Early yesterday afternoon, my phone rang. My heart began to race when I heard Braden's teacher on the other end of the line. She's a pro, and she let me know immediately that there wasn't an emergency. And exhale!
Braden had a bit of a toileting accident (which is unusual, I'm blessed to say). It seems that in all of the chaos of moving, I had overlooked sending in a spare set of clothes. She was calling to let me know that they had put him in a pull-up they had on hand, and that he seemed to be tolerating it okay. I told her that I expected he would but asked if she needed me to bring a change of clothes over to the school (even though I really, really didn't want to go).
She said it was no big deal; she really just wanted to touch base so I wasn't confused or concerned when he got home. She was still dancing around something, I could tell, so I countered with, "Well, if anything changes and you need me to bring underwear or shorts, I can." She answered that if I didn't mind, if he wanted the pull-up off they could just pull the shorts back up and send him home that way.
See, sometimes this life is funny! She didn't just come right out and ask, but she wanted to be sure that I wouldn't freak out if he came home commando. And this isn't even the most awkward conversation on record about B. (Hands down that would be about him rubbing himself on tables and chairs in his 3rd grade classroom, but those issues are a whole other post).
I assured her that I was fine with that solution. Maybe because I'm lazy and didn't want to drive the 2 miles to his school. Maybe because I've learned to treasure my downtime. But the reason I gave for my permission was that whatever she sent him home in, it would be better than what I'd gotten him to wear around here all weekend.
We both had a good laugh. This stuff is real. Sometimes it's even really funny. But you have to choose to find the humor in it. That's how I get through my emotions on most days; I choose to laugh. (Though I'm also the first to admit that the special needs life has warped my sense of humor).
Wednesday, May 30, 2012
Tuesday, May 29, 2012
Survival of the Fittest: Life in the Lewis House
The holiday weekend was LONG, but we all survived! One more broken window pane, another sizable dent in the living room drywall, a broken wall clock, and a few band-aids but no major incidents. Still, if the last four days are any indicator of how my summer is going to go (and I know that it is) I'm more than a little nervous.
The paradox of raising this child is how very much I love him and how very much that doesn't matter. Okay it matters, but it ultimately doesn't change the gritty reality that is our life. No amount of love, or even passion or dedication, can change our circumstances.
He has a developmental disability that keeps him from being able to form typical emotional bonds. If it were that simple, if there was just nothing, it would be easier to take. But he hugs me. He kisses me. He laughs with me, and we sing songs together (Well, I sing and he engages in his own way).
And then the inevitable happens. I have to impose a boundary on him. No, he can't have a fourth frozen chicken patty (because at some point I have to stop the processed-food monster). No, he can't watch YouTube videos on my telephone (because I let it go that he was hitting the $300 iPhone [that I couldn't really afford the first time] on the table for 15 minutes, but he's started throwing it at the wall in between clips).
You may be reading that and thinking that I shouldn't be telling him "No." Mmmhmm...I'm actually pretty good at this parenting thing. Just as often I present the information with a positive spin: "Let's put the phone down and go swing!" in a singsong voice with a scary, big smile. I redirect. I offer positive reinforcement: "I like how you're sitting quietly! It's so nice when you leave the phone on your lap!" When all that fails, I can bribe with the best of them.
But the reality is that my son has a zero tolerance policy for the concept of no. During his first hospitalization, the attending psychiatrist told me on day 21 that they'd found Braden's baseline. She said, "If you agitate his comfort level, you get negative (aggressive) behavior." At the time, that infuriated me. 21 days to say something that basic? I realize now that she was spot on, and it's that's simple. And that complex.
Since he was two years old, we've been working on giving him coping skills to manage his emotion. All parents do that. Most just make some noticeable progress. At almost 12 years old, his go-to is still hitting, kicking, and screaming. When he was younger it was embarrassing. Frustrating. Exhausting. Now, it's all that and more.
I gave birth to someone who is abusive. To me, to his brother, to teachers and classmates. Truthfully, to anyone he can get his hands or feet on in a moment of rage. I wish that was melodrama, but it's not.
Again, the paradox of raising this child is how very much I love him and how very much that doesn't matter. I know that those amazing moments --of attachment, of joy, or what I interpret as love--are the exception and not the rule. I understand that his confusion, his frustration, his anger are manifestations of his disability overtaking him, in those moments it's running him and clouding his already limited ability to act rationally.
But I have toe-shaped bruises all over my legs. They're kind of like polka dots: yellow, green, purple. My hands go numb on an almost daily basis as a result of karate-like chops to my upper arms. I've been hit and kicked from head to toe.
Last night I had to call my husband in to help me give him a bath. To give him a bath. Why the behavior? I was trying to wash him. To get some of the flith from a weekend of picking leaves off of plants and trees off of his hands. I could not manage giving my son a bath. He was kicking the fiberglass tub surround so hard I was afraid he'd crack it.
Lots of people think they know about Autism. They likely don't know it like this. And I swear to you, I'm STILL being polite. I'm not telling you the whole story.
I've had professionals tell me this isn't "just ASD." Clearly this child has some co-occurring disorder. Whatever. I don't really care what it's called (although I'm pretty sure this is textbook old-school Autism). I just know that I need to call it something in an attempt to find resources. It used to be that I was searching for pathways to improvement or supports to advance his abilities. Now, I'm just looking for the resources to help us survive.
The paradox of raising this child is how very much I love him and how very much that doesn't matter. Okay it matters, but it ultimately doesn't change the gritty reality that is our life. No amount of love, or even passion or dedication, can change our circumstances.
He has a developmental disability that keeps him from being able to form typical emotional bonds. If it were that simple, if there was just nothing, it would be easier to take. But he hugs me. He kisses me. He laughs with me, and we sing songs together (Well, I sing and he engages in his own way).
And then the inevitable happens. I have to impose a boundary on him. No, he can't have a fourth frozen chicken patty (because at some point I have to stop the processed-food monster). No, he can't watch YouTube videos on my telephone (because I let it go that he was hitting the $300 iPhone [that I couldn't really afford the first time] on the table for 15 minutes, but he's started throwing it at the wall in between clips).
You may be reading that and thinking that I shouldn't be telling him "No." Mmmhmm...I'm actually pretty good at this parenting thing. Just as often I present the information with a positive spin: "Let's put the phone down and go swing!" in a singsong voice with a scary, big smile. I redirect. I offer positive reinforcement: "I like how you're sitting quietly! It's so nice when you leave the phone on your lap!" When all that fails, I can bribe with the best of them.
But the reality is that my son has a zero tolerance policy for the concept of no. During his first hospitalization, the attending psychiatrist told me on day 21 that they'd found Braden's baseline. She said, "If you agitate his comfort level, you get negative (aggressive) behavior." At the time, that infuriated me. 21 days to say something that basic? I realize now that she was spot on, and it's that's simple. And that complex.
Since he was two years old, we've been working on giving him coping skills to manage his emotion. All parents do that. Most just make some noticeable progress. At almost 12 years old, his go-to is still hitting, kicking, and screaming. When he was younger it was embarrassing. Frustrating. Exhausting. Now, it's all that and more.
I gave birth to someone who is abusive. To me, to his brother, to teachers and classmates. Truthfully, to anyone he can get his hands or feet on in a moment of rage. I wish that was melodrama, but it's not.
Again, the paradox of raising this child is how very much I love him and how very much that doesn't matter. I know that those amazing moments --of attachment, of joy, or what I interpret as love--are the exception and not the rule. I understand that his confusion, his frustration, his anger are manifestations of his disability overtaking him, in those moments it's running him and clouding his already limited ability to act rationally.
But I have toe-shaped bruises all over my legs. They're kind of like polka dots: yellow, green, purple. My hands go numb on an almost daily basis as a result of karate-like chops to my upper arms. I've been hit and kicked from head to toe.
Last night I had to call my husband in to help me give him a bath. To give him a bath. Why the behavior? I was trying to wash him. To get some of the flith from a weekend of picking leaves off of plants and trees off of his hands. I could not manage giving my son a bath. He was kicking the fiberglass tub surround so hard I was afraid he'd crack it.
Lots of people think they know about Autism. They likely don't know it like this. And I swear to you, I'm STILL being polite. I'm not telling you the whole story.
I've had professionals tell me this isn't "just ASD." Clearly this child has some co-occurring disorder. Whatever. I don't really care what it's called (although I'm pretty sure this is textbook old-school Autism). I just know that I need to call it something in an attempt to find resources. It used to be that I was searching for pathways to improvement or supports to advance his abilities. Now, I'm just looking for the resources to help us survive.
Saturday, May 26, 2012
You can't make this stuff up...
As much as we would have loved to have packed up and taken advantage of the long weekend like so many families do--camping, day-tripping, etc--we've learned our lesson. I think we gave it more than an average effort. Throughout Braden's life, we've tried to make sure that he doesn't miss out on any typical childhood experiences because of Autism.
As a family, we've been camping. We've rented cabins. We've gone to the museum, the zoo, the water park, and the amusement park. We've seen baseball games and traveling musicals. We've even gone to Walt Disney World (Believe me, I know we've been very blessed to even have the opportunity to do half of these things). And while every trip has had good moments, the reality is that the stress has far outweighed the fun. (If you can really even call it that).
So when I say we've learned, I mean we've learned. With our recent move, there was no question that our finances would benefit from staying put. There's still plenty to unpack or organize. And who in the world would care for our dozen hens if we left? Even more than all of that, we're just tired. (I think that's the hardest part of the 'tism for me. The sheer exhaustion that isn't cured by naps or good nights of sleep).
Of course, rest isn't exactly what we're getting at home. We tilled up the patch that will become our family's first garden last night. And then I picked out the rocks and (damn it all!) potatoes that littered the dirt. The normal routine must also be kept, and that means late to bed and early to rise for Captain ASD.
Today I got the opportunity to spend some time with my little guy; we decided to bake applesauce cookies. So Big B played outside while Daddy did...whatever it is Daddy does outside. As I was getting ready to put the first batch of cookies in the oven, in walked B. What followed surely must only happen in ASD-land.
B grabbed a handful of fries that were left over from lunch and handed me the bottle of ketchup. As I turned to grab the bottle, I processed the scene. Braden was stark naked, dripping wet and holding the food in his hands. Blood was running down his arm.
I took the towel off my shoulder and pressed it to his arm and ushered him into the bathroom. He sat down on the toilet, the lid of which was up, while I held the towel and fumbled for the peroxide and antibiotic cream. He starts to tinkle because, hey, he's on the potty. Trying to shove a fry into his mouth, he dropped a few others onto the bathroom floor.
So I'm half-heartedly trying to tell him not to eat the floor fries (we have 3 boys living here!) and whole-heartedly trying to clean up the blood. I realize that the blood is coming from a scabbed-over mosquito bite that's been torn open, so we don't have a serious injury on our hands. I remember that the name-brand antibiotic cream is near Braden's bed because he asked for it by name the other night as he er, um, stimulated himself to sleep (ASD and puberty may prove to be a lethal combination for me, by the way). I decide he'll be fine and slap a Band-Aid on it.
Crisis averted, I suppose, but as the moment passes I can't help but feel like I'm not managing this disorder very well. The number of moments that are like this one are more frequent than you would believe. But then, my angel puts it all into perspective. Garret walks into the hallway, surveys the scene, shakes his head and says, "Oh, Braden. You gotta love him."
Ah, Garret. The completely dry, totally dressed, not bleeding child who reminds me not only that I'm not a complete failure as a mother, but also that it's all going to be okay...as long as we keep staying at home. I mean, really, do you want to spend your holiday with this unfolding at the campsite next to yours?
As a family, we've been camping. We've rented cabins. We've gone to the museum, the zoo, the water park, and the amusement park. We've seen baseball games and traveling musicals. We've even gone to Walt Disney World (Believe me, I know we've been very blessed to even have the opportunity to do half of these things). And while every trip has had good moments, the reality is that the stress has far outweighed the fun. (If you can really even call it that).
So when I say we've learned, I mean we've learned. With our recent move, there was no question that our finances would benefit from staying put. There's still plenty to unpack or organize. And who in the world would care for our dozen hens if we left? Even more than all of that, we're just tired. (I think that's the hardest part of the 'tism for me. The sheer exhaustion that isn't cured by naps or good nights of sleep).
Of course, rest isn't exactly what we're getting at home. We tilled up the patch that will become our family's first garden last night. And then I picked out the rocks and (damn it all!) potatoes that littered the dirt. The normal routine must also be kept, and that means late to bed and early to rise for Captain ASD.
Today I got the opportunity to spend some time with my little guy; we decided to bake applesauce cookies. So Big B played outside while Daddy did...whatever it is Daddy does outside. As I was getting ready to put the first batch of cookies in the oven, in walked B. What followed surely must only happen in ASD-land.
B grabbed a handful of fries that were left over from lunch and handed me the bottle of ketchup. As I turned to grab the bottle, I processed the scene. Braden was stark naked, dripping wet and holding the food in his hands. Blood was running down his arm.
I took the towel off my shoulder and pressed it to his arm and ushered him into the bathroom. He sat down on the toilet, the lid of which was up, while I held the towel and fumbled for the peroxide and antibiotic cream. He starts to tinkle because, hey, he's on the potty. Trying to shove a fry into his mouth, he dropped a few others onto the bathroom floor.
So I'm half-heartedly trying to tell him not to eat the floor fries (we have 3 boys living here!) and whole-heartedly trying to clean up the blood. I realize that the blood is coming from a scabbed-over mosquito bite that's been torn open, so we don't have a serious injury on our hands. I remember that the name-brand antibiotic cream is near Braden's bed because he asked for it by name the other night as he er, um, stimulated himself to sleep (ASD and puberty may prove to be a lethal combination for me, by the way). I decide he'll be fine and slap a Band-Aid on it.
Crisis averted, I suppose, but as the moment passes I can't help but feel like I'm not managing this disorder very well. The number of moments that are like this one are more frequent than you would believe. But then, my angel puts it all into perspective. Garret walks into the hallway, surveys the scene, shakes his head and says, "Oh, Braden. You gotta love him."
Ah, Garret. The completely dry, totally dressed, not bleeding child who reminds me not only that I'm not a complete failure as a mother, but also that it's all going to be okay...as long as we keep staying at home. I mean, really, do you want to spend your holiday with this unfolding at the campsite next to yours?
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