I try not to let my life become consumed by advocating for my son, but sometimes it just is. My friends without children, or my friends with typically developing children often have a hard time understanding this. I've been accused of being too sensitive or wanting to fight when that is the opposite of what I truly want. I would LOVE to be able to have my son leave for school every morning and not have to think about whether or not he's learning, if the school's expectations are too high or too low. I would love to not have to think about whether I'm getting a call from the school today or if his bus driver is going to threaten to kick him off the bus again. For years, I thought that once he started school I could go back to work, but it hasn't ended up that way. No job is going to work around the therapy sessions, the meetings, being called to leave on a moment's notice to pick up my child because they can't handle him anymore. I can't find a job that I can commit to the way that I want to because my first priority is making sure that my son is getting the services and education that he is entitled to. Not the things I think he should have, or that he deserves. I'm talking about the basic education and services he is entitled to by the law. What your typically developing child is just given is something that I have to fight for. Every. Single. Day.
It's tiring, and I feel like I'm always burned out. Sometimes, I feel that if I read one more article about autism or have to fight one more fight, I won't be able to take it anymore. But I do it. I have to because no one else is going to make sure that my son succeeds and reaches his full potential.
While I love the social thinking curriculum at his school, I feel like they neglect academics in order to focus on social skills. I definitely agree that social thinking is something that is benefiting my child. However, the low academic expectations of an incredibly bright and intelligent child is unacceptable to me. It's basically like they are teaching him life skills only with a little bit of academics when I KNOW that my son has abilities beyond that. Life skills are important for kids like mine, but he can do SO MUCH MORE. The school district does not care about that as much as making him "manageable".
Don't even get me started on the complete and total lack of inclusion with typical children in his school.
On top of that, I have to deal with professionals talking down to me and treating every rational request that I have as an undue burden while they try to coerce me into medicating my son to make his behavior less challenging. They operate on the assumption that I don't know my son's rights. But I do and I'm tired of having to FIGHT for them.
Now, with all of this complaining about my son's treatment by the school district, notice that I've never once complained about my child or about autism. My child is amazing. My child is perfect exactly how he was born to be. I hate that I have to fight to make other people see his potential and appreciate the different ways in which he learns and can thrive. It is just beyond frustrating to be blessed with such an amazing child who is constantly devalued and pushed to the margins by an incredibly intolerant society. He works so hard every day to understand us, but asking other people to just try and understand him is always met with opposition. Perhaps some of the social thinking that my son is learning could benefit neurotypical people as well. A little empathy and understanding go a long way on both sides, you know.
Wednesday, October 27, 2010
Wednesday, October 13, 2010
A different language.
I've heard a lot of opinions this week about my child. A lot that I disagree with, and a few that have merit. The one thing that stung me the most was hearing someone tell me that my child does not have a right to be understood.
Let me explain this to you. Every single day my son wakes up in a world that is foreign to him. He speaks a language that is different from yours. By all appearances, he is a bright, energetic and normal child. Just like most kids. Except, he's not like most kids.
He struggles every day to communicate with neurotypical people. He mimics what he sees in conversations, on television, and in books. That might LOOK like communication but it's actually him trying imitate what he sees us doing. Him trying to appear "normal" to please other people. That is not to say my son can't and won't communicate. He does, it's just not always the same way YOU do.
Do you have to think about what to say when you greet someone every day? He does. Do you struggle to answer who, what, when, where, why and how questions? For him, it can be impossible some days. So, when I say he speaks another language, that is what I mean. He doesn't know the rules of social communication that we take for granted. He can't "read" expressions or decipher your tone of voice. He is trying and learning every day, but it will always be difficult for him.
That is one of the reasons why autistic children have melt downs. If you can't communicate your frustration or your needs it gets to the point where the only outlet you have is a no holds barred freak out.
Is this acceptable?
No.
Is it understandable?
Yes.
I try to teach him acceptable ways to voice his frustrations. I'm not always successful because I don't always understand how his little mind works. I'm trying though, and I really wish other people would give a little to try and understand him too.
I'm not just talking about my child either. It's not like I'm asking the entire world to bend to the will of one person. (Though, a little understanding in any case never hurt anyone either). 1 in 110 (some estimates are higher) kids is a lot of kids. Kids who will soon be adults. Who could be your neighbor, your coworker or your friend. They deserve at least a tiny bit of the understanding and acceptance that they work so hard to give to us.
I'm not even asking people to exclusively cater to his whims and outbursts. What I am saying is that he is working so hard to try to function in this world and he deserves some of that back. A world that he's a part of too, even if it's not always as easy for him to understand the social rules we live by. As it is now, it seems like my kid is doing all the work and no one is willing to give even a little to let him be who he was born to be. So, why is it unreasonable to ask that neurotypical people at least TRY to realize that just because they are in the majority it doesn't mean that their way is the easy way, or even the ONLY way for everybody?
If my son doesn't want to look you in the eye, I won't force him to. That's ridiculous to spend so much time trying to force someone to do something they are uncomfortable with. Maybe my son will never look another person in the eye. No one ever died from lack of eye contact. What he will do is learn to be the best person that he can be. I will encourage his strengths (which are many) and work with him on the things that he needs to become a successful adult.
He's working all the time to understand you. Yet so often, other people don't think he deserves to be understood or accepted at all. A childhood should be joyful. It should be fun. It shouldn't be a full time job trying to please a bunch of people who don't appreciate a child who doesn't fit into their perfect mold. So, I won't force my son to be "normal". I will never do that to him. I will always celebrate the wonderful, funny, charming, smart, quirky little boy that I am so blessed to call my son. He's not the one who needs changing. It's the rest of the world that needs a good lesson in acceptance and compassion for their fellow humans, autistic or not.
Let me explain this to you. Every single day my son wakes up in a world that is foreign to him. He speaks a language that is different from yours. By all appearances, he is a bright, energetic and normal child. Just like most kids. Except, he's not like most kids.
He struggles every day to communicate with neurotypical people. He mimics what he sees in conversations, on television, and in books. That might LOOK like communication but it's actually him trying imitate what he sees us doing. Him trying to appear "normal" to please other people. That is not to say my son can't and won't communicate. He does, it's just not always the same way YOU do.
Do you have to think about what to say when you greet someone every day? He does. Do you struggle to answer who, what, when, where, why and how questions? For him, it can be impossible some days. So, when I say he speaks another language, that is what I mean. He doesn't know the rules of social communication that we take for granted. He can't "read" expressions or decipher your tone of voice. He is trying and learning every day, but it will always be difficult for him.
That is one of the reasons why autistic children have melt downs. If you can't communicate your frustration or your needs it gets to the point where the only outlet you have is a no holds barred freak out.
Is this acceptable?
No.
Is it understandable?
Yes.
I try to teach him acceptable ways to voice his frustrations. I'm not always successful because I don't always understand how his little mind works. I'm trying though, and I really wish other people would give a little to try and understand him too.
I'm not just talking about my child either. It's not like I'm asking the entire world to bend to the will of one person. (Though, a little understanding in any case never hurt anyone either). 1 in 110 (some estimates are higher) kids is a lot of kids. Kids who will soon be adults. Who could be your neighbor, your coworker or your friend. They deserve at least a tiny bit of the understanding and acceptance that they work so hard to give to us.
I'm not even asking people to exclusively cater to his whims and outbursts. What I am saying is that he is working so hard to try to function in this world and he deserves some of that back. A world that he's a part of too, even if it's not always as easy for him to understand the social rules we live by. As it is now, it seems like my kid is doing all the work and no one is willing to give even a little to let him be who he was born to be. So, why is it unreasonable to ask that neurotypical people at least TRY to realize that just because they are in the majority it doesn't mean that their way is the easy way, or even the ONLY way for everybody?
If my son doesn't want to look you in the eye, I won't force him to. That's ridiculous to spend so much time trying to force someone to do something they are uncomfortable with. Maybe my son will never look another person in the eye. No one ever died from lack of eye contact. What he will do is learn to be the best person that he can be. I will encourage his strengths (which are many) and work with him on the things that he needs to become a successful adult.
He's working all the time to understand you. Yet so often, other people don't think he deserves to be understood or accepted at all. A childhood should be joyful. It should be fun. It shouldn't be a full time job trying to please a bunch of people who don't appreciate a child who doesn't fit into their perfect mold. So, I won't force my son to be "normal". I will never do that to him. I will always celebrate the wonderful, funny, charming, smart, quirky little boy that I am so blessed to call my son. He's not the one who needs changing. It's the rest of the world that needs a good lesson in acceptance and compassion for their fellow humans, autistic or not.
Monday, October 4, 2010
Accepting Autism.
I guess I will start this off my telling a little about my story. I'm a thirty something married mom of one little boy, who happens to be on the autism spectrum. My son developed like most babies. What I at first thought was colic lasted the entire first two years of his life. He screamed. A lot. He hated to be put down. Contrary to popular belief, not all autistic people shun touches and hugs. If I wasn't rocking with him or swaddling him tightly, he was screaming. One night, when he was about a year old, I came home from work and he was sitting on the floor with his dad. He was tearing apart a newspaper and meticulously putting the pieces back together again, like a puzzle. We all said he was a genius! He'd do things like that for hours, obsessively.
At two, he still didn't talk. His doctor suggested speech therapy. That's when I first heard the words "autism". He walked into the speech therapists office and lined up all of the blocks, end to end by color. I was concerned, but because he progressed so fast in speech therapy, the therapist never mentioned it again and I tried to forget it. We did sign language the first few months, and by the time he was three, he was able to say a few words and sentences. He was still behind his peers, but we weren't concerned too much. He was an only child and didn't attend preschool. His dad and I were not social butterflies ourselves either, so we just assumed he was a thinker. Shortly before his third birthday, we were at an art supply store. My husband was pushing him in the cart and I left to find some things. I waved to my son and disappeared. He started yelling "Aisle 7! Aisle 7!" His dad was not sure where he heard that until he realized that I had waved to our son under a giant sign that read "Aisle 7". That's when we realized that he could read. We came home that day and tested our theory by giving him books and pointing to words. He read everything we put in front of him. More proof that our son was a genius!
It was around that time that my husband's mother watched an episode of "Oprah" about autism. She asked me if I thought that he had autism. My prior experience with autism was working at a school with children who had various severe developmental and intellectual disabilities. The kids I knew were not like my son at all. He could read! He could talk now! He was just so smart, that was why he was different. I think I knew then that she was right, but I couldn't admit it to anyone else.
Meanwhile, my son was having increasingly atypical behaviors. He screamed all the time. In a store, he would melt down every time. One of us had to stay in the car while the other one shopped. Every change in routine was agonizing for him. Noises terrified him. He would hit his head into the wall repeatedly. If we drove to his grandparent's house, we had to take the same route every single time or he'd panic. He had pretty bad echolalia. He confused words all the time. He wouldn't play with other children. I was starting to get really scared.
I started to read about autism. I read all the scary stuff. All the crazy theories about cures and vaccines. Fortunately, I'm a big lover of science so I quickly disregarded all of that. I started to read about autism from blogs like wrongplanet.net (a message board for people on the spectrum). I read books by autistic people like Temple Grandin and John Elder Robison, and every clinical book on autism that I could find at the library. I knew that my son was autistic. I asked his doctor and she said he seemed fine, but maybe we needed parenting classes. I asked her again on another visit, and she said that his dad and I should probably take those parenting classes. She gave us some information on different seminars and classes. That's when I did something bad. I provoked him into a melt down. He was four, and still in diapers. He was terrified of the potty. I knew that asking him to use the potty at the doctors would make him melt down. I wanted her to see what we saw.
Casually, I mentioned to my son that we should try to go potty. He screamed. His scream is not a normal scream. It is incredibly high pitched. My dog has started to cry and run away listening to that scream. Then he threw himself on the floor and started kicking and hitting his head. I picked him up so that he wouldn't hurt his head on the exam table. He started to head butt me until I put him down away from the table. The doctor's jaw DROPPED. She FINALLY listened to us and gave us the referral to a behaviorist, who suggested he had SPD (sensory processing disorder) and autism. With that we got a referral to an occupational therapist who confirmed the SPD and recommended we take him to a developmental pediatrician or psychiatrist to have him evaluated for autism. After over a year on a waiting list to be evaluated, my son was finally given the diagnosis of autism this past summer, shortly after he turned six.
It has been a long journey, and I know it's just the beginning. I was so afraid of autism at first. I was terrified for my son and his future. Slowly, I started to realize that it's not a death sentence. Is it harder to raise a child on the spectrum? I don't know. He's my only child and so far, raising him, even with all the challenges, has been the best experience of my life. I think that after my initial fears, when I came to acceptance, I fell in love with my son even more. He is an amazing child. I love his beautiful autistic mind. It has made him so quirky, and funny and sharp. It has made him the wonderful little boy that I love so much. Of course, I still worry about things like who will take care of him when we are gone? What will his future be like? Will he have a job, go to college, get married, have kids?
I don't know. Life is never certain for any of us. All I can do is try to focus on what we can do now and hope that with the right supports and interventions, he can reach his full potential and have a happy life.
Do we still have setbacks and issues? Of course. It's not always easy, but it's always worth it. I had to quit working to be at home with him. Financially, it's really hard but I can't imagine not being here for him. There are a lot of things put on hold indefinitely, but those things are not as important as my son. I've come to accept the fact that my son is a little different and it's not only okay, I wouldn't want him any other way. I truly mean that. If someone could take away my son's autism I wouldn't want them to. He is perfect just the way he is. I want him to grow up knowing that.
I wanted to call my blog "Accepting Autism" because so many times, we parent's don't. We chase "cures" and are often victims of those who take advantage of our desperation with pseudo science and false hope. I hate hearing about desperate parents who deplete their entire savings to cure a child who at the end of the day, will always be autistic. That is not to say I don't believe in therapy. I'm all about proven therapies and interventions. Because people with autism have a very real disability and unlike a lot of disabilities, it's not always apparent to the outside world at first glance. I'm a strong proponent of neurodiversity and disability rights. I don't think my son is "broken". He just needs to learn a lot of things that come naturally to most people. He works so hard every day to function in a world that is very hostile to him. I think the purpose of this blog is to educate people about diversity so that the world will be a little kinder to my son and people like him. I know that he's different, not less. I'm just waiting for everyone else to get on board with that.
At two, he still didn't talk. His doctor suggested speech therapy. That's when I first heard the words "autism". He walked into the speech therapists office and lined up all of the blocks, end to end by color. I was concerned, but because he progressed so fast in speech therapy, the therapist never mentioned it again and I tried to forget it. We did sign language the first few months, and by the time he was three, he was able to say a few words and sentences. He was still behind his peers, but we weren't concerned too much. He was an only child and didn't attend preschool. His dad and I were not social butterflies ourselves either, so we just assumed he was a thinker. Shortly before his third birthday, we were at an art supply store. My husband was pushing him in the cart and I left to find some things. I waved to my son and disappeared. He started yelling "Aisle 7! Aisle 7!" His dad was not sure where he heard that until he realized that I had waved to our son under a giant sign that read "Aisle 7". That's when we realized that he could read. We came home that day and tested our theory by giving him books and pointing to words. He read everything we put in front of him. More proof that our son was a genius!
It was around that time that my husband's mother watched an episode of "Oprah" about autism. She asked me if I thought that he had autism. My prior experience with autism was working at a school with children who had various severe developmental and intellectual disabilities. The kids I knew were not like my son at all. He could read! He could talk now! He was just so smart, that was why he was different. I think I knew then that she was right, but I couldn't admit it to anyone else.
Meanwhile, my son was having increasingly atypical behaviors. He screamed all the time. In a store, he would melt down every time. One of us had to stay in the car while the other one shopped. Every change in routine was agonizing for him. Noises terrified him. He would hit his head into the wall repeatedly. If we drove to his grandparent's house, we had to take the same route every single time or he'd panic. He had pretty bad echolalia. He confused words all the time. He wouldn't play with other children. I was starting to get really scared.
I started to read about autism. I read all the scary stuff. All the crazy theories about cures and vaccines. Fortunately, I'm a big lover of science so I quickly disregarded all of that. I started to read about autism from blogs like wrongplanet.net (a message board for people on the spectrum). I read books by autistic people like Temple Grandin and John Elder Robison, and every clinical book on autism that I could find at the library. I knew that my son was autistic. I asked his doctor and she said he seemed fine, but maybe we needed parenting classes. I asked her again on another visit, and she said that his dad and I should probably take those parenting classes. She gave us some information on different seminars and classes. That's when I did something bad. I provoked him into a melt down. He was four, and still in diapers. He was terrified of the potty. I knew that asking him to use the potty at the doctors would make him melt down. I wanted her to see what we saw.
Casually, I mentioned to my son that we should try to go potty. He screamed. His scream is not a normal scream. It is incredibly high pitched. My dog has started to cry and run away listening to that scream. Then he threw himself on the floor and started kicking and hitting his head. I picked him up so that he wouldn't hurt his head on the exam table. He started to head butt me until I put him down away from the table. The doctor's jaw DROPPED. She FINALLY listened to us and gave us the referral to a behaviorist, who suggested he had SPD (sensory processing disorder) and autism. With that we got a referral to an occupational therapist who confirmed the SPD and recommended we take him to a developmental pediatrician or psychiatrist to have him evaluated for autism. After over a year on a waiting list to be evaluated, my son was finally given the diagnosis of autism this past summer, shortly after he turned six.
It has been a long journey, and I know it's just the beginning. I was so afraid of autism at first. I was terrified for my son and his future. Slowly, I started to realize that it's not a death sentence. Is it harder to raise a child on the spectrum? I don't know. He's my only child and so far, raising him, even with all the challenges, has been the best experience of my life. I think that after my initial fears, when I came to acceptance, I fell in love with my son even more. He is an amazing child. I love his beautiful autistic mind. It has made him so quirky, and funny and sharp. It has made him the wonderful little boy that I love so much. Of course, I still worry about things like who will take care of him when we are gone? What will his future be like? Will he have a job, go to college, get married, have kids?
I don't know. Life is never certain for any of us. All I can do is try to focus on what we can do now and hope that with the right supports and interventions, he can reach his full potential and have a happy life.
Do we still have setbacks and issues? Of course. It's not always easy, but it's always worth it. I had to quit working to be at home with him. Financially, it's really hard but I can't imagine not being here for him. There are a lot of things put on hold indefinitely, but those things are not as important as my son. I've come to accept the fact that my son is a little different and it's not only okay, I wouldn't want him any other way. I truly mean that. If someone could take away my son's autism I wouldn't want them to. He is perfect just the way he is. I want him to grow up knowing that.
I wanted to call my blog "Accepting Autism" because so many times, we parent's don't. We chase "cures" and are often victims of those who take advantage of our desperation with pseudo science and false hope. I hate hearing about desperate parents who deplete their entire savings to cure a child who at the end of the day, will always be autistic. That is not to say I don't believe in therapy. I'm all about proven therapies and interventions. Because people with autism have a very real disability and unlike a lot of disabilities, it's not always apparent to the outside world at first glance. I'm a strong proponent of neurodiversity and disability rights. I don't think my son is "broken". He just needs to learn a lot of things that come naturally to most people. He works so hard every day to function in a world that is very hostile to him. I think the purpose of this blog is to educate people about diversity so that the world will be a little kinder to my son and people like him. I know that he's different, not less. I'm just waiting for everyone else to get on board with that.
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