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.
Thursday, November 5, 2009
Thursday, August 20, 2009
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.
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.
Sunday, July 12, 2009
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.
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.
Saturday, July 4, 2009
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...
Friday, June 12, 2009
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.
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.
Monday, May 25, 2009
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...
Sunday, May 24, 2009
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.
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.
