If God is real, and is in any way interested in my well-being, then I don’t GET him at all.
I got disillusioned with religion years ago due to various things – too many questions I couldn’t answer, feeling like I was somehow missing something, and mostly because of autism. I mean, what kind of loving God lets autism happen and babies get cancer and children be brutalized and killed, sometimes at the hands of their own parents? And if he doesn’t LET it happen, it just happens, then how is he all-powerful? But even with all that, either because of habit or fear, or some inner need I couldn’t articulate, I never could let go completely of the IDEA of God.
At times I was happy to wash my hands of church – no more rushing around on Sunday morning, more time to get stuff done that I couldn’t seem to get done during the week – not going to church seemed a wise choice, a mature decision. Other times I missed it – I missed the warm feeling of community, the hymns, the peace, the wisdom I gained. Especially at Christmas I used to long for those feelings again. But by and large, I let it go.
This is the South, though. Besides football and church, what else is there that gathers somewhat like-minded people together? What other ties bind us in community? Not much that I’ve found. So, I pondered. Years passed, and I visited a church here and there. I found that I could no longer sit through a sermon that taught, for example, that I was to be a good girl and be submissive to my husband. Ummm…no. Not to mention that my husband would have a big problem with that, having long ago told me I had a good mind and I should use it. Kudos to David for always, without question, assuring me that thinking for myself is not only a good thing, it is essential to becoming a whole person.
I digress.
After years of wandering and pondering, my dear friend Rebecca invited us to her church, where they are beginning a program geared toward families with special needs kids. It’s an Episcopal church, and though I have darkened its doors only a handful of times, it feels peaceful and…holy…to me. Set apart. I still have all the same questions and doubts (if not more) but, if I step back and just EXIST, it feels wonderful to be in that little church, reciting creeds and being given the Eucharist.
I don’t know WHY it soothes me, but I thought, why question it? Just soak it in, a brief respite, an island of peace in the turbulent river of the week. I don’t have to answer all the theological questions. I can just…BE. Stephen has been happy enough downstairs in the nursery, watching DVDs. In fact, he started asking two days ago, on Friday, for church. I led him to his weekly schedule in the hall, and showed him that the next day was Saturday, then, "Sunday – church!" "Church," he intoned, with a smile. Well all right then! Now we’re getting somewhere.
Until this morning. He began asking for Zaxby’s, and I told him (as per our usual Sunday routine) that we’d go to church, then we needed to go by Publix (admittedly not part of the Sunday routine but a familiar place that we often frequent), and then…Zaxby’s!
"No no no no no."
"But, we’ll put on shoes and go to church! Church! Fun!"
"Bye-bye."
"Yes, we’ll go bye-bye in just a little bit."
"Zaxby’s."
"Church, Publix, Zaxby’s, home."
"No no no no no."
I fixed his portable schedule up with those four pictures, only to be told no again. And again.
Damn it! I should’ve known not to get so smug and self-satisfied. The kid who asked repeatedly for church now wouldn’t even get dressed to go. He cried as I was getting dressed – I thought, Fine, I’ll go…but no, it was way too early, and I didn’t want to aimlessly drive around. When he’s like this, nothing will calm him besides seeing me leave – because then, in his mind, at some point I’ll return with the desired food in hand, and that’s all he cared about today. I don’t know what the difference is. I don’t know why today, he balked. All my plans, compromised…again.
I don’t know what next Sunday will bring. Maybe this was a fluke. All I know is, the irony of FINALLY finding a place I feel comfortable, and perhaps even a little of that peace that passeth understanding, only to have Stephen throw a wrench into it all is more than I can take. I thought God helped with stuff like this? I finally ease out of my backsliding ways and show my face in a religious institution – I’m no longer throwing out desperate pleas for some higher power to help me, without setting aside time to at least be still – and this is the result? Maybe it’s the wine I’ve had at Communion. God must be a teetotaling Baptist and I have displeased him.
I was too upset to go to church anyway. I’m still too unsure of myself to go there, and possibly cry through the whole service. Instead I cried on the way to Publix, in the parking lot, and on the way to Zaxby’s. I’m quite proud that I didn’t push my cart up and down the aisles sobbing. I think that shows real restraint, don’t you? I mean, yes, I did completely ignore all the helpful Publix employees who said, "How are you today, ma’am?" I didn’t think it would appropriate to say, "Well, I’m completely distraught, on the verge of tears, and don’t know what to do next. Will you hug me while I sob? Thanks."
Sometimes, the pain welling up is so immense, I feel like I’m going to burst. The choices laid out in front of me are usually just differing degrees of yuck. What does the future hold? Eternal discord, living on the edge of a precipice – or placing Stephen outside our home only to worry about his safety endlessly? I discard both but have nothing to replace them.
We are increasing Stephen’s Risperdal in hopes that it will help to calm him – but it won’t suddenly make him understand abstract concepts, or gain the ability to reason or to understand reasoning.
Today I feel like God, whoever or whatever that might mean, is looking down at me saying, "Gee. Sucks to be you, huh?"
Yeah. Today it does.
Sunday, August 22, 2010
Wednesday, June 16, 2010
Autism hurts
Autism hurts.
Autism hurts my innocent child, who had no control over what happened to his brain and body. I have no idea why he cries sometimes, why he pounds his head or wants "Pushes, please." It torments me not to know what is going on.
Autism hurts my family. The chaos, the storms of emotion and anger and screaming and tension...they make us tight and sore and exhausted. We walk around shell-shocked after a bad time with Stephen. We don't get invited out...you know, to be with people. I think we scare them. We're still a family, even if we're not like yours.
Autism hurts ME. I carry around the weight of uncertainty for the future, apprehension for the present, and anger over what has been robbed from me. I held this baby in my arms, loving him from the instant I saw him (and before) and imagining his future, tagging along after his big brother. Those dreams, though dashed long ago, persist. They won't go away. I see other siblings and my heart aches with an indescribable longing to just FIX things, damn it. I am bitter and jealous and cynical, and I detest those qualities in myself. Why can't this get better? Why?
Of course there are moments - times to catch my breath, to laugh with Stephen, to lose myself in a hug from him, his hair smelling of shampoo - but there's always the dread of when the next problem will arise. Don't tell me that I can't live like that, that I should be more positive...I try, believe me, but history proves me right on this. Fact: You relax too long and you get kicked in the teeth - sometimes literally.
There are more things to worry about than there are hours in the day. His diet remains horrible. Carbs, carbs, and carbs, with a side of carbs. His belly is huge and distended - he is plagued with horrible gas (and pains, I'm quite sure). He does take a vitamin, but come on...the kid hasn't eaten a vegetable in years. Potty training remains a pipe dream. And, damn Walgreens to the fiery pits of hell, they CHANGED the sleep pants that fit him so well, and were soft and comfy and stretchy. Now they're different. New and improved, my ass. They're rough, brittle, half as stretchy - they rip when we're trying to put them on him. I wrote the company, I complained, I bitched...I was asked to submit "before and after" samples, so I did. And nothing. No response. I was buying $150 of these things a month! We're using the Rite Aid counterpart to these, but they are only marginally better. And the smallest adult diapers are too long for him - they come up to his armpits and don't fit around the legs... These and other issues keep my gut clenched in an iron fist.
I'm tired of it. Tired of it all. Tired of coming home not knowing how he's going to be. Tired of constant struggles to fund respite care, to buy diapers, to have a life. Tired of looking at my child, wondering what he would've been like without this damned disorder. Tired of listening to people complain about their "hard to manage" kids, and having the gall to say to me, "Yeah, I know - being a parent is hard." Oh, give me a break. If you can TALK to your kid, and he talks back, he pees and poops in the toilet, and you can live your life without constantly planning every minute, then shut the hell up.
I know this is coming across badly.
(Everyone has issues, you say. Everybody has problems and pain and disappointment, you tell me, as you pat my arm. Don't act like it couldn't be worse...it could be, you murmur, and put your arm around my shoulders. Yes, but...this chronic, daylong, nightlong, yearlong, lifelong sorrow drains me...I feel my lifeforce ebbing away.)
At times I feel I can't bear up under it all anymore. I've lost patience with people who spout platitudes and never back them up with action. I'm sick to death of worrying about what the future holds for a boy who will never be able to care for himself. I'm tired of hurting...for me, for my family, for Stephen. God love him, he has no idea what autism is...the world must be bewildering to him at times. Sometimes we marvel that he is manageable at all - and yes, at times, he IS. But then, there are the other times...last night he asked me for "chicken" at least 25 times. His stomach was stuffed, and we HAD no chicken anyway. If we HAD chicken, he might eat two bites. But every time I said, "Chicken all gone," he cried, the cries escalating each time in volume and intensity. I couldn't eat my own dinner because I had to sit on the couch and push on his head for 20 minutes - trying to calm him down.
Lately I've found myself sitting, staring at the computer screen or out the window, with no recollection of how long I've been doing that. I'm more forgetful than ever. Common sense, something I've long sought after, is laughing at me as it speeds ahead productively. I feel like I'm slogging through some sort of thick, syrupy substance, feet dragging, heart pounding at the effort. How does one persist? What choices do we make about the future when none are acceptable? How do we do it?
I don't know.
Autism hurts my innocent child, who had no control over what happened to his brain and body. I have no idea why he cries sometimes, why he pounds his head or wants "Pushes, please." It torments me not to know what is going on.
Autism hurts my family. The chaos, the storms of emotion and anger and screaming and tension...they make us tight and sore and exhausted. We walk around shell-shocked after a bad time with Stephen. We don't get invited out...you know, to be with people. I think we scare them. We're still a family, even if we're not like yours.
Autism hurts ME. I carry around the weight of uncertainty for the future, apprehension for the present, and anger over what has been robbed from me. I held this baby in my arms, loving him from the instant I saw him (and before) and imagining his future, tagging along after his big brother. Those dreams, though dashed long ago, persist. They won't go away. I see other siblings and my heart aches with an indescribable longing to just FIX things, damn it. I am bitter and jealous and cynical, and I detest those qualities in myself. Why can't this get better? Why?
Of course there are moments - times to catch my breath, to laugh with Stephen, to lose myself in a hug from him, his hair smelling of shampoo - but there's always the dread of when the next problem will arise. Don't tell me that I can't live like that, that I should be more positive...I try, believe me, but history proves me right on this. Fact: You relax too long and you get kicked in the teeth - sometimes literally.
There are more things to worry about than there are hours in the day. His diet remains horrible. Carbs, carbs, and carbs, with a side of carbs. His belly is huge and distended - he is plagued with horrible gas (and pains, I'm quite sure). He does take a vitamin, but come on...the kid hasn't eaten a vegetable in years. Potty training remains a pipe dream. And, damn Walgreens to the fiery pits of hell, they CHANGED the sleep pants that fit him so well, and were soft and comfy and stretchy. Now they're different. New and improved, my ass. They're rough, brittle, half as stretchy - they rip when we're trying to put them on him. I wrote the company, I complained, I bitched...I was asked to submit "before and after" samples, so I did. And nothing. No response. I was buying $150 of these things a month! We're using the Rite Aid counterpart to these, but they are only marginally better. And the smallest adult diapers are too long for him - they come up to his armpits and don't fit around the legs... These and other issues keep my gut clenched in an iron fist.
I'm tired of it. Tired of it all. Tired of coming home not knowing how he's going to be. Tired of constant struggles to fund respite care, to buy diapers, to have a life. Tired of looking at my child, wondering what he would've been like without this damned disorder. Tired of listening to people complain about their "hard to manage" kids, and having the gall to say to me, "Yeah, I know - being a parent is hard." Oh, give me a break. If you can TALK to your kid, and he talks back, he pees and poops in the toilet, and you can live your life without constantly planning every minute, then shut the hell up.
I know this is coming across badly.
(Everyone has issues, you say. Everybody has problems and pain and disappointment, you tell me, as you pat my arm. Don't act like it couldn't be worse...it could be, you murmur, and put your arm around my shoulders. Yes, but...this chronic, daylong, nightlong, yearlong, lifelong sorrow drains me...I feel my lifeforce ebbing away.)
At times I feel I can't bear up under it all anymore. I've lost patience with people who spout platitudes and never back them up with action. I'm sick to death of worrying about what the future holds for a boy who will never be able to care for himself. I'm tired of hurting...for me, for my family, for Stephen. God love him, he has no idea what autism is...the world must be bewildering to him at times. Sometimes we marvel that he is manageable at all - and yes, at times, he IS. But then, there are the other times...last night he asked me for "chicken" at least 25 times. His stomach was stuffed, and we HAD no chicken anyway. If we HAD chicken, he might eat two bites. But every time I said, "Chicken all gone," he cried, the cries escalating each time in volume and intensity. I couldn't eat my own dinner because I had to sit on the couch and push on his head for 20 minutes - trying to calm him down.
Lately I've found myself sitting, staring at the computer screen or out the window, with no recollection of how long I've been doing that. I'm more forgetful than ever. Common sense, something I've long sought after, is laughing at me as it speeds ahead productively. I feel like I'm slogging through some sort of thick, syrupy substance, feet dragging, heart pounding at the effort. How does one persist? What choices do we make about the future when none are acceptable? How do we do it?
I don't know.
Friday, June 4, 2010
All of my plans, compromised...
My heart races almost all the time. My mouth is dry. My hands shake way too much. I jump out of my seat when the phone rings. All this can mean only one thing.
It's summertime.
School has been out now for one week, and it has been one of the worst weeks in a long time...we are all exhausted from the strain of trying to get Stephen through the incredibly hard (and unfair!) transition of his beloved school days into days of endless "free" time. The poor kid...
And poor us, too. The phrase I coined (or at least I think I did), "chronic sorrow," has been ever-present on my mind lately. [nope - upon researching, it turns out that: "Chronic Sorrow is a term coined by sociologist Simon Olshanshy to describe the long-term reaction of parents who have a child with a disability." So I guess I READ it.] Over and over my heart breaks, even when I'm pretty sure there are no intact pieces left. David, Kerry and I have that perpetual look of strain, Stephen's wires are so sensitive to change that he is not very fun to be around, and sometimes it's hard to see a positive side to much of anything.
Except...there are some positives, if I shuck off my shroud of cynicism (say that five times fast) just for a moment or two. We're in a house now - let's not talk about the lack of a convenient pool right now, we're being POSITIVE. We have A/C that works like a charm - I'm remembering the days of last summer when we were living in a hellish sauna. Kerry is busy and has lots of plans for summer. He's grown and changed and matured, and is still absolutely the coolest kid I know. The fact that he is mine makes absolutely no difference here. (smile)
And, let's see...I've got a good job for which I am alternately grateful for and frustrated with, but again, the POSITIVE is my focus right now.
Okay, I can't do it anymore. It's just damned hard to do this, to live this life of constant stress and worry and unpredictability. Talk about waiting for the shoe to drop - we wait for the 2 ton crate of shoes to come crashing down. Even when things are calm, it's hard to relax, because all that can change in a split second...say, if a DVD that has been well-loved (read: lined up on the floor, used as a mirror for making funny faces while watching another DVD, scraped across the foot Stephen props up as he's watching) won't play anymore, or, will play, but one of the sidebar/bonus features/extra games parts of the menu won't work...or won't fast-forward at the speed desired, all hell breaks loose.
It may seem that I'm being overly tedious with my explanations here, but to understand our life you must understand the minutiae of caring for a kid like Stephen. When things don't work as his poor little mind expects them to - the internet acts fluky, or that obscure menu on "The Trumpet of the Swan" DVD doesn't respond, or you don't take him to McDonald's RIGHT NOW - you are likely to be subjected to screeching that would put the Jurassic Park velociraptors to shame, and, sometimes, a hearty tug of your locks, if your hair is long enough to grab...or endless endless endless endless (get the picture?) repetition... "Friesburgerdonaldshungry..." ad nauseum, until you want to hop in your fighter plane and bomb every single fast food franchise in a 20 mile radius...
Well, I can dream.
So in the midst of all this, I have to head out to work - leaving David or my mother to deal with the LOOOOONG days of this transition time of summer. It's a tough gig, and I imagine nobody really envies them the job. Everything requires planning, and it's just tiring to body and soul. I confess, with pre-emptive apologies to friends who may read this, that I am nearly eaten up with jealousy toward people whose lives are "normal" - people who can take impromptu trips to the beach, or impromptu trips anywhere, for that matter; people who don't have to make sure they've created a picture symbol just so they can go by a store they've never been to before; people to whom summer is a time of vacation, freedom, days spent in lazy leisure activity.
I envy people who can explain to their children things like:
"That DVD is broken because you haven't taken care of it."
"We can't get a hamburger at 6:45 a.m."
"School is out - you have a break until August!" (Saints preserve us...)
"Honey, you cut your toe on that poolside chair...let Mama clean it and put on a band-aid." I have to stop and note this particular scenario for posterity. On our first trip to the pool that we found to join, Stephen bumped his toe as we were leaving. I didn't know he was cut, because he didn't whimper or anything. No, I noticed it only when I realized one of us was leaving a bloody footprint, and it wasn't me. I grabbed a paper towel and tried to look at his foot, but to no avail. I managed to wrap a piece around his toe and put his shoe on for the trip home. We got home and Stephen kicked off his shoes and climbed straight into our bed...in between one of my two "good" sets of 100% cotton sheets...
His toe bled. Boy, did it bleed. It wasn't a deep cut, just "skinned," as my mother would say. But here's the kicker - every time it quit? He scratched at it. He'd stick his foot up toward me and say, "Tickles please" which basically meant..."Fix this mom - but use your magical healing powers because you ain't gettin' near me with that scary looking bandaid, and you can FORGET putting some antiseptic or liquid bandage on..."
Again, a tedious explanation, but it was at that point that I mentally and emotionally shattered a bit more. I can't wrap the kid in a bubble - he's going to get cuts and scrapes, and I can't even do Basic Mom First Aid. It's a helpless feeling. I sat and watched spots appear on my pale green sheets as he wriggled around, pausing occasionally to give his toe a big scratch, all the while he's saying, "Noooo, noo...nossir." Because that's what I say in an attempt to get him to stop doing something he shouldn't...and you can see how well it's working.
At one point later on, I caught him off-guard, crawled under the table where he was watching a DVD, and managed to finesse a tiny bandaid in between two small toes...all the while smiling and patting him. HA! He stopped abruptly, gave me a glare, stuck his foot in my face, and said, "No no no no..." and started tugging. "Oh, sweetie, it'll help your boo-boo!"
"NO NO NO NO NOOOOOOOOOOOOOOOOOOO!" in crescendo.
Bandaid removed. Blood on the kitchen floor. It finally stopped and I've snuck bandages on after he was asleep at night. Maybe he'll let it heal. Maybe.
It goes against my very nature to be unable to help, to fix things. I'm a fixer. I'm a nurturer, sometimes to a fault. Sometimes I need to learn to step back and just listen...but at times like the cut toe incident, or a thousand other "little" things, just to be able to communicate, to kiss and make better, to comfort, would make all the difference in the world.
And so the maelstrom of my emotions whirls out of control much of the time. I am as nervous and jumpy as the proverbial cat in the room full of rocking chairs, and it affects everything...work, home, the sad state of my wannabe-artist/writer soul, my ability to smile, to live, to love... I become comatose at night, sleeping deeply and waking early with my mind going double-time immediately upon becoming conscious. I don't know what the future holds, and damn it, it drives me batty (battier). I love my son and am completely and utterly frustrated by his disorder simultaneously. I am grateful for what I've got, and pissed off at what I don't have, all at the same time. I know it could be worse...but then, there are the dark, dark moments of my soul when it's really hard to see that it could be worse, in fact it feels like the very worst it could be, just then. I have tasted, over and over, the bitterness of life. It's a taste that stays with me, never quite going away in spite of the joys and sweetnesses I certainly experience. There are people in my life who love me and I'm grateful for them, more grateful than can be expressed here. But oh...the autism! It pervades all, it entwines itself into every waking moment, it rules our world and I hate it with an intense passion I would have once thought impossible to feel.
I look into the mysterious moss green eyes of my son - eyes that rarely contain the spark of connection, eyes that dance with humor I don't understand, eyes that cry at unknown fears, eyes that see things I cannot see or comprehend - and I am overcome with protectiveness, with disappointment, with fear, with joy. It's a complicated mix and one thing can never be separated from the other. I have been bombarded over the years with opinions of certain pundits of the autism world who think that I do my son a disservice by not "accepting" his autism as part of who he is. Well, yes, I suppose that there is a level of acceptance, or really, resignation - if by that you mean knowing this isn't going away anytime soon or being in denial - but acceptance in some sense of gladly welcoming his autism? No way in hell. I've said many times that if hacking off my right arm with a rusty pocketknife would cure autism, I would do it. Dramatic? Yes, certainly, but that is the level to which I do NOT accept autism and will fight against its insidious effects until I have no more strength.
Hopefully in the next week or so we will start to incorporate some summer services and outings for Stephen, and will hope with all our might that he accepts these as part of a routine. I must plan out these months as carefully as if I worked for the Pentagon and lives depended on said plans...really, they do. The future hangs out there, taunting me with a singsongy "I know something you don't know"...and the uncertainty of it could drive me completely over the edge if I let it. For now, I'll think about today, and this weekend, and next week...and hope against hope that we can overpower the horrors of summertime+autism.
It is not a good combination.
*The title of this post is borrowed from the song "Arriving Somewhere But Not Here" by Porcupine Tree. An excerpt of lyrics:
All my designs, simplified
And all of my plans, compromised
All of my dreams, sacrificed
Ever had the feeling you've been here before?
Drinking down the poison the way you were taught
Every thought from here on in your life begins
And all you knew was wrong?
It's a great song found on PT's Deadwing album, if you're interested.
It's summertime.
School has been out now for one week, and it has been one of the worst weeks in a long time...we are all exhausted from the strain of trying to get Stephen through the incredibly hard (and unfair!) transition of his beloved school days into days of endless "free" time. The poor kid...
And poor us, too. The phrase I coined (or at least I think I did), "chronic sorrow," has been ever-present on my mind lately. [nope - upon researching, it turns out that: "Chronic Sorrow is a term coined by sociologist Simon Olshanshy to describe the long-term reaction of parents who have a child with a disability." So I guess I READ it.] Over and over my heart breaks, even when I'm pretty sure there are no intact pieces left. David, Kerry and I have that perpetual look of strain, Stephen's wires are so sensitive to change that he is not very fun to be around, and sometimes it's hard to see a positive side to much of anything.
Except...there are some positives, if I shuck off my shroud of cynicism (say that five times fast) just for a moment or two. We're in a house now - let's not talk about the lack of a convenient pool right now, we're being POSITIVE. We have A/C that works like a charm - I'm remembering the days of last summer when we were living in a hellish sauna. Kerry is busy and has lots of plans for summer. He's grown and changed and matured, and is still absolutely the coolest kid I know. The fact that he is mine makes absolutely no difference here. (smile)
And, let's see...I've got a good job for which I am alternately grateful for and frustrated with, but again, the POSITIVE is my focus right now.
Okay, I can't do it anymore. It's just damned hard to do this, to live this life of constant stress and worry and unpredictability. Talk about waiting for the shoe to drop - we wait for the 2 ton crate of shoes to come crashing down. Even when things are calm, it's hard to relax, because all that can change in a split second...say, if a DVD that has been well-loved (read: lined up on the floor, used as a mirror for making funny faces while watching another DVD, scraped across the foot Stephen props up as he's watching) won't play anymore, or, will play, but one of the sidebar/bonus features/extra games parts of the menu won't work...or won't fast-forward at the speed desired, all hell breaks loose.
It may seem that I'm being overly tedious with my explanations here, but to understand our life you must understand the minutiae of caring for a kid like Stephen. When things don't work as his poor little mind expects them to - the internet acts fluky, or that obscure menu on "The Trumpet of the Swan" DVD doesn't respond, or you don't take him to McDonald's RIGHT NOW - you are likely to be subjected to screeching that would put the Jurassic Park velociraptors to shame, and, sometimes, a hearty tug of your locks, if your hair is long enough to grab...or endless endless endless endless (get the picture?) repetition... "Friesburgerdonaldshungry..." ad nauseum, until you want to hop in your fighter plane and bomb every single fast food franchise in a 20 mile radius...
Well, I can dream.
So in the midst of all this, I have to head out to work - leaving David or my mother to deal with the LOOOOONG days of this transition time of summer. It's a tough gig, and I imagine nobody really envies them the job. Everything requires planning, and it's just tiring to body and soul. I confess, with pre-emptive apologies to friends who may read this, that I am nearly eaten up with jealousy toward people whose lives are "normal" - people who can take impromptu trips to the beach, or impromptu trips anywhere, for that matter; people who don't have to make sure they've created a picture symbol just so they can go by a store they've never been to before; people to whom summer is a time of vacation, freedom, days spent in lazy leisure activity.
I envy people who can explain to their children things like:
"That DVD is broken because you haven't taken care of it."
"We can't get a hamburger at 6:45 a.m."
"School is out - you have a break until August!" (Saints preserve us...)
"Honey, you cut your toe on that poolside chair...let Mama clean it and put on a band-aid." I have to stop and note this particular scenario for posterity. On our first trip to the pool that we found to join, Stephen bumped his toe as we were leaving. I didn't know he was cut, because he didn't whimper or anything. No, I noticed it only when I realized one of us was leaving a bloody footprint, and it wasn't me. I grabbed a paper towel and tried to look at his foot, but to no avail. I managed to wrap a piece around his toe and put his shoe on for the trip home. We got home and Stephen kicked off his shoes and climbed straight into our bed...in between one of my two "good" sets of 100% cotton sheets...
His toe bled. Boy, did it bleed. It wasn't a deep cut, just "skinned," as my mother would say. But here's the kicker - every time it quit? He scratched at it. He'd stick his foot up toward me and say, "Tickles please" which basically meant..."Fix this mom - but use your magical healing powers because you ain't gettin' near me with that scary looking bandaid, and you can FORGET putting some antiseptic or liquid bandage on..."
Again, a tedious explanation, but it was at that point that I mentally and emotionally shattered a bit more. I can't wrap the kid in a bubble - he's going to get cuts and scrapes, and I can't even do Basic Mom First Aid. It's a helpless feeling. I sat and watched spots appear on my pale green sheets as he wriggled around, pausing occasionally to give his toe a big scratch, all the while he's saying, "Noooo, noo...nossir." Because that's what I say in an attempt to get him to stop doing something he shouldn't...and you can see how well it's working.
At one point later on, I caught him off-guard, crawled under the table where he was watching a DVD, and managed to finesse a tiny bandaid in between two small toes...all the while smiling and patting him. HA! He stopped abruptly, gave me a glare, stuck his foot in my face, and said, "No no no no..." and started tugging. "Oh, sweetie, it'll help your boo-boo!"
"NO NO NO NO NOOOOOOOOOOOOOOOOOOO!" in crescendo.
It goes against my very nature to be unable to help, to fix things. I'm a fixer. I'm a nurturer, sometimes to a fault. Sometimes I need to learn to step back and just listen...but at times like the cut toe incident, or a thousand other "little" things, just to be able to communicate, to kiss and make better, to comfort, would make all the difference in the world.
And so the maelstrom of my emotions whirls out of control much of the time. I am as nervous and jumpy as the proverbial cat in the room full of rocking chairs, and it affects everything...work, home, the sad state of my wannabe-artist/writer soul, my ability to smile, to live, to love... I become comatose at night, sleeping deeply and waking early with my mind going double-time immediately upon becoming conscious. I don't know what the future holds, and damn it, it drives me batty (battier). I love my son and am completely and utterly frustrated by his disorder simultaneously. I am grateful for what I've got, and pissed off at what I don't have, all at the same time. I know it could be worse...but then, there are the dark, dark moments of my soul when it's really hard to see that it could be worse, in fact it feels like the very worst it could be, just then. I have tasted, over and over, the bitterness of life. It's a taste that stays with me, never quite going away in spite of the joys and sweetnesses I certainly experience. There are people in my life who love me and I'm grateful for them, more grateful than can be expressed here. But oh...the autism! It pervades all, it entwines itself into every waking moment, it rules our world and I hate it with an intense passion I would have once thought impossible to feel.
I look into the mysterious moss green eyes of my son - eyes that rarely contain the spark of connection, eyes that dance with humor I don't understand, eyes that cry at unknown fears, eyes that see things I cannot see or comprehend - and I am overcome with protectiveness, with disappointment, with fear, with joy. It's a complicated mix and one thing can never be separated from the other. I have been bombarded over the years with opinions of certain pundits of the autism world who think that I do my son a disservice by not "accepting" his autism as part of who he is. Well, yes, I suppose that there is a level of acceptance, or really, resignation - if by that you mean knowing this isn't going away anytime soon or being in denial - but acceptance in some sense of gladly welcoming his autism? No way in hell. I've said many times that if hacking off my right arm with a rusty pocketknife would cure autism, I would do it. Dramatic? Yes, certainly, but that is the level to which I do NOT accept autism and will fight against its insidious effects until I have no more strength.
Hopefully in the next week or so we will start to incorporate some summer services and outings for Stephen, and will hope with all our might that he accepts these as part of a routine. I must plan out these months as carefully as if I worked for the Pentagon and lives depended on said plans...really, they do. The future hangs out there, taunting me with a singsongy "I know something you don't know"...and the uncertainty of it could drive me completely over the edge if I let it. For now, I'll think about today, and this weekend, and next week...and hope against hope that we can overpower the horrors of summertime+autism.
It is not a good combination.
*The title of this post is borrowed from the song "Arriving Somewhere But Not Here" by Porcupine Tree. An excerpt of lyrics:
All my designs, simplified
And all of my plans, compromised
All of my dreams, sacrificed
Ever had the feeling you've been here before?
Drinking down the poison the way you were taught
Every thought from here on in your life begins
And all you knew was wrong?
It's a great song found on PT's Deadwing album, if you're interested.
Monday, February 15, 2010
Stephen is ten
Today, Stephen is ten years old.
We have "officially" known about his autism for just under 8 years now. I've mentioned here before that in some ways, he's doing better than I expected he would: sight-reading, doing pretend play (which is supposed to be "impossible" for kids with autism), and he's quite social and playful most of the time. In other ways, though, the chronic sorrow deepens as the years go by - his total lack of comprehension of using the potty; his inexplicable (but rare) outbursts; his inability to understand most abstract concepts...
We had his birthday party yesterday, and as soon as he saw that I had hung up a sign with his picture on it that said, "Happy Birthday Stephen!" he looked at me and said, "Open?" This concept he DID understand. :-) He has no understanding of age or the passage of this decade of his life, but he had a good time opening his dozen or so new DVDs, surrounded by a loving extended family, and last night while I was grocery shopping, he and his dad put together the Lego Buzz Lightyear figure that David found. This is a new and exciting bit of territory that we hope to explore. David said that Stephen was very interested in the process, and that he consistently matched up pieces to the diagrams in the instruction book, but his lack of fine motor skills made it hard to snap tiny Legos together. Still - it's an encouraging sign and a possible new area of interest, which is always good.
In the life in general category, we've had a pretty good stretch over the last few months, which is probably evidenced by the lack of new blog entries. I do always try to mark the anniversary of Stephen's birth though - it's a good time to reflect.
Stephen has instinctively been calmer since we moved into our house in August - of course, going back to school always helps, but in general he's been happier in our new digs. It's well-documented (don't ask me for sources, I just KNOW) that peaceful, calm surroundings have a positive psychological effect. Stephen can vouch for that, as can the rest of us.
Having recently watched the excellent HBO movie "Temple Grandin," David and I have been talking about how Stephen seems to have something more going on than just autism. Yes, he displays many classic "signs" of autism, but he lacks some significant ones: he seems to have few if any real sensory issues - he loves human contact for the most part. He also started pretending a few years ago, which is very unusual in the hyper-logical mind of many autistics. We know that he has mental retardation - and it hasn't gotten any easier for me to type that. He's ten and is still very enamoured with preschool themes. My dad said something yesterday about how Stephen might be very intelligent but can't communicate it...I had to gently disagree. No super-intelligent child, however limited in communication skills, still adores Blue's Clues, Dora, et al. It's just something we accept as part of who Stephen is.
One thing that I've learned from watching the Temple Grandin movie, and from David's sharing of some things he's been reading in TG's book Thinking in Pictures, is that Stephen's echolalia is his way of double-checking on something he's heard. I find that quite a revelation in and of itself. Also, in the movie, Temple zeroed in on a bit of dialogue from a TV show ("The Man from U.N.C.L.E.") and repeated it over and over, laughing uproariously. The words weren't funny, per se: "Would you like for me to open the gate?" delivered in a lilting tone. But Temple found them very funny. Stephen does that kind of thing ALL the time. It's one of the more charming aspects of his autism, those belly-laughs that don't really make sense, but hey - when is laughter bad?
So, happy tenth birthday to my little man. He showed up in our lives in a moment of surprise and in a hurry - and he keeps us on our toes to this day. He is a precious piece of humanity, given into our hands for safekeeping, and he depends on us utterly. It is a large burden to carry, but we are determined to keep him safe and happy and growing in his own way.
We have "officially" known about his autism for just under 8 years now. I've mentioned here before that in some ways, he's doing better than I expected he would: sight-reading, doing pretend play (which is supposed to be "impossible" for kids with autism), and he's quite social and playful most of the time. In other ways, though, the chronic sorrow deepens as the years go by - his total lack of comprehension of using the potty; his inexplicable (but rare) outbursts; his inability to understand most abstract concepts...
We had his birthday party yesterday, and as soon as he saw that I had hung up a sign with his picture on it that said, "Happy Birthday Stephen!" he looked at me and said, "Open?" This concept he DID understand. :-) He has no understanding of age or the passage of this decade of his life, but he had a good time opening his dozen or so new DVDs, surrounded by a loving extended family, and last night while I was grocery shopping, he and his dad put together the Lego Buzz Lightyear figure that David found. This is a new and exciting bit of territory that we hope to explore. David said that Stephen was very interested in the process, and that he consistently matched up pieces to the diagrams in the instruction book, but his lack of fine motor skills made it hard to snap tiny Legos together. Still - it's an encouraging sign and a possible new area of interest, which is always good.
In the life in general category, we've had a pretty good stretch over the last few months, which is probably evidenced by the lack of new blog entries. I do always try to mark the anniversary of Stephen's birth though - it's a good time to reflect.
Stephen has instinctively been calmer since we moved into our house in August - of course, going back to school always helps, but in general he's been happier in our new digs. It's well-documented (don't ask me for sources, I just KNOW) that peaceful, calm surroundings have a positive psychological effect. Stephen can vouch for that, as can the rest of us.
Having recently watched the excellent HBO movie "Temple Grandin," David and I have been talking about how Stephen seems to have something more going on than just autism. Yes, he displays many classic "signs" of autism, but he lacks some significant ones: he seems to have few if any real sensory issues - he loves human contact for the most part. He also started pretending a few years ago, which is very unusual in the hyper-logical mind of many autistics. We know that he has mental retardation - and it hasn't gotten any easier for me to type that. He's ten and is still very enamoured with preschool themes. My dad said something yesterday about how Stephen might be very intelligent but can't communicate it...I had to gently disagree. No super-intelligent child, however limited in communication skills, still adores Blue's Clues, Dora, et al. It's just something we accept as part of who Stephen is.
One thing that I've learned from watching the Temple Grandin movie, and from David's sharing of some things he's been reading in TG's book Thinking in Pictures, is that Stephen's echolalia is his way of double-checking on something he's heard. I find that quite a revelation in and of itself. Also, in the movie, Temple zeroed in on a bit of dialogue from a TV show ("The Man from U.N.C.L.E.") and repeated it over and over, laughing uproariously. The words weren't funny, per se: "Would you like for me to open the gate?" delivered in a lilting tone. But Temple found them very funny. Stephen does that kind of thing ALL the time. It's one of the more charming aspects of his autism, those belly-laughs that don't really make sense, but hey - when is laughter bad?
So, happy tenth birthday to my little man. He showed up in our lives in a moment of surprise and in a hurry - and he keeps us on our toes to this day. He is a precious piece of humanity, given into our hands for safekeeping, and he depends on us utterly. It is a large burden to carry, but we are determined to keep him safe and happy and growing in his own way.
Sunday, December 20, 2009
Once there were two...
Saturday evening
David and Kerry just walked out the front door to take a stroll around our neighborhood…it’s 7:40 at night, and all the streets of our subdivision are lined with paper bag luminarias – a Christmas tradition here in our little neighborhood. Kerry and I spent an hour this afternoon at a neighbor’s house, filling bags and enjoying meeting some folks who live around here.
Not sure if you’re picking up on the theme here: Kerry and I worked on the bags. David and Kerry went for a walk. I’m sitting here in my living room, watching the shadows of family groups walking down our street enjoying the festive, cold air…because someone had to stay with Stephen. We couldn’t go as a family to work on the neighborhood project – Stephen wouldn’t have understood and would’ve just made things harder. We couldn’t go as a family to walk around and enjoy the lights – Stephen won’t wear coats this year and he would’ve never understood just going for a walk.
It’s been 7 ½ years since Stephen was diagnosed, and today the pain feels as new and raw as if I only found out yesterday. His issues impact EVERYTHING – family life, shopping trips, the TV being on, the lights being off…and I’m so sick of it I could scream. Christmas used to be my favorite time of year. The magic that seems to make most people a little kinder, even for a few days, the chance to buy special things for people I love, the music on the radio…all of that feels empty, no matter how hard I try to recapture the good feelings.
I’m tired of this chronic sorrow. I’m tired of never feeling like my family can just EXIST. I’m tired of hyper-planning every damned move we make. I’m tired of feeling bitter toward others, just because they don’t have the same problems we do. I’m tired of feeling hopeless and in despair, and worrying about a future that seems devoid of any chance of happiness. I’m tired of imagining horrible scenarios about Stephen’s future, about having to admit we can’t care for him, and wondering who WILL.
I am more tired than these words can express of being told that “you must be very special people for God to have given you this child.” I can tell you with total authority that I do NOT feel special. I feel cursed. Stephen seems cursed. I watch this giant baby boy struggle when even a tiny thing goes off schedule. He is sick with a cold now, and no amount of sneaking, cajoling, forcing, mixing or pleading will get him to take some cough medicine so that he doesn’t keep himself and his mother up half the night. No amount of begging, social stories or bargaining will get him to put on a damned coat when it’s 30 degrees out.
I read a book to him today – a Dora the Explorer compilation – and it is a sweet experience for the most part, because we always sing the songs that are Dora standards: the Map song, the Grumpy Old Troll song, the “We Did It” song. But today during story 4 I got distracted by the mailman delivering some packages, and I forgot to sing the Map song at the right time, and I kept reading. Stephen got more and more agitated. When I realized what I had done, I tried to go back and sing it but that was no good. No, he had me finish the 140 page book, then we moved to another room and I had to start all over, at the very beginning of the book, this time carefully singing at all the right times. I’d give anything to be able to TALK to him, to tell him that we’ll read it again later because Mama has some work to do…or to say, “Oops, forgot a song – let’s go back and sing it now.” But that won’t do, not with autism. The path that thoughts follow in his brain is so convoluted, so rigorously one-way, so intent on passing the familiar landmarks…and exhausting to someone who knows there’s a shorter, more direct way to get to the desired destination.
Sunday morning
I’m finishing up this entry the next morning, so there is a predictable lessening of the tension and a more relaxed feeling in my stomach…for now. We are on day 2 of what seems like a very long school-less period of time, and, as hard as I try to focus on the positive, to enjoy Kerry’s excitement, to seek out opportunities for fun, there’s a shadow that persists in hanging over it all – a voice that whispers, “Look at that family over there…four kids, all normal…look how easy it is for them to move through the mall, look how they smile…” or more often and insidiously it slyly says, “Listen to that mom, fussing at her 3 year old, telling him to stop singing so loudly – she doesn’t have a clue, does she? Wouldn’t you like to trade ‘problems’ with her? And all these people around you, fretting over which Christmas sweater to buy or what kind of cappucino to order... Stupid idiots - how dare they think those are worth spending two seconds on?” That’s when I look at myself with disgust, when the bitterness invades my genuinely compassionate soul, and I avoid associating with the outside world because it just hurts too much to be bombarded by images and sounds and situations that remind me of what I have lost, and what I will never recover. My son has been stolen from me in many ways, and will never be independent, never have a girlfriend, never go to college or get married, and there are times when that knowledge is an unbearable weight. Yes, I have an older son who is amazing and talented and a true joy in my life. He is wise and compassionate beyond his years: as I took my turn walking through the lighted streets with Kerry last night, he said, “Sure, mom, I wish I had a normal brother. But nobody could have a better mother.” While I feel woefully undeserving of such praise most of the time, it warmed my heart like nothing else could.
But in May 1999 another son began growing inside me, and he was supposed to grow into a different yet just as aware and engaged person as his big brother. For a little over a year of his life, I lived in days of hope – on the calendar of my past, that year is edged in gold: “The Year Before it all Fell Apart.” I had two darling little boys, two plump angels that I ushered around to the store, to Mother’s Day Out, to family gatherings. One blond toddler whose world was expanding at a great rate, and a dark headed baby who was busy just being a sweet little soul who had come so unexpectedly in our lives. For one year, I lived in peaceful ignorance of what was to come. For just over a year, I didn’t worry about the future – I was smugly secure in the happiness of the road ahead. Two little boys, two years and four days apart in age, who would grow up together – in my mind’s eye I could see Stephen toddling after his brother, the companionship they’d have as playmates, even the inevitable arguments and wrestling matches. I can’t let go of those dreams – they are such a part of me that the constant battle to cut them out of my soul leaves a ragged cut that refuses to heal.
Yes, things could be worse. Yes, I do know that many people struggle with more heartrending things than we do. Of course I know that everyone has problems and that I have no right to claim mine are worse. But right now, in this season, too often I feel desolate and hopeless. Right now, I feel that I’d switch problems with just about anyone.
I am completely and wholly grateful for my children’s existence. I am fortunate to have an extraordinary son who has already surpassed expectations.
But I was supposed to have two.
David and Kerry just walked out the front door to take a stroll around our neighborhood…it’s 7:40 at night, and all the streets of our subdivision are lined with paper bag luminarias – a Christmas tradition here in our little neighborhood. Kerry and I spent an hour this afternoon at a neighbor’s house, filling bags and enjoying meeting some folks who live around here.
Not sure if you’re picking up on the theme here: Kerry and I worked on the bags. David and Kerry went for a walk. I’m sitting here in my living room, watching the shadows of family groups walking down our street enjoying the festive, cold air…because someone had to stay with Stephen. We couldn’t go as a family to work on the neighborhood project – Stephen wouldn’t have understood and would’ve just made things harder. We couldn’t go as a family to walk around and enjoy the lights – Stephen won’t wear coats this year and he would’ve never understood just going for a walk.
It’s been 7 ½ years since Stephen was diagnosed, and today the pain feels as new and raw as if I only found out yesterday. His issues impact EVERYTHING – family life, shopping trips, the TV being on, the lights being off…and I’m so sick of it I could scream. Christmas used to be my favorite time of year. The magic that seems to make most people a little kinder, even for a few days, the chance to buy special things for people I love, the music on the radio…all of that feels empty, no matter how hard I try to recapture the good feelings.
I’m tired of this chronic sorrow. I’m tired of never feeling like my family can just EXIST. I’m tired of hyper-planning every damned move we make. I’m tired of feeling bitter toward others, just because they don’t have the same problems we do. I’m tired of feeling hopeless and in despair, and worrying about a future that seems devoid of any chance of happiness. I’m tired of imagining horrible scenarios about Stephen’s future, about having to admit we can’t care for him, and wondering who WILL.
I am more tired than these words can express of being told that “you must be very special people for God to have given you this child.” I can tell you with total authority that I do NOT feel special. I feel cursed. Stephen seems cursed. I watch this giant baby boy struggle when even a tiny thing goes off schedule. He is sick with a cold now, and no amount of sneaking, cajoling, forcing, mixing or pleading will get him to take some cough medicine so that he doesn’t keep himself and his mother up half the night. No amount of begging, social stories or bargaining will get him to put on a damned coat when it’s 30 degrees out.
I read a book to him today – a Dora the Explorer compilation – and it is a sweet experience for the most part, because we always sing the songs that are Dora standards: the Map song, the Grumpy Old Troll song, the “We Did It” song. But today during story 4 I got distracted by the mailman delivering some packages, and I forgot to sing the Map song at the right time, and I kept reading. Stephen got more and more agitated. When I realized what I had done, I tried to go back and sing it but that was no good. No, he had me finish the 140 page book, then we moved to another room and I had to start all over, at the very beginning of the book, this time carefully singing at all the right times. I’d give anything to be able to TALK to him, to tell him that we’ll read it again later because Mama has some work to do…or to say, “Oops, forgot a song – let’s go back and sing it now.” But that won’t do, not with autism. The path that thoughts follow in his brain is so convoluted, so rigorously one-way, so intent on passing the familiar landmarks…and exhausting to someone who knows there’s a shorter, more direct way to get to the desired destination.
Sunday morning
I’m finishing up this entry the next morning, so there is a predictable lessening of the tension and a more relaxed feeling in my stomach…for now. We are on day 2 of what seems like a very long school-less period of time, and, as hard as I try to focus on the positive, to enjoy Kerry’s excitement, to seek out opportunities for fun, there’s a shadow that persists in hanging over it all – a voice that whispers, “Look at that family over there…four kids, all normal…look how easy it is for them to move through the mall, look how they smile…” or more often and insidiously it slyly says, “Listen to that mom, fussing at her 3 year old, telling him to stop singing so loudly – she doesn’t have a clue, does she? Wouldn’t you like to trade ‘problems’ with her? And all these people around you, fretting over which Christmas sweater to buy or what kind of cappucino to order... Stupid idiots - how dare they think those are worth spending two seconds on?” That’s when I look at myself with disgust, when the bitterness invades my genuinely compassionate soul, and I avoid associating with the outside world because it just hurts too much to be bombarded by images and sounds and situations that remind me of what I have lost, and what I will never recover. My son has been stolen from me in many ways, and will never be independent, never have a girlfriend, never go to college or get married, and there are times when that knowledge is an unbearable weight. Yes, I have an older son who is amazing and talented and a true joy in my life. He is wise and compassionate beyond his years: as I took my turn walking through the lighted streets with Kerry last night, he said, “Sure, mom, I wish I had a normal brother. But nobody could have a better mother.” While I feel woefully undeserving of such praise most of the time, it warmed my heart like nothing else could.
But in May 1999 another son began growing inside me, and he was supposed to grow into a different yet just as aware and engaged person as his big brother. For a little over a year of his life, I lived in days of hope – on the calendar of my past, that year is edged in gold: “The Year Before it all Fell Apart.” I had two darling little boys, two plump angels that I ushered around to the store, to Mother’s Day Out, to family gatherings. One blond toddler whose world was expanding at a great rate, and a dark headed baby who was busy just being a sweet little soul who had come so unexpectedly in our lives. For one year, I lived in peaceful ignorance of what was to come. For just over a year, I didn’t worry about the future – I was smugly secure in the happiness of the road ahead. Two little boys, two years and four days apart in age, who would grow up together – in my mind’s eye I could see Stephen toddling after his brother, the companionship they’d have as playmates, even the inevitable arguments and wrestling matches. I can’t let go of those dreams – they are such a part of me that the constant battle to cut them out of my soul leaves a ragged cut that refuses to heal.
Yes, things could be worse. Yes, I do know that many people struggle with more heartrending things than we do. Of course I know that everyone has problems and that I have no right to claim mine are worse. But right now, in this season, too often I feel desolate and hopeless. Right now, I feel that I’d switch problems with just about anyone.
I am completely and wholly grateful for my children’s existence. I am fortunate to have an extraordinary son who has already surpassed expectations.
But I was supposed to have two.
Thursday, November 5, 2009
Better late than never
To the faithful few who have asked me for a new entry, I apologize for my lengthy absence. The move to the new house, the unpacking of boxes, the searching for items, the surgery on my hand, the surgery on my father...all of these things conspired to keep me away.
I don't know what kind of entry this will be, but I'll type out what comes to mind, and we'll see what the result is.
We are settled into the new house and are enjoying having our own home very much. Gone are the days of worrying that Stephen's being too loud or that Kerry's exuberant Rock Band playing is going to disturb neighbors. I have gloried in having a yard to putter around in - I've cleaned out flower beds, transplanted things (some of them even lived!) and spent happy hours planning and designing for the outdoors.
Stephen did very well with getting used to the new house. Inexplicably, he still gets out of bed every single night and finishes sleeping on the couch - but hey, at least he's sleeping and not waking me up. Kerry loves being in a neighborhood, and has several friends on our street. That fact alone makes us very happy to be where we are. We enjoyed a Halloween of both going out (David took Kerry and friends) and receiving Trick-or-Treaters (Stephen and I), and it was just so...traditional and normal and chock full of Americana. I highly recommend it.
On to everyday matters - Stephen continues to adore school. Why won't someone mandate school be in session for kids like him all year long? So much of our stress would go away if that were true... Kerry is in middle school now, and he tried out for and was chosen to be a percussionist in the band, and he is thriving. He's about the coolest kid around, even if he IS mine - caring, sweet, smart. He makes me laugh every day, and I can't imagine being much prouder. At work yesterday I drank tea out of a Camp Sumatanga mug that Kerry brought back for me after two days of science camp last year. He was miserable and didn't like being there, but he still wanted to bring me a souvenir...that's the kind of kid he is, and I love him for it.
The weekends continue to be very challenging at times. Stephen hasn't lost his love of "dee-dees" (DVDs) so I have to plan shopping trips carefully. The problem is that Stephen wants to get ready and go right after he wakes up on Saturday and Sunday. We spend most of the morning saying, "Later!" I made a social story for him about waiting till 2:00 p.m. but he still asks to go someplace so often that I have to plug up my ears or else go nuts. I miss looking forward to at least a semblance of leisure on the weekends...the time I spend outdoors is treasured, maybe even more so because of its infrequency.
We perpetually struggle with general autism stuff - mysterious crying spells, picky eating, lack of interest in potty-training, insistence on routine. I can't say it's gotten any easier, in spite of the years of experience. But there are still the moments of unadulterated joy, of belly laughs that would melt even the coldest heart, of precious little insights into Stephen's world. He has discovered the fun of YouTube, where a child with autism can watch his favorite clips (from Thomas to the 20th Century Fox fanfare) over and over...he found a video of a boy sharing his collection of Thomas VHS tapes, probably about 40 in all, and I realized a few weeks ago that Stephen had gone to his room and lined his tapes up in the same order. He loves to take us into his room to watch him name off his tapes. He mimics the boy from YouTube, down to the inflections and every "and" or "uh" the boy uses. It's amazing to see. So, all those things, fun and heartbreaking, combine to weave the fabric of our days.
The middle school years, high school years, and beyond are looming, and we still have so many questions...
But now, today, my outlook is good. I'm on my second day of early morning walks, and I can also recommend those, if your schedule permits. Unlike my past bouts with "fitness," my outlook is different. I just want to get out and enjoy the cool quietness of my new neighborhood, preparing myself for the day ahead - I'm not trying to run a marathon here. I'm not focused on a destination, I'm merely enjoying the journey.
These, friends, are the few days of autumn that we are granted every year. This morning as I walked, I saw a maple tree, its leaves a dappled mix of red and gold, the pale morning sun shining through its canopy, and the very light captured in that space was golden and alive and warm and so much more intense than the wan rays peeking over the horizon. I stopped, my breath taken away by the beauty of it all...and I've filed that image away for a moment down the road, when I'm overwhelmed and tired and gray.
I hope you have moments like that today.
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, 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.