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.
Showing posts with label ASD. Show all posts
Showing posts with label ASD. Show all posts
Friday, January 6, 2012
Tuesday, January 4, 2011
It Took Me Long Enough
I've been meaning to start a blog about raising a son with autism ever since he was diagnosed at about the age of 4. He's now 7 and I'm just now getting around to it. I've been busy. I've been grieving. I've been looking for doctors. I've been talking to teachers and answering emails and fielding calls from the school principal. To sum up, there's been no time for me to expound on the good things and bad things about parenting a child who lives in a (sometimes) misunderstanding world.
Definitions:
autism spectrum disorders (ASD): This term is not officially used on the Diagnostic and Statistical Manual but the expression is used sometimes because there is a continuum of deficits and issues that exist throughout all of the disorders such as classic autism, pervasive developmental disorder (Drew's diagnosis), and Asperger's. The DSM-5 will most likely move to an umbrella diagnosis of "autism spectrum disorder" or ASD. There are a wide variety of issues with people on the AS but the problems that are usually most noticeable to society are a lack of or difficulty with social skills and social interactions.
pervasive developmental disorder (PDD): This is where things get confusing because some researchers consider PDD to be an "umbrella" disorder under which they would put Aspergers and autism. It is characterized (as other autism disorders are) by social deficiencies and perseverating or repetitive behaviors and narrow interests. To add to the confusion, there is also a diagnosis of PDD-NOS (not otherwise specified). This is used when the criteria are not there to diagnose autism or Asperger's. Drew was diagnosed with PDD-NOS. There is a lot of gray area still in the diagnosis of ASD, which compared to some psychological problems, is relatively new. Some specialists might say Drew has Asperger's whereas some other might say he has PDD. It's very fuzzy which can be frustrating when you are me. I am a science teacher by education. I like concrete answers. The prognosis for Drew is quite good and he will most assuredly have a great life as an adult.
neurotypical (NT): I love this word. It was coined by those in the autism community and is used to refer to those of us NOT on the spectrum or what society perceives as having "normal" abilities to read social cues and interact with people in expected ways. I don't know the exact history of the word but I imagine that some autistic people got tired of hearing the word "normal" to describe non-autistic people. For people who are autistic, the way they interact with people IS their "normal" but maybe it just isn't accepted as such.
Everyday Life With Drew:
The first thing most people notice about Drew once they start talking to him is his remarkable vocabulary. At 7, he can read (but with weak comprehension) at a 4th grade level. His comprehension at his first grade level is good. He has always been good at picking up words, remembering them and using them correctly. He seems to enjoy math quite a bit and often figures out the answer without the "show your work" aspect that most teachers insist on. He is funny. He is a good actor. He uses a computer independently and can work all of the remotes that are required to watch TV, a movie or play games. He has a remarkable memory. He can be organized when he wants to be. He likes school. He is great with adults and older kids such as our babysitters.
Those are the good things about him. When Drew is having a good day, he is a real joy. He's fun and inquisitive. However, he wants everything a certain way. He can be inflexible when it comes to food. He gets upset by loud noises so going to a regular movie is out of the question. He is often angered when the schedule changes. First days back at school after a break are usually not good days. First days of vacation when school is out are usually not good days. He asks a million questions about very simple things such as going to the doctor, going to the mall....he always has to know what to expect. He gets anxious easily.
Parenting Drew does not allow for "letting your guard down" or having a relaxing outing to the park or whatever. We have to anticipate many things....will he eat what's offered, will there be something loud there that will upset him, will he be okay with the other kids, etc., etc. Bobby and I have often remarked to each other that parenting Drew requires more than we ever thought we'd have to give. Staying one step ahead of Drew and Drew's brain is exhausting. I never really notice this until he's with the grandparents for a visit or Bobby and I get a weekend away. When this happens, I find myself actually relaxing...truly being calm...turning part of my brain off.
Drew's diagnosis was not a surprise. My background and Bobby's profession have afforded us a lot of knowledge on special needs children. We knew there was "something" going on with Drew but we weren't sure of the exact diagnosis. Upon getting that diagnosis, I had two feelings. One was that of relief because for awhile we just chalked up Drew's difficulties to our parenting. We KNEW we were good parents but when your child is having problems, who else can one blame? My second feeling was that of genuine grief and sadness. I had to grieve for the child I thought I was going to be raising. I think I still am grieving a bit and I might always be on some level but I can't let that get in the way of getting Drew the best help we can find. We have been so blessed by the caring professionals placed in our path.
Drew is a remarkable kid. Terribly smart and funny. He is by no means an "easy" child to raise but I think that because we have to work harder to help him, we are getting far more appreciation and joy out of the good times than if Drew were a neurotypical child.
Definitions:
autism spectrum disorders (ASD): This term is not officially used on the Diagnostic and Statistical Manual but the expression is used sometimes because there is a continuum of deficits and issues that exist throughout all of the disorders such as classic autism, pervasive developmental disorder (Drew's diagnosis), and Asperger's. The DSM-5 will most likely move to an umbrella diagnosis of "autism spectrum disorder" or ASD. There are a wide variety of issues with people on the AS but the problems that are usually most noticeable to society are a lack of or difficulty with social skills and social interactions.
pervasive developmental disorder (PDD): This is where things get confusing because some researchers consider PDD to be an "umbrella" disorder under which they would put Aspergers and autism. It is characterized (as other autism disorders are) by social deficiencies and perseverating or repetitive behaviors and narrow interests. To add to the confusion, there is also a diagnosis of PDD-NOS (not otherwise specified). This is used when the criteria are not there to diagnose autism or Asperger's. Drew was diagnosed with PDD-NOS. There is a lot of gray area still in the diagnosis of ASD, which compared to some psychological problems, is relatively new. Some specialists might say Drew has Asperger's whereas some other might say he has PDD. It's very fuzzy which can be frustrating when you are me. I am a science teacher by education. I like concrete answers. The prognosis for Drew is quite good and he will most assuredly have a great life as an adult.
neurotypical (NT): I love this word. It was coined by those in the autism community and is used to refer to those of us NOT on the spectrum or what society perceives as having "normal" abilities to read social cues and interact with people in expected ways. I don't know the exact history of the word but I imagine that some autistic people got tired of hearing the word "normal" to describe non-autistic people. For people who are autistic, the way they interact with people IS their "normal" but maybe it just isn't accepted as such.
Everyday Life With Drew:
The first thing most people notice about Drew once they start talking to him is his remarkable vocabulary. At 7, he can read (but with weak comprehension) at a 4th grade level. His comprehension at his first grade level is good. He has always been good at picking up words, remembering them and using them correctly. He seems to enjoy math quite a bit and often figures out the answer without the "show your work" aspect that most teachers insist on. He is funny. He is a good actor. He uses a computer independently and can work all of the remotes that are required to watch TV, a movie or play games. He has a remarkable memory. He can be organized when he wants to be. He likes school. He is great with adults and older kids such as our babysitters.
Those are the good things about him. When Drew is having a good day, he is a real joy. He's fun and inquisitive. However, he wants everything a certain way. He can be inflexible when it comes to food. He gets upset by loud noises so going to a regular movie is out of the question. He is often angered when the schedule changes. First days back at school after a break are usually not good days. First days of vacation when school is out are usually not good days. He asks a million questions about very simple things such as going to the doctor, going to the mall....he always has to know what to expect. He gets anxious easily.
Parenting Drew does not allow for "letting your guard down" or having a relaxing outing to the park or whatever. We have to anticipate many things....will he eat what's offered, will there be something loud there that will upset him, will he be okay with the other kids, etc., etc. Bobby and I have often remarked to each other that parenting Drew requires more than we ever thought we'd have to give. Staying one step ahead of Drew and Drew's brain is exhausting. I never really notice this until he's with the grandparents for a visit or Bobby and I get a weekend away. When this happens, I find myself actually relaxing...truly being calm...turning part of my brain off.
Drew's diagnosis was not a surprise. My background and Bobby's profession have afforded us a lot of knowledge on special needs children. We knew there was "something" going on with Drew but we weren't sure of the exact diagnosis. Upon getting that diagnosis, I had two feelings. One was that of relief because for awhile we just chalked up Drew's difficulties to our parenting. We KNEW we were good parents but when your child is having problems, who else can one blame? My second feeling was that of genuine grief and sadness. I had to grieve for the child I thought I was going to be raising. I think I still am grieving a bit and I might always be on some level but I can't let that get in the way of getting Drew the best help we can find. We have been so blessed by the caring professionals placed in our path.
Drew is a remarkable kid. Terribly smart and funny. He is by no means an "easy" child to raise but I think that because we have to work harder to help him, we are getting far more appreciation and joy out of the good times than if Drew were a neurotypical child.
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