Stardate 2015.7 (or in the American calendar, that would be July, 2015). We're supposed to be having a drought. Not enough snow last winter, they say. And yet all through May, it never stopped raining. It seemed like every week there was another storm, and another, and don't get me wrong; I don't mind the rain at all. At least, not the stuff falling from the sky onto the grass outside.
But the storms of life are wearing us a little thin around our home these days. Ben is feeling the brunt of them. Here's how I know:
Every week, I take him to cello lessons. He's been playing since last October, and though admittedly I'm a biased observer, I think he's pretty good. His teacher tells me he has a gift--an ear for the sound of the cello, and an unique ability to remember the music and reproduce it. Besides that, Ben will tell you he was born with "cello hands"--long, strong fingers perfectly constructed to press down the strings on the cello's fingerboard. Look--I don't care if he has a gift or if he has natural "cello hands." I only care that he is holding a musical instrument and producing music, which affords him an opportunity to express emotion. Anytime he gets that opportunity, we're going to take it.
So a few weeks ago, right in the middle of his lesson, doing nothing in particular except fiddling through the middle of a relatively benign new song, Ben suddenly slumped back in his chair, dropped his cello down against his chest with one hand, dangled his bow down to the floor with his other hand, and burst into tears. I was sitting on the couch across from him, and at first I wasn't quite sure what was happening, so I said, "Ben, what's going on, Buddy?" He just looked at me with the most perplexed expression on his face, while tears streamed down his cheeks. His teacher was as confused as I was.
I hurried to his side and lifted his cello off him, which his teacher immediately took from me in turn. I cradled Ben's head in my hands and just held him for a minute, and then the moment passed and he was fine again. He took his cello back, gave me a quick upward twist of his mouth that resembled something like a smile, and went right back to the song he had been learning.
Okay....
Yesterday we went to a movie as a family, and the tics started up. This has been a recurrent theme for the past couple months...every time we take Ben to a movie, he gets into that theater, sits down, and begins this terrible, awful, really unsettling snorting sound--something between a sniff and a snore (more on the snore side). When the theater is relatively empty, this is not much of a problem except that it drives the family crazy. But yesterday the theater was completely full--every last seat filled with moviegoers excited to watch the adventures of Ant Man unfold. And it began. One loud snort, then again, and again, and again. Soon the guy in front of us was turning around, glaring at me (as if I was supposed to control my child, and as irritated as I was at his intolerance, I couldn't blame him). I whispered to Ben to stop, and he let out this [not quiet] whimper, buried his head in his hands, and emitted several more snorts.
"Ben!" I whispered, even more urgently as the man ahead of us shot us yet another even less patient glare. This time Ben turned completely backwards in his seat and began crying, all the while snorting and sniffing. The impatient man and his wife rose and moved to unoccupied seats at the front of the theater. Another snort. A man two rows ahead of us gave me a look. I'm a little embarrassed that I tried to coax Ben through almost an hour of the movie, distracting him with whispered conversation, pulling him onto my lap...nothing worked and the snorting continued to escalate until Ben begged to leave, crying and pleading that he couldn't control what was happening. I told my husband that I was taking Ben home, scooped up our things and left. I'm surprised we didn't receive some applause from our surrounding seatmates upon our departure.
As soon as we were in the lobby, the snorting stopped, as if it had never happened. As we walked to the car, I asked Ben what was going on. He doesn't know. The theater is loud, and the screen is bright and overwhelming, I guess. It's too much stimulation. But this tic is relatively recent and getting worse every time we go to the theater now. Ben really wants to figure out a solution before Star Wars comes out in December. Until then, I think our movie days are over.
I guess some of this is just about all the change that Ben is experiencing. I haven't mentioned that he didn't get into American Heritage Academy, but we found a school about 20 minute away--a charter school with a Space Center (one of Ben's "things") that has a heavy emphasis on technology and fine arts. We feel like this is a great fit for Ben, and as it is a 7th - 12th grade school, Ben's brother Joey will also be attending. So, new school, birthday (Ben turned 12 last week, which means some big changes for him within our religion as he became a "Deacon" and will take on some responsibilities within the church now), Ben's oldest brother away on a church mission, Ben's sister leaving for college in a few weeks...everything is unsettled.
It's storming, and all the change and uncertainty is frightening and confusing--hard to make sense of for most of us, really. But the chaos turns Ben into a tic-ing time bomb, I guess. And I need to figure out how to diffuse him...and soon.
Sunday, July 26, 2015
Friday, April 24, 2015
Stripping Down and Starting Over
It's been more than a year since I posted on Ben's blog. We've been doing fine. There hasn't been much to report. Once you get into a rhythm, you just stick with it, and that's where we've been for the last year or so. During the school year, it looks exactly (and I mean, exactly) like this: I get Ben up, he takes a shower, puts on all clothing except pants and shoes, drinks a Strawberry Instant Breakfast and takes his medication, watches t.v. for 1/2 hour, puts on his pants and shoes, slings his book bag over his shoulder, and off he goes to school. Even dropping him off includes certain procedures and rituals of stopping, saying routine words, and waving at just the right moment. After school, every day has its own routine, too, but there is a routine. And so long as we stick to it, life is pretty normal.
But things are changing now. For starters, we are a month away from finishing elementary school, and figuring out where Ben will go to Junior High. The very term "Junior High" churns my stomach. For "normal" children..."neuro-typical" children...Junior High is essentially just a cesspool of raging hormones, social turmoil, and interpersonal drama. Throw in a kid with autism, and while there will be some children who stick up for him, there will be plenty of others who, because of their own limited and seriously lacking self-identify and self-esteem, will see him as easy prey. I have no doubt that he will be bullied and mocked. And I know how Ben handles being bullied and mocked: It typically involves swear words, physical retaliation, and once home, an immediate emotional meltdown accompanied by a strip down to nakedness so that he can climb into bed under his autism blanket and spend the rest of the day with his headphones on watching something on his iPod. Granted, this coping strategy is considerably better than emptying all his drawers onto his floor, shattering dishes, and spitting and punching me or anyone else who comes into the room to intervene...I am counting my blessings for the improvements he's made in that regard. But that would still be a pretty hard way to spend the next three years.
In light of that potential outcome, we are desperately trying to get Ben into a private school next year called "American Heritage Academy." It's expensive, but a cost I will willingly pay if they will accept him. Here are the caveats: First, he has to demonstrate that he can function within the mainstream classrooms, because they don't offer resource or special education classes. The teachers at the elementary school tell me that Ben is perfectly capable of succeeding--academically, at least--in mainstream environments. In fact, I got a phone call from the resource teacher just two days ago who said that she just completed Ben's final testing, and he tested "off the charts" in both math and writing--both areas where he had been working in the resource room on his IEP. She suggested that we talk about dropping his IEP as we move into Junior High and consider just giving Ben a 504 instead. [For those of you don't know the difference, an IEP is a state-funded plan that provides for resources such as speech therapy, counseling, resource and special education help, etc., where a 504 includes no funding but allows a child to receive some accommodations such as extra time on tests, sitting closer to the teacher, and so forth. Both are technically "legally binding," though a 504 has very little "bite" when compared to an IEP. Children with certain diagnoses are given an IEP (including autism and other learning disabilities); children with other diagnoses (like ADD, for example) are usually only given a 504.]
Let me digress for a minute to explode about that suggestion. ARE YOU KIDDING ME??? She wants to strip away the only safety net that we have for this autistic child--the only thing that gives us access to services that allow him to have small classes, to work with the psychologist, to get extra help--and move him to a 504 where he essentially will get NO services whatsoever, but could get a few little accommodations if he needed them? The only reason he has finally begun to succeed after all these years is because of his IEP. Now, moving into the cesspool, she wants to yank that out from beneath him with a pat on the head and a "Good luck--go get 'em, Tiger!"? Look. I can understand that he doesn't need to be in resource for math and writing. Great. But he is still far below his peers socially and behaviorally. He still needs an IEP. He still needs access to other services (social skills support, small group environments, etc.), even if they aren't academic. I will fight all the way to the White House to hold onto his IEP as we move into Junior High if that is necessary. What in the high holy heavens could she possibly be thinking? Ok. End of rant. Deep breath.
At any rate, if we get into American Heritage, whether he has an IEP or a 504 becomes a moot point (since they don't offer special education anyway), except that if he has an IEP, there is state funding allocated for the IEP that we can access and apply to his tuition at American Heritage. It's not much...a pittance, really...but every bit helps, right? Besides, it takes more than Valley View saying Ben could keep up in the mainstream classroom. He actually has to prove it by doing some testing and by demonstrating that he is academically qualified to perform at a 7th grade level. So here's the big question: does the public school system version of 6th/7th grade readiness match what American Heritage is going to test him at and expect him to be at? I'm really anxious about that, especially since he does need a few accommodations still for handwriting (he has a diagnosed dysgraphia--handwriting disability) and math facts to keep up. Testing is on May 8th. Fingers and toes crossed.
The bigger issue, and the one that really scares me, is that even if Ben passes the testing, American Heritage still has to decide that Ben is a "good fit" for the school. We filled out all kinds of paperwork, including a long series of paragraphs that Ben had to write himself, and Ben had to go in for an interview that I thought he did a good job with, except that...well...he has autism. So he talks with a unique affect, and he has unique tics that he does with his throat and his face. It's clear that he would be "different" from the kids there who don't have autism. Will they discriminate against him because of his autism? Will they not want him because he's different? Will they feel like he is just too much work for their teachers, or that he might be too distracting for the other students? These aren't issues we've ever had to face before.
It's probably not the last time we'll have to face them, though. Ben will come up against these kinds of questions every time he applies for a job, or asks a girl out on a date when he gets older. So times are a-changing. As Ben gets older, some of the more real and long-term implications of having autism are becoming evident, and while we don't have to cross any bridges just yet, it's a little strange to see them begin to dot the horizon. Ben isn't the only one who likes the routine. I like it, too. I don't want it to change.
But things are changing now. For starters, we are a month away from finishing elementary school, and figuring out where Ben will go to Junior High. The very term "Junior High" churns my stomach. For "normal" children..."neuro-typical" children...Junior High is essentially just a cesspool of raging hormones, social turmoil, and interpersonal drama. Throw in a kid with autism, and while there will be some children who stick up for him, there will be plenty of others who, because of their own limited and seriously lacking self-identify and self-esteem, will see him as easy prey. I have no doubt that he will be bullied and mocked. And I know how Ben handles being bullied and mocked: It typically involves swear words, physical retaliation, and once home, an immediate emotional meltdown accompanied by a strip down to nakedness so that he can climb into bed under his autism blanket and spend the rest of the day with his headphones on watching something on his iPod. Granted, this coping strategy is considerably better than emptying all his drawers onto his floor, shattering dishes, and spitting and punching me or anyone else who comes into the room to intervene...I am counting my blessings for the improvements he's made in that regard. But that would still be a pretty hard way to spend the next three years.
In light of that potential outcome, we are desperately trying to get Ben into a private school next year called "American Heritage Academy." It's expensive, but a cost I will willingly pay if they will accept him. Here are the caveats: First, he has to demonstrate that he can function within the mainstream classrooms, because they don't offer resource or special education classes. The teachers at the elementary school tell me that Ben is perfectly capable of succeeding--academically, at least--in mainstream environments. In fact, I got a phone call from the resource teacher just two days ago who said that she just completed Ben's final testing, and he tested "off the charts" in both math and writing--both areas where he had been working in the resource room on his IEP. She suggested that we talk about dropping his IEP as we move into Junior High and consider just giving Ben a 504 instead. [For those of you don't know the difference, an IEP is a state-funded plan that provides for resources such as speech therapy, counseling, resource and special education help, etc., where a 504 includes no funding but allows a child to receive some accommodations such as extra time on tests, sitting closer to the teacher, and so forth. Both are technically "legally binding," though a 504 has very little "bite" when compared to an IEP. Children with certain diagnoses are given an IEP (including autism and other learning disabilities); children with other diagnoses (like ADD, for example) are usually only given a 504.]
Let me digress for a minute to explode about that suggestion. ARE YOU KIDDING ME??? She wants to strip away the only safety net that we have for this autistic child--the only thing that gives us access to services that allow him to have small classes, to work with the psychologist, to get extra help--and move him to a 504 where he essentially will get NO services whatsoever, but could get a few little accommodations if he needed them? The only reason he has finally begun to succeed after all these years is because of his IEP. Now, moving into the cesspool, she wants to yank that out from beneath him with a pat on the head and a "Good luck--go get 'em, Tiger!"? Look. I can understand that he doesn't need to be in resource for math and writing. Great. But he is still far below his peers socially and behaviorally. He still needs an IEP. He still needs access to other services (social skills support, small group environments, etc.), even if they aren't academic. I will fight all the way to the White House to hold onto his IEP as we move into Junior High if that is necessary. What in the high holy heavens could she possibly be thinking? Ok. End of rant. Deep breath.
At any rate, if we get into American Heritage, whether he has an IEP or a 504 becomes a moot point (since they don't offer special education anyway), except that if he has an IEP, there is state funding allocated for the IEP that we can access and apply to his tuition at American Heritage. It's not much...a pittance, really...but every bit helps, right? Besides, it takes more than Valley View saying Ben could keep up in the mainstream classroom. He actually has to prove it by doing some testing and by demonstrating that he is academically qualified to perform at a 7th grade level. So here's the big question: does the public school system version of 6th/7th grade readiness match what American Heritage is going to test him at and expect him to be at? I'm really anxious about that, especially since he does need a few accommodations still for handwriting (he has a diagnosed dysgraphia--handwriting disability) and math facts to keep up. Testing is on May 8th. Fingers and toes crossed.
The bigger issue, and the one that really scares me, is that even if Ben passes the testing, American Heritage still has to decide that Ben is a "good fit" for the school. We filled out all kinds of paperwork, including a long series of paragraphs that Ben had to write himself, and Ben had to go in for an interview that I thought he did a good job with, except that...well...he has autism. So he talks with a unique affect, and he has unique tics that he does with his throat and his face. It's clear that he would be "different" from the kids there who don't have autism. Will they discriminate against him because of his autism? Will they not want him because he's different? Will they feel like he is just too much work for their teachers, or that he might be too distracting for the other students? These aren't issues we've ever had to face before.
It's probably not the last time we'll have to face them, though. Ben will come up against these kinds of questions every time he applies for a job, or asks a girl out on a date when he gets older. So times are a-changing. As Ben gets older, some of the more real and long-term implications of having autism are becoming evident, and while we don't have to cross any bridges just yet, it's a little strange to see them begin to dot the horizon. Ben isn't the only one who likes the routine. I like it, too. I don't want it to change.
Monday, February 3, 2014
Great. Now I Have Guilt!
Toy Story fans everywhere will remember that iconic film moment when Rex the toy dinosaur, upon finding out that he has falsely accused Woody of trying to get rid of Buzz Lightyear, cries out, "Great. Now I have guilt!" I've been relating to that sentiment a lot lately, and I'm not sure what to do about it.
Several months ago, my husband Chris took a position with a therapeutic wilderness program for troubled youth. I'm sure most people know about these programs where youth who just can't function safely in their own home environments (due to drug abuse and other adolescent stupidity) are taken to a kind of long-term camping experience, stripped of all their personal belongings and entitlements, and taught to value the blessings they have in their lives.
Well, one or two months ago, Ben had fallen into one of his catastrophic, hurricane-force meltdowns about who-knows-what. The meltdown began in the living room where siblings and friends-of-siblings were watching t.v. That meant that my first order of business was to get Ben out of that room, so that no one would be punched, kicked, spat upon, or showered with a torrent of obscenities that only Ben can spew when he is completely out of control.
Unfortunately, Ben is much bigger now than he used to be. Where I used to be able to easily pick him up and haul his flailing body anywhere I needed him to be, I quickly discovered that getting him up the stairs and into his own bedroom required a certain Herculean strength that I simply don't possess. And so the process of "escorting" Ben up the stairs involved more of a lift-and-push process that left Ben free to kick and punch with terrible violence. By the time I got him up two sets of stairs and into his room, I was dripping with spit and sweat, bleeding from scratches down my hands and arms, and aching from the dozens of punches that would eventually become bruises all over my body.
As I heaved and hauled Ben up those stairs, I warned him that he had to stop hurting me. I warned him that if he continued to hurt people in our family, then he would no longer be able to live in our home because it would be too dangerous. I reminded him that dad works in one such place, and that it would not be hard to take him there at any time. I said these things for two reasons. The first was that I was desperate to make him stop hurting me, and at that moment I would have said anything I needed to. The second reason was that I was serious. I have heard many, many stories of autistic children who eventually have to live in treatment facilities of various kinds because the meltdowns have become too violent and too dangerous for that child to continue living at home.
At the time of the meltdown and these threats, I didn't think I was getting through. He didn't respond to me (he was too busy screaming in a high-pitched, primitive shriek peppered with very coherent swear words) and he didn't stop his violence. Once in his room (where I held the door closed for several minutes while he emptied his closet of all his belongings and threw them at the door), the meltdown continued in spite of my continued warnings that he would not be able to stay if he kept up this behavior.
Eventually (when objects stopped hitting the door) I sat down on the top steps of the hallway, put my head down in my arms, and just waited until all the screaming and noises from his room subsided. They always eventually do.
This time, after they stopped, Ben came out of his room, sat down next to me, and very quietly asked, "So, do I have to leave the family tonight?" And then he erupted into the most heart-wrenching sobs I have ever heard from him. And my heart broke.
A few weeks ago he was listening to me relate this experience to my sisters, and he broke into tears again and said, "I feel sad about that even if we talk about it!"
So here's where the guilt comes in: Since that day that this meltdown happened and I made that threat, Ben has had almost NO meltdowns. At least, none at that Pompeian level of violence that scares me so much. It's almost like that terrible, horrible, gut-wrenching threat that still brings him to tears actually got through to him. But how on earth could I ever play that card again, knowing that it reduces him to sobs of sorrow?
On the other hand, isn't this exactly what I wanted? Didn't I want to do whatever I had to do to keep him from hurting us so that he can continue to live here and be a daily part of our family? I can say with certainty that it would take an awful lot for me to send him away to a treatment facility. I will tolerate bruises and broken bones if by so doing, he continues to live and grow in our family. But at some point, whatever that point ends up being, I would have to say that it was too much.
So...did I win, or did I lose? Did he win or lose? I just don't know. I don't know if the means justified the end in this scenario.
All I know is that I have guilt.
Several months ago, my husband Chris took a position with a therapeutic wilderness program for troubled youth. I'm sure most people know about these programs where youth who just can't function safely in their own home environments (due to drug abuse and other adolescent stupidity) are taken to a kind of long-term camping experience, stripped of all their personal belongings and entitlements, and taught to value the blessings they have in their lives.
Well, one or two months ago, Ben had fallen into one of his catastrophic, hurricane-force meltdowns about who-knows-what. The meltdown began in the living room where siblings and friends-of-siblings were watching t.v. That meant that my first order of business was to get Ben out of that room, so that no one would be punched, kicked, spat upon, or showered with a torrent of obscenities that only Ben can spew when he is completely out of control.
Unfortunately, Ben is much bigger now than he used to be. Where I used to be able to easily pick him up and haul his flailing body anywhere I needed him to be, I quickly discovered that getting him up the stairs and into his own bedroom required a certain Herculean strength that I simply don't possess. And so the process of "escorting" Ben up the stairs involved more of a lift-and-push process that left Ben free to kick and punch with terrible violence. By the time I got him up two sets of stairs and into his room, I was dripping with spit and sweat, bleeding from scratches down my hands and arms, and aching from the dozens of punches that would eventually become bruises all over my body.
As I heaved and hauled Ben up those stairs, I warned him that he had to stop hurting me. I warned him that if he continued to hurt people in our family, then he would no longer be able to live in our home because it would be too dangerous. I reminded him that dad works in one such place, and that it would not be hard to take him there at any time. I said these things for two reasons. The first was that I was desperate to make him stop hurting me, and at that moment I would have said anything I needed to. The second reason was that I was serious. I have heard many, many stories of autistic children who eventually have to live in treatment facilities of various kinds because the meltdowns have become too violent and too dangerous for that child to continue living at home.
At the time of the meltdown and these threats, I didn't think I was getting through. He didn't respond to me (he was too busy screaming in a high-pitched, primitive shriek peppered with very coherent swear words) and he didn't stop his violence. Once in his room (where I held the door closed for several minutes while he emptied his closet of all his belongings and threw them at the door), the meltdown continued in spite of my continued warnings that he would not be able to stay if he kept up this behavior.
Eventually (when objects stopped hitting the door) I sat down on the top steps of the hallway, put my head down in my arms, and just waited until all the screaming and noises from his room subsided. They always eventually do.
This time, after they stopped, Ben came out of his room, sat down next to me, and very quietly asked, "So, do I have to leave the family tonight?" And then he erupted into the most heart-wrenching sobs I have ever heard from him. And my heart broke.
A few weeks ago he was listening to me relate this experience to my sisters, and he broke into tears again and said, "I feel sad about that even if we talk about it!"
So here's where the guilt comes in: Since that day that this meltdown happened and I made that threat, Ben has had almost NO meltdowns. At least, none at that Pompeian level of violence that scares me so much. It's almost like that terrible, horrible, gut-wrenching threat that still brings him to tears actually got through to him. But how on earth could I ever play that card again, knowing that it reduces him to sobs of sorrow?
On the other hand, isn't this exactly what I wanted? Didn't I want to do whatever I had to do to keep him from hurting us so that he can continue to live here and be a daily part of our family? I can say with certainty that it would take an awful lot for me to send him away to a treatment facility. I will tolerate bruises and broken bones if by so doing, he continues to live and grow in our family. But at some point, whatever that point ends up being, I would have to say that it was too much.
So...did I win, or did I lose? Did he win or lose? I just don't know. I don't know if the means justified the end in this scenario.
All I know is that I have guilt.
Wednesday, May 8, 2013
Too Much of a Good Thing?
It's Wednesday, which I only remember because today was Autism Social Skills group--or do I remember that Social Skills group is today because it's Wednesday? The chicken and the egg are often confused these days....
Ben emerged from group today with a green left hand, from wrist to fingertips. Green and glittered, with a feather glued thickly to the center of his palm. He claimed it was his Epic Zombie Mini-Sword hand. In response, I raised my eyebrows momentarily, sighed, and shook my head while wondering whether all that green paint would come off his hand, shirt, and jeans when we got home...or whether it might instead be smeared all over the leather seats of the Suburban ere we ever got out of the parking lot.
Before my Zombie-handed autistic child bounded out of the group play room, I had just been discussing summer plans with a couple of the other moms. The options for therapeutic interventions are apparently limitless: Therapeutic horseback riding, social skills, functional skills, adaptive sports, ABA therapy groups...not to mention the "usual" summer things like swimming lessons, sports, and music. A few of the moms are doing many--most--of these things: Something (or some things--plural) every day.
Here's what I want to do this summer: nothing. I am tired. Just dragging Ben through the school year with its attendant challenges of homework, behavioral programs, IEP meetings, horseback riding, and social skills group, has been exhausting. I gave up on Cub Scouts months ago. Ben doesn't want to go anywhere, ever. If he could ensconce himself in the computer room 24-hours a day without ever speaking to another soul, he'd be happy. Nevertheless, all year long, in the name of looking out for Ben's best interests, I have waged the daily battles to get him out the door.
I don't know if I can muster enough energy to do it all summer long, too.
But one of the other moms I was talking to this afternoon said, "I just feel guilty about not signing [her child] up for as many programs as I can. I mean, I have to do everything I can to help him, right?"
Right. Yes. Leave no stone unturned. Make hay while the sun shines. Grab the tiger by the tail. Stand and deliver. Scooby-Dooby-Doo, where are you? (Yeah...that one doesn't work here, but I was on a roll...)
But this seems like a fair question: how much is enough? Is there such a thing as "too much" of a good thing?
I am not taking the boys to horseback riding this summer. That was decided the moment I suggested to Ben that I was thinking about not doing horseback riding this summer. Expressing my thought process to Ben is apparently the moral equivalent of making a promise.
I'm leaning toward the functional skills group, where the kids will purportedly be taught such things as folding and putting away clothing, making a sandwich, crossing a street safely, and vacuuming. I'll fight the battle to get Ben out the door for skills like that.
But maybe that's enough, huh? Just one thing? I might throw some swimming lessons in there, or maybe not. I just peeked into a few bedrooms in the house, and it turns out I have three other kids who also have some plans for the summer. They might hope that mom is around once in a while to drive the taxi, make a few lunches, and apply sunscreen.
When we get to the end of time, will I look back on this summer and think, "If only I had taken Ben to a few more groups, would he have lived a better life?" I just don't know.
Maybe the Epic-Zombie-Mini-Sword hand has magical future-predicting powers. Before we wash off the green and glitter, I may request a reading. Go out on a limb. Carpe Diem. Insert other relevant idiom here.
Ben emerged from group today with a green left hand, from wrist to fingertips. Green and glittered, with a feather glued thickly to the center of his palm. He claimed it was his Epic Zombie Mini-Sword hand. In response, I raised my eyebrows momentarily, sighed, and shook my head while wondering whether all that green paint would come off his hand, shirt, and jeans when we got home...or whether it might instead be smeared all over the leather seats of the Suburban ere we ever got out of the parking lot.
Before my Zombie-handed autistic child bounded out of the group play room, I had just been discussing summer plans with a couple of the other moms. The options for therapeutic interventions are apparently limitless: Therapeutic horseback riding, social skills, functional skills, adaptive sports, ABA therapy groups...not to mention the "usual" summer things like swimming lessons, sports, and music. A few of the moms are doing many--most--of these things: Something (or some things--plural) every day.
Here's what I want to do this summer: nothing. I am tired. Just dragging Ben through the school year with its attendant challenges of homework, behavioral programs, IEP meetings, horseback riding, and social skills group, has been exhausting. I gave up on Cub Scouts months ago. Ben doesn't want to go anywhere, ever. If he could ensconce himself in the computer room 24-hours a day without ever speaking to another soul, he'd be happy. Nevertheless, all year long, in the name of looking out for Ben's best interests, I have waged the daily battles to get him out the door.
I don't know if I can muster enough energy to do it all summer long, too.
But one of the other moms I was talking to this afternoon said, "I just feel guilty about not signing [her child] up for as many programs as I can. I mean, I have to do everything I can to help him, right?"
Right. Yes. Leave no stone unturned. Make hay while the sun shines. Grab the tiger by the tail. Stand and deliver. Scooby-Dooby-Doo, where are you? (Yeah...that one doesn't work here, but I was on a roll...)
But this seems like a fair question: how much is enough? Is there such a thing as "too much" of a good thing?
I am not taking the boys to horseback riding this summer. That was decided the moment I suggested to Ben that I was thinking about not doing horseback riding this summer. Expressing my thought process to Ben is apparently the moral equivalent of making a promise.
I'm leaning toward the functional skills group, where the kids will purportedly be taught such things as folding and putting away clothing, making a sandwich, crossing a street safely, and vacuuming. I'll fight the battle to get Ben out the door for skills like that.
But maybe that's enough, huh? Just one thing? I might throw some swimming lessons in there, or maybe not. I just peeked into a few bedrooms in the house, and it turns out I have three other kids who also have some plans for the summer. They might hope that mom is around once in a while to drive the taxi, make a few lunches, and apply sunscreen.
When we get to the end of time, will I look back on this summer and think, "If only I had taken Ben to a few more groups, would he have lived a better life?" I just don't know.
Maybe the Epic-Zombie-Mini-Sword hand has magical future-predicting powers. Before we wash off the green and glitter, I may request a reading. Go out on a limb. Carpe Diem. Insert other relevant idiom here.
Thursday, August 2, 2012
Raising the White Flag
I love writing about Ben, and about our experiences with him. I love the funny things he says and does, like when he told me that he had two nightmares that were the same, except "the graphics were different" in the second version. I love that he always asks, "How much did that cost?" when someone shows him something new. I love his fascination for the mechanics of things, and his unabashed conversations, such as the one he had with my sister a year or so ago when shortly after I had a hysterectomy, he spontaneously asked her, "So Auntie Jen, have you also had your uterus removed?"
And yet, no matter how much I love him, there are times (today is one) when I want to hoist a white flag over my head, drag myself up and over the hilly battlefield upon which the ceaseless scuffles of Autism are fought every day, and collapse at the feet of whoever might actually have the power to accept my unconditional surrender and plea for mercy.
There are times (today is one) where I just don't think I can do this anymore. Lately I've been envying parents who never wake up in the morning wondering how many times their child will melt into uncontrollable fits of screaming, kicking, punching, and spitting. They never have to decide when might be the appropriate time to sit down with the cub scout troop and explain that their fellow Wolf isn't just a weird, impatient, socially awkward person but that he has a disability. There are parents who don't think twice about loading the kids into the car for an outing to a park, store, or restaurant.
There are times (today is one) where I wonder if I am really just not doing this parenting thing right at all. Those same parents who don't think twice about taking their kids to church or swimming lessons are also generally respected as the final authority in the home. Sure, other kids backtalk and argue; of course other kids fight with each other and even with their parents. But most of those kids don't leave bruises and bite marks. I've tried every trick in the book: consequences, punishments, rewards, sticker charts, money in the jar, and outright begging for better behavior. Nothing works...nothing. When Ben gets upset, nothing matters. He just explodes. And I can either put him in his room and hope he doesn't punch too many holes in walls or kick out the window, or I can try to physically hold onto him and brace myself for the fury.
Those meltdowns are unbearable, largely because they are completely void of all reason and logic. I can't talk Ben off the ledge, so to speak, while he's in the first phases of the meltdown. All I can do is wait until finally, in spite of the ongoing punches and kicks, the bites and screams and spit, I see the look in Ben's eyes change from fury to terror. There always comes a point where he realizes that he is out of control but just can't stop. And when that moment comes (and sometimes it takes hours to get there), I can finally scoop him into my arms and start rocking him and whispering while the punches get softer and softer and finally subside altogether and the Ben I adore comes back to me.
But he's nine years old now. And this has been the worst summer of meltdowns he's ever had. He's bigger and stronger than ever, and there are times (today is one) when I wonder what the future holds for this child. Will he ever gain more appropriate coping skills? Will he ever have the ability to move away to college or to a job? Will he be able to continue living in the house if he doesn't learn to somehow mitigate those outbursts so that they aren't scary and harmful to people around him?
I'm driving myself crazy with the questions, and with the lack of answers.
And today, bruised and exhausted, I surrender.
Monday, May 21, 2012
On Friendship
Throughout his life, when asked, Ben has always said that he has friends. But that is only because he doesn't really understand the difference between knowing people, and being friends with people. I think he has always assumed that if he knows someone's name, that means he is friends with that person. However, he has never been invited to another child's house to play, never been invited to a birthday party, and never had any interest in inviting anyone over to our house for a play date, either. In fact, he has always been quite content to play alone in his room or at the computer (except for the occasional joint activity with a sibling, and only if the sibling is doing something that Ben really wants to do).
But suddenly, something has changed. Ben got into the car last week after school and as we were driving home he said, "Mom, me and Ozzie kind of made a deal that I can go to his house to play at 3:30." Not sure I had heard him correctly, I repeated what he had said and then asked, "Did Ozzie ask his mom or dad if it's OK for you to come over and play?" The answer was no, so I explained that usually moms and dads must be consulted before arranging a play date. Ben responded, "Oh," and then didn't say another word on the rest of the drive home.
Clutching hopefully at this opportunity, though, when we got home I told Ben he should call Ozzie and have him check with his parents about playing together. I coached Ben as to what he should say when someone answered the phone, then dialed the number, handed him the phone, and held my breath. In a matter of seconds I could hear Ozzie's dad pick up on the other end of the line. Ben asked if Ozzie was home, to which his dad responded that he was not. Ben said, "Oh." And nothing more. After all, this wasn't the script we had rehearsed. Just when I was sure that the conversation would end rather abruptly, Ozzie's dad took the lead, told Ben that Ozzie would be home at 4:30, and then instructed him to come over at that time. Ben said OK, hung up the phone, and ran downstairs to play on the computer while the enormity of what had just happened washed over me. Ben was going to play with a friend!
Then the questions started: Should I call the dad back and let him know that Ben has autism? Does he already know? Will Ben know how to play with another child appropriately? What happens if Ben gets upset? What if Ben has a meltdown there at the friend's house?
In the end, I decided to not make too big a deal out of the play date. I drove Ben to Ozzie's house, told him I'd be back in about an hour, and then encouraged him to get out of the car and go ring the doorbell. Ben hesitated for only a second, and then as he emerged from the car, Ozzie opened the front door and Ben ran inside. As the door closed behind the two boys I looked over at my daughter, who had come along just to witness the miracle with me, and she said with a mix of amazement and reverence, "Ben is playing at a friend's house!"
The play date went just fine: no meltdowns, and Ben said he had a good time. The next day, Ben got into the car and said, "Ozzie wants me to come over and play again, but I really don't feel like it." I was disappointed and feared that the "friend" phase had ended as quickly as it had begun. But there have been two additional play dates since that time--another at Ozzie's house that migrated to our house before the evening was over, and today, a third encounter.
I can't help but wonder: What does the future hold for my little boy? Will he continue to be friends with Ozzie? Will he develop other friendships that are mutually satisfying for both Ben and his friends? Last week, my daughter Izzy told me that a boy at her junior high school--a boy with autism--had invited several people to his birthday party. On the appointed night, no one showed up and the boy and his mom ate the cake together, alone. My heart broke for that family.
But then my daughter told me that because they all felt so bad about what happened, they had planned a big surprise party at the park for the boy, wherein a couple dozen kids from the junior high met at the park and then began singing "Happy Birthday" as loudly as they could when the boy arrived and got out of his car. Izzy reported that he had an enormous smile on his face as he ran across the field toward the singing teens, excited to be remembered and included. I can just picture it, and I swell with emotion at the image.
Will Ben have true friends as he gets older--the kind that show up for parties and invite Ben to be a part of their activities? And if not, will he have peers who support him and love him enough to reach out to him when he is disappointed and alone? I'm so proud of my daughter and of her friends who went out of their way to embrace their classmate. I think there is a special place in heaven for kids like that. And, as the mother of a child who might be alone someday, there is a tender place in my heart for those kids, too.
But suddenly, something has changed. Ben got into the car last week after school and as we were driving home he said, "Mom, me and Ozzie kind of made a deal that I can go to his house to play at 3:30." Not sure I had heard him correctly, I repeated what he had said and then asked, "Did Ozzie ask his mom or dad if it's OK for you to come over and play?" The answer was no, so I explained that usually moms and dads must be consulted before arranging a play date. Ben responded, "Oh," and then didn't say another word on the rest of the drive home.
Clutching hopefully at this opportunity, though, when we got home I told Ben he should call Ozzie and have him check with his parents about playing together. I coached Ben as to what he should say when someone answered the phone, then dialed the number, handed him the phone, and held my breath. In a matter of seconds I could hear Ozzie's dad pick up on the other end of the line. Ben asked if Ozzie was home, to which his dad responded that he was not. Ben said, "Oh." And nothing more. After all, this wasn't the script we had rehearsed. Just when I was sure that the conversation would end rather abruptly, Ozzie's dad took the lead, told Ben that Ozzie would be home at 4:30, and then instructed him to come over at that time. Ben said OK, hung up the phone, and ran downstairs to play on the computer while the enormity of what had just happened washed over me. Ben was going to play with a friend!
Then the questions started: Should I call the dad back and let him know that Ben has autism? Does he already know? Will Ben know how to play with another child appropriately? What happens if Ben gets upset? What if Ben has a meltdown there at the friend's house?
In the end, I decided to not make too big a deal out of the play date. I drove Ben to Ozzie's house, told him I'd be back in about an hour, and then encouraged him to get out of the car and go ring the doorbell. Ben hesitated for only a second, and then as he emerged from the car, Ozzie opened the front door and Ben ran inside. As the door closed behind the two boys I looked over at my daughter, who had come along just to witness the miracle with me, and she said with a mix of amazement and reverence, "Ben is playing at a friend's house!"
The play date went just fine: no meltdowns, and Ben said he had a good time. The next day, Ben got into the car and said, "Ozzie wants me to come over and play again, but I really don't feel like it." I was disappointed and feared that the "friend" phase had ended as quickly as it had begun. But there have been two additional play dates since that time--another at Ozzie's house that migrated to our house before the evening was over, and today, a third encounter.
I can't help but wonder: What does the future hold for my little boy? Will he continue to be friends with Ozzie? Will he develop other friendships that are mutually satisfying for both Ben and his friends? Last week, my daughter Izzy told me that a boy at her junior high school--a boy with autism--had invited several people to his birthday party. On the appointed night, no one showed up and the boy and his mom ate the cake together, alone. My heart broke for that family.
But then my daughter told me that because they all felt so bad about what happened, they had planned a big surprise party at the park for the boy, wherein a couple dozen kids from the junior high met at the park and then began singing "Happy Birthday" as loudly as they could when the boy arrived and got out of his car. Izzy reported that he had an enormous smile on his face as he ran across the field toward the singing teens, excited to be remembered and included. I can just picture it, and I swell with emotion at the image.
Will Ben have true friends as he gets older--the kind that show up for parties and invite Ben to be a part of their activities? And if not, will he have peers who support him and love him enough to reach out to him when he is disappointed and alone? I'm so proud of my daughter and of her friends who went out of their way to embrace their classmate. I think there is a special place in heaven for kids like that. And, as the mother of a child who might be alone someday, there is a tender place in my heart for those kids, too.
Saturday, February 18, 2012
What If...and What Is
We've been giving a lot of thought lately to Ben's future. I don't mean the long-term dreams of most parents for their kids, such as dating, driving, college, and marriage; what is on our minds is elementary school, and then junior high, and Ben's ability to successfully navigate both. He is still doing well in a mainstream 3rd grade classroom, except for a few issues with spelling and handwriting, but as classes get harder and expectations get higher, we are trying to plan ahead to accommodate his needs.
Plan two was to get a solid battery of testing done that would give us a clear picture of Ben's intellectual, academic, social, and behavioral functioning. The intellectual/academic testing was very interesting. We discovered that Ben has a very high IQ, but also discovered that when it comes to academic performance, he performs anywhere from the nearly 100th percentile (that was in a task called "story recall" where he was told a series of short stories and then asked to repeat them back immediately, and then a couple hours later. Ben repeated them nearly verbatim two hours later exactly like they had been told to him originally. Very interesting stuff!), all the way down to the 1st percentile in handwriting (what he produces looks much like what appears on the inside walls of my purse when I leave the cap off a pen), and scores on various other tasks, everywhere in between. His spelling abilities were almost as poor as his handwriting. In the end he was diagnosed with a disability of written expression, and a mathematics disability (this one surprised me because he is still doing pretty well at math in school--at grade level, at least).
Then we managed to get into the Autism testing program at Brigham Young University. This was a huge deal, as the waiting list there is about a year long (we were fortunate that my husband in his profession as a psychologist was able to rely on some connections to move Ben up the list). The BYU testing was designed to see if and to what degree Ben met the criteria for a diagnosis of Autistic Disorder (as opposed to other similar disorders, such as 'PDD' [Pervasive Developmental Disorder] or Asperger's Disorder). A couple years ago Ben was diagnosed with Autistic Disorder by a child psychiatrist after just a relatively short interview. We've been using that diagnosis ever since, but now it was time to get serious. The BYU testing first involved a 3-hour interview with me, Chris, and the psychologist who asked us every possible thing there was to say about Ben's development and behavior. It was exhausting. We then took home and filled out a number of questionnaires and gave a couple to his school teacher to fill out as well. Then I brought Ben over to BYU where he was administered a test called the "ADOS"--the "gold standard" when it comes to determining whether or not a child has autism.
I stayed in the room while Ben was tested, and my heart nearly broke. For about 1/2 hour, the psychologist tried everything he could to get Ben to show some interest in what he (the psychologist) was talking about. For example, he asked Ben if he had any pets, and when Ben replied that we have a dog, the psychologist said, "Oh, I had a dog when I was little. He was black and white, but then one day he got lost..." The idea was that Ben might then respond with something like, "What was your dog's name?" or, "Did you find him when he got lost?" But Ben just sat at the table, rubbing his head and clearing his throat (a tic he has when he gets overwhelmed), and eventually he muttered, "Oh." When the psychologist gave him a pegboard with little cubes to fit over the pegs and instructed him to cover the whole board with the cubes (he only gave Ben enough to cover about half the board), Ben didn't ask for more pieces--he just rubbed his head and cleared his throat and waited until the psychologist finally offered to give him more pieces, to which Ben replied, "I guess." The test can take up to an hour, but Ben was done in less than half that because he just had no interest.
And then the waiting began. And I started to worry: What if Ben is diagnosed with Autism? And, what if he isn't? These were hard questions to wrestle with. On the one hand, if BYU diagnosed autism, then it was so...final. I mean, for a couple years we've believed that Ben has autism because the child psychiatrist said so after his brief interview, but that wasn't the result of any in-depth testing. There was always the thought in the back of our minds that maybe he was wrong; maybe we didn't have an autistic child after all...and there was some small hope in that possibility. On the other hand, what if BYU came back and said that everything we've believed about Ben was wrong, and that he isn't autistic after all? What happens to the IEP at school, and the services that our insurance pays for with an autism diagnosis? What if the problem is just that Ben is a hard kid, and we're not very good parents? The diagnosis of autism has given us an explanation for our son's challenges that we have clung to--without it, we'd be lost. I truly didn't know which result I wanted, and I nearly drove myself crazy thinking about it for one eternally long week.
Finally yesterday I sat down with the psychologist who had scored all the testing, and the results are in: Ben is a moderately functioning autistic child (I actually thought he was higher-functioning than the test results showed) who, because of his very high intellectual capacity, has great potential to get through school and...who knows from there. Will he ever be in a relationship? It's doubtful, because his interest in social interactions is very, very limited and he struggles a great deal to show empathy or emotional connection. Will he go to college? Perhaps, if we can accommodate his struggles with writing and communication.
But the psychologist said that we should live in a place of hopefulness. Ben has some strengths that many other children don't. He's smart, he's verbal, and he's just a dang cute kid (OK, I added the last one myself)! We move forward from here. The truth is, the world of "What If's..." is hostile and frightening. The world of "What Is" is something we can handle. And it's good to know what is.
Plan one was some therapeutic horseback riding lessons. He's been going to a place called "Courage Reins" for about three months now, and the program is impressive. With the help of volunteers (Ben's big sister Izzy is a volunteer) and staff who have training in working with special needs kids, Ben grooms his horse every week (brushes his horse down and picks the hooves), saddles him, and then leads him into the arena to ride. In the process he is learning how to follow instructions, develop gross and fine motor skills, build core body strength, and gain confidence. I'm including some pictures on this blog that I took during a lesson.
One day the teacher asked the kids to let go of the reins and stand in their stirrups while the "lead walkers" led the horses around the arena. She asked the kids if this was hard, and Ben called back, "It's a little bit scary AND a little bit fun!" That sounds about right.
Plan two was to get a solid battery of testing done that would give us a clear picture of Ben's intellectual, academic, social, and behavioral functioning. The intellectual/academic testing was very interesting. We discovered that Ben has a very high IQ, but also discovered that when it comes to academic performance, he performs anywhere from the nearly 100th percentile (that was in a task called "story recall" where he was told a series of short stories and then asked to repeat them back immediately, and then a couple hours later. Ben repeated them nearly verbatim two hours later exactly like they had been told to him originally. Very interesting stuff!), all the way down to the 1st percentile in handwriting (what he produces looks much like what appears on the inside walls of my purse when I leave the cap off a pen), and scores on various other tasks, everywhere in between. His spelling abilities were almost as poor as his handwriting. In the end he was diagnosed with a disability of written expression, and a mathematics disability (this one surprised me because he is still doing pretty well at math in school--at grade level, at least).
Then we managed to get into the Autism testing program at Brigham Young University. This was a huge deal, as the waiting list there is about a year long (we were fortunate that my husband in his profession as a psychologist was able to rely on some connections to move Ben up the list). The BYU testing was designed to see if and to what degree Ben met the criteria for a diagnosis of Autistic Disorder (as opposed to other similar disorders, such as 'PDD' [Pervasive Developmental Disorder] or Asperger's Disorder). A couple years ago Ben was diagnosed with Autistic Disorder by a child psychiatrist after just a relatively short interview. We've been using that diagnosis ever since, but now it was time to get serious. The BYU testing first involved a 3-hour interview with me, Chris, and the psychologist who asked us every possible thing there was to say about Ben's development and behavior. It was exhausting. We then took home and filled out a number of questionnaires and gave a couple to his school teacher to fill out as well. Then I brought Ben over to BYU where he was administered a test called the "ADOS"--the "gold standard" when it comes to determining whether or not a child has autism.
I stayed in the room while Ben was tested, and my heart nearly broke. For about 1/2 hour, the psychologist tried everything he could to get Ben to show some interest in what he (the psychologist) was talking about. For example, he asked Ben if he had any pets, and when Ben replied that we have a dog, the psychologist said, "Oh, I had a dog when I was little. He was black and white, but then one day he got lost..." The idea was that Ben might then respond with something like, "What was your dog's name?" or, "Did you find him when he got lost?" But Ben just sat at the table, rubbing his head and clearing his throat (a tic he has when he gets overwhelmed), and eventually he muttered, "Oh." When the psychologist gave him a pegboard with little cubes to fit over the pegs and instructed him to cover the whole board with the cubes (he only gave Ben enough to cover about half the board), Ben didn't ask for more pieces--he just rubbed his head and cleared his throat and waited until the psychologist finally offered to give him more pieces, to which Ben replied, "I guess." The test can take up to an hour, but Ben was done in less than half that because he just had no interest.
And then the waiting began. And I started to worry: What if Ben is diagnosed with Autism? And, what if he isn't? These were hard questions to wrestle with. On the one hand, if BYU diagnosed autism, then it was so...final. I mean, for a couple years we've believed that Ben has autism because the child psychiatrist said so after his brief interview, but that wasn't the result of any in-depth testing. There was always the thought in the back of our minds that maybe he was wrong; maybe we didn't have an autistic child after all...and there was some small hope in that possibility. On the other hand, what if BYU came back and said that everything we've believed about Ben was wrong, and that he isn't autistic after all? What happens to the IEP at school, and the services that our insurance pays for with an autism diagnosis? What if the problem is just that Ben is a hard kid, and we're not very good parents? The diagnosis of autism has given us an explanation for our son's challenges that we have clung to--without it, we'd be lost. I truly didn't know which result I wanted, and I nearly drove myself crazy thinking about it for one eternally long week.
Finally yesterday I sat down with the psychologist who had scored all the testing, and the results are in: Ben is a moderately functioning autistic child (I actually thought he was higher-functioning than the test results showed) who, because of his very high intellectual capacity, has great potential to get through school and...who knows from there. Will he ever be in a relationship? It's doubtful, because his interest in social interactions is very, very limited and he struggles a great deal to show empathy or emotional connection. Will he go to college? Perhaps, if we can accommodate his struggles with writing and communication.
But the psychologist said that we should live in a place of hopefulness. Ben has some strengths that many other children don't. He's smart, he's verbal, and he's just a dang cute kid (OK, I added the last one myself)! We move forward from here. The truth is, the world of "What If's..." is hostile and frightening. The world of "What Is" is something we can handle. And it's good to know what is.
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