Deep apologies to Kurt Cobain and Nirvana for riffing on their song. I just saw the newest Muppet movie for the second time the other day and the scene with the barbershop quartet singing this song is sort of stuck in my head. It fits my subject for today's entry.
SENSORY INTEGRATION DISORDER AND MOVIES
Going to the movies or a musical theatre production are things that most of the world takes for granted. We love entertainment and it gives us an escape from our everyday reality. For those of us who are typically-developing people, it is just a thing we do without much thought. For someone who is sensitive to sounds or lights, a movie theatre is a scary place. It's dark and quite loud these days. Your brain is overwhelmed with processing all of this and your anxiety comes out as aggression, crying or simply shutting down.
Many people on the autism spectrum experience sensory integration problems. They are extra sensitive to light, sound and touch sensations. It's a complicated thing to explain and really hard for typically-developing people to understand. I know that I don't understand it and I live with it daily. Very simply, it has to do with how the brain is not wired to filter out extraneous stimuli the way a person without the problem can. Drew's sensory issue is sound. He does not like really loud or suddenly loud sounds. This was actually one of the first things we noticed about him before he was diagnosed with PDD-NOS. As a little boy, he hated the vacuum cleaner. Most babies and toddlers like the sound and it sort of relaxes them. Not Drew. He also never outgrew this discomfort like most kids outgrow things that bother them.
Back to the movie...Drew saw a couple of movies when he was little and never seemed to have a problem but when I took him to Ratatouille several years back, he wasn't interested in the movie and he mostly seemed like he was trying to get away from it. I theorized that he was just antsy but I eventually realized that he was, in fact, probably trying to get away from the loudness of the movie. When we finally knew what was going on with Drew, I was really sad about this simplest of entertainments. Going to the movies would be something that Drew wouldn't be able to enjoy. Maybe he'd learn to cope with the loudness someday when he was older because autistic kids do learn to cope by learning relaxation techniques or wearing earplugs (we've offered Drew earplugs and it's a no-go). Drew would see a commercial for a new movie out in a theatre and would say, "I can't wait until that comes out on DVD so I can see it."
ENTER AMC ENTERTAINMENT
Several years ago, a parent of an autistic child made a request to an AMC theatre in Maryland to lower the sound and the lights of a movie because her child was incredibly anxious due to the overstimulation. This request became a special program of "sensory-friendly films" that AMC runs once a month on a Saturday morning. They run a film that has been out for a week or two. Because of this program, Drew has seen Despicable Me, Megamind, The Muppets and a couple of others that I can't recall. The Harry Potter films have also been sensory-friendly films although Drew is not old enough for these yet. There are a couple of theatres in the Houston area that use this program. The ticket seller always tells us it's the "sensory-friendly" showing and asks if we are okay with that. They keep the lights on but low, the sound is also lower and if the people in the audience (not always autistic children but many times there have been special needs adults there too) want to talk, laugh, dance, they can. I have actually teared up when we go knowing that my son can enjoy a first-run movie within a week or two of his peers instead of having to wait for the DVD.
This is the link to AMC's website with a schedule of movies and there is a link to participating theatres.
AMC Theatres Sensory-Friendly Films
THEATRE IS MY LIFE!
Most of you know, I love to sing. Music is a huge part of my life. I love to perform and go to performances of musicals and ballet. Musicals and even the ballet can be loud and overwhelming. Big open spaces, a loud orchestra, the sudden light changes and things like that can be very scary for someone on the autism spectrum. Drew has attended a few plays and musicals that were on a small scale and he has managed them all just fine. We spent a lot of time talking about what he should expect from the experience and he seemed to enjoy his time in a theatre. I have yet to take him to a performance at one of Houston's larger theatres but I think he would be okay.
One of my absolute dreams is to take Drew and Maddie to New York City someday so we can see Broadway shows. I love Broadway. It's just so magical and I want my kids to experience that. In October, I read an article in the New York Times about a special performance of The Lion King. It was produced in association with the Theatre Development Fund's Autism Theatre Initiative. I really did cry when I read this article (full article link is below). It was just such an amazing find. Even though my child could probably handle a full-on Broadway musical now, there are many other autistic people who would find the show very overstimulating. The article discusses the changes that were made to the show including lighting or music. They had autism educators available. They allowed people to go in and out of the theatre when they needed a break.
The link to the full New York Times article: NYT Autism-Friendly Lion King Matinee
WHY IS THIS SO IMPORTANT?
Movies and theatre are a part of our country's culture. Our lives are made richer by entertainment, both live and filmed. These are the parts of life that are fun and it makes us happy to have an escape from our daily grind. Even people who are on the autism spectrum should be able to enjoy the laughter and joy that we get from a great movie or a wonderful musical. Although having access to entertainment is not an inalienable right in this country, the privilege of attending cultural offerings is a special one and one we should not take for granted.
Friday, January 6, 2012
Monday, September 12, 2011
Lost Teeth and Empty Promises
More adventures in autism...
FANGS FOR THE MEMORIES :)
Sometimes kids on the autism spectrum have a difficult time understanding the basic feelings and functions of the human body. Many people with autism experience a disconnect between the physical sensation they have and what to think about it. This can manifest itself in all sorts of ways and it can affect how they read hunger (overeating/undereating), pain (extremes in tolerance), pressure sensations (hugging too hard/too soft, for example) and all of the other internal signals we get from our body. It has to do with how the brain of a person living with autism is wired and it's something that I am sure I will never completely comprehend. Needless to say, Drew has had issues describing symptoms and pain. He also gets freaked out by normal bodily functions sometimes and the most recent occurance of this has been with his first loose tooth.
He is a late bloomer when it comes to losing teeth. Most of the kids his age have been losing teeth since pre-K. So he had a wiggler for quite awhile and the first time he noticed it was loose, he was very anxious. We calmed him down and explained the process that usually excites kids and he allowed himself to calm down about it. Instead of trying to speed the process along or allowing us to check in with him on the status of his tooth, he refused to wiggle it out or even discuss it. "Don't talk about it." That's what we heard when we asked.
This morning at breakfast, he munched his cinnamon bread and the tooth finally lost it's grip on Drew's gumline. He calmly called for me and he said he lost his tooth. After I went to the kitchen to make sure the Tooth Fairy's bounty was accounted for, I gave him some water to rinse his mouth out. At this point (and with incredibly bad timing as we needed to leave for school THEN), he got upset. I talked him down and reminded him that it meant he was getting older and that I could already see his permanent tooth coming in. He pulled it together and accepted my mothering.
Losing teeth is something that usually gives parents a moment of reflection about how their baby is growing up, blah, blah, blah. I didn't get to have that moment until well after I got him to school because I had to spend time explaining and calming him down. Here's hoping the next teeth come out with less drama now that he "gets" it.
IN A COMPLETELY UNRELATED DEVELOPMENT
On the way home from school, Drew tells me he has to tell me something. There was a long (LONG) pause during which I white-knuckled the steering wheel and prepared myself for the worst. He told me that he saw a girl in another class stand on her seat in the cafeteria during lunch. A classmate sitting next to Drew at their table said to him, "I'll give you 300 bucks if you go and tell on that girl." So...he did. And guess what Mr. Concrete thinks he's getting from this chick tomorrow? Yeah. I was hit smack in the face with yet another "issue" that many people with autism struggle with. Sarcastic humor and jokes. Oh, boy. I explained to him that the girl was kidding and that he wouldn't be getting money. He was really, really quiet for a full minute and I glanced at him in the rear view mirror to see if I could read his face. He was thinking and then he said, "Are you really, really serious? You mean I'm not getting money." I had to say no. He. Was. Crushed. Absolutely, for real, full-on crying bitter tears. I felt so awful for him. I tried to explain again to make sure he understood but he told me to "be quiet." I let the disrespect slide this time because, let's face it, I know that from lunchtime on, he was planning on how he was going to spend his easily earned money. I know this kid. He had plans for this money.
Life here is many things but it is never, ever boring.
FANGS FOR THE MEMORIES :)
Sometimes kids on the autism spectrum have a difficult time understanding the basic feelings and functions of the human body. Many people with autism experience a disconnect between the physical sensation they have and what to think about it. This can manifest itself in all sorts of ways and it can affect how they read hunger (overeating/undereating), pain (extremes in tolerance), pressure sensations (hugging too hard/too soft, for example) and all of the other internal signals we get from our body. It has to do with how the brain of a person living with autism is wired and it's something that I am sure I will never completely comprehend. Needless to say, Drew has had issues describing symptoms and pain. He also gets freaked out by normal bodily functions sometimes and the most recent occurance of this has been with his first loose tooth.
He is a late bloomer when it comes to losing teeth. Most of the kids his age have been losing teeth since pre-K. So he had a wiggler for quite awhile and the first time he noticed it was loose, he was very anxious. We calmed him down and explained the process that usually excites kids and he allowed himself to calm down about it. Instead of trying to speed the process along or allowing us to check in with him on the status of his tooth, he refused to wiggle it out or even discuss it. "Don't talk about it." That's what we heard when we asked.
This morning at breakfast, he munched his cinnamon bread and the tooth finally lost it's grip on Drew's gumline. He calmly called for me and he said he lost his tooth. After I went to the kitchen to make sure the Tooth Fairy's bounty was accounted for, I gave him some water to rinse his mouth out. At this point (and with incredibly bad timing as we needed to leave for school THEN), he got upset. I talked him down and reminded him that it meant he was getting older and that I could already see his permanent tooth coming in. He pulled it together and accepted my mothering.
Losing teeth is something that usually gives parents a moment of reflection about how their baby is growing up, blah, blah, blah. I didn't get to have that moment until well after I got him to school because I had to spend time explaining and calming him down. Here's hoping the next teeth come out with less drama now that he "gets" it.
IN A COMPLETELY UNRELATED DEVELOPMENT
On the way home from school, Drew tells me he has to tell me something. There was a long (LONG) pause during which I white-knuckled the steering wheel and prepared myself for the worst. He told me that he saw a girl in another class stand on her seat in the cafeteria during lunch. A classmate sitting next to Drew at their table said to him, "I'll give you 300 bucks if you go and tell on that girl." So...he did. And guess what Mr. Concrete thinks he's getting from this chick tomorrow? Yeah. I was hit smack in the face with yet another "issue" that many people with autism struggle with. Sarcastic humor and jokes. Oh, boy. I explained to him that the girl was kidding and that he wouldn't be getting money. He was really, really quiet for a full minute and I glanced at him in the rear view mirror to see if I could read his face. He was thinking and then he said, "Are you really, really serious? You mean I'm not getting money." I had to say no. He. Was. Crushed. Absolutely, for real, full-on crying bitter tears. I felt so awful for him. I tried to explain again to make sure he understood but he told me to "be quiet." I let the disrespect slide this time because, let's face it, I know that from lunchtime on, he was planning on how he was going to spend his easily earned money. I know this kid. He had plans for this money.
Life here is many things but it is never, ever boring.
Tuesday, August 30, 2011
Happy New (School) Year!
We are in the middle of the second week of the 2011-2012 school year. In spite of Drew's rough first grade year, he was ready to go back to school and walked into the building with a little bounce in his step. So far, everything has been good. Fortunately, the boys who gave him trouble last year are not in his class. He only knows one girl from last year and he seems perfectly fine with that. His class right now stands at 16 but I am sure that will go up a little.
HIS TEACHER & CLASSROOM
Drew's teacher, Mrs. Armour, has been teaching for 9 years. Her classroom is in one of the portable buildings and I think this may be a good thing for Drew. No hallway noise or sound coming through the thin walls that surround the classrooms inside the building (his school was of the open concept variety at one time so they had to retrofit walls once that education fad went out of style). Drew seems to like his teacher so far. She is very nice and she did not give me a "look" when I handed her a brief bio about Drew and his ASD. Yeah, I was "that" parent who gave the teacher some information about her kid before the year even started. She took it graciously and thanked me. I am unapologetic about that because, as a teacher, I would have loved to have some background on any students other than their "label". Anyway, so far, he is liking her class.
THEY BLOCK IN SECOND GRADE?!?!?
At our year-end ARD in May, we learned that some of the second grade classes are blocked for language arts and math/science. Two teachers, two classrooms, two sets of kids, two sets of expectations for a kid like Drew is a crisis waiting to happen. Fortunately, they had one second grade class that is self-contained. Isn't second grade a little early to be changing classes or am I just behind the times? Even my stepmother, a 30-something year veteran of first grade, thought that was too young to start that. Fortunately, we did manage that contingency effectively.
WITH AGE COMES WISDOM...HOPEFULLY
In addition to this being Drew's second year on Lemm's campus and feeling more comfortable in his surroundings, he is also a little older and (maybe) a bit more mature and better able to cope with the ups and downs that are a part of a typical day at school. He seems more relaxed to me than he did last year and I think it's a simple matter of knowing his way around pretty well.
WHAT'S NEXT FOR DREW?
He will be continuing to meet with his social skills group each week. I am thinking about maybe putting him in some kind of acting classes because he really seems to enjoy acting things out and I think he'd enjoy it. However, Drew gets overwhelmed with the thought of school work and "extras" so instead of being fun it might end up being a source of stress so I am still thinking about it.
A huge thanks for all of you who pray for Drew and our family. I feel your energy and your positive thoughts. I know that we couldn't be doing as well as we are if it wasn't for all of you who care about us.
HIS TEACHER & CLASSROOM
Drew's teacher, Mrs. Armour, has been teaching for 9 years. Her classroom is in one of the portable buildings and I think this may be a good thing for Drew. No hallway noise or sound coming through the thin walls that surround the classrooms inside the building (his school was of the open concept variety at one time so they had to retrofit walls once that education fad went out of style). Drew seems to like his teacher so far. She is very nice and she did not give me a "look" when I handed her a brief bio about Drew and his ASD. Yeah, I was "that" parent who gave the teacher some information about her kid before the year even started. She took it graciously and thanked me. I am unapologetic about that because, as a teacher, I would have loved to have some background on any students other than their "label". Anyway, so far, he is liking her class.
THEY BLOCK IN SECOND GRADE?!?!?
At our year-end ARD in May, we learned that some of the second grade classes are blocked for language arts and math/science. Two teachers, two classrooms, two sets of kids, two sets of expectations for a kid like Drew is a crisis waiting to happen. Fortunately, they had one second grade class that is self-contained. Isn't second grade a little early to be changing classes or am I just behind the times? Even my stepmother, a 30-something year veteran of first grade, thought that was too young to start that. Fortunately, we did manage that contingency effectively.
WITH AGE COMES WISDOM...HOPEFULLY
In addition to this being Drew's second year on Lemm's campus and feeling more comfortable in his surroundings, he is also a little older and (maybe) a bit more mature and better able to cope with the ups and downs that are a part of a typical day at school. He seems more relaxed to me than he did last year and I think it's a simple matter of knowing his way around pretty well.
WHAT'S NEXT FOR DREW?
He will be continuing to meet with his social skills group each week. I am thinking about maybe putting him in some kind of acting classes because he really seems to enjoy acting things out and I think he'd enjoy it. However, Drew gets overwhelmed with the thought of school work and "extras" so instead of being fun it might end up being a source of stress so I am still thinking about it.
A huge thanks for all of you who pray for Drew and our family. I feel your energy and your positive thoughts. I know that we couldn't be doing as well as we are if it wasn't for all of you who care about us.
Tuesday, May 24, 2011
That Which Doesn't Kill Us Makes Us...Bitter
Despite the upbeat title of my blog, this post is not sunshine and daisies. As positive as I try to be about Drew, there are some days that leave me feeling helpless and immobile.
As I write this post, Drew is serving the latest in what has been a long line of punishments here at home due to school misbehavior. He made a poor choice today and received in-school suspension for half of the day tomorrow. Frankly, with a week left in the school year, I am surprised that they did not just expel him for the remainder of the year but I'm pretty sure they take his diagnosis into consideration when deciding his punishment. If you were to look at his rap sheet, I'm sure it's as long as my arm. Repeated office visits, isolated lunches and in-school suspension seems like they have been the norm for Drew this year.
Also as I write this, the giant wad of bitterness which has been growing inside of me for 3 years might have reached it's maximum size today. I am so very, very bitter. And I do not enjoy this state of mind. It makes me mean and short-tempered towards the undeserving. It makes me resentful towards people who have typically-developing children. It makes me jealous of the freedom that other families enjoy with their "normal" children without having to be pinned down by doctor visits or wondering if their kids can "handle" things if they simply want to go out to eat one evening. It turns me into a recluse, shutting myself off from things unless I absolutely have to do them. It makes me profoundly sad. Bitterness sometimes makes me want to literally run away. I am angry at myself for giving into the bitterness. It makes it hard to enjoy the good days because I am almost always waiting for the next bad one.
To add to the fun, I have a lot of shame attached to my bitterness about Drew's diagnosis with a psychological issue. Many people who haven't experienced this, though well-meaning, have said things to me such as, "It could be worse" or "At least you know what the problem is". Believe me, I know how much worse it could be. My mother lost a baby shortly after birth before I was born. My stepbrother died of cystic fibrosis when he was almost 30 but not before repeated illnesses and hospitalizations. I can't imagine the grief my mother, father and stepmother still endure.
I am grateful that the universe sent this physically healthy yet somewhat limited child to us. There couldn't be two better caregivers or advocates for Drew. However, Bobby and I are entitled to grieve over our child's struggles and be angry about the hand we have been dealt. Period. I have to keep telling myself that because otherwise I'll start to feel even more bitter. Yet, I feel SO guilty being SO angry about Drew's issues but everything is relative, isn't it? Our situation is not life-threatening but it is still quite significant to our family. I wish there were an easy way to explain this to people but I don't think anybody can "get" it who hasn't been a member of a family affected by a psychological condition.
So...I've tried several things to ease the bitterness. I've tried to pray it away. I've read several books about raising autistic children. I've tried to distract myself with hobbies and fun. I've tried to stay busy. I've tried to find the lessons to be learned because, as we always tell people when they experience difficulty, "everything happens for a reason." I've tried to write (duh), meditate, and talk to people, including therapists. Some of these things have given me perspective and given me a modicum of comfort. Some of them haven't worked at all (or maybe just not yet) and have often left me feeling worse. Mainly, I just want to be able to lose the underlying current of panic that seems to always be quietly churning somewhere deep inside me. That would be enough for me.
As I write this post, Drew is serving the latest in what has been a long line of punishments here at home due to school misbehavior. He made a poor choice today and received in-school suspension for half of the day tomorrow. Frankly, with a week left in the school year, I am surprised that they did not just expel him for the remainder of the year but I'm pretty sure they take his diagnosis into consideration when deciding his punishment. If you were to look at his rap sheet, I'm sure it's as long as my arm. Repeated office visits, isolated lunches and in-school suspension seems like they have been the norm for Drew this year.
Also as I write this, the giant wad of bitterness which has been growing inside of me for 3 years might have reached it's maximum size today. I am so very, very bitter. And I do not enjoy this state of mind. It makes me mean and short-tempered towards the undeserving. It makes me resentful towards people who have typically-developing children. It makes me jealous of the freedom that other families enjoy with their "normal" children without having to be pinned down by doctor visits or wondering if their kids can "handle" things if they simply want to go out to eat one evening. It turns me into a recluse, shutting myself off from things unless I absolutely have to do them. It makes me profoundly sad. Bitterness sometimes makes me want to literally run away. I am angry at myself for giving into the bitterness. It makes it hard to enjoy the good days because I am almost always waiting for the next bad one.
To add to the fun, I have a lot of shame attached to my bitterness about Drew's diagnosis with a psychological issue. Many people who haven't experienced this, though well-meaning, have said things to me such as, "It could be worse" or "At least you know what the problem is". Believe me, I know how much worse it could be. My mother lost a baby shortly after birth before I was born. My stepbrother died of cystic fibrosis when he was almost 30 but not before repeated illnesses and hospitalizations. I can't imagine the grief my mother, father and stepmother still endure.
I am grateful that the universe sent this physically healthy yet somewhat limited child to us. There couldn't be two better caregivers or advocates for Drew. However, Bobby and I are entitled to grieve over our child's struggles and be angry about the hand we have been dealt. Period. I have to keep telling myself that because otherwise I'll start to feel even more bitter. Yet, I feel SO guilty being SO angry about Drew's issues but everything is relative, isn't it? Our situation is not life-threatening but it is still quite significant to our family. I wish there were an easy way to explain this to people but I don't think anybody can "get" it who hasn't been a member of a family affected by a psychological condition.
So...I've tried several things to ease the bitterness. I've tried to pray it away. I've read several books about raising autistic children. I've tried to distract myself with hobbies and fun. I've tried to stay busy. I've tried to find the lessons to be learned because, as we always tell people when they experience difficulty, "everything happens for a reason." I've tried to write (duh), meditate, and talk to people, including therapists. Some of these things have given me perspective and given me a modicum of comfort. Some of them haven't worked at all (or maybe just not yet) and have often left me feeling worse. Mainly, I just want to be able to lose the underlying current of panic that seems to always be quietly churning somewhere deep inside me. That would be enough for me.
Friday, May 13, 2011
My Economic Stimulus Plan
After a difficult morning recently, I was having a text conversation with a friend of mine and venting to her about Drew's most recent struggles at school. She is very sympathetic as she has a child who has some difficulties too. We were talking about tough decisions we were contemplating. I am trying to decide whether or not homeschooling Drew is the best approach for him this next school year (an idea that requires it's very own blog post) and she was talking about leaving her job to maybe ease the stress that comes along with her job requirements. This is, of course, a monumental decision and not an easy one at all.
After we were finished texting, I got back to my chores and was thinking about how many people I know who do not work outside of the home simply because they are raising a child who is extra high-maintenance. I personally know of 3 people, including myself, who do not work in large part so that they can care for their special needs child. Between school meetings, doctor appointments, therapies, evaluations, and drive time to all of these things, working at a full-time job would be next to impossible for us. Yes, there are people who do all of these things and work too. Maybe they are better organized (I'm not) or maybe they have a spouse or a near-by family member with a really flexible work schedule (my spouse's/family's schedule is not) and these blessings help them be a quality caregiver in addition to being full-time employed. I don't want to turn this into a fight between those who work outside the home and those who stay home. That's not my point.
My point is that if I (I'm only speaking for myself) could find a place for Drew to go to school, receive the therapy he needs, be in a therapeutic environment, and be educated through a rigorous academic curriculum ALL IN ONE PLACE (saving me valuable driving time), I would go back to work and my tiny teacher paycheck could offer some stimulus to the economy. (Before anybody calls me on it, I know that in the Houston area there are some schools which do exactly what I described above. They cost in the neighborhood of $24,000 to $30,000 a year. Yeah, pick your jaws up. This is not realistic for us.)
To summarize, throw some money at a publicly-funded school solely for kids on the autism spectrum (there ARE public school systems who have these...more on that another time), offer a fabulous curriculum, add qualified teachers and autism specialists and me and several of my friends will go back to work and we promise to spend our paychecks which will stimulate the economy. Or am I oversimplifying?
After we were finished texting, I got back to my chores and was thinking about how many people I know who do not work outside of the home simply because they are raising a child who is extra high-maintenance. I personally know of 3 people, including myself, who do not work in large part so that they can care for their special needs child. Between school meetings, doctor appointments, therapies, evaluations, and drive time to all of these things, working at a full-time job would be next to impossible for us. Yes, there are people who do all of these things and work too. Maybe they are better organized (I'm not) or maybe they have a spouse or a near-by family member with a really flexible work schedule (my spouse's/family's schedule is not) and these blessings help them be a quality caregiver in addition to being full-time employed. I don't want to turn this into a fight between those who work outside the home and those who stay home. That's not my point.
My point is that if I (I'm only speaking for myself) could find a place for Drew to go to school, receive the therapy he needs, be in a therapeutic environment, and be educated through a rigorous academic curriculum ALL IN ONE PLACE (saving me valuable driving time), I would go back to work and my tiny teacher paycheck could offer some stimulus to the economy. (Before anybody calls me on it, I know that in the Houston area there are some schools which do exactly what I described above. They cost in the neighborhood of $24,000 to $30,000 a year. Yeah, pick your jaws up. This is not realistic for us.)
To summarize, throw some money at a publicly-funded school solely for kids on the autism spectrum (there ARE public school systems who have these...more on that another time), offer a fabulous curriculum, add qualified teachers and autism specialists and me and several of my friends will go back to work and we promise to spend our paychecks which will stimulate the economy. Or am I oversimplifying?
Wednesday, March 16, 2011
Haters
I heard this song on Glee last night and I was immediately affected. These lyrics are just a small part from a really great song that says volumes about being bullied and how, one day, the bullies will get theirs.
Last week, Drew was, again, the victim of physical bullying. Two kids scratched him up. No, he doesn't always report this when it happens. He doesn't retaliate either. It's just who Drew is and no matter how many times we tell him that he needs to tell his teacher, he doesn't always. His teacher does know that there are kids in his class who hurt him sometimes so I know she has her eyes on it when she can.
WHY THESE KIDS?
I read somewhere that kids with high-functioning autism are four times more likely to be bullied than a typically-developing kid (I am sorry I don't know the source of this statistic.) High-functioning autistic kids are often socially awkward, display unusual behaviors, are often willing to give up their rights and possessions without question, and can be easily fooled into thinking someone is their friend.
FIGHTING BACK
It makes me physically sick to my stomach and throws me into a new dimension of anger when Drew has an encounter with a bully. All I want to do is retaliate. I am not proud of this but it's my first instinct....to fight back, find their parents and tell them what their kid does to other kids. I know one of the kids who gives Drew trouble lives a couple of streets away from us and it takes a great deal of will-power to not find their house and go all Jets-Sharks on them (apologies for the "West Side Story" reference). From a teacher standpoint, I can remember the bullies in my classes and they often did it because they were having trouble in their own lives and that is how they expressed it. Perhaps these kids who are giving Drew trouble are having issues too. I can sympathize with that, of course, so I mind my manners.
WHAT IS A FRIEND?
Teaching an autistic kid about bullying is really hard. Drew (like many autistic kids) has a hard time distinguishing between friendly and non-friendly behaviors. He thinks that any interaction with someone, positive or negative, means you are friends. Drew does not understand that kids who tease or who physically hurt him are not being friendly. Adding to Drew's confusion, the bully often makes friendly advances towards him (i.e., inviting him to a party). We have to be very clear with Drew what it means to be a friend and what is not a "friend" action.
FIGHTING BACK?
Drew has recently expressed an interest in taking karate classes. I was both happy and apprehensive to hear this. I was happy because Drew hardly ever initiates a willingness to "join in" on something. He will do things when I suggest them but he hardly ever says he "wants" to do something. I am worried too though because of the social disconnect Drew has. Will he be able to understand the karate is not a way to fight when kids pick on him? Will he be able to to "get" the idea behind karate which is focus and discipline but not fighting? I keep thinking back to Mr. Myagi in "The Karate Kid" movies when he was trying to tell Daniel that karate wasn't about winning. That wasn't the point. But....I digress. I do want to find a good place for Drew to take classes especially because he has shown interest in something other than video games.
THE BIG PICTURE
I think that Drew being picked on affects me more than it does him. He has never expressed anxiety about going to school. He's not really afraid of the boys. He DOES seem to like hanging out with the girls more probably because they are gentler spirits. I am glad that it doesn't seem to affect him too much right now. Hopefully, as he gets older, he will began to understand the dynamics better. There will probably be a day when he finally expresses some anger or even gets in trouble because he fought back. He knows that getting physical is the wrong solution but sometimes a person just can't hold back anymore.
My hope for Drew is that he will demonstrate the same characteristics that the song lyrics illustrate...perseverance, courage, success...no matter how much bullies hate on him or take advantage of his retiring nature. Drew is going to be a big success someday not in spite of his struggles but because of them.
Tuesday, March 8, 2011
A No-Stigma Zone
stigma : (noun) a symbol of disgrace or infamy
I started thinking about this blog entry awhile back and I've just been chewing on it and letting it roll around in my head. I've been thinking about how stigmatizing any kind of illness, physical or otherwise, can be. Once someone is labeled as "depressed" or "autistic", we as a society, most often subconsciously, instantly attach all sorts of attributes to that person. Perhaps we expect less from those people. Maybe we expect to see certain behaviors. We might even hold that person in lower esteem. All because of a label.
DISGRACE????
Once I looked up the definition of stigma, I was really surprised. Disgrace???? Never in a million years would I have expected that word to be used in the definition. I think we'd all agree that there is nothing at all disgraceful about having a mental illness. When Drew was diagnosed, I went through (and continue to go through) lots of feelings but disgrace was never one of them. If anything, I felt emboldened by his diagnosis because I was feeling like a poor parent before I knew WHY Drew behaved the way he did. Now that I know better, I parent Drew far better than I ever did before. I really hope that Drew never feels disgraced by being on the spectrum. I am going to do my best to make sure he is proud of who he is as he grows up. At this point in his development, I don't think he really "gets" that he's not a typically-developing kid. He does know that there are some behaviors he "can't help." Once he's older, he will know his diagnosis. There is no point keeping it from him because keeping it from him would imply that we are ashamed of it. I am not and I don't want him to be.
MANAGING EXPECTATIONS
Sometimes, unfortunately, when someone is diagnosed with a mental illness, the stigma manifests itself as lowered expectations. Right now, I am the main navigator of Drew's life but as he gets older he'll be making his own way. I don't want him to have low expectations of himself and I don't want friends or teachers or co-workers to either. The only way to assure that he will have high expectations for himself as an adult is for us to keep them high while he's a kid. He knows a C is unacceptable. He will mind his manners. We may have to tweak how we parent in order to meet these expectations but, so be it. He won't be allowed to use his autism as an excuse for poor behavior. I used to have students who would tell me, "But I have ADHD." That used to frustrate me so much.
Instead of trying to excuse a difficulty with, "Drew has high-functioning autism" and stopping there, I would say, "Drew has high-functioning autism but it's not going to stop him from meeting expectation A. What can we do to make this happen? Is there a modification for this?" My expectations for Drew are the same as for the parents of a typically-developing kid...high school, then college, then whatever would be his next step. Drew's psychologist told us once that, "NASA is full of people just like Drew." Yep!
TO TELL OR NOT TO TELL
Based on my experience, there are two camps when it comes to divulging a child's diagnosis. Either you tell everyone when you are ready or you never tell anyone. I was in the "tell everyone" camp. Maybe some people are not fully on board with my frankness. I think that this was my way of dealing with it....I had to face it...I had to make it real. Telling people and answering their questions was really healing for me. I grieved about this. It was hard to let go of the childhood I thought Drew was going to have. Talking about it was my way of taking away the stigma and making sure people (including myself) understood this was going to be okay and that it was okay to ask me stuff.
Another reason I told people is that it is practical. It would have been unfair to leave grandparents, babysitters, and teachers out of the loop. All of these people take care of Drew at some point and they need to understand how Drew "works." Before he was diagnosed, I would nearly beat my head against a wall because I couldn't figure out what I was doing wrong. I don't want Drew's caregivers to have the same experience and it is only fair to give them a heads up.
Finally, I shared what we learned about Drew because NOT sharing, as I mentioned before, sometimes implies that it's something of which one should be ashamed. I am not ashamed of my son and he isn't autistic because of something he did or something I did. It just happened.
OWNING UP
The only way to de-stigmatize something is to face up to it. Be the poster child for the problem. Offer yourself up as an example. Answer the questions that people ask. When Drew was diagnosed, after the initial icky feelings, I wanted to be honest about it with people and myself too, for that matter.
There is no disgrace in having a child with autism. This was not something we chose but I am thankful that we can have a chance to educate people on what it's like to be someone like Drew and show people that we should accept people how they are. Hopefully, as he grows up, I can help him become a confident, successful, no-excuse-making adult.
I started thinking about this blog entry awhile back and I've just been chewing on it and letting it roll around in my head. I've been thinking about how stigmatizing any kind of illness, physical or otherwise, can be. Once someone is labeled as "depressed" or "autistic", we as a society, most often subconsciously, instantly attach all sorts of attributes to that person. Perhaps we expect less from those people. Maybe we expect to see certain behaviors. We might even hold that person in lower esteem. All because of a label.
DISGRACE????
Once I looked up the definition of stigma, I was really surprised. Disgrace???? Never in a million years would I have expected that word to be used in the definition. I think we'd all agree that there is nothing at all disgraceful about having a mental illness. When Drew was diagnosed, I went through (and continue to go through) lots of feelings but disgrace was never one of them. If anything, I felt emboldened by his diagnosis because I was feeling like a poor parent before I knew WHY Drew behaved the way he did. Now that I know better, I parent Drew far better than I ever did before. I really hope that Drew never feels disgraced by being on the spectrum. I am going to do my best to make sure he is proud of who he is as he grows up. At this point in his development, I don't think he really "gets" that he's not a typically-developing kid. He does know that there are some behaviors he "can't help." Once he's older, he will know his diagnosis. There is no point keeping it from him because keeping it from him would imply that we are ashamed of it. I am not and I don't want him to be.
MANAGING EXPECTATIONS
Sometimes, unfortunately, when someone is diagnosed with a mental illness, the stigma manifests itself as lowered expectations. Right now, I am the main navigator of Drew's life but as he gets older he'll be making his own way. I don't want him to have low expectations of himself and I don't want friends or teachers or co-workers to either. The only way to assure that he will have high expectations for himself as an adult is for us to keep them high while he's a kid. He knows a C is unacceptable. He will mind his manners. We may have to tweak how we parent in order to meet these expectations but, so be it. He won't be allowed to use his autism as an excuse for poor behavior. I used to have students who would tell me, "But I have ADHD." That used to frustrate me so much.
Instead of trying to excuse a difficulty with, "Drew has high-functioning autism" and stopping there, I would say, "Drew has high-functioning autism but it's not going to stop him from meeting expectation A. What can we do to make this happen? Is there a modification for this?" My expectations for Drew are the same as for the parents of a typically-developing kid...high school, then college, then whatever would be his next step. Drew's psychologist told us once that, "NASA is full of people just like Drew." Yep!
TO TELL OR NOT TO TELL
Based on my experience, there are two camps when it comes to divulging a child's diagnosis. Either you tell everyone when you are ready or you never tell anyone. I was in the "tell everyone" camp. Maybe some people are not fully on board with my frankness. I think that this was my way of dealing with it....I had to face it...I had to make it real. Telling people and answering their questions was really healing for me. I grieved about this. It was hard to let go of the childhood I thought Drew was going to have. Talking about it was my way of taking away the stigma and making sure people (including myself) understood this was going to be okay and that it was okay to ask me stuff.
Another reason I told people is that it is practical. It would have been unfair to leave grandparents, babysitters, and teachers out of the loop. All of these people take care of Drew at some point and they need to understand how Drew "works." Before he was diagnosed, I would nearly beat my head against a wall because I couldn't figure out what I was doing wrong. I don't want Drew's caregivers to have the same experience and it is only fair to give them a heads up.
Finally, I shared what we learned about Drew because NOT sharing, as I mentioned before, sometimes implies that it's something of which one should be ashamed. I am not ashamed of my son and he isn't autistic because of something he did or something I did. It just happened.
OWNING UP
The only way to de-stigmatize something is to face up to it. Be the poster child for the problem. Offer yourself up as an example. Answer the questions that people ask. When Drew was diagnosed, after the initial icky feelings, I wanted to be honest about it with people and myself too, for that matter.
There is no disgrace in having a child with autism. This was not something we chose but I am thankful that we can have a chance to educate people on what it's like to be someone like Drew and show people that we should accept people how they are. Hopefully, as he grows up, I can help him become a confident, successful, no-excuse-making adult.
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