and as stark and blunt and hurtful. We grieved when we heard the official diagnosis, when the words "he has autism" hung in the air before they fell like lead balloons...but, you see, there's no closure here. There's no one moment that we can take a deep breath and say, "Well, okay, this isn't good, but we know what to expect...we'll still be sad but we can recover and move on." The sorrow is deep, and often.

No, with autism we get something new all the time - maybe it's an unexpected reaction to a certain restaurant. We took the boys out Saturday night, and decided to go to California Pizza Kitchen. Not exactly fancy eatin', but nice and casual, and the food's good. Step one: David and Stephen dropped me and Kerry off at CPK then headed for McD's as usual. Step two: Michelle and Kerry ply the hostess with "our family member has autism" comments, hoping to be seated quickly. It worked! Instead of 20 minutes, we were seated in a booth by a window in 5 minutes. Step three: Order for David (had to plan that out ahead of time, of course), Kerry and myself. Step four: David and Stephen arrive, we get the McD's food arranged, and wait for our food, which mercifully came only a few minutes later. We dig in, and for a while, it was fine.

Until Stephen got finished with his fries... Normally he is content to play with the trains we bring along, or maybe to look at a book, but not this time. He firmly plugged his ears with his fingers (a sure sign that there's too much sensory input) and began to whine. He slid under the table. He turned sideways in the booth seat and started pushing against me, and I compensated by speeding up my pizza consumption. Almost as with one mind David and Kerry sped up, too. It felt like we were smack in the middle of an episode of "24," racing against time before the Stephen bomb goes off. Tension builds, and I see it in the faces across the table from me. I looked around at the crowds of well-dressed, happily chattering groups of friends, and families with their kids, all enjoying their meals - and I said to David, "Look at all these people who take this for granted...just being able to eat out, and relax." There we sat, a tightly-wound little group of four, doing our best to choke down our food before we hit critical mass, amidst Stephen's warning cries: "Good-bye...good-bye! Time to go."

Oh, man. Chewing our last bites of pizza we made it out in one piece, swung by Costington's (okay, Wal-Mart) and dealt with assorted Stephen-gripes in THERE (including his absolute refusal to get the doughnuts I knew he'd eat, and his insistence on buying doughnut holes instead), and finally dragged ourselves home. We were all silent in the car, wrung-out, stressed, and sort of beaten down. It's such a striking contrast to the times we manage to eat out and run errands successfully - we definitely don't take that for granted.

So, back today...trying to stem the tide of those and other memories, as I tried to rest and enjoy the rare solitude, I did a bit of channel surfing and found myself engrossed in TLC's "A Baby Story" - which gently began to bring back memories of being pregnant with Kerry, working part-time as I waited for him to arrive. Watching baby stories was a favorite activity back then, and I smiled to myself as I thought back to those hope-filled days. Now...today...I felt decidedly different as I watched. I saw families preparing for newborns, laughing with older children...and I hated them. I hated them for their normalcy and their joy. I found myself thinking, "Yeah, just wait till your son gets autism. See how happy you are THEN."

What a bitter old crone I'm becoming, people!

The baby stories culminate with the birth of the long-awaited baby, as you would expect. I watched as mothers worked hard to bring their babies into the world, and I remembered my own labor experiences with crystalline accuracy. I saw screaming newborns placed into waiting arms, and I closed my eyes as I thought of each of my sons being wrapped and given to me...if I concentrate I can remember how the tops of their heads smelled. Of course by this time I realize that I have succumbed entirely to the memories instead of pulling myself away...while I'm drowning I might as well stay here a while. The water's fine.

So, I cried. Huge wracking sobs that have been hiding out for quite some time, apparently. This isn't that wimpy sort of crying you do when you're out of sorts and you've had a bad day. We're talking lay on the floor and bawl till there's a wet spot on the carpet - your body shaking silently as you try to rid yourself of the emotion that would probably drive you bonkers should you try to bottle it up. Because I remembered with loving pride the hopes I had when my baby boys made their entrances - I have no doubt that Kerry will go far, as he is already the most talented, loving, and brilliant almost-ten-year old on the planet. :-) But my baby...I had those same hopes for him. Those people on the baby stories were full of hopes and dreams for their children, and I hated them for it.

I cried myself out and managed to clean up enough to go pick Stephen up at school. I drove over there with my dark mood wrapped tight around me like a blanket...and I was pretty intent on keeping that blanket with me for the rest of the day. That lasted until I opened Stephen's classroom door, and this beautiful, slightly messy boy hurdled toward me at top speed, laughing the laugh I love, and enfolding me in his arms. He planted kisses on my cheeks and then got his backpack...he took my hand, looked up at me, and said clearly, "Time to go?"

My heart, cleaned out and freshed up merely by letting myself fall apart for a while, swelled with pride. My child, whom I once suspected would never say a meaningful word, was talking to me as any child might talk to his mother. "Yes, baby. Time to go."

And so hand in hand we walked to the car, singing a little song Stephen made up..."Time to go...I go home!"

It's not the ideal. It's not even close to normal. I still want that for him, and for us. But for today, it's enough.