Once there were two...

Saturday evening

David and Kerry just walked out the front door to take a stroll around our neighborhood…it’s 7:40 at night, and all the streets of our subdivision are lined with paper bag luminarias – a Christmas tradition here in our little neighborhood. Kerry and I spent an hour this afternoon at a neighbor’s house, filling bags and enjoying meeting some folks who live around here.

Not sure if you’re picking up on the theme here: Kerry and I worked on the bags. David and Kerry went for a walk. I’m sitting here in my living room, watching the shadows of family groups walking down our street enjoying the festive, cold air…because someone had to stay with Stephen. We couldn’t go as a family to work on the neighborhood project – Stephen wouldn’t have understood and would’ve just made things harder. We couldn’t go as a family to walk around and enjoy the lights – Stephen won’t wear coats this year and he would’ve never understood just going for a walk.

It’s been 7 ½ years since Stephen was diagnosed, and today the pain feels as new and raw as if I only found out yesterday. His issues impact EVERYTHING – family life, shopping trips, the TV being on, the lights being off…and I’m so sick of it I could scream. Christmas used to be my favorite time of year. The magic that seems to make most people a little kinder, even for a few days, the chance to buy special things for people I love, the music on the radio…all of that feels empty, no matter how hard I try to recapture the good feelings.

I’m tired of this chronic sorrow. I’m tired of never feeling like my family can just EXIST. I’m tired of hyper-planning every damned move we make. I’m tired of feeling bitter toward others, just because they don’t have the same problems we do. I’m tired of feeling hopeless and in despair, and worrying about a future that seems devoid of any chance of happiness. I’m tired of imagining horrible scenarios about Stephen’s future, about having to admit we can’t care for him, and wondering who WILL.

I am more tired than these words can express of being told that “you must be very special people for God to have given you this child.” I can tell you with total authority that I do NOT feel special. I feel cursed. Stephen seems cursed. I watch this giant baby boy struggle when even a tiny thing goes off schedule. He is sick with a cold now, and no amount of sneaking, cajoling, forcing, mixing or pleading will get him to take some cough medicine so that he doesn’t keep himself and his mother up half the night. No amount of begging, social stories or bargaining will get him to put on a damned coat when it’s 30 degrees out.

I read a book to him today – a Dora the Explorer compilation – and it is a sweet experience for the most part, because we always sing the songs that are Dora standards: the Map song, the Grumpy Old Troll song, the “We Did It” song. But today during story 4 I got distracted by the mailman delivering some packages, and I forgot to sing the Map song at the right time, and I kept reading. Stephen got more and more agitated. When I realized what I had done, I tried to go back and sing it but that was no good. No, he had me finish the 140 page book, then we moved to another room and I had to start all over, at the very beginning of the book, this time carefully singing at all the right times. I’d give anything to be able to TALK to him, to tell him that we’ll read it again later because Mama has some work to do…or to say, “Oops, forgot a song – let’s go back and sing it now.” But that won’t do, not with autism. The path that thoughts follow in his brain is so convoluted, so rigorously one-way, so intent on passing the familiar landmarks…and exhausting to someone who knows there’s a shorter, more direct way to get to the desired destination.

Sunday morning

I’m finishing up this entry the next morning, so there is a predictable lessening of the tension and a more relaxed feeling in my stomach…for now. We are on day 2 of what seems like a very long school-less period of time, and, as hard as I try to focus on the positive, to enjoy Kerry’s excitement, to seek out opportunities for fun, there’s a shadow that persists in hanging over it all – a voice that whispers, “Look at that family over there…four kids, all normal…look how easy it is for them to move through the mall, look how they smile…” or more often and insidiously it slyly says, “Listen to that mom, fussing at her 3 year old, telling him to stop singing so loudly – she doesn’t have a clue, does she? Wouldn’t you like to trade ‘problems’ with her? And all these people around you, fretting over which Christmas sweater to buy or what kind of cappucino to order... Stupid idiots - how dare they think those are worth spending two seconds on?” That’s when I look at myself with disgust, when the bitterness invades my genuinely compassionate soul, and I avoid associating with the outside world because it just hurts too much to be bombarded by images and sounds and situations that remind me of what I have lost, and what I will never recover. My son has been stolen from me in many ways, and will never be independent, never have a girlfriend, never go to college or get married, and there are times when that knowledge is an unbearable weight. Yes, I have an older son who is amazing and talented and a true joy in my life. He is wise and compassionate beyond his years: as I took my turn walking through the lighted streets with Kerry last night, he said, “Sure, mom, I wish I had a normal brother. But nobody could have a better mother.” While I feel woefully undeserving of such praise most of the time, it warmed my heart like nothing else could.

But in May 1999 another son began growing inside me, and he was supposed to grow into a different yet just as aware and engaged person as his big brother. For a little over a year of his life, I lived in days of hope – on the calendar of my past, that year is edged in gold: “The Year Before it all Fell Apart.” I had two darling little boys, two plump angels that I ushered around to the store, to Mother’s Day Out, to family gatherings. One blond toddler whose world was expanding at a great rate, and a dark headed baby who was busy just being a sweet little soul who had come so unexpectedly in our lives. For one year, I lived in peaceful ignorance of what was to come. For just over a year, I didn’t worry about the future – I was smugly secure in the happiness of the road ahead. Two little boys, two years and four days apart in age, who would grow up together – in my mind’s eye I could see Stephen toddling after his brother, the companionship they’d have as playmates, even the inevitable arguments and wrestling matches. I can’t let go of those dreams – they are such a part of me that the constant battle to cut them out of my soul leaves a ragged cut that refuses to heal.

Yes, things could be worse. Yes, I do know that many people struggle with more heartrending things than we do. Of course I know that everyone has problems and that I have no right to claim mine are worse. But right now, in this season, too often I feel desolate and hopeless. Right now, I feel that I’d switch problems with just about anyone.

I am completely and wholly grateful for my children’s existence. I am fortunate to have an extraordinary son who has already surpassed expectations.

But I was supposed to have two.

Better late than never

To the faithful few who have asked me for a new entry, I apologize for my lengthy absence. The move to the new house, the unpacking of boxes, the searching for items, the surgery on my hand, the surgery on my father...all of these things conspired to keep me away.

I don't know what kind of entry this will be, but I'll type out what comes to mind, and we'll see what the result is.

We are settled into the new house and are enjoying having our own home very much. Gone are the days of worrying that Stephen's being too loud or that Kerry's exuberant Rock Band playing is going to disturb neighbors. I have gloried in having a yard to putter around in - I've cleaned out flower beds, transplanted things (some of them even lived!) and spent happy hours planning and designing for the outdoors.

Stephen did very well with getting used to the new house. Inexplicably, he still gets out of bed every single night and finishes sleeping on the couch - but hey, at least he's sleeping and not waking me up. Kerry loves being in a neighborhood, and has several friends on our street. That fact alone makes us very happy to be where we are. We enjoyed a Halloween of both going out (David took Kerry and friends) and receiving Trick-or-Treaters (Stephen and I), and it was just so...traditional and normal and chock full of Americana. I highly recommend it.

On to everyday matters - Stephen continues to adore school. Why won't someone mandate school be in session for kids like him all year long? So much of our stress would go away if that were true... Kerry is in middle school now, and he tried out for and was chosen to be a percussionist in the band, and he is thriving. He's about the coolest kid around, even if he IS mine - caring, sweet, smart. He makes me laugh every day, and I can't imagine being much prouder. At work yesterday I drank tea out of a Camp Sumatanga mug that Kerry brought back for me after two days of science camp last year. He was miserable and didn't like being there, but he still wanted to bring me a souvenir...that's the kind of kid he is, and I love him for it.

The weekends continue to be very challenging at times. Stephen hasn't lost his love of "dee-dees" (DVDs) so I have to plan shopping trips carefully. The problem is that Stephen wants to get ready and go right after he wakes up on Saturday and Sunday. We spend most of the morning saying, "Later!" I made a social story for him about waiting till 2:00 p.m. but he still asks to go someplace so often that I have to plug up my ears or else go nuts. I miss looking forward to at least a semblance of leisure on the weekends...the time I spend outdoors is treasured, maybe even more so because of its infrequency.

We perpetually struggle with general autism stuff - mysterious crying spells, picky eating, lack of interest in potty-training, insistence on routine. I can't say it's gotten any easier, in spite of the years of experience. But there are still the moments of unadulterated joy, of belly laughs that would melt even the coldest heart, of precious little insights into Stephen's world. He has discovered the fun of YouTube, where a child with autism can watch his favorite clips (from Thomas to the 20th Century Fox fanfare) over and over...he found a video of a boy sharing his collection of Thomas VHS tapes, probably about 40 in all, and I realized a few weeks ago that Stephen had gone to his room and lined his tapes up in the same order. He loves to take us into his room to watch him name off his tapes. He mimics the boy from YouTube, down to the inflections and every "and" or "uh" the boy uses. It's amazing to see. So, all those things, fun and heartbreaking, combine to weave the fabric of our days.

The middle school years, high school years, and beyond are looming, and we still have so many questions...

But now, today, my outlook is good. I'm on my second day of early morning walks, and I can also recommend those, if your schedule permits. Unlike my past bouts with "fitness," my outlook is different. I just want to get out and enjoy the cool quietness of my new neighborhood, preparing myself for the day ahead - I'm not trying to run a marathon here. I'm not focused on a destination, I'm merely enjoying the journey.

These, friends, are the few days of autumn that we are granted every year. This morning as I walked, I saw a maple tree, its leaves a dappled mix of red and gold, the pale morning sun shining through its canopy, and the very light captured in that space was golden and alive and warm and so much more intense than the wan rays peeking over the horizon. I stopped, my breath taken away by the beauty of it all...and I've filed that image away for a moment down the road, when I'm overwhelmed and tired and gray.

I hope you have moments like that today.

Changes

As David and I were leaving the food court today, we saw a woman sitting on a couch, a child's head in her lap, and a stroller parked nearby. Since it's move-in day for undergrads, I figured she was babysitting a sibling while big brother/sister moves into the dorm. As we passed, I saw immediately that the "child" was in fact a young man, with facial hair, and with obvious physical disabilities. We walked into the hallway and stopped, both of us struck by the scene. This woman was caring for her son, perhaps, while another of her children went about the business of beginning college life. David said, "That's something I need to see every day" - things like that give much-needed perspective to parents like us. We stood there for a moment, just recognizing the intensity of the situation, then parted ways. I told David I was going to walk back by, just...because...

As I approached the corner of the room, I saw that the woman had taken her son into her lap - his small body curled, arms bent into his torso awkwardly - and she was lovingly patting him, much as any mother would pat a baby. The love on her face was obvious, and I was compelled (introversion be damned) to stop. I reached out to her and said, "I just want you to know that I am touched by you." I told her I had a son with severe autism, we shared a quick, warm glance of mutual sympathy, and she said something like, "I know you have a hard time, too." I squeezed her hand, asked her if I could get her or her son anything, and she assured me they were fine. She lifted him and put him into what I could now see was a special stroller, and began to get him situated and comfortable. I walked away with tears in my eyes, and caught up with David in the bookstore. I cried as I tried to relate the last few minutes, overcome with emotion and feelings I couldn't even put into words. As I left, I passed the mother pushing her son through the bookstore - she had pinned a cloth under his chin to keep him neat and dry, and she had a large bag of his things hanging on the back of the stroller. On her face I could read the story of her life - sadness, disappointment, weariness, but yes, love, gentleness, patience, and even joy.

It was like looking in a mirror.

Seeing this quiet woman holding her grown son in her lap, caring for him with absolute love and devotion, brought a change about in my heart. For every tantrum Stephen throws in the middle of Publix, because he couldn't have the fries off someone else's plate at IHOP, we get a hundred smiles. For every messy diaper we have to change we get a thousand delighted giggles and belly laughs. For every hour spent planning even the simplest shopping trip, we get to bear witness to the pure, shining joy of my baby boy, dancing through a store, thrilled with his $5.00 DVD. His interaction is sorely limited, yes, but there IS interaction. He walks and talks and inhabits his Stephen-world with nearly constant happiness.

This change in my soul won't be permanent. I'll come back here, and be fed up with autism and its worries. But maybe a vestige of today's experience will remain lodged in my heart of hearts. I know that the love I saw personified today is the love we have for Stephen, and for Kerry, and that every parent's patience gets stretched thin. We must stretch to the breaking point, and relish every tiny interaction. Every time I feel that I just can't take it anymore, I'm going to call up the mental picture of those tired and capable hands cradling that young man with the vacant expression with such love.

One change that IS permanent is our new house - we have been in for about 2 1/2 weeks, and are settling in nicely. Stephen seems to be dealing fairly well with all his changes - a new house and going back to school, which he still adores with a fierce passion. Kerry is off to a good start in middle school, and we continue to adapt to our new home as a family. I had been grouchy lately, feeling overwhelmed with "things" that seemed of the utmost importance.

Today I was reminded of truth, love, and devotion, and it was a reminder I sorely needed.

Pack up your troubles

Like most humans on the planet, I've never particularly cared for packing to move. Packing for a trip is fun because, well, you're going someplace great, to get away for a while - and you don't have to take every single thing you own. Packing to move, though, is a whole different matter. It's all gotta go and sometimes you don't even know where to start.

This time, though? Packing to move is downright delightful. Moving into the first house we've ever owned and leaving this "apartment community" feels amazingly liberating. And even though we haven't got the official closing date set, through some trick of fate, some celestial mechanics, some miracle-type phenomenon, it seems that somehow it's all going to work out.

And so I have been in my element, dwelling in all the glorious possibility that exists in this, the land of the homeowner. I have rediscovered window shopping - that lazy, easy strolling through a store with an appreciative eye to what might work in this corner, what would highlight that wall, what color paint I could use in a particular room. These types of musings are pretty foreign to me after living in rented spaces for over a decade with little to no "scope for imagination" (Anne of Green Gables readers take note).

Yesterday was Saturday, the day created for errands and getting things done. Stephen and I loaded up his schedule with lots of things - a trip to the bank, a stop at Walgreens, (side note: their store-brand nighttime pull-ups are BETTER than GoodNites!) then to Home Depot and a home decorating store for those on a budget (Old Time Pottery, for the locals). Of course we swung by McD's before we went home. Stephen did beautifully, dancing through Home Depot and being uncharacteristically patient as I browsed through paintings at OTP - the mirrors he found in which to make faces helped a lot.

I was in a fantastic mood when we got home, feeling victorious to have accomplished what I needed to and overjoyed to have spent time imagining the possibilities of furnishing my new house - just thinking of the two tiny samples of paint I bought at Home Depot, ready to try out as soon as we get the keys, had me grinning from ear to ear.

It was in that spirit that I worked on cleaning out our bedroom closet. The way I see it, the more I can throw away/give away, the less I have to pack. I had the iPod going, and I was getting it DONE. Stephen was watching a video, then moved to his DVD player, and so I had some uninterrupted time. I got to the very back of the walk-in closet, and started cleaning out and re-organizing my gift wrap and gift bags. The closet was too cramped to actually spread out and get things straight, so I hauled it all out and laid things on the bed. BAD idea.

Stephen ambled in, and started intently watching me. I had really hoped he'd stay occupied while I finished this, considering his love of OPEN!(ing) presents. So I quickly folded gift bags and tissue, organized them by occasion, packed ribbons in a box, and lined up rolls of gift wrap in the organizer bought for those long rolls...and he was entranced. I moved things back into the closet...as I put the last roll of paper away, I heard the first whine.

Oh shit.

Things quickly escalated into a full-on tempest. Stephen: "OPEN!" David and/or me: "All done open." Repeat ad nauseum.

Crying, on the floor, stomping feet...wailing, floundering on the bed, grabbing for me only to slap me (hard!) and pull my hair... I'd leave the room and he'd follow me. Repeat the above sequence.

David kept trying to interest Stephen in swimming to no avail (this from the child who asked DAILY all winter for "swih?"). Finally I insisted that David and Kerry go on out to the pool and I was going to work on getting Stephen to go too. A bit more wailing and gnashing of teeth (on both our parts) and he sort of agreed to go out - and by agreed I mean he didn't fight me tooth and nail when I put his swimsuit on. He wanted to bring Pringles to the pool and I said no. More crying. Then he started asking, "Daddy? Kehwy?"

"They're at the pool. Let's go find them!"

Crying.

And this, friends, is the bottom-line, soul-rending thing about this kind of autism. To be unable to communicate such simple things to a child who has dealt with the huge disappointment of seeing wrapping paper that was not intended to wrap up delightful surprises for him - to be unable to get him to understand that his dad and brother were waiting for him just a few steps away...that's the rough part, the part that reminds me that no matter where we live, autism comes along. It's going to sneak into the boxes that I've carefully packed and labeled. It's going to show up in the new paint job, the new and precious pieces of furniture lovingly chosen and saved-up-for...it'll be in the backyard, in the basement playroom, in the kitchen...

Yesterday the pall that hung over the afternoon came close to taking away the shining moments of the morning, but after some time spent visiting with my friend Elizabeth last night, and a good night's sleep, I'm able to remember the fun of my precious little boy "shopping" with me. I'm remembering the strolls down the aisles of stores, mentally buying this or that, while he laughed at himself in mirrors. So, yeah, autism will come along when we move to our new place, but at least it'll have more room to spread out. And I think we'll all be able to handle it a bit better, maybe, just because everyone can have their own corner, to think and re-group. Just a few more weeks and we're outta here.

Independence Day

In the way of an update, over the course of the last ten days:

• We grew totally frustrated with the ridiculously poor management of our apartment complex (air conditioning problems in the deep South in the summer are no laughing matter)
• We applied for a mortgage loan, as a lark, really - and got approved
• We searched for a house with certain qualities and requirements - and FOUND it
• We have put down a contract and are nearly 100% sure to get the house we want

So, in a whirlwind of activity, things are changing and fast. Our back porch is starting to fill up with boxes, and we officially gave our move-out notice a few days ago. We hope to close and move in a few weeks' time. Getting away from this place, and the unpleasantness of it all - not the least of which would be throwing money out the window each month - will be liberating.

Stephen never went to the summer camp I had hoped would be the answer to our "summer is here and I miss school" problems. It was a disaster - construction delays prevented the camp from being held in the proper location, and our gut instincts didn't feel right about the teacher, the set-up, or anything. In a move that seems not-so-smart in retrospect, we let Stephen's school-year teacher come and get him so he could spend time with her, and at first, he pined for her on every day that he DIDN'T get to see her. It smoothed out a bit, though, and I suppose it all turned out okay. Monday he'll start ESY services with her, back at the school building he's used to, and that goes through the end of July. Two weeks into August, school starts back in earnest.

Kerry will begin middle school in the fall, and all the emotions wrapped up in that deserve a blog entry of their own. He's growing up before my eyes - I watched him at the pool yesterday, playing with some little kids (probably 6 to 7 years old) and saw him in a whole new light. He was the BIG kid, laughing and playing and being good-naturedly teasing with the little ones. He's an amazing young man, who's very excited about the new house, and has claimed the downstairs den as his own - for Lego storage and a hoped-for drumkit... Like I said, he's growing up. :-)

I haven't been very faithful to write here lately, and I'm afraid moving to a new house will only make it worse. I look forward to updating later with pictures of the new place and stories of how we all handle the transition.

So, Happy Independence Day to you all - however you choose to celebrate it. And now, back to the boxes...

The Sound and the Fury

The past 2 days have been BAD. I said earlier on Facebook that autism came barging in with a vengeance...

Stephen's teacher Heather has been letting him come over to her house the past two days, just to give him a change of scenery (since the summer camp we had signed him up for turned out to be a disaster - more later on that). We thought that his awful behavior had something to do with seeing his beloved Heather but not going to school - every time he'd sit down at his (also) beloved DVD player, after a few seconds he'd start whining, then crying...and he kept saying "Box...box!" and pushing us away.

We've been trying everything - saying "All done box," because we had no clue what that meant. A gift, maybe? The plastic boxes the DVDs come in? Or, tonight, I thought that maybe it was something to do with a DVD menu - maybe something square? I even moved a couple of boxes of winter clothes I had put close to his chair a couple of days ago - I thought maybe I had upset his feng shui...

We were going nuts - and feeling dumb for re-introducing Heather back into the picture, and maybe making things worse for Stephen (and ourselves) in the process. He was obviously having some sort of autism meltdown...

Tonight, after the tenth time Stephen tried a DVD, kept repeating "box," and cried, out of desperation, I sat down at his DVD player and put in a disc. It started, and I put on the headphones.

There was no sound coming out of them.

I wiggled the wire and got a feeble bit of sound out of one side, but...the light finally dawned. It WAS an autism thing, but it was so much more simple than we were making it. He couldn't hear his DVDs. He didn't know how to tell us that.

Luckily, I had a back-up pair of headphones (yeah, I'm learning!) in the closet. I walked down the hall, got them out of the closet, and brought them into the living room. I opened them, we got them plugged in, and suddenly...peace. And laughter and joy and hand-flapping. He was fine!

And you know what else? The headphones? Stephen was with me at Wal-Mart when I bought two new pairs so I'd have one as a back-up. They come in a plastic BOX.

He did try to tell us in some way, but we just couldn't grasp it. Last night I was with Kerry at Scouts, and David said that Stephen was upset the whole time...David was also here with the boys all day (except when Stephen was with Heather) and had to deal with Stephen's continual fussiness. He told me tonight that this whole situation is a lesson for him...he was convinced that the progress Stephen has made, and the relative calm we've had since school got out, had disappeared in a matter of a day or two. He said that he never even considered that there was a legitimate reason for Stephen's aggravation. Thankfully the pieces fell into place. Relieved doesn't even begin to cover how I'm feeling tonight.

The Rainbow Connection

Last night before I went to bed, I was about to push the line of video boxes Stephen had laid out further down the hall so nobody would trip over them in the middle of the night. Once again I glanced down the line-up, musing about his rationale (if any) in the way he placed the tapes. Occasionally he groups them by theme (Dora, Blue's Clues, etc.) but more often than not it looks completely random, even though he is extremely particular when he's creating these line-ups. If you move one out of place he quickly puts it right back.

So, above, you see last night's creation. Notice anything? Unless you're far more observant than I, it might take a minute.

As I leaned down to push the boxes down the hall, I noticed that the two yellow tapes were together. Then I noticed the red to reddish-orange boxes to the left. And the greenish tones followed by blues. Then the darker blues. There are a couple of anomalies like the Elmo box and the fuschia singalong, but otherwise it's nearly perfect.

He lined these tapes up in the "scientific" rainbow pattern. Remember "Roy G. Biv"? Red, orange, yellow, green, blue, indigo, violet...the way light is split when it goes through a prism. Things like this aren't easy to pick up on ADOS screenings or such. And no, I'm not grasping at this "installation" as some clue to Stephen's brilliance. But, it IS kinda cool, huh? That his mind enjoys the pattern created by the rainbow effect, and that either instinctually or intellectually he knows the flow of color.

It's funny - Kerry's last choir performance featured a rendition of Kermit's classic "The Rainbow Connection," and at the time hearing that sweet, innocent song from my childhood made me cry. I heard it again in my head last night as I thought about my son and his life...

Someday we'll find it, the rainbow connection - the lovers, the dreamers, and me...

The (dis)appointment

Recently we took Stephen for a long-awaited, much anticipated appointment with the developmental pediatrician at the Sparks Clinic. I literally filled out the paperwork for this visit a year ago. As I'd told anyone who would listen from the time we first set foot in Sparks, we certainly had no doubts about Stephen's diagnosis, but we wanted an update about where he falls on the spectrum after 7 years. We've been to Sparks three times now, each time putting Stephen through tests and jumping through their hoops so that we could ultimately get to the autism clinic, and, hopefully, get more clarification about his autism and if there might be an identifiable genetic cause.

The plan for the day was as follows: David and I would talk to the psychologist while another team did the ADOS (Autism Diagnostic Observation Schedule) with Stephen. Then, we'd meet with the nurse practitioner and the pediatrician. So after some cajoling from the diagnostic team, Stephen went with them (carrying his trains, books, and his bag) and David and I went with the psychologist to answer questions about Stephen's development for the umpteenth time. An hour later, we went back to the waiting area to see that Stephen had been left there with his books and trains, and the nurse practitioner was "keeping an eye" on him. The woman obviously had super-duper powers of observation and possibly x-ray vision, because she was seated behind a reception desk without a clear view of Stephen on the floor. The door to the hallway which led to several exit doors was wide open. As we were recovering from that bit of shock and were talking to Stephen as he sat on the floor, David discovered that he was wet and had leaked through his clothes. Lovely. Upon further investigation, I noticed a familiar odor. Stephen had pooped and was sitting there, soaking wet and, by that time, filthy. The "team" was in possession of his bag containing pull-ups and wipes the whole time.

Burning with anger and humiliation for our little boy, left basically unattended and in his own filth, we managed to get him into an exam room (he is very leery of doctor's-office-type rooms). We struggled to get him to lie down on the floor and we undressed him. He had been sitting for so long that he was covered in poop. Luckily I'd brought another outfit for him. We were furious to see him in this position - he was wide-eyed with fear and clearly miserable to be in this unfamiliar situation. The clinic staff, including the pediatrician herself, watched from the doorway of the exam room as we worked to clean him up. All six of them stared, unable to look away, transfixed with some sort of fascination, like commuters passing a car accident. There were no offers of help, no apologies...one of them bleated, "Oh, gosh! We had no idea he needed changing! We didn't smell anything, really!" Uh-huh. With our son's BMs, you'd have to have a defective nose not to notice them. We asked for a plastic bag for his clothes and his dirty pull-up, and the staff scattered. We waited and waited, trying to keep Stephen calm, and finally someone shoved a garbage bag into David's hands. The pediatrician stood in the hall as I wiped Stephen off, trying to clean him as best I could. She watched as I finally got him presentable and dressed in clean clothes. Then, she suggested we move into another room that had a sofa, where Stephen might feel more comfortable.

We moved across the hall and sat down. The doctor began to ask us the SAME questions we'd answered multiple times before - basic history that I'd spent hours filling in on forms a year prior to this appointment. There was a rather zombie-like student or assistant or observer who sat in a chair by the door, struggling to stay awake. She was never introduced to us, nor did she ever utter a word. David and I kept exchanging glances, both of us puzzled by "experts" acting like they'd never seen a child like Stephen before in their lives. I could hardly focus on her repetitive questions - my brain was swirling...HOW could they leave him that way? are they thinking at ALL? this IS the autism clinic?...

Finally the doctor said, "Okay then. Let's get him undressed blah blah blah..."

The rest of whatever she said trailed off into nothingness as David and I simultaneously thought, "Oh SHIT..." I made a move to take Stephen's shirt off, and he would have none of it. WHY didn't the doctor examine him earlier, when he was stark naked in the other room? She stood in the doorway watching, not saying a word, when she KNEW she was going to want him undressed later. We didn't know that or I guess we would've said something at the time. The point is, why didn't SHE say that? This experienced developmental pediatrician didn't take advantage of an obvious opportunity? After we struggled with Stephen, again, with no offers of help or suggestions from the staff, David finally said to the doctor: "What do you need? Tell me what you need to do with him so that we can prepare..."

The doctor: "Well, I need to examine him."

Finally David stated the obvious. "Why didn't you take a look at him in the room before, when he was already undressed?"

"Well...erm...we hadn't even started then. I hadn't done the history," and she came toward Stephen saying, "Okay, here...want to see the stethoscope? Just sit down."

Oh, she's an expert all right.

David asked her just how much experience she had with kids like Stephen. "Oh, lots..."

Sure. Of course she does.

Finally we asked the staff to leave so we could talk. Both of us agreed that this was an exercise in futility and that getting any meaningful results was a laughable prospect. We called the doctor back in and told her we were leaving.

She smiled idiotically, "Well, okay then. But I can't order any tests when I haven't examined him." I said that we would have our own pediatrician look into ordering them. As the doctor and her silent assistant backed out the door, she continued to smile her empty smile, "Well, all right then...we'll see you later..."

The "team" of psychologists came back in to discuss their findings, and told us things we've known for years. One of them took a long time telling us how we should focus on Stephen's need for visual supports and that someday he might well be able to work in a restaurant sorting silverware or some such thing. While we both want him to do as well as he can in his life, it's a bit of a stretch to go down that road right now. We don't want to be patted on the head and given "stories of hope and journeys toward healing" - we want to find out what caused his autism if we can, and we want real-world ways of dealing with problems. The time will come later to find out what he's capable of in the future. Finally, we asked the one psychologist that we've come to respect and trust to stay behind, and we told her plainly what a disappointment the day had been. We outlined the absurdities and humiliations our son was subjected to, and our anger about the mismanagement of our time. She admitted that the system had problems, and intimated that most children who come through the autism clinic are much younger than Stephen, and many of them aren't diagnosed yet. She also said that many parents they see aren't as "savvy" (read: they are ignorant) about autism and that the repeated asking of the same questions serves to pull information out of people who are unable to give a coherent and cogent history of their child. The fact that we ARE that involved should have made the jobs of these clinicians that much easier---we had an abundance of information about Stephen and were clearly educated and informed. Once the team saw that we were in fact not the uneducated parents they claim are the norm, they could and should have changed their approach so as to make the very most of our time and our knowledge of Stephen's autism. I told her that they needed to have a different set of protocols in place for kids like Stephen if they're going to agree to see them - mainly, building in flexibility, and knowing that you can't always follow the SOP. She agreed to pass on our complaints and seemed genuinely sorry we'd had such a dismal day. We decided to forego the meeting with the nutritionist who had already passed on her "helpful" suggestions of "getting Stephen to eat more nutritious foods," a bit of brilliance that had never occurred to me...

The kind of blatant ignorance (for there can be no other description) of the staff at this "autism clinic" is disheartening at best and disgusting at worst. To have so little care and sympathy for a child like ours - to leave him alone in his own excrement, to put him through a series of unnecessary and redundant tests, to put US through endless and repetitive question/answer sessions and filling out of ridiculous questionnaires ("Does your child seem embarrassed when other children make fun of him?" Give me a BREAK) only serves to make families like ours feel more and more hopeless and isolated.

I began writing this entry only a few days after the incident, and I was feeling very bitter and angry at the medical world in general - in fact, I titled this entry "The Blunders of Modern Medicine," and felt very clever and self-righteous indeed. After David read this, he rightly pointed out that this is OUR experience and (we hope) an extreme case of ignorance on the part of the staff at this clinic - ignorance in dealing with low-functioning kids and their families. Now, a couple of weeks later, I'm feeling decidedly less vitriolic and yet still fully aware of the disappointment of waiting a year for this appointment only to leave the building feeling that the whole thing was a colossal waste of time. I spoke with someone who did clinicals at Sparks and then actually worked there back in the late 70's, and he was shocked to hear of our experiences. He outlined that in his current role as an educator he teaches clinicians to gauge the family involvement, to check on how the parents are doing when a child is being tested, and to generally strive to put families at ease - actually making it a point to put the child's needs first. I only wish that was the philosophy of the Sparks clinic, as it seems to me that this kind of philosophy would be the only caring and sympathetic way to deal with kids and families affected by autism. I still plan to write a letter to the director of the clinic because this kind of neglect and wrongness can't go unmentioned. Whether it will do any good or bring about any changes, I have no idea.

David and I are beginning to suspect that our future as a family lies somewhere outside the geographical bounds of this state. While we couldn't be happier with Stephen's school year situation, as he grows and changes we need more in-depth involvement from medical professionals and therapists, and based on our experiences lately, we'd better expand our search if we want to find the help we need.

For now we will keep doing what we're doing - sending him to the best school we can, providing as much structure as we can, and working with our pediatrician to obtain some possible genetic testing. But we are still very much on our own. Doing the research, asking the questions that should be asked by the doctors themselves, and navigating through the labyrinth. For all the recent exposure autism has gotten, and the possibilities that research may uncover, many families are in the position of doing much of the work on their own. Life is tiring enough without this added burden, but unless we are willing to sacrifice our child and our sanity, there is no other choice.

Heigh ho, Silver

Before we proceed, gallop, don't walk to this story, take some anti-nausea meds and give it a read, if you haven't already:

"A Gallop Toward Hope: One Family’s Adventure in Fighting Autism" http://www.nytimes.com/2009/04/15/books/15horse.html

Okay...

Those of you who know me know that I tend toward the cynical side of "magical" cures, and not without reason. We've been to our share of "healers," albeit not shamans, I'll grant you that.

There are quite a few things about this story that get my gorge rising. My own little pet dream is to collect some of my writings (and that collection grows daily) into a book about our life - isolation brought on by several factors, not the least being autism. I know that I'm looking at a struggle to even get something published. This man, Mr. Isaacson, got one million dollars...BEFORE HE WROTE A WORD. So maybe he has an established history as a travel writer. Okay, he gets points for that. But in the publisher's (Michael Pietsch) own words:

“It just touched so many points of interest — helping to heal an autistic child, traveling under difficult circumstances...Most of all, I felt this was a story entirely driven by the chances you’ll take for love, and I felt, who’s not going to want to read this story when they hear the outlines of it?”

Well, I can think of one or two people...

Reading this story reminded me of an entry I did last year about the surfing camps for kids with autism. I'll repeat a sentiment I hope I established back then: I am NOT saying that kids with autism shouldn't or can't do anything they want. I'm also not saying that riding horses or surfboards or carnival rides might not improve their behaviors temporarily. What I AM saying is that this does not a cure make.

Mr. Pietsch, right up there in his quote, says "helping to heal..." How many families are, right this minute, Googling "horseback riding/shaman appointments in Mongolia"? I'm really not joking. Some parents are THAT desperate. And again...with very, very good reason.

Another quote: “'The Horse Boy' traces Rowan’s early difficulties with 'demonic' tantrums, speech delays and incontinence. The only thing that seemed to help, Mr. Isaacson discovered, was riding horses. On horseback Rowan was calm, gave verbal directives and expressed joy."

Okay, on horseback he was calm, he spoke some, and was happy. That's fantastic. Did he suddenly ask for a port-a-potty to be strapped on to the horse? Stephen is calm when he's in Wal-Mart, clutching a new DVD, and he expresses joy when he gets to watch it. Have I hit upon a cure? Or, perhaps, our magical cure is found tucked between the golden arches - he's calm, verbal, and joyful there. A friend on FB suggested that maybe the McDonalds corporation would like to give me a million dollars to write about our life, including plenty of product placement...

The Little, Brown Company gave Mr. Isaacson a cool mil to head off on this adventure. Is there even a slight possibility some extra excitement was thrown in? A few "strategic" photos snapped? After all, you have to give the reader what they want, and they want real life DRAMA. The endless supply of reality TV shows gives a good bit of credence to that fact. Again, from Mr. Pietsch:

"Our usual response is, ‘Go have the adventure, and then we’ll decide'...[but]...regardless of the outcome in Mongolia, we thought he would write a very moving and interesting and dramatic book.”

I suppose it appears that I'm questioning Mr. Isaacson's integrity, and I guess I am in a way, but how much pressure was he under when the publisher expects a "moving and interesting and dramatic" book? There's no way to predict that an severely autistic child would have a marvelous adventure flying to Mongolia to have strange experiences. Is it possible? Sure. Best-seller material? Apparently. A cure? No way.

Mr. Isaacson says that if someone had written a book like this when his son was first diagnosed, he would've been reassured - that he would've liked to know that a family with an autistic child could still have "adventures." Good god, isn't life with a kid like this terrifyingly adventurous enough for someone? It is for me. I long for peace and quiet and calm. But that's just me.

I'm not the only skeptical party here - right in the article a mother reacts to Isaacson's careful avoidance of the word "cure," substituting "recovery" and "healing," which, of course, mean TOTALLY different things altogether. The mom says that it's hard to know if the trip, the horses, and the shamans were the reasons, or if his improvement could be attributed to natural progression (which DOES happen). She also said, "To make this story more engaging, it has to be portrayed as something miraculous and fantastical, because ordinary, everyday, slow-plodding progress does not read so well..." She's right...or is she?

I'm writing about our everyday, ordinary struggles, and many of you seem to appreciate that fact. This, the blog where I put my thoughts, fears, hopes, and, yes, Stephen's progress, is REAL. There's no magic here. I want to share our story...but there is no sunshine being blown up anyone's...skirt...here.

Mr. Isaacson is also very careful to say that this was merely what worked for HIS son, and his family. "You don’t have to get on a plane and go to Mongolia. It’s just that our particular story was that." Yes, indeed. But there are still families cashing in 401K's (well, if there's any money left in them) so that they can retrace this journey, so they, too, can gallop toward hope. More snake oil is being sold here...the false hope that is so rampant and which I've touched upon when mentioning the book by Paul Offit. The publishers are marketing this book like crazy - a book tour and all the trimmings. The brochure describes the book in a way that will appeal to a broader group - "the adventure and optimism of ‘Three Cups of Tea’ with the powerful connection between man and animal that readers loved in ‘Marley and Me.’ "

Marley and Me? I actually chuckled out loud at the mention of that oh-so-precious story about that loveable scamp, Marley - it is such an obvious tie-in to this topic.

One bookseller was sold after seeing the cover which is reportedly a "triumphant" picture of Rowan on horseback on the Mongolian steppe. I mean, what's not to like, she wonders: "It’s inspiring and uplifting and it’s about horses." A formula for success!

I dream of finding a way to tell this story of my heart, which sometimes pours forth in gentle streams but more often in painful explosions. And it'll be realistic and down-to-earth and about a little boy and his family. If you want to read about horses, pick up Black Beauty.

The 4'10" Tyrant

This is the worst time to try to sit at the computer and write but I fear a complete collapse is imminent if I don't write, in between cleaning off DVDs, pushing on Stephen's head, and trying to figure out what in the hell I'm supposed to do with him all day.

It's only 8:53 a.m. and I already feel like I've descended into the fifth circle of hell.

I don't know WHAT is going on with this kid, but he is impossible 99% of the time lately. He used to be content with playing and watching videos and looking at books and playing with stuffed animals, and now he is a malcontent.

I am so angry.

I am so sick of not only trying to keep him calm in the evenings, but for 48 hours (well, minus sleep time) every weekend. On top of worrying about him, I worry about how upset he's making David and Kerry, and right now it's more than I can stand. Every whiny cry, every groan, every footstomping fit makes my nerves jangle into a mass. Sparks fly out at intervals and I feel like my brain is short-circuiting. But it can't because somehow I have to figure this out.

I can't find time to work on his schedule because if I pull out the materials Stephen will start picking out every location in the pictures and wanting to go there.

I hate this so much.

Just now: "Heh-shoos."

Me: "Later."

"Friesburgerdonaldshungry." It's 8:59 a.m.

"Later."

I am lost. I am so damned tired of carrying all this around, and trying to find solutions where none seem to exist.

David said last night, "How are we supposed to live this way, day after day?" I have no answers. I only know that every choice seems impossible. So if A + B = impossible, and B + C = impossible, and every other equation yields the same - then what? Picture my head flying apart like a clock that's been wound too tightly... *SPROINGGGGG*

And now, a mere TWO MINUTES after his demands, Stephen grabbed a book and happily trotted off to his room, as if nothing is amiss. I hear his delighted coos as he "reads."

But see, that's the thing. How long will it last? We all sit on high alert, not even able to find peace in the milliseconds in which it occurs. Exhaustion doesn't even begin to cover it.

I have people who have offered to talk about this, and I intend to try to take them up on their offers to listen...but right now, it's all just too much.

David's playing music now...Coldplay, "Lost." How appropo. A snippet of lyrics, "You'll be lost...every river that you try to cross....Every door you ever tried was locked." I'm in a circular room, the walls filled with doors. Each door is labeled. "Calm." "Peace." "Happiness." "Contentment." "Normalcy." "Fun." And they mock me with their gigantic, cartoonish padlocks and miles of chains holding them closed.

My brain is overrun with picture symbols as I try to figure out how to plot Stephen's life on paper, then laminate it and velcro it to a board. Will it all be for nothing? How do I use cute pictures to teach him that some DVDs will skip straight to the menu if you press that button, and some won't? Ha. And that's just one of the things that sets him off. How do I teach him with squares on a board that you don't get McDonalds at 8:00 a.m. on a Saturday? So perhaps you see the dilemmas I'm dealing with here...

Well, my breathing has returned to normal after two episodes of feeling my chest compressed like someone's sitting on it. The pain that is physical-yet-emotional has subsided, and Stephen is laughing in his room. I will mentally put one foot in front of the other. That's as adventurous as I can manage right now.

He's back at his DVD player. I cleaned the filthy disc with the bottom of my t-shirt, and we'll see if this disc works in a way that suits His Majesty, who rules with the cutest little iron fist you've ever seen. We, his jesters, his chefs, his royal guard, and I suppose I'm also his lady-in-waiting or something, will hope that things today can somehow suit His Highness and his hair-trigger temperament.

We cower and await his instructions.

Man, do I have hissues

Nope, not a typo. I have hissues. Or possibly heh-shoos.

It's not often that I roll out posts a day apart, but since the inside of my head has been upgraded (downgraded?) from a tumbling clothes dryer to a category 4 hurricane, I figured I'd best get myself back here and let it go.

Yesterday, as you recall, I noted my envy of the Ramblin' Man with a bit of wry amusement. Today on the way to work David and I were behind a truck pulling a rather large fishing vessel bearing the charming moniker "Happy Hooker." The "h" in Hooker looked like a fishing rod and reel and isn't THAT just the cleverest? "Come on, guys! Everyone jump on the Happy Hooker and let's par-tay!" Imagine the awkwardness that could bring on at garden parties.

But I digress. I stared at that stupid boat with it's stupid name, and I felt the old familiar bile starting to simmer. Whoever owns that boat must die a painful death, and as soon as possible. I looked to my right...there's a young lady be-bopping to some shitty hip-hop music, no doubt, while she puts on her lipgloss. I hated her immediately. Just ahead and in the right lane there was a woman driving a small gray car bearing a bumper sticker that David noticed just as I did: "Don't let the car fool you. My treasure is in heaven." Well, isn't that just fantastically wonderful and amazing. Forty lashes for you, missy.

Nobody gets to be happy. I don't care if Billy Joe worked hard to buy that damned boat. I don't care that the young lady can listen to her music and put on her lipgloss because it's a free country. I don't care that Ms. Gray Car is at peace and content with her treasure in a heavenly safe deposit box. I look at everyone through my own selfish filter, and I hate people going about their lives, DARING to be at ease, happy, and relaxed. I don't want to hear that other people have it worse than me. (Oh, I know that, but right now I don't want to hear it.) Don't tell me that everybody has issues. (Of course they do.) But I have HISSUES, and those are so much worse.

I mentioned this briefly yesterday, but the saga continues. Roughly a week or so ago, Stephen starting asking for "heh-shoos." We have tried everything. I thought it was Harold-shoes - "let's go buy the Harold DVD." We tested that last night. Nope. We have tried, "All done shoes." "We're home." Nope - doesn't even faze him. When he finally went to sleep last night, I breathed a sigh of relief because 1) I needed a break from all my hissues, and 2) I needed to work on schedules and PECS and stuff. I went to bed exhausted.

This morning Stephen was up before 6:00. I was already up and we got the lights on. He popped in a DVD, and I started getting things ready for the day. He was lulling me into a false sense of security. I sat down on the couch to turn on the TV, and he plopped down in the recliner beside me.

"Heh-shoos."

Great God in heaven...WHAT IS HE SAYING? I said, "I don't know."

"HEH-SHOOS. Heh-shoos. Heh-shoos!"

With weariness oozing out of every pore I said, "We'll put on shoes in a little bit and go to school."

"NO NO NO...no no no...."

See...I'm not GETTING it, and he knows I'm not getting it. He seems to say this only when I'm around.

"Heh-shoos. Heh-shoos...heh-shoos," like a little rapid-fire machine gun. I stood there dumbly, sort of mumbling, "I don't know. Shoes in a little bit....I don't KNOW what you're saying. Show me. Hissues...I don't know..."

And the crying began...rocking in the recliner almost violently, demanding that I "Push, please" on his feet.

David got up, and got Stephen calmed down (thank you) and he finally went back to his DVDs. Kerry got up, ate breakfast and got ready for choir. David and Kerry left and I went to the bathroom to get ready. As I walked into the room, a boulder landed on my back. I sank to my knees on the bathmat.

I didn't even realize I was crying until I noticed the wet spots forming on the bathmat - dark green spots on a mossy green background. In a strangely disconnected way I found myself noticing wonderingly that the tears seemed to fall in the same spots each time. "So they follow a path down my nose and drop down on those same two spots on the rug..." Jeez...how many times can my thoughts divide themselves before all the king's horses and all the king's men can't put them back together?

This "simple" conundrum - trying to figure out this tiny little two-syllable phrase - bores into my consciousness, piercing into the very soul of the matter like some gazillion watt searchlight. My child is trying to talk to me, and I can't understand him. He's not a little baby who can be coddled and cajoled with a cute rattle, yet he IS a litttle baby who can't tell me what he wants. I can't tell him no or yes or later because I have no idea what he's asking.

It's the perfect illustration. It is the whole sum of it all. My child might as well have been dropped off on my doorstep by someone from another galaxy, or, even better...we were picked up and taken to his planet. He speaks a language all his own, and my translator is broken. I don't know what goes on inside his head, or what pains he feels. He may be asking for the simplest thing in the world, and all my prattling on about shoes is driving him as mad as it's driving me. Someday I hope to look back on this and laugh. Yeah.

Ironically I got an email digest from an autism group I joined on Yahoo, and it contained the heartwarming "Trip to Holland" story that I used to hold so near and dear (http://www.our-kids.org/Archives/Holland.html), back in the early days of autism when Stephen was 2 and life seemed manageable. We might've started out in Holland, but our itinerary moved on to other foreign and bewildering places around the globe, and now we live on Omicron Persei 8, and I hate it here.

So, baby boy, you're right. Boy, does your mama have hissues.

Ramblin' Man

This is going to be short and I wish it could be longer, but I am swamped at work and can't just jump into the zone and let it all come rushing out.

However...I needed just a minute to get some thoughts out, and this seems as good a place as any.

This morning as I waited at a traffic light to get on the interstate, I saw a homeless man walking down the exit ramp, a bag slung over each shoulder. He moved slowly through the cool morning air, paying close attention to the construction going on at this particular part of the interstate. He was dressed fairly neatly, with a rather jaunty fedora-style hat perched on his head, and he looked pretty clean. (Either this traffic light is very long, or I have really developed my powers of observation, no?)

My stream of consciousness, transcribed as accurately as possible: "Poor guy...wandering along. Wonder if he used to work construction, he seems interested in this stuff...walking through all that mud. Yuck. He's ambling - not often you see someone just amble along. He has no place in particular to go today. Maybe he's mentally counting his money to see if he can spring for an Egg McMuffin. He can do whatever he wants today. Nobody's waiting for him. Nobody can really tell him what to do or where to go..."

You know, you really should start to question your sanity when your compassion for a homeless man morphs into some bizarre kind of envy.

I'm being extreme (of COURSE) but there was definitely a part of me that envied the homeless guy. Of course I value my roof, food, warmth, and family. But I get so TIRED of planning, planning, planning - and still I live in a symphony of confusion and tension. At Stephen's recent IEP meeting, we got a lot of encouraging information for which I am very grateful - it sort of softens the blow from last week's results - but I also realized that we have got to micromanage his life even more...get more schedules going for home, for going out on errands, for understanding that he can't pitch a fit every day when I come home from work. My feet feel leaden walking up the stairs every day, wondering when the endless cacophony of "open?!!? friesburgerdonaldshungry???!!! heh-shoes (I'm clueless about that one)" will begin.

There is much more to say but the paperwork is piling up on my desk. I did catch the newest "Jenny McCarthy and her entourage on Larry King" episode Friday night. Don't even get me started.

But maybe this little entry will help me get through the day, and keep me focused on what I CAN control (which seems precious little). More schedules, more pictures, more social stories...a lot of work for a little boy who runs the show, in hopes that in ordering his life more precisely, the other three of us might find a life underneath all the clutter and noise and stress. We've been told that Stephen shouldn't be allowed to "run" our lives, which in theory makes perfect sense. "Easier said than done" would be my oh-so-original retort to THAT jewel.

For now, I'll put away my thoughts of walking off into the sunset, and banish the loop of "Ramblin' Man" that's been cycling through my head. But here's a promise: the next time I get the urge to tie my belongings up in a bandanna on the end of a stick, I'll be back.

Answers?

I don't want to write this.

In fact, even as I type, I still don't know if I'll put it out there. Deep down I know I'll probably click "Post," but for now, this needs to feel like a place to say whatever is brewing inside my head. It's a case of needing to get it out or else continuing to crumple up into a useless ball of nothing. I've been steadily shrinking into myself since yesterday, and that's gotta stop.

So here goes.

We got results yesterday from all the testing and screening and evaluating at the Sparks Clinic. And I was prepared to hear how much Stephen was lagging in speech (as I mentioned from the preview we got a few weeks ago). I was prepared to hear that his fine motor skills were poor. I was even ready to hear how "cognitively impaired" my son is...what I was NOT prepared to hear was that the opinion and general consensus of the team was that Stephen falls into the category of mental retardation. Severe. Severe mental retardation and autism... They even asked if we had had genetic testing done, specifically in regard to Fragile X, a genetic condition that can manifest itself in both autism and...the other thing. Why hasn't any doctor ever asked us this? Why didn't someone insist we have testing done? If this is truly an identifiable genetic condition, we could've saved money, sweat, tears, and stress in regard to all the DAN! bullshit.

The really weird thing here? A while back, David and I were discussing the need to have these evaluations done - how we hadn't had a definitive update on where Stephen falls on the spectrum, and David even mentioned that Stephen could have some MR (I can't even make myself type it out again). I bristled at the notion, and reacted quite mother-bearishly at the concept. I remember very clearly spitting out, "And what good would knowing THAT be?" And David calmly said, "Look...we need to know everything. The people who work with him need to know..."

Of course he was right. So, this isn't a new idea. Why did it shake us to the core of our being to hear someone say it? I suppose it would've been strange NOT to react in such a way. The more I think about it, the more I realize that part of the problem for me stems from the traditional "labels" - someone being RETARDED, you know...the kids in that OTHER building at school - even kids nowadays tossing out, "Oh, you're such a RETARD!" That's not my son. That's not Stephen. I sound so very PC, and I don't mean to...but right then, all those thoughts were coming at me like missiles. At that moment, I shed a tear or two, but the aftershocks grew worse throughout the evening. The idea that this could be genetic, and all the implications thereof...it's Fragile "X" - meaning, it would've come from ME. What would it mean for Kerry and for his future children? I was overwhelmed and sad and empty.

Stephen stayed up past 10, and I was absolutely pining for some solitude. I told David how desperately I needed to decompress...finally I went to our bedroom, put on headphones and listened to David Gilmour's last solo album, "On An Island" - beautiful, soaring, soulful music. I flipped through the lyrics booklet and slowly tried to relax. In the tiny pauses between songs, I could still hear Stephen in his room, fiddling with toys and talking to himself, and I would turn the volume up louder, determined to shut everything OUT and let the music fill my head, and the emptiness inside.

But it didn't. As I looked through the artwork in the CD booklet while listening to the music, I saw the images in a new light...ocean waves lapping against a small island, children playing in a creek as their laughter echoed across the water, a lovely couple walking hand-in-hand through the forest...and then, symphonic melody sinking into my soul while a heartrending, passionate guitarist coaxed pure, beautiful sounds from his instrument. I felt my own heart beating dully within my chest, echoing through the void. I wanted to be there, on that island, watching children play who have never heard of autism or cognitive impairment or mental retardation. I wanted to be that couple - in love and living fully in the little joys of life. I wanted that utter peace and simplicity...so much that I felt a physical ache.

Nothing we heard yesterday changes anything, not really. Stephen is still our child, our baby. Kerry still needs two strong parents. We need each other and the combined strength that comes only from a unified front. As one of the psychologists said, "After all, these are just numbers on a page. We can't accurately test kids with autism sometimes...you know your child better than anyone..." All true statements...We'll move on. Stephen will learn and grow. He'll make us laugh and he'll have us tearing out our hair. We'll continue to think pragmatically about the future, and hope that answers lie around the bend in the road. The path has wound around in a labyrinthine fashion up to now...lots of legwork resulting in very little forward progress. It has taken us through the darkness - momentary glimpses of light seem like only tricks of vision, at least at times.

This is a hard life. There's just no other way to put it. No matter how many times I'm told that things will work out, I will always carry these scars, as will we all. Being able to tell this story, one vignette at a time, helps. I will continue to write, to talk, to cry, to rail against the injustices I feel. It's the only way.

Somebody to lean on?

So…support groups. Apparently they don’t really exist and are an urban myth; a scam perpetrated by well-intentioned but CLUELESS people.

About five years ago I went to a combined autism/Aspergers support group, and found that almost everyone there fell into the Aspergers side of things. As hard as I tried, I couldn’t relate to their problems – “My son will NOT stop talking about the flags of countries around the world.” “Well, my daughter can’t understand what personal space is…I’m so tired of my tennis games being interrupted when the nanny calls to complain.” So, you get the picture. There was a separate respite care program run out of the same location, and Stephen seemed to do okay there, but after a few meetings of the “support group,” I decided that it wasn’t for me, and we stopped going.

So, in the interim time, I’ve found support in many places – friends, family, even co-workers at times, and I’m grateful for it – but it just never quite filled that space inside me. That place that cries every day with the chronic sorrow of having this wonderful, terrifying child…unless you LIVE with that, you don’t understand, and you can’t. It’s just not possible. I have yearned for another mom to talk to – someone who knows how the search for extra-large but absorbent pull-ups can dominate your life; someone who GETS the fact that hearing a stomach virus is going around at school practically brings on a nervous breakdown because you just can’t deal with your kid getting it and then vomiting anywhere and everywhere; a mom who knows the heartbreak of seeing her child get more and more overweight and feels powerless to fix the problem…

Last fall I heard that the autism/Aspergers group had split, I felt some hope. They took some time off for the holidays, and I waited to hear about the next meeting in the new year so I could FINALLY go and get connected. By the time the group had reconvened, they had been recombined.

I got the emails announcing each month’s topic, and month after month I realized that none were relevant to us at this point in our lives. But last month, the subject matter caught my eye: “We’ll be hearing about summer programs, and we’ll also have some time for parents to talk and help each other out with problems…” This seemed promising, so, I called up the respite provider, signed Stephen up, and made my plans to attend the Friday night meeting.

I was still skeptical, though, in my cynical way…and I came pretty close to flaking out after I got home from work last Friday. I thought about how nice it would be to change clothes and do nothing. But, I told myself that I couldn’t keep complaining about the lack of support if I didn’t go out and look for it. So, I packed Stephen up, we went to McD’s, and headed for respite care/meeting.

He went in fairly willingly – the room was much like a schoolroom (in fact, it’s in a church so it’s a Sunday school room, I guess). There were a few kids there with various types of issues, but Stephen seemed fine. I gave a few instructions to the very capable lady in charge, along with my cell number, hugged Stephen, told him I’d be “right back.” He replied “Back…” and went off to explore the room. I went down the hall to the support group meeting.

I met the leader of the group, who recognized my name from her email lists, and talked to her for a few minutes about why I had stopped coming years before, etc. She seemed to really sympathize, and we talked for a few minutes about the HUGE chasm between autism and Aspergers. My cynicism meter dropped a notch as I took a seat at the table, had a cookie, and waited.

The meeting started with a presentation given by a local parks and recreation director who’s in charge of a “special needs” after school and summer program. The longer she talked, the further my mind slipped away. “If your child really wants to be on a swim team, we can help you deal with issues that might come up…or, maybe your daughter wants to take ballet but feels uncomfortable in groups…your son might want to participate in volleyball but the noises in the gym are difficult to handle…” This went on for 30 minutes. People asked questions and the very enthusiastic lady answered them.

Part two – a representative from a local autism/behavioral treatment center talked about the summer camps they’d be offering – “We’ll have lots of fun themes – maybe we’ll do karate one week, exploring space the next week…” Fun, right? Oh, and the only stipulations for children attending this center? They can’t need one-on-one attention, and they must be potty-trained.

All righty then. Zero for two.

But by then, the parents around the room were enthusiastically regaling everyone with how well their son/daughter/grandchild does at this center, how great the staff is, blah blah blah. The leader of the support group said, “Well, thanks to everyone. I know some of you had some issues you wanted to discuss…” I was mentally rubbing my hands together – now, this is what I came for…

One mom said, “Yeah, I had a question for the person from the center…what if my typical child wants to come to camp with her brother? They’re so close…” and as the question was being answered by the center’s rep, I thought, “Wow, I feel so bad for you…” UGH!

After that, there was a brief pause…I waited for another chatty person to speak, and as I was taking a breath to ask a question, the group leader clapped her hands, and said, “Okay! Thanks to our presenters, and thank you so much for coming!”

WHAT?!!?!???!

I sat there in shock. People were gathering up their things and LEAVING. I stood up, tears immediately running down my cheeks and said, “WAIT!...Wait…is there ANYONE here whose child is NOT high-functioning?” I looked around at the group of 25 or so. Silence. I was either met by blank looks or the tops of peoples’ heads as they suddenly became fascinated with their footwear. I said, “Is there NO ONE here whose child is like mine?” I pointed to one lady and said, “Ma’am, I’m sure your child has issues, but I can’t relate to her dream of riding horses and competing!” I looked at another woman, “And your son, who wants to be in a THEATRE group? My son still wears a DIAPER, and he can’t TALK to me!” I looked around. “I’m not diminishing your issues, but I cannot relate to ANY of you!”

People started muttering and then talking amongst themselves and some were very uncomfortably sliding toward the door. After some awkward glances in my direction, most people left. I stood there rooted on the spot. Two women finally felt bad enough for me that they came up to offer a bit of sympathy, tempered with “Yes, our kids are considered high-functioning…but when we first came to the group they weren’t doing as well…so we can sort of understand how you feel.” One of them handed me a slip of paper with the URL of an online support group for our area. I have joined, and will contribute if I can...but a great deal of my "social life" is on-line - I want a real live person to talk with about this stuff. They assured me that there WERE parents of other more seriously autistic kids online…I wondered aloud why they weren’t at the meeting (because some of their kids were in the respite room – I saw them!) and they said that it’s hard for them to get out, etc. I said, “Well, that’s what the respite is for, right?” They said, well, yes… “Maybe they’ll come next month!”

Yes. Maybe they will.

Will I, though? I told the leader of the group that I was disappointed, and she seemed to understand. I told her on the survey I filled out that I’d be glad to be in touch with other parents whose children were more similar to Stephen, and let them know that I would come to the meetings…beyond that I’m not sure what else to do.

I drove home in tears. I got home and told David about it, and cried some more. It seems that everything requires a fight, a struggle, a battle of some kind. I have been searching and fighting and looking for resources since Stephen was two years old. Yes, I’ve found a lot of help. David has researched and read and studied. But it gets tiring, you know? Always looking and looking…

I have found some new sources of support and contact via Facebook, which is great. However, the local support group scene turned out to be much, much ado about nothing. The respite care might come in handy in the future, if we wanted to take Kerry to a movie or something, so there’s that.

Wearily we go on. The quest continues.

In other news...

I finally jumped headlong onto the Facebook bandwagon after no less than 10 people said, "Are you on Facebook?" and now I'm wondering why I waited so long.

So welcome to the new, old friends who might have found their way here via FB. Reconnecting with you guys has brought a new spark into my life, and for that I'm grateful. Those of you who have sent me messages of sincere sympathy and understanding have given me a gift - thank you so much.

Before I forget, I wanted to post an update on where we stand as far as the evaluations we've been having at the Sparks clinic(s).

We spent last Wednesday at Sparks - a full day of testing and talking with some of the professionals there. We began with an occupational therapy assessment - David and I watched for a few minutes through the 2-way mirror, but I could see that Stephen wasn't engaging so we went into the room and I tried to help get him focused. He did fairly well on a few of the tests, again, especially matching block towers. His pencil control is poor, and he only did moderately well with repeating patterns or shapes. He continues to be enraptured with the huge mirrors in the rooms, and did a bit of preening in between tests. We talked extensively with the OT about some of his sensory issues, and she took a lot of notes. Hopefully all of this testing will get effectively condensed and synthesized for us - that's the whole point of jumping through these hoops.

After OT, he had a speech assessment - there wasn't as much of a connection with this particular therapist, and he didn't perform very well. While we talked to her, she constantly interrupted us to say "Yes, yes!" like she knew what we were going to say before we finished. That got old. Again I felt that sharp stab as I watched him struggle to express or understand very simple concepts. She would say, "In this picture the cat is ON the chair. Where is the cat in THIS picture?" It would be under the chair...and Stephen would look at her blankly. He didn't get that - not even remotely. She pressed on, and he repeated a few words, identified a couple of objects, but overall was not into this test at all. She told us that his preliminary results put him at about an 18 month level for both expressive and receptive language. I had guessed he'd test at about 2 years old...but either way, David and I looked at this precious boy, who was by then over in the corner playing, and the sorrow washed over us in a wave. This lady wasn't telling us anything we didn't already know instinctively, but hearing things in cold, clinical terms drives it all home. This five foot tall boy is like a baby. Here it is, laid out for you on this chart.

We had lunch at McDonalds, which of course was a highlight, as you all know - Stephen loves his burger and fries. And, we went back to the clinic. The next thing on the agenda was to meet with the "social worker." I put that in quotes because I still haven't quite figured out why he's called that, and also neither David or myself ever really understood what his purpose was in this whole matter. What follows is a brief paraphrase of our "meeting" with this pale, soft-spoken man in his sixties:

SW: "So...I understand that you suspect that Stephen might have autism..."

I kid you not. That is what he said. David and I looked at each other.

Me: "Umm....no....actually, we KNOW he does. He was diagnosed 7 years ago..."

David and I are thinking, "What the HELL?" I see it written on David's face and know it matches my own.

Me: "We're here to see the autism specialist, once a space opens up. We also wanted to have Stephen evaluated in all the other areas of development, and meet with the nutritionist...You see, Stephen was tested in these areas when he was 2, and we'd like to see where he falls on the spectrum now, and so forth...I've told about three people this stuff already."

SW: "Ahhh, yes...okay, okay..." Now, keep in mind, Mr. SW likes to nod and say "Yes, yes, okay, okay" in between approximately every third word that comes out of my mouth...even more annoying than the speech therapist. What IS it with these people?

David finally said, "I have to ask...exactly why are we meeting with you?" I had to stifle a laugh...not only did this seem like an interview that should've happened at the beginning of this whole process, but this man was like a doddering old uncle - trying to get things straight, and constantly chorusing, "Yes, yes...okay..." till I wanted to scream.

SW: "Well, I'm here to just kind of, you know...see how we can help you, and just, you know, bring things together and so forth..."

Me: "We need summer services. We need respite care. We need help with behavioral problems. We need to think about future planning, for when he's bigger than we are - finding out what options are out there..."

SW: "Okay...yes, yes..."

Me: "AAAGGGGHHHHHHHHHHHHHHH!" Well, not really, but I wanted to. "So, that's why we're here..."

What was supposed to be an hour long meeting lasted 20 minutes, and we shook hands on the way out - need I even tell you how cold and pale and fishy Mr. SW's hand was? *shudder*

The last thing on our schedule was meeting with the nutritionist. We managed to get Stephen on the scales, which I consider an accomplishment. He wouldn't stand under the thingie that measures height, so at one point we caught him standing against the wall, and she made a mark on the wall to measure. (Necessity is the mother of invention, you know.) We talked extensively about Stephen's diet and his nutritional needs - she wasn't overly concerned about his weight (130 pounds) because she said at his height (about 5 feet tall) that she thought he'd grow into his weight if we can keep it steady for now. She wanted us to add some calcium since he doesn't drink milk, and suggested Tums Smoothies. Since Stephen will actually take a children's chewable multi-vitamin, she said adding the Tums would be "no big deal."

Ha! I already knew how this would turn out, but I smiled and nodded. We went through her extensive list of food questions.

N: "Does he eat meat?"

Us: "McDonalds cheeseburgers and turkey hotdogs. That's it."

N: "What about chicken?"

Us: "Um...no, that was it."

N: "Okay, what about fruits - apples?"

Me: "No. No fruits."

N: "Bananas?"

Me: "Um...again, NO fruits. No vegetables. Well, except tater tots and french fries."

N: "Corn?"

Me: "No."

And on and on. Finally, she reminded us about the calcium, told us that his excessive intake of carbs probably isn't the cause for the massive amounts of gas the poor child generates (more likely it's due to his speed-eating and not chewing very well), and that she would be meeting with the team to give further recommendations.

And that was it...another long day, and we were all tired. We walked out to the car, and Stephen seemed happy enough. We'll go back in a few weeks to get the bundle of results and suggestions, and hopefully more resources.

Guess who we get to meet with to obtain all this information?

The cold, fishy-handed social worker. *shudder* This better be worth it.

One thing that hit David and I both pretty hard after the last few weeks was the notion that someday we might not be able to take care of Stephen full-time. We're trying to be realistic, but it obviously puts a damper on life to think about sending him away - even in the distant future. Neither of us want Kerry to inherit Stephen's full-time care, and we'll make sure that doesn't happen. But looking at Stephen now, as a boy, it is nearly impossible to contemplate. David put it best: "Who would take better care of him than us?" and for now that is absolutely true. At night when I'm getting him ready for bed, part of his routine is to ask for "tickles" on his back. I stand beside his bed, and he leans against my stomach as I scratch his back for a few minutes. It's a quiet, sweet moment and I inevitably think, "I don't want someone else doing this..." And for now, no one else will. What the future holds I have no idea. We're determined to be pragmatic but optimistic.

In the meantime, we've been on a fairly even keel lately. Both the boys have had colds but so far nothing major has developed. I'm not ready for Stephen to have another cough-till-you-puke thing going on.

I'll be back to report our findings after our meeting with...you know, that guy. *shudder*

(Oh, and Stephen won't take the Tums. Told ya so, lady!)