I am sure I am about to encounter a MEAN person. Someone is going to spit on me or knock me in to traffic or something. It's not only statistically probable, but I am about to jinx myself horribly.
Because I am about to tell you that we've been on a journey to the East Coast, and every step we've travelled we've encountered friendship, kindness and NICE people.
J and Rooster sat in a row of three, and Peaches and I sat in another row of three. Halfway into the flight, when J wrestled the boy to the restroom, I leaned over to the woman in the third seat of their room. "I just want to say how much I appreciate your tolerance," I told her. "I never know in a situation like this if I should start out by explaining that my son has special needs, or just let things unfold... but clearly you have seen that he has special needs, and I want to thank you for how nice you've been about his behavior. This flight is hard for him." She not only asked me all about autism, but she works in health insurance in Alaska and had many questions about ABA. When I told her that it has been a lifesaver for us, she wondered how they could recruit more ABA providers to Alaska.
When we got to our rental house, it was late, and dark, and the lock box would not open. The cab driver helped us for many minutes, and helped me keep my wound up kids from running into the street.
We are here so I can attend a conference in Washington, D.C., and getting this far provided us more than enough challenge. So my mother and step dad came to meet us, getting up before four a.m. and riding five hours on the train so we didn't have to go to them. They have put up with much inconvenience and little by way of adult entertainment. On top of that, my college roommate and dear friend who lives in Maryland agreed not only to drive the hour to visit us with her husband and two kids, but they brought with them a cooler full of lunch foods (ceviche too! yummm) and beer, and loads of toys to share and occupy the kids. We hung out for several hours, and while my kids occasionally threw tantrums and needed time outs and hit, her kids regularly forgave and shared and engaged. And, the niceness continues...
Like, right now, a childhood friend I found through Facebook is driving three hours to come catch up tonight after 20 years! A dear college friend who lives in town works for a museum, and just wrote to offer to comp us tickets. My colleague from work arrived to attend this conference too, and, having lived here previously, she has navigated us, escorted us, shared Metro passes, and voluntarily took the basement bedroom at our shared house. Even more, she has tolerated my endless worries about my kids. This trip? It stirs up alllllll the reasons to worry. Yeah, I know, we're taxing my son beyond reason, that we're pushing all his buttons, but later I will have to post the photo of him throwing his body in anguish on to the concrete steps of the entrance to the Smithsonian because I wouldn't buy him a $100 space suit. I wish I had captured on video my husband's reaction when the guard came out of the museum to tell him, VERY politely, that he was sorry but he couldn't let the boy lay on the steps. J said, "Great. Tell him that."
Honestly, though, J has been the nicest person of all on this journey. He has the kids all day while I'm at an amazing conference, stretching my brain, meeting interesting people, having fun. He has them in a kind of funky house in a kind of remote neighborhood of a hot and sometimes rainy city full of mosquitoes. He has been up at night with the boy's mixed up body clock on alarm mode. He has been living with his inlaws, who are wonderful, but who snore just a bit...
I fervently hope I don't push J past his limits, that he isn't the one who spits on me or pushes me into traffic!
Monday, June 29, 2009
Thursday, June 25, 2009
The Goodbye Hello Window
So I find myself back in front of the same window. I've had a complicated relationship with this window for two years. Sometimes I stood in front of it and cried. Sometimes I've snuck peeks through it when no one was looking. Sometimes I've gone to crafty lengths to avoid it. Through it I watched my son on the preschool play yard. I have watched him walk the perimeter of that space in self imposed isolation, I have watched him throw his body into the sand in wired/tired moody fits. I have watched him hit, fight with other kids who had no idea what to make of him. I have seen him teased, mocked. I have watched him shake his cute thing to High School Musical, with a teacher, or with his best gal pal, or with his "shadow," or all by himself. I have watched him laugh, hug, play, and be loved.
And for two years, I often left that window and had to remind myself to look in another -- his sister's.
I love my children with equal ferocity. I care equally about their schooling. Fair isn't giving each child the same things though, it's giving each child what he or she needs. Peaches has not needed me staring longingly through her window.
Now I still pass his window frequently on my way around campus, and, for the third year running, I do stop and look sometimes, only he's not at this school anymore; he was not invited back. Instead, I look through, and I see my daughter. So far I always see her playing happily with all her friends. Watching her this week, seeing her on that too familiar yard effortlessly playing where he brother had experienced so many highs and lows, I suddenly had to duck into a closet for cover when I found myself more shaken than I had ever been in front of that window.
You can't compare. You can't measure. I wasn't THINKING anything when I melted down. It just happened, that same illogical emotional kind of surprise I get when I watch a remarkable piece of theatre or the Olympics or something. I saw my daughter holding hands with friends laughing and carrying on and my heart had a little earthquake.
Watching Peaches through the window, I thought of the callous, tactless woman who told me, "It's only going to hit you more and more what his challenges are as you watch Peaches develop normally." She is the same woman who told me she was surprised I had another kid after the Rooster. But though she lacks communication skills, I won't deny that seeing Peaches' effortless socialization made me acutely aware of how hard it is for him even now, two years older than she is, to navigate a playground with any degree of social success.
"My" school was not the right school for my son, and I wanted to find him a new school as much or more than the school wanted to see him go. But there is no denying it feels better to leave on your own terms.
I can still see Rooster through my school's windows. He is at the school across the street now, and through certain windows I can see him when he's outside playing on the playground, now there for summer "camp." Mostly I feel my load greatly lightened by the increased distance, the ability to take off one of my hats, the separation of church and state, so to speak. But the other day I did intentionally sneak a peak when I knew he'd be playing outside, to see how he was doing. I saw him with a little girl who looked to be about seven. While I watched, they hugged. Later when I picked him up, that little girl showed me the gap in her teeth, and then said, "We're going to take good care of the Rooster while he's at camp."
One of my favorite John Irving novels uses the phrase, "Keep passing open windows." In the book, it's a way of saying, "Don't jump!" It's a survival phrase. For me, it's also good advice.
And for two years, I often left that window and had to remind myself to look in another -- his sister's.
I love my children with equal ferocity. I care equally about their schooling. Fair isn't giving each child the same things though, it's giving each child what he or she needs. Peaches has not needed me staring longingly through her window.
Now I still pass his window frequently on my way around campus, and, for the third year running, I do stop and look sometimes, only he's not at this school anymore; he was not invited back. Instead, I look through, and I see my daughter. So far I always see her playing happily with all her friends. Watching her this week, seeing her on that too familiar yard effortlessly playing where he brother had experienced so many highs and lows, I suddenly had to duck into a closet for cover when I found myself more shaken than I had ever been in front of that window.
You can't compare. You can't measure. I wasn't THINKING anything when I melted down. It just happened, that same illogical emotional kind of surprise I get when I watch a remarkable piece of theatre or the Olympics or something. I saw my daughter holding hands with friends laughing and carrying on and my heart had a little earthquake.
Watching Peaches through the window, I thought of the callous, tactless woman who told me, "It's only going to hit you more and more what his challenges are as you watch Peaches develop normally." She is the same woman who told me she was surprised I had another kid after the Rooster. But though she lacks communication skills, I won't deny that seeing Peaches' effortless socialization made me acutely aware of how hard it is for him even now, two years older than she is, to navigate a playground with any degree of social success.
"My" school was not the right school for my son, and I wanted to find him a new school as much or more than the school wanted to see him go. But there is no denying it feels better to leave on your own terms.
I can still see Rooster through my school's windows. He is at the school across the street now, and through certain windows I can see him when he's outside playing on the playground, now there for summer "camp." Mostly I feel my load greatly lightened by the increased distance, the ability to take off one of my hats, the separation of church and state, so to speak. But the other day I did intentionally sneak a peak when I knew he'd be playing outside, to see how he was doing. I saw him with a little girl who looked to be about seven. While I watched, they hugged. Later when I picked him up, that little girl showed me the gap in her teeth, and then said, "We're going to take good care of the Rooster while he's at camp."
One of my favorite John Irving novels uses the phrase, "Keep passing open windows." In the book, it's a way of saying, "Don't jump!" It's a survival phrase. For me, it's also good advice.
Wednesday, June 17, 2009
Measuring Up
I believe size doesn't matter, but perspective counts for a lot.
I've written about this before, but here I am again. This is how I work through my stuff, and sometimes I'm a slooooow learner.
Today I used my lunch break to walk over to Old N@vy because Peaches outgrew her bathing suit. After I grabbed her one off the super cheap sale rack and another for Rooster, I noticed that the bargains also applied to suits for grownups. I guess because we just joined the Y and I just lost 10 pounds that had been nagging at me, I decided maybe I too should try to look presentable at the Y. (I know, you can feel the horror, right?)
I grabbed a sky blue one piece first and then thought I'd also try the black tankini kind -- you know, bikini bottom, but might as well be a one-piece once you put on the top? Those appeal to me since I'm about six sizes bigger on bottom than on top! (Sorry, this whole post is one of those TMI kinds, but I have no secrets.)
In the dressing room, I tried on the one piece first -- a size large -- bracing myself for the fact that it might be too small for me, not wanting to be too disappointed. When I squeezed into it, though, I couldn't help the wave of shock and self-loathing. It was BEYOND too tight -- it was practically a medical emergency. "Well," I thought, "who was I kidding? Of course! Of course I don't fit these clothes! I thought I needed to lose 10 pounds? Thirty more is more like it! What is wrong with me? Why do I have such a skewed perspective? Obviously I need XL, at the very least. I need a specialty store, or tailor made swim suits. I am going to go running tonight. I am going to get serious. I am going to have to face just how heavy I have gotten. Maybe I should think about trying to do The Biggest Loser." I nearly cried.
So it was time for the tankini. I had grabbed a medium top and an XL bottom, but now even the XL looked minuscule. With a deep sigh and a sense of foreboding, I hesitantly tried the bottoms.
They fell to the floor. They were too big.
Now, of course, you know, this is not a story about bathing suits. And you know I have been down this road before. It's not that I care so deeply about my size or anyone else's -- it's how hard it is for me to see really with perspective. I suck at perspective again and again in all kinds of circumstances, more with the Rooster than with anything else. This dressing room just exemplified my weakness. My first instinct had been that because I'm such an idiot with perspective I didn't realize my weight problem. But then...
I picked up the first suit, the too tight one, from the floor where I'd abandoned it in horror when I thought it represented my failure to grasp my own weight issue. I hadn't yet put it back on the size large hanger. But the tag on the suit didn't say large, of course. It said XS. Extra small.
Yeah, I'd say XS would be too tight for me. Ever since I was about six.
Never once have I been a skinny girl, it's true, but what happened to me when I thought the Large was too small really shows that my "weight issue" is partly a mental problem... my perspective is what is truly the wrong size. My eyes might struggle with estimation, but science tells me this fact: If I do lose another 30 pounds, I'm going to be in a hospital. There is absolutely nothing wrong with needing to lose 30 pounds. I would argue that there is something substantially wrong with not being able to look at yourself and know what how big or small you are, to make guesses that are wildly off base, to rapidly swing between feelings of accomplishment and feelings of failure.
And, of course, this is how I get with autism, too. And that's what I've been thinking about all the rest of my day.
Yeah, like many women I know, I'd like to be kinder and more accepting of my physical appearance, but that's nothing compared to how deeply I long to gain some autism perspective. I really want, really need, really must find a way to be more at peace with autism's impact on our family no matter what size it is, no matter how it compares with anyone or anything, no matter how anyone else measures our accomplishments.
Because success or failure can be relative. But locking yourself into a small space and looking into a mirror to find anxiety, criticism, and confusion staring back at you and screaming all kinds of fun house distortions really makes you -- I mean ME -- the Biggest Loser.
I've written about this before, but here I am again. This is how I work through my stuff, and sometimes I'm a slooooow learner.
Today I used my lunch break to walk over to Old N@vy because Peaches outgrew her bathing suit. After I grabbed her one off the super cheap sale rack and another for Rooster, I noticed that the bargains also applied to suits for grownups. I guess because we just joined the Y and I just lost 10 pounds that had been nagging at me, I decided maybe I too should try to look presentable at the Y. (I know, you can feel the horror, right?)
I grabbed a sky blue one piece first and then thought I'd also try the black tankini kind -- you know, bikini bottom, but might as well be a one-piece once you put on the top? Those appeal to me since I'm about six sizes bigger on bottom than on top! (Sorry, this whole post is one of those TMI kinds, but I have no secrets.)
In the dressing room, I tried on the one piece first -- a size large -- bracing myself for the fact that it might be too small for me, not wanting to be too disappointed. When I squeezed into it, though, I couldn't help the wave of shock and self-loathing. It was BEYOND too tight -- it was practically a medical emergency. "Well," I thought, "who was I kidding? Of course! Of course I don't fit these clothes! I thought I needed to lose 10 pounds? Thirty more is more like it! What is wrong with me? Why do I have such a skewed perspective? Obviously I need XL, at the very least. I need a specialty store, or tailor made swim suits. I am going to go running tonight. I am going to get serious. I am going to have to face just how heavy I have gotten. Maybe I should think about trying to do The Biggest Loser." I nearly cried.
So it was time for the tankini. I had grabbed a medium top and an XL bottom, but now even the XL looked minuscule. With a deep sigh and a sense of foreboding, I hesitantly tried the bottoms.
They fell to the floor. They were too big.
Now, of course, you know, this is not a story about bathing suits. And you know I have been down this road before. It's not that I care so deeply about my size or anyone else's -- it's how hard it is for me to see really with perspective. I suck at perspective again and again in all kinds of circumstances, more with the Rooster than with anything else. This dressing room just exemplified my weakness. My first instinct had been that because I'm such an idiot with perspective I didn't realize my weight problem. But then...
I picked up the first suit, the too tight one, from the floor where I'd abandoned it in horror when I thought it represented my failure to grasp my own weight issue. I hadn't yet put it back on the size large hanger. But the tag on the suit didn't say large, of course. It said XS. Extra small.
Yeah, I'd say XS would be too tight for me. Ever since I was about six.
Never once have I been a skinny girl, it's true, but what happened to me when I thought the Large was too small really shows that my "weight issue" is partly a mental problem... my perspective is what is truly the wrong size. My eyes might struggle with estimation, but science tells me this fact: If I do lose another 30 pounds, I'm going to be in a hospital. There is absolutely nothing wrong with needing to lose 30 pounds. I would argue that there is something substantially wrong with not being able to look at yourself and know what how big or small you are, to make guesses that are wildly off base, to rapidly swing between feelings of accomplishment and feelings of failure.
And, of course, this is how I get with autism, too. And that's what I've been thinking about all the rest of my day.
Yeah, like many women I know, I'd like to be kinder and more accepting of my physical appearance, but that's nothing compared to how deeply I long to gain some autism perspective. I really want, really need, really must find a way to be more at peace with autism's impact on our family no matter what size it is, no matter how it compares with anyone or anything, no matter how anyone else measures our accomplishments.
Because success or failure can be relative. But locking yourself into a small space and looking into a mirror to find anxiety, criticism, and confusion staring back at you and screaming all kinds of fun house distortions really makes you -- I mean ME -- the Biggest Loser.
Monday, June 15, 2009
The Angry Quiz
In a former life, I wrote quizzes for magazines aimed at the tween set. This will be exactly nothing like one of those. Ready? See if you can guess which part of my day made me fume more than any other, then check your points at the end of this, the ANGRY QUIZ:
1. The sitter was late to pick the Rooster up today.
2. My husband forgot his cell phone.
3. The reason my husband forgot his cell phone, as he explained it to me, is that I helped him by laying out much of what he needed today, only I didn't lay out his phone. I should not do that.
4. When I came home, the Rooster was off his rocker in a way I haven't seen lately; when I turned off the tv just as I told him I would (and he agreed) at the designated time, he howled, wept, and threw his body to the ground.
5. While I spent about an hour trying to figure out the Rooster's bad day, checking into what he ate, when he rested, how much tv he watched, etc, Peaches screamed at me the whole time to put my phone down and pay her more attention.
6. When our ABA guy saw and heard me trying to understand the Rooster's mood, he kindly told me, "It's okay. It's his first week not going to school, being on summer vacation. His schedule is off, and schedule is really important for kids with autism. Tomorrow will be better."
Did you guess which item above sent me into a blind fury, made me nearly grab a kitchen knife? Read on to find out...
Was it:
1. AAAAHHHH. Wrong answer. I knew the sitter would be late, so I told her to be there at nine, knowing the Rooster wouldn't really be done until 9:15. It worked out perfectly. In her defense, traffic does indeed suck.
2. Nope, but good try. While I do prefer to know my husband is accessible when the kids are with a sitter in case of emergency, and we do check in at least a couple times a day about crisis management issues, my husband regularly forgets his cell phone. I can't invest in getting angry about it anymore. Besides, he works in the Tower of Cell Hell. Having an excuse to talk to him on a land line kind of works in my favor.
3. BUZZZZZZZZZZZ. That is just too funny to infuriate me! And I saw it coming.
4. Nobody picked 4 did they? I felt worried about the Roo, and sad, but not angry at him.
5. Sorry. While I do get unjustifiably annoyed sometimes with my darling attention sucker, she is just three. Of course she wants my attention. It ain't easy having a big brother always in the limelight.
6. Ding ding ding ding! We have a winner! Despite all logic, the kind attempt of my ABA buddy to help me understand and be the grownup made me want to hurl us all into a raging volcano. We had just spent two full, hard hours dealing with autism's rages, language impediments, mood swings, potty training deficits, sensory defensiveness, and more, and yet somehow just hearing the phrase "for kids with autism" seemed like the slap in the face I could hardly stand. I effing hate autism, people. I know I'm not supposed to, but I'm really very tired of autism. I wish it would leave my son and I alone so we could play happily with Peaches and their daddy. I don't want to talk about the A word all the freaking time. I want it to go away, or to occasionally be able to at least pretend that it already went.
Does that make me bad?
1. The sitter was late to pick the Rooster up today.
2. My husband forgot his cell phone.
3. The reason my husband forgot his cell phone, as he explained it to me, is that I helped him by laying out much of what he needed today, only I didn't lay out his phone. I should not do that.
4. When I came home, the Rooster was off his rocker in a way I haven't seen lately; when I turned off the tv just as I told him I would (and he agreed) at the designated time, he howled, wept, and threw his body to the ground.
5. While I spent about an hour trying to figure out the Rooster's bad day, checking into what he ate, when he rested, how much tv he watched, etc, Peaches screamed at me the whole time to put my phone down and pay her more attention.
6. When our ABA guy saw and heard me trying to understand the Rooster's mood, he kindly told me, "It's okay. It's his first week not going to school, being on summer vacation. His schedule is off, and schedule is really important for kids with autism. Tomorrow will be better."
Did you guess which item above sent me into a blind fury, made me nearly grab a kitchen knife? Read on to find out...
Was it:
1. AAAAHHHH. Wrong answer. I knew the sitter would be late, so I told her to be there at nine, knowing the Rooster wouldn't really be done until 9:15. It worked out perfectly. In her defense, traffic does indeed suck.
2. Nope, but good try. While I do prefer to know my husband is accessible when the kids are with a sitter in case of emergency, and we do check in at least a couple times a day about crisis management issues, my husband regularly forgets his cell phone. I can't invest in getting angry about it anymore. Besides, he works in the Tower of Cell Hell. Having an excuse to talk to him on a land line kind of works in my favor.
3. BUZZZZZZZZZZZ. That is just too funny to infuriate me! And I saw it coming.
4. Nobody picked 4 did they? I felt worried about the Roo, and sad, but not angry at him.
5. Sorry. While I do get unjustifiably annoyed sometimes with my darling attention sucker, she is just three. Of course she wants my attention. It ain't easy having a big brother always in the limelight.
6. Ding ding ding ding! We have a winner! Despite all logic, the kind attempt of my ABA buddy to help me understand and be the grownup made me want to hurl us all into a raging volcano. We had just spent two full, hard hours dealing with autism's rages, language impediments, mood swings, potty training deficits, sensory defensiveness, and more, and yet somehow just hearing the phrase "for kids with autism" seemed like the slap in the face I could hardly stand. I effing hate autism, people. I know I'm not supposed to, but I'm really very tired of autism. I wish it would leave my son and I alone so we could play happily with Peaches and their daddy. I don't want to talk about the A word all the freaking time. I want it to go away, or to occasionally be able to at least pretend that it already went.
Does that make me bad?
Sunday, June 14, 2009
In the Swim of Things
I really ought to write about the IEP, the crazy day of the IEP, the inservice I facilitated... that day brimmed OVER with bloggy compost... but I have this other thing, kind of murky and unformulated, demanding to have the first turn.
So I don't know where this is going, but I want to write about water. What goes on with my son and water brings to mind some kind of Age of Aquarius feel, evokes that diy tv program where designers go all feng shui crazy over nature symbols....
My son is all about the WATER. Maybe that is why it took 32 hours and two pulls on a vacuum to coax him out of the womb? The photos I most cherish of him I took during his first baths. A frickin' Calgon commercial, I tell you --- he LOVED the water.
Among his 3000 piece bathtub amusement collection? Dive toys. Snorkels, Fins.
I love that my child loves the water so much, that he can get his sensory needs met that way. And yet...
We have moved frequently, and when we house hunted, I finally had to put my foot down when our agent kept showing us homes with pools. "Tom," I said, "we will NOT even look at another house with a pool. I don't want to hear about gates and covers. NO POOLS." And then, of course, I had to explain. "I can't swim. And I can't handle the responsibility and the worry. NO POOLS."
At that time, I didn't know how glad I'd be later I'd set that limit. I didn't know that my son would become so fascinated with water, and so determined to be in it, and that he'd have so little understanding of danger. Later we'd stay at a lake house on vacation, and it took nine adults constant vigilance to keep my son from simply running outside and throwing himself with abandon into deep water.
I really, really need to learn how to swim.
So, today, we joined the YMCA. I have no idea how many years in the making, but we've LONG awaited a way to get a little time tend to our poor, aging, adult bodies, while leaving the little bodies in good hands. Now that we have both kids in underwear (dare I say it?), now that we've made some decent progress in ABA (oh, I better dial back the positivity), now that it's summer, it seemed like maybe we could join the Y. The kids and I can learn to swim. I can try leaving them in the kids' activity room for child care in small doses while I do the cardio room and maybe I can lose a few more pounds. (Did I mention I shed 10? Shhhh, don't jinx me. Three or four more and I'll call it done, good enough. I never even strive for skinny. I don't think it's under there, in this bod.)
So finally we signed up today, and we all took the plunge. We got in the kiddy pool together.
And it just felt to tremendously symbolic to me. Like, cheap symbolism, sure... Freud not needed for such representationalism... I just felt like I needed to write about it tonight.
Not that I know exactly what I want to say about it. Just that I need to tell you. I just need to say that this trip to the pool, it represented us. Peaches dragged her feet, worried, balked at everything, needed coaxing... finally falling deeply in love with the pool after seeing other cute little girls in purple suits frolicking unafraid with their moms and siblings, though always ready in a moment to panic, worry or cling. Rooster brought his dorkiest tub toys, shrieked too loudly, swam right into strangers, broke all the rules, and charmingly wooed one mom, saying, "Hi! I'm rooster, and I'm FIVE! I'm BIG! Can I play with you? Is that your girl?" Rooster knew no fear. My husband smoothly entertained both children, knowing just how to get Peaches into deeper water, spinning her and flattering her every other moment, setting firm and appropriate limits for Rooster, and keeping him in check with threats of serious consequences, like having to go home early. Me? I flitted. I worried. I tried to PLEASE. I felt insecure being in a swim suit for the first time this millennium. I studied the faces of everyone my kids came near. I tried to pretend to feel confident. I worried. I said that one already didn't I?
I don't know where I'm going with this, but today we did more than go to the Y. We lived a snapshot of our life. We made the trailer to our movie, in a way. We were so us. It was complicated.
We are a jumble of intensity, a mix of opposites and conflicts and contradictions. I can't swim, and water makes me more than a little nervous. My husband? A fish. When I met him, he had this freaky crazy lung capacity thing that people remarked about; he'd gone scuba diving in places all around the world, sailed into amazing adventures, done a semester at sea... When we married, I dreamed of having a son just like him, how they would swim together, how I'd learn, eventually, so I could keep up just a little bit. Naturally I never could have imagined how autism would figure into that whole fantasy. What does it bring, now, I keep asking myself? Does Rooster love to swim because he is daddy's boy, or is it about the sensory component autism, this thing I still can't quite grasp? And this inability to resist risk, to comprehend danger... how does it impact my dreams for him to swim like daddy? If Rooster is less scared than he should be, am I more scared than I should be? And what does Peaches pick up from all of this? Is her fear a reflection of my own poorly hidden anxiety because of, and for, her brother?
Today at the Y, we played out all our issues. We were loud, sloppy, and emotional. We got funny looks, gentle reminders, and kind offers of help. We had poor form, and we stood out. We laughed a lot, and there was copious whining. The rooster beamed gloriously. Peaches was needy. We made some friends. I worried. My husband was heroic. I organized everything, and then some. We amassed enough laundry to cause grave concern about our carbon footprint. We left exhausted. We felt autism's presence keenly. And I guess that is what I really wanted to write about today.
So I don't know where this is going, but I want to write about water. What goes on with my son and water brings to mind some kind of Age of Aquarius feel, evokes that diy tv program where designers go all feng shui crazy over nature symbols....
My son is all about the WATER. Maybe that is why it took 32 hours and two pulls on a vacuum to coax him out of the womb? The photos I most cherish of him I took during his first baths. A frickin' Calgon commercial, I tell you --- he LOVED the water.
Among his 3000 piece bathtub amusement collection? Dive toys. Snorkels, Fins.
I love that my child loves the water so much, that he can get his sensory needs met that way. And yet...
We have moved frequently, and when we house hunted, I finally had to put my foot down when our agent kept showing us homes with pools. "Tom," I said, "we will NOT even look at another house with a pool. I don't want to hear about gates and covers. NO POOLS." And then, of course, I had to explain. "I can't swim. And I can't handle the responsibility and the worry. NO POOLS."
At that time, I didn't know how glad I'd be later I'd set that limit. I didn't know that my son would become so fascinated with water, and so determined to be in it, and that he'd have so little understanding of danger. Later we'd stay at a lake house on vacation, and it took nine adults constant vigilance to keep my son from simply running outside and throwing himself with abandon into deep water.
I really, really need to learn how to swim.
So, today, we joined the YMCA. I have no idea how many years in the making, but we've LONG awaited a way to get a little time tend to our poor, aging, adult bodies, while leaving the little bodies in good hands. Now that we have both kids in underwear (dare I say it?), now that we've made some decent progress in ABA (oh, I better dial back the positivity), now that it's summer, it seemed like maybe we could join the Y. The kids and I can learn to swim. I can try leaving them in the kids' activity room for child care in small doses while I do the cardio room and maybe I can lose a few more pounds. (Did I mention I shed 10? Shhhh, don't jinx me. Three or four more and I'll call it done, good enough. I never even strive for skinny. I don't think it's under there, in this bod.)
So finally we signed up today, and we all took the plunge. We got in the kiddy pool together.
And it just felt to tremendously symbolic to me. Like, cheap symbolism, sure... Freud not needed for such representationalism... I just felt like I needed to write about it tonight.
Not that I know exactly what I want to say about it. Just that I need to tell you. I just need to say that this trip to the pool, it represented us. Peaches dragged her feet, worried, balked at everything, needed coaxing... finally falling deeply in love with the pool after seeing other cute little girls in purple suits frolicking unafraid with their moms and siblings, though always ready in a moment to panic, worry or cling. Rooster brought his dorkiest tub toys, shrieked too loudly, swam right into strangers, broke all the rules, and charmingly wooed one mom, saying, "Hi! I'm rooster, and I'm FIVE! I'm BIG! Can I play with you? Is that your girl?" Rooster knew no fear. My husband smoothly entertained both children, knowing just how to get Peaches into deeper water, spinning her and flattering her every other moment, setting firm and appropriate limits for Rooster, and keeping him in check with threats of serious consequences, like having to go home early. Me? I flitted. I worried. I tried to PLEASE. I felt insecure being in a swim suit for the first time this millennium. I studied the faces of everyone my kids came near. I tried to pretend to feel confident. I worried. I said that one already didn't I?
I don't know where I'm going with this, but today we did more than go to the Y. We lived a snapshot of our life. We made the trailer to our movie, in a way. We were so us. It was complicated.
We are a jumble of intensity, a mix of opposites and conflicts and contradictions. I can't swim, and water makes me more than a little nervous. My husband? A fish. When I met him, he had this freaky crazy lung capacity thing that people remarked about; he'd gone scuba diving in places all around the world, sailed into amazing adventures, done a semester at sea... When we married, I dreamed of having a son just like him, how they would swim together, how I'd learn, eventually, so I could keep up just a little bit. Naturally I never could have imagined how autism would figure into that whole fantasy. What does it bring, now, I keep asking myself? Does Rooster love to swim because he is daddy's boy, or is it about the sensory component autism, this thing I still can't quite grasp? And this inability to resist risk, to comprehend danger... how does it impact my dreams for him to swim like daddy? If Rooster is less scared than he should be, am I more scared than I should be? And what does Peaches pick up from all of this? Is her fear a reflection of my own poorly hidden anxiety because of, and for, her brother?
Today at the Y, we played out all our issues. We were loud, sloppy, and emotional. We got funny looks, gentle reminders, and kind offers of help. We had poor form, and we stood out. We laughed a lot, and there was copious whining. The rooster beamed gloriously. Peaches was needy. We made some friends. I worried. My husband was heroic. I organized everything, and then some. We amassed enough laundry to cause grave concern about our carbon footprint. We left exhausted. We felt autism's presence keenly. And I guess that is what I really wanted to write about today.
Tuesday, June 9, 2009
Note To Self
Dear G,
Oh, sweetie. On the one hand, I want to give you some tough love. It's for your own good that I tell you how unattractive everyone finds your incessant indulgence in pity parties. On the other hand, I realize pity parties are the only kind you get to go to recently, and for that I feel like hugging you, and giving you the opposite of tough love... just love.
I'll try to be even handed.
Okay, here is some advice for you. I want you to take a deep breath and think back to that 21 hours of alone time you and J had this past weekend. Remember? Ahhh, breathe it in all the way to your core. You were a lucky girl to get to celebrate your anniversary, and I sure hope you banked the good vibes of that little getaway so you can use them now.
This is a tough week, I can't help but grant you that, but it's NOT the end of the universe. Try to remember that the Rooster will be better off at a new school, and that you will enjoy the benefits of a little separation of church and state, so to speak. I know for all your stress that you are actually happy to have a new school for him, you are just worried about the niggling what ifs and uncertainties... no one invents stuff to worry about like you do, but try not to do that to yourself so much, please.
And yes, this IEP comes at the world's worst time ever possible, but you'll get all work done before the meeting, and no one has ever died from missing a few graduations, retirement parties, and celebrations. In a way, it's ironic that missing parties and events lately makes you so sad; aren't you the same girl who used to complain half the time about the events you did have to attend? So chin up, babe... you'll be glad you didn't eat all those calories.
Not everybody hates you, you can stop eating worms... you completely exaggerate in your own mind how much attitude you get, and tomorrow I want you to focus on the support you feel from your most supportive friends and colleagues. If you can't feel the obvious compassion around you, reread your blog comments. Only a fool would fail to feel supported after that. You are so lucky; don't take it for granted. That would be doing a disservice to so many wonderful people all around you.
You know what I think your real issue is, G? And I say this with all the best intentions: you haven't gotten over this whole autism thing, and instead you've been convincing yourself it's something you can't handle. Well, sorry, but I remember you sitting on the floor in your condo close to six years ago negotiating with the universe to give you a child, to please not let you miscarry, because you would do ANYTHING for this baby, ANYTHING, and you got a beautiful little boy. You keep touching the bruises from each day like you want to feel each injury over and over again, and it isn't healthy... why do you replay each slight and every comment about his "special needs" in your head that way? To see if it still hurts? Maybe you need to repeat after me 3000 times until you've reached real acceptance, "My son has autism." Maybe then we can be done with it and get back to business, the business of raising your beautiful, delicious, smart, feisty, difficult children. Your son has autism. He also has cute curls, a darling vocabulary, kissable cheeks, an impressive imagination... and, yeah, there is also the autism. Deal with it. I am sorry if that sounds too harsh, because I'm not trying to hurt you; rather, I'm trying to show you that you are NOT hurt, you are OKAY. You don't always realize it, but you are.
Yes, you didn't get dealt the really easy hand. But there are so, so much worse cards you could have gotten, my friend. You used to proclaim proudly that you LIKED hard things, that you welcomed challenges. Okay, be the kind of leader you like to imagine. Make it work. Lemme see some lemonade, sister.
A long time ago you were a lonely girl wishing and hoping for more. You wanted love, teamwork, obstacles to overcome, family, new beginnings, and stories. Well, nothing is perfect. You got your wishes, G, all that and more, and what you got is really good stuff. You can choose to wallow in the sh*t that comes along with your life, or you can realize that sh*t comes along with EVERY life and you can celebrate all the goodness in spite of that. There is goodness aplenty for anyone willing to see it.
Oh, stop crying already. I'm tired and I had an epic day, and I've got two substantially longer ones to go, so can we wrap this up now? You know I love you. And you know I'm right. Now let's go to bed.
Oh, sweetie. On the one hand, I want to give you some tough love. It's for your own good that I tell you how unattractive everyone finds your incessant indulgence in pity parties. On the other hand, I realize pity parties are the only kind you get to go to recently, and for that I feel like hugging you, and giving you the opposite of tough love... just love.
I'll try to be even handed.
Okay, here is some advice for you. I want you to take a deep breath and think back to that 21 hours of alone time you and J had this past weekend. Remember? Ahhh, breathe it in all the way to your core. You were a lucky girl to get to celebrate your anniversary, and I sure hope you banked the good vibes of that little getaway so you can use them now.
This is a tough week, I can't help but grant you that, but it's NOT the end of the universe. Try to remember that the Rooster will be better off at a new school, and that you will enjoy the benefits of a little separation of church and state, so to speak. I know for all your stress that you are actually happy to have a new school for him, you are just worried about the niggling what ifs and uncertainties... no one invents stuff to worry about like you do, but try not to do that to yourself so much, please.
And yes, this IEP comes at the world's worst time ever possible, but you'll get all work done before the meeting, and no one has ever died from missing a few graduations, retirement parties, and celebrations. In a way, it's ironic that missing parties and events lately makes you so sad; aren't you the same girl who used to complain half the time about the events you did have to attend? So chin up, babe... you'll be glad you didn't eat all those calories.
Not everybody hates you, you can stop eating worms... you completely exaggerate in your own mind how much attitude you get, and tomorrow I want you to focus on the support you feel from your most supportive friends and colleagues. If you can't feel the obvious compassion around you, reread your blog comments. Only a fool would fail to feel supported after that. You are so lucky; don't take it for granted. That would be doing a disservice to so many wonderful people all around you.
You know what I think your real issue is, G? And I say this with all the best intentions: you haven't gotten over this whole autism thing, and instead you've been convincing yourself it's something you can't handle. Well, sorry, but I remember you sitting on the floor in your condo close to six years ago negotiating with the universe to give you a child, to please not let you miscarry, because you would do ANYTHING for this baby, ANYTHING, and you got a beautiful little boy. You keep touching the bruises from each day like you want to feel each injury over and over again, and it isn't healthy... why do you replay each slight and every comment about his "special needs" in your head that way? To see if it still hurts? Maybe you need to repeat after me 3000 times until you've reached real acceptance, "My son has autism." Maybe then we can be done with it and get back to business, the business of raising your beautiful, delicious, smart, feisty, difficult children. Your son has autism. He also has cute curls, a darling vocabulary, kissable cheeks, an impressive imagination... and, yeah, there is also the autism. Deal with it. I am sorry if that sounds too harsh, because I'm not trying to hurt you; rather, I'm trying to show you that you are NOT hurt, you are OKAY. You don't always realize it, but you are.
Yes, you didn't get dealt the really easy hand. But there are so, so much worse cards you could have gotten, my friend. You used to proclaim proudly that you LIKED hard things, that you welcomed challenges. Okay, be the kind of leader you like to imagine. Make it work. Lemme see some lemonade, sister.
A long time ago you were a lonely girl wishing and hoping for more. You wanted love, teamwork, obstacles to overcome, family, new beginnings, and stories. Well, nothing is perfect. You got your wishes, G, all that and more, and what you got is really good stuff. You can choose to wallow in the sh*t that comes along with your life, or you can realize that sh*t comes along with EVERY life and you can celebrate all the goodness in spite of that. There is goodness aplenty for anyone willing to see it.
Oh, stop crying already. I'm tired and I had an epic day, and I've got two substantially longer ones to go, so can we wrap this up now? You know I love you. And you know I'm right. Now let's go to bed.
Sunday, June 7, 2009
The Week Ahead, The Year Behind
This coming week, like all the others, floors me.
We're still newish at this IEP business, and while I know what to expect, I also don't.
I know that we'll review Rooster's goals, that we'll talk about his behavior challenges in details that will necessitate I use up my allotment of cheap off brand tissues provided for the occasion. I know that the team will recommend inclusion in general ed kindergarten at the school across the street from where I work, and that the team will argue for a AAA paraprofessional aid while I will probably put up a fight for a BI aid from the vendor we used this year. I know we'll be offered school based OT and not the therapy room we've been using, and that we pretty much see the point of this. I know we'll talk a little about my son's progress, but much more about his irritability, behavior challenges, and needs, needs, needs. I know we need to do all this, and that it's important.
What I still don't know is what I always haven't known, what I've questioned since the first post I ever wrote on this site, or before that when I commented on others' pages. I don't know what it all means in the big picture. I don't know exactly how I feel or exactly who this boy is, exactly how far off the mark he'll be with his academics, exactly where to spend the most of my worry chips. I don't know exactly how much to panic or how much to hope. I don't know exactly how to measure anything, or exactly what autism means to me, to Rooster, to our clan. I don't exactly know what to make of the Rooster calls... I haven't found clear perspective yet, and I don't know if I ever will.
This is a gigantic week. It is a turning time. Among many other things that might not seem related but are anyway, it's been almost a year since I lost my grandmother - today was the unveiling of her headstone and I couldn't be there, across the country, with my family. It's my wedding anniversary tomorrow - lucky seven - and also the anniversary of the day I met J nine years ago. It's the last week of school, and that has a context it never has had for me before. It marks the end of my son's career as a student where I built my career as a teacher, just as it marks my daughter's graduation from the faculty child care center; ironically, this fall she will enter the preschool grade Rooster is leaving after having spent two years there. This week promises to be a roller coaster ride of emotions, an inordinate amount of stress, an overdose of transitions. I should be looking forward, prepping, planning, rehearsing. I'm not.
Mostly I'm looking back. Mostly, when I wrap any part of my head around any of the sea changes taking place, I'm mostly noting how far we've come rather than where we are going. I'm not bright siding, I'm just processing what strikes me most at any given moment...
Like, today was a hard day, but so much farther ahead than the hard days of a year or two ago. Today the Rooster had three or four accidents, and that seemed like an awful lot. For about a nanosecond. And then I remembered it's been only the briefest time since we managed two or three successes getting him to use the potty in a day. Today, we put the Rooster on time out, and he accepted his punishment, and handled it just as he's supposed to, and then didn't need to be prompted to apologize for his actions. Today the Rooster struggled to take a conversation 4 levels deep despite doing much better at it a few days ago, but I vividly remember asking J with terrified wonder last year, "Do you think by the time he's five we'll be able to ask him questions and he'll answer? Do you think he'll be able to ask questions when he's five?" Today was hard, but today was tolerable.
Today is about as far as I can look right now. The week ahead will come, just like the year ahed, and I'll deal with it then. Wish me luck.
- Monday means OT, restocking the cubbies, replenishing the gfcf school stash, a big school party, full work days, long commutes, ABA, whew.
- Tuesday means meetings, preparations, dropping off thank you gifts, mailing Father's Day gifts to make sure they make it in time, more work, more ABA.
- Wednesday is OT, a half day for children but a full day for me, the last day of school, the start of cobbling together babysitters, and the end of a two year attempt to fit a square peg in a round hole... no more struggling to get my son to make it through attending the school that has been my Los Angeles home for 14 years. Oh, and ABA...
- Thursday I am responsible for an in-service day for my colleagues and my bosses -- an in-service day one of my friends said she'd rather be doing just about anything other than attending -- and I'm somewhat nervous. But more importantly, the minute it finishes (or possibly a few minutes before everyone finishes with my meticulously planned out and pedagogically ambitious sessions that might or might not inspire technology integration among the challenging audience of exhausted and spring feverish educators) -- I will skip lunch to get in my car and race across town for the rooster's IEP, then gather myself together to race back to pick up Peaches, then turn around and race back again toward home, where the Rooster will be waiting, and it will be time for more ABA.
We're still newish at this IEP business, and while I know what to expect, I also don't.
I know that we'll review Rooster's goals, that we'll talk about his behavior challenges in details that will necessitate I use up my allotment of cheap off brand tissues provided for the occasion. I know that the team will recommend inclusion in general ed kindergarten at the school across the street from where I work, and that the team will argue for a AAA paraprofessional aid while I will probably put up a fight for a BI aid from the vendor we used this year. I know we'll be offered school based OT and not the therapy room we've been using, and that we pretty much see the point of this. I know we'll talk a little about my son's progress, but much more about his irritability, behavior challenges, and needs, needs, needs. I know we need to do all this, and that it's important.
What I still don't know is what I always haven't known, what I've questioned since the first post I ever wrote on this site, or before that when I commented on others' pages. I don't know what it all means in the big picture. I don't know exactly how I feel or exactly who this boy is, exactly how far off the mark he'll be with his academics, exactly where to spend the most of my worry chips. I don't know exactly how much to panic or how much to hope. I don't know exactly how to measure anything, or exactly what autism means to me, to Rooster, to our clan. I don't exactly know what to make of the Rooster calls... I haven't found clear perspective yet, and I don't know if I ever will.
This is a gigantic week. It is a turning time. Among many other things that might not seem related but are anyway, it's been almost a year since I lost my grandmother - today was the unveiling of her headstone and I couldn't be there, across the country, with my family. It's my wedding anniversary tomorrow - lucky seven - and also the anniversary of the day I met J nine years ago. It's the last week of school, and that has a context it never has had for me before. It marks the end of my son's career as a student where I built my career as a teacher, just as it marks my daughter's graduation from the faculty child care center; ironically, this fall she will enter the preschool grade Rooster is leaving after having spent two years there. This week promises to be a roller coaster ride of emotions, an inordinate amount of stress, an overdose of transitions. I should be looking forward, prepping, planning, rehearsing. I'm not.
Mostly I'm looking back. Mostly, when I wrap any part of my head around any of the sea changes taking place, I'm mostly noting how far we've come rather than where we are going. I'm not bright siding, I'm just processing what strikes me most at any given moment...
Like, today was a hard day, but so much farther ahead than the hard days of a year or two ago. Today the Rooster had three or four accidents, and that seemed like an awful lot. For about a nanosecond. And then I remembered it's been only the briefest time since we managed two or three successes getting him to use the potty in a day. Today, we put the Rooster on time out, and he accepted his punishment, and handled it just as he's supposed to, and then didn't need to be prompted to apologize for his actions. Today the Rooster struggled to take a conversation 4 levels deep despite doing much better at it a few days ago, but I vividly remember asking J with terrified wonder last year, "Do you think by the time he's five we'll be able to ask him questions and he'll answer? Do you think he'll be able to ask questions when he's five?" Today was hard, but today was tolerable.
Today is about as far as I can look right now. The week ahead will come, just like the year ahed, and I'll deal with it then. Wish me luck.
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