Today I took Liam and Zoe to their second drama workshop, with my fresh new eyes from the Autism Summer Conference. This group sounded promising, as it has the word "community" in its title and the director assured me that inclusion is one of their goals.
It started out with people of all ages in one room, presenting monologues they were working on. Liam squirmed in his metal folding chair and babbled to himself quietly. I took him out for a break. When we returned and he noticed yet another person getting up to speak, he cried out, "I don't want to go up there and talk! I don't know what to say!" Everyone laughed, including me. Zoe was exceptional, sitting quietly through every monologue, although I know she was bored to tears.
The second part of the workshop is for the kids to split off from the teens/adults and do some improv work. Liam did ok with that, although he needed some prompting and some physical support from me to be able to sit on the hard floor. Him being able to sit still and quietly is something I'm learning to let go of. I think Martha Leary would say his body needs support--it may not be something I can demand of him. The other kids basically ignored him, except for one bratty little girl in pajamas, who exclaimed, "Ewww, I'm not touching that ball now", after Liam rolled on it and touched his tongue to it when it was his turn to hold it. He went to the mirror (the workspace is a dance studio and he loves the multiple mirrors) and put his arms out to touch his image. "Uh, that was weird, " the pajama brat said, "He just hugged himself." Her mom shushed her and I fought the urge to say, "Yeah? Well, he thinks YOU'RE weird for wearing pajamas in public." (Which was true; he asked me about it.) He participated in the activities, with me prompting and translating.
The third component is a movement workshop with this German woman who is quite talented and experienced. She has an authoritarian, yet gentle approach that these kids are not used to, but is quite effective. I spoke to her about Liam briefly after last week's class and she had asked us not to interfere, but just let him be. She tried to engage him a couple of times in a dance, but he preferred the company of the fire extinguisher in the corner. There is a ballet barre there that he leans on. She paired the kids up (except Liam) and walked them through a simple story told with movement. After watching the kids walk through it a few times, I took Liam outside with me and we talked about the story, which I knew he heard and understood.
The other groups presented their dances and I told the teacher, "Liam would like to try it with me as the princess." She said of course. The hardest part was getting him to touch the fake rose he was supposed to use. He was afraid of getting pricked by thorns. Once we got past that, he did it perfectly! Everyone clapped and we even did it again for the adults. I just had to whisper to him once to get him started. I think everyone was surprised. They hadn't thought he was capable of remembering and following simple directions.
This is the hardest thing about autism--not autism itself but other people's perceptions of it; of Liam. The parents look at me with pity and the kids look at Liam with confusion or disgust. They don't know how smart he is, how funny, how creative and perceptive. "He's my son!" I want to scream at them. "Even if everything you think were true, would it kill you to just accept him?" Of course, if I was not Liam's mom and I saw a kid rolling around on the floor babbling while the other kids sat still and listened. . . I have to admit I wouldn't expect much from that kid. So I don't scream at them. I don't yell. I don't even lecture. I just keep showing up with my son, waiting patiently for the moment he will dazzle them the way he dazzles me.
Saturday, June 28, 2008
Friday, June 27, 2008
Labels, labels
One of the topics discussed at the Summer Autism Conference was the debate over labels. Should we use "people first" language and refer to someone as "a person who has autism"? Or should we say "autistic person"? The self-advocates each had their own preferences. Those who use the term "autistic" say that it is like any other descriptive word--blonde, smart, athletic, funny, etc. If we shy away from the term, we are admitting it is negative. Those who prefer the people first language say that they are a person first and that autism is one of many traits that they HAVE--blond hair, athletic skills, a sense of humour, etc.
Everyone agreed that it should be up to the individual to let people know how they would like to be referred to. I have struggled with this issue myself. I used to say "autistic", then switched to "has autism". I made up my mind to let Liam decide. This is how our conversation went.
Me: Liam, would you prefer to be called a person with autism or an autistic person?
Liam: (Looking at me like I'm crazy) Just call me Liam.
Everyone agreed that it should be up to the individual to let people know how they would like to be referred to. I have struggled with this issue myself. I used to say "autistic", then switched to "has autism". I made up my mind to let Liam decide. This is how our conversation went.
Me: Liam, would you prefer to be called a person with autism or an autistic person?
Liam: (Looking at me like I'm crazy) Just call me Liam.
The Show
I'm slowly processing the information from the conference as it inserts itself naturally into my life.
Today was the kids' final "show" at the end of a week of music camp. Their group learned singing. Liam had an inclusion aide, who we love and does a really great job meeting his sensory needs and helping him participate when he wants to. Liam and Zoe's group had to sit on a hard floor and wait for about 45 minutes until it was their turn to perform. That kind of situation can be a disaster for Liam. I saw his aide take him out and run around with him outside at one point, which was smart. When the kids got up on stage, Liam's aide sat on a chair to the side. Liam was the only boy. The first two songs were just bad songs (Hannah Montana and High School Musical--God help us) but I know Liam knows the words. He wasn't really singing, but he stood at the back and did some of the dance moves (out of sync). He generally stayed in place while occasionally pulling his shirt over his head.
I noticed he never went in the front to do a solo. I immediately became furious and ready for a fight, thinking the music director put Liam in the back where he wouldn't embarrass the group. Fortunately, I spoke to Liam's aide, who told me the director did try to get Liam to do a solo several times, but he refused.
A year ago, it might have upset me more that he "stuck out like a sore thumb", but not so much today. After everything I've learned, I just hope he was happy up there. I hope he liked the music. I hope he liked being with his little sister. I hope he liked knowing I was there to watch him.
Today was the kids' final "show" at the end of a week of music camp. Their group learned singing. Liam had an inclusion aide, who we love and does a really great job meeting his sensory needs and helping him participate when he wants to. Liam and Zoe's group had to sit on a hard floor and wait for about 45 minutes until it was their turn to perform. That kind of situation can be a disaster for Liam. I saw his aide take him out and run around with him outside at one point, which was smart. When the kids got up on stage, Liam's aide sat on a chair to the side. Liam was the only boy. The first two songs were just bad songs (Hannah Montana and High School Musical--God help us) but I know Liam knows the words. He wasn't really singing, but he stood at the back and did some of the dance moves (out of sync). He generally stayed in place while occasionally pulling his shirt over his head.
I noticed he never went in the front to do a solo. I immediately became furious and ready for a fight, thinking the music director put Liam in the back where he wouldn't embarrass the group. Fortunately, I spoke to Liam's aide, who told me the director did try to get Liam to do a solo several times, but he refused.
A year ago, it might have upset me more that he "stuck out like a sore thumb", but not so much today. After everything I've learned, I just hope he was happy up there. I hope he liked the music. I hope he liked being with his little sister. I hope he liked knowing I was there to watch him.
Thursday, June 26, 2008
The First Thing You Learned
I feel like I have returned from autism boot camp. Because Lisa and I went through it together, I feel even more bonded to her.
I'm still processing all of the emotions, ideas and opinions. Last night when I got home, the first thing Liam asked me was, "Did you have fun?" I said yes. "Did you learn more about autism?" Yes. "What was the first thing you learned?"
"I learned that I need to listen to you more."
I'm still processing all of the emotions, ideas and opinions. Last night when I got home, the first thing Liam asked me was, "Did you have fun?" I said yes. "Did you learn more about autism?" Yes. "What was the first thing you learned?"
"I learned that I need to listen to you more."
Tuesday, June 24, 2008
Autism Summer Conference Day Two
More mind-blowing information today. I am mentally exhausted.
Martha Leary's presentation on Rhythm was the most thought-provoking for me today. It underscored that so many of our interactions with Liam are really not helpful (at best). Leary indicated that echolalia and scripted language often do serve functions and that sometimes the caregiver/teacher must do some detective work to figure out what our loved one/student is trying to say. Behaviorists have taught us to completely ignore Liam's echolalia and repetitive speech--that he is doing it to get attention, so we must ignore to extinguish it. If Leary is right--if Liam is attempting to communicate, then we are doing him a disservice. I must do better at discerning what function all of his speech has, not just the words I deem "socially appropriate".
Tonight, after dinner, he was wandering around in the backyard; in Mr. Bee Land, as I call his imaginary travels. I came out to him and he yelled at me to go away. "I need you to go. Go back in the house. You need to leave. I hate you." I tried asking him why to no effect. I offered some possible reasons: "Are you mad at me for going away all day? Did you not like what Daddy and I were talking about? Is it the sound of my voice or my words?" "I just don't like you," was his answer. I've learned not to take this personally. "I don't need you to love me," I tell him pleasantly, "I love you enough for both of us."
More tomorrow. So tired I can't type for shit.
Martha Leary's presentation on Rhythm was the most thought-provoking for me today. It underscored that so many of our interactions with Liam are really not helpful (at best). Leary indicated that echolalia and scripted language often do serve functions and that sometimes the caregiver/teacher must do some detective work to figure out what our loved one/student is trying to say. Behaviorists have taught us to completely ignore Liam's echolalia and repetitive speech--that he is doing it to get attention, so we must ignore to extinguish it. If Leary is right--if Liam is attempting to communicate, then we are doing him a disservice. I must do better at discerning what function all of his speech has, not just the words I deem "socially appropriate".
Tonight, after dinner, he was wandering around in the backyard; in Mr. Bee Land, as I call his imaginary travels. I came out to him and he yelled at me to go away. "I need you to go. Go back in the house. You need to leave. I hate you." I tried asking him why to no effect. I offered some possible reasons: "Are you mad at me for going away all day? Did you not like what Daddy and I were talking about? Is it the sound of my voice or my words?" "I just don't like you," was his answer. I've learned not to take this personally. "I don't need you to love me," I tell him pleasantly, "I love you enough for both of us."
More tomorrow. So tired I can't type for shit.
Monday, June 23, 2008
Autism Summer Conference Day One
I am going free form here, because my mind is reeling from today. I learned so much, had many assumptions challenged and myths shattered. I knew within the first twenty minutes that this conference was going to be life changing. It's going to take me a long time to process and absorb the information I heard today, but I wanted to record my first impressions.
The first presenter was Anne Donnellan, who has worked in the field of autism for 40 years. She started the first preschool for kids with autism in North America. Her presentation was based on the fact that we know very little about autism, so we supplement that lack of knowledge with fabrications or assumptions. She mentioned the oft-cited statistic that 80% of people with autism have "mental retardation" and how there is no evidence to support that assertation. I got to meet her at the evening reception and thanked her for her work.
The second presenter was Martha Leary, an SLP, who spoke about sensory and movement difference in people with autism. She connected behaviors to movement differences and referred to her paper, which compared movement disorders in acquired neurological conditions (such as Parkinson's disease) and autism. Symptoms in other neurological conditions are considered "behaviors" in autism. One of the specific behaviors she mentioned was scratching. When kids with autism scratched someone, it was possible they were craving proprioceptive input. When pressure was applied to their fingertips, hands, and wrists, the behavior stopped. When Liam was doing this, I was told by a behaviorist that he was "taking delight in hurting others" and it "scared" her. Maybe she was right, maybe she wasn't, but I know that when I held his hands tightly (to stop him) the behavior ceased.
Session three was Nan Negri and Kate McGinnity, a behaviorist and special ed teacher who do sensory activities that mimic the autistic experience. I know some ability awareness experts who frown on these types of activities, on the basis that they promote pity for the person with the disability, but I honestly found it enlightening and think it would be helpful for Liam's classmates, teachers and peers in the community.
Estee Klar-Wolfond was the final speaker of the day. Her speech was a bit dry in the delivery (she read the entire thing) but very inspirational and controversial. She is a disability rights activist who partners with adults with autism to challenge the "fix what's broken" mentality of the medical and educational systems.
I will probably have trouble sleeping tonight with all of this new information, but when I came home, my little boy greeted me at the door with all kinds of questions. He was happy and excited to tell me about his first day at music camp. I am prouder than ever to be his mom.
The first presenter was Anne Donnellan, who has worked in the field of autism for 40 years. She started the first preschool for kids with autism in North America. Her presentation was based on the fact that we know very little about autism, so we supplement that lack of knowledge with fabrications or assumptions. She mentioned the oft-cited statistic that 80% of people with autism have "mental retardation" and how there is no evidence to support that assertation. I got to meet her at the evening reception and thanked her for her work.
The second presenter was Martha Leary, an SLP, who spoke about sensory and movement difference in people with autism. She connected behaviors to movement differences and referred to her paper, which compared movement disorders in acquired neurological conditions (such as Parkinson's disease) and autism. Symptoms in other neurological conditions are considered "behaviors" in autism. One of the specific behaviors she mentioned was scratching. When kids with autism scratched someone, it was possible they were craving proprioceptive input. When pressure was applied to their fingertips, hands, and wrists, the behavior stopped. When Liam was doing this, I was told by a behaviorist that he was "taking delight in hurting others" and it "scared" her. Maybe she was right, maybe she wasn't, but I know that when I held his hands tightly (to stop him) the behavior ceased.
Session three was Nan Negri and Kate McGinnity, a behaviorist and special ed teacher who do sensory activities that mimic the autistic experience. I know some ability awareness experts who frown on these types of activities, on the basis that they promote pity for the person with the disability, but I honestly found it enlightening and think it would be helpful for Liam's classmates, teachers and peers in the community.
Estee Klar-Wolfond was the final speaker of the day. Her speech was a bit dry in the delivery (she read the entire thing) but very inspirational and controversial. She is a disability rights activist who partners with adults with autism to challenge the "fix what's broken" mentality of the medical and educational systems.
I will probably have trouble sleeping tonight with all of this new information, but when I came home, my little boy greeted me at the door with all kinds of questions. He was happy and excited to tell me about his first day at music camp. I am prouder than ever to be his mom.
Wednesday, June 18, 2008
Another Kind of Party
Liam was invited to join his mainstream class at their end of the year party at my favorite place, Pump It Up. (In the previous sentence, italics mean sarcasm.)
I offered to drive some kids in my car--two boys from the class who were so sweet with Liam, holding his hand while we walked to my car. They were full of questions about him--how old is his sister? where does he live? where did he go to school before? Finally, the boy in back said, "Um, Liam's mom? How old was Liam. . .when. . . um, when he. . .?
"Do you want to know how old he was when he got autism?" I said.
"Yeah."
"Well, we don't know exactly, but probably since he was a baby and maybe even since he was born. He was different from other babies. Are you wondering how he got it?"
"Yeah."
"We don't really know that either. We just know his brain works a little differently and that even though he's smart, some things--like making friends--are hard for him. That's why you and your friends are such good helpers for him."
"Yeah, we always help him."
The other kid mentioned a family friend with autism and some ways in which he's different. We had quite a nice, mature talk about it, with Liam listening, of course, sucking his thumb and looking out the window.
Once we got into the "play" portion of Pump it Up, I regretted offering to drive. It became clear that Liam was not interested in jumping on the inflatables for two hours. Liam was interested in breaking every rule at Pump it Up, in plain view of the sour-faced teen aged attendants. He strode up the slide steps with no mat, he dove into the ball pit without waiting in line, he went the wrong direction into the obstacle course and stayed in beyond the allotted time frame--all grievous crimes, to be sure. Guess whose job it was to chase him around? If I hadn't brought the other kids, I could have taken him back to school, which I threatened to do anyway. No effect. "Why does this have to be so hard? Why can't you just have fun?" I quietly pleaded with him, "This one time, could you PLEASE do what the other kids are doing? Just bounce in the goddamn filth-ridden germ holes?"
I finally came to the conclusion that he didn't like being there (I'm quite a genius) and I would have to find some sane way to occupy the remainder of time before cake and pizza. Thanks be to God, I had some books in my car. I asked a kind mom to look after him, while I ran out to get them. When I arrived with my stack of books, a group of the girls surrounded us. Liam was happy reading and listening. Some of the girls borrowed books; they were tired of inflatables and ready for pizza and cake, too. The remainder of the afternoon passed without incident, at least nothing that would qualify as an incident in life with Liam.
The scary part about this is that he was invited to a birthday party there this Friday. This one is Rob's turn, because I swear to you I will go straight to hell before I take him back to that place again. Peer interaction, my ass.
I offered to drive some kids in my car--two boys from the class who were so sweet with Liam, holding his hand while we walked to my car. They were full of questions about him--how old is his sister? where does he live? where did he go to school before? Finally, the boy in back said, "Um, Liam's mom? How old was Liam. . .when. . . um, when he. . .?
"Do you want to know how old he was when he got autism?" I said.
"Yeah."
"Well, we don't know exactly, but probably since he was a baby and maybe even since he was born. He was different from other babies. Are you wondering how he got it?"
"Yeah."
"We don't really know that either. We just know his brain works a little differently and that even though he's smart, some things--like making friends--are hard for him. That's why you and your friends are such good helpers for him."
"Yeah, we always help him."
The other kid mentioned a family friend with autism and some ways in which he's different. We had quite a nice, mature talk about it, with Liam listening, of course, sucking his thumb and looking out the window.
Once we got into the "play" portion of Pump it Up, I regretted offering to drive. It became clear that Liam was not interested in jumping on the inflatables for two hours. Liam was interested in breaking every rule at Pump it Up, in plain view of the sour-faced teen aged attendants. He strode up the slide steps with no mat, he dove into the ball pit without waiting in line, he went the wrong direction into the obstacle course and stayed in beyond the allotted time frame--all grievous crimes, to be sure. Guess whose job it was to chase him around? If I hadn't brought the other kids, I could have taken him back to school, which I threatened to do anyway. No effect. "Why does this have to be so hard? Why can't you just have fun?" I quietly pleaded with him, "This one time, could you PLEASE do what the other kids are doing? Just bounce in the goddamn filth-ridden germ holes?"
I finally came to the conclusion that he didn't like being there (I'm quite a genius) and I would have to find some sane way to occupy the remainder of time before cake and pizza. Thanks be to God, I had some books in my car. I asked a kind mom to look after him, while I ran out to get them. When I arrived with my stack of books, a group of the girls surrounded us. Liam was happy reading and listening. Some of the girls borrowed books; they were tired of inflatables and ready for pizza and cake, too. The remainder of the afternoon passed without incident, at least nothing that would qualify as an incident in life with Liam.
The scary part about this is that he was invited to a birthday party there this Friday. This one is Rob's turn, because I swear to you I will go straight to hell before I take him back to that place again. Peer interaction, my ass.
Best Party Ever
Saturday was Liam's birthday party/one of the best days of my life. We've had a party for him every year, but this was the first time the guests were his friends. Before, I'd invite his classmates and my friends' kids, who knew who Liam was and weren't about to turn down cake and goodie bags. This year, Liam made the guest list and every kid who came really knows him and likes him.
We invited two of the kids from the general ed class, where he mainstreams in the afternoons. They are both so sweet. The little girl was so excited to give him his present, which apparently they had had a conversation about! Two of his sixth-grade buddies from school showed up. I was shocked that these girls would take two hours out of their busy weekend to come to a little boy's birthday party. Their mothers are obviously doing something right.
One thing that hasn't changed however, is Liam's reaction to the party. He remained in a remote corner of our yard, talking to himself and rarely approaching the guests. I know how excited he was for everyone to get here, but once it happened, he couldn't process it. In fact, that morning, while I was preparing for the party he got kind of squirrelly. He was trying to get a rise out of me by touching things he's not supposed to, asking the same questions forty thousand times, and generally annoying me. Finally, I remembered to make him a schedule for the party. After that, he was fine.
I had to prompt (and by "prompt", I mean "force") him to greet each guest when they arrived and made him stand next to each friend to pose for a picture. I will make him a "friend" photo album. After all the times he has cried, asking why he doesn't have friends, why he doesn't get asked on playdates or sleepovers, this party felt like a small victory. Now when he feels lonely or left out, he will have proof that, even if just for this one day, kids came over to his house because they like him.
We invited two of the kids from the general ed class, where he mainstreams in the afternoons. They are both so sweet. The little girl was so excited to give him his present, which apparently they had had a conversation about! Two of his sixth-grade buddies from school showed up. I was shocked that these girls would take two hours out of their busy weekend to come to a little boy's birthday party. Their mothers are obviously doing something right.
One thing that hasn't changed however, is Liam's reaction to the party. He remained in a remote corner of our yard, talking to himself and rarely approaching the guests. I know how excited he was for everyone to get here, but once it happened, he couldn't process it. In fact, that morning, while I was preparing for the party he got kind of squirrelly. He was trying to get a rise out of me by touching things he's not supposed to, asking the same questions forty thousand times, and generally annoying me. Finally, I remembered to make him a schedule for the party. After that, he was fine.
I had to prompt (and by "prompt", I mean "force") him to greet each guest when they arrived and made him stand next to each friend to pose for a picture. I will make him a "friend" photo album. After all the times he has cried, asking why he doesn't have friends, why he doesn't get asked on playdates or sleepovers, this party felt like a small victory. Now when he feels lonely or left out, he will have proof that, even if just for this one day, kids came over to his house because they like him.
Thursday, June 12, 2008
My Letter to Liam, Chapter 8
Every year on my kids' birthdays, I write them a letter. Here is this year's:
Liam Bee,
Eight short years ago I became a mama when I met you for the first time. What a wild, wonderful journey we have taken together so far! This year has probably been the most significant in your life.
Last summer, I was at the end of my rope with your destructive and aggressive behavior. I worked hard with you all summer and at the end of it, you were doing fine again. I started to see more glimpses of my Liam, my sweet boy. We had hopes that your new teacher would be good for you, but that was not in God’s plan. School went from bad to worse. I tried everything I knew and I felt you slipping away from me. I made a bold move by placing you in another school, but I now know it was the right choice. Your new teacher bonded with you the first week. Right away, she was telling me how smart you were. Like an angel, she gathered you into her loving classroom and finally made you feel safe and valued at school. After a couple of months of hard work from everyone, especially you, I had my little boy back.
Since then, we have seen miraculous progress with you. You are reading, spelling and doing math. You learn new things every day and, even better, you now love school! Everyone there loves you and you are making friends completely on your own. I took you to a social skills group last month and the facilitator told me, “This is a different child. He could be our typical peer in the group.”
Daddy and I invited your teachers and aides to an appreciation night at the Autism Society. Everyone sat at the table and told stories about you—good stories! They all enjoy your humor, insight and affection.
This year, you are really enamored with dogs. You want one so badly, but we have agreed that you must become more independent first. You are still obsessed with nail polish and have to check every woman’s nails when you first see them. You love watching Max and Ruby and Lady and the Tramp.
This year’s birthday party will be the best ever. You decided who to invite and even invited some of your sixth-grade girlfriends on your own! Everyone is so excited to come celebrate your birthday.
There are no limits on what you can do in life and I will do everything I can to make sure you succeed in being productive and happy. It has become my life’s work to fight for you and I do it gladly. You are my star, my miracle boy, my puzzle. I love you forever and ever.
Love,
Mama
Liam Bee,
Eight short years ago I became a mama when I met you for the first time. What a wild, wonderful journey we have taken together so far! This year has probably been the most significant in your life.
Last summer, I was at the end of my rope with your destructive and aggressive behavior. I worked hard with you all summer and at the end of it, you were doing fine again. I started to see more glimpses of my Liam, my sweet boy. We had hopes that your new teacher would be good for you, but that was not in God’s plan. School went from bad to worse. I tried everything I knew and I felt you slipping away from me. I made a bold move by placing you in another school, but I now know it was the right choice. Your new teacher bonded with you the first week. Right away, she was telling me how smart you were. Like an angel, she gathered you into her loving classroom and finally made you feel safe and valued at school. After a couple of months of hard work from everyone, especially you, I had my little boy back.
Since then, we have seen miraculous progress with you. You are reading, spelling and doing math. You learn new things every day and, even better, you now love school! Everyone there loves you and you are making friends completely on your own. I took you to a social skills group last month and the facilitator told me, “This is a different child. He could be our typical peer in the group.”
Daddy and I invited your teachers and aides to an appreciation night at the Autism Society. Everyone sat at the table and told stories about you—good stories! They all enjoy your humor, insight and affection.
This year, you are really enamored with dogs. You want one so badly, but we have agreed that you must become more independent first. You are still obsessed with nail polish and have to check every woman’s nails when you first see them. You love watching Max and Ruby and Lady and the Tramp.
This year’s birthday party will be the best ever. You decided who to invite and even invited some of your sixth-grade girlfriends on your own! Everyone is so excited to come celebrate your birthday.
There are no limits on what you can do in life and I will do everything I can to make sure you succeed in being productive and happy. It has become my life’s work to fight for you and I do it gladly. You are my star, my miracle boy, my puzzle. I love you forever and ever.
Love,
Mama
Liam Turns Eight
Today is Liam's eighth birthday. He started it early--around 4 am he got up, wanting to open his presents.
I don't know if other moms do this, but on the days leading up to my kids' birthdays, I relive the time just before they were born--the anticipation, the wonder, the suspense. I remember washing all his little gender-neutral clothes and putting them away, getting his nursery ready, packing my bag for the hospital (foolishly putting in non-maternity clothes for going home). I knew my life was about to change forever, but I had no true concept of what lay ahead. No one does. The moment I saw Liam's face, I recognized him. I knew him from somewhere. It was clear to me that we had unfinished business and eight years later, we are still sorting it all out.
I don't know if other moms do this, but on the days leading up to my kids' birthdays, I relive the time just before they were born--the anticipation, the wonder, the suspense. I remember washing all his little gender-neutral clothes and putting them away, getting his nursery ready, packing my bag for the hospital (foolishly putting in non-maternity clothes for going home). I knew my life was about to change forever, but I had no true concept of what lay ahead. No one does. The moment I saw Liam's face, I recognized him. I knew him from somewhere. It was clear to me that we had unfinished business and eight years later, we are still sorting it all out.
Wednesday, June 11, 2008
Just The Way You Are
I read about the following piece on Valerie's List yesterday.
http://abcnews.go.com/GMA/OnCall/story?id=5033594&page=1
Is my child sick or is he different? This is something I have struggled with since realizing that Liam had autism. I say "realizing" because with Liam, there was no definitive diagnosis at first. I went from thinking, "Dear God, just don't let him have autism--anything but that" to "this doesn't have to be so bad."
It turns out it's not so bad and that's what the people in the Autistic Self-Advocacy Network are saying. To me, what's bad or difficult about Liam's autism is trying to fit him into a non-autistic world. This world expects you to answer when asked a question. It expects you to connect meaningfully with your peers, play team sports, sit quietly at your desk. This world expects you to keep your pants on in public. In Liam's world, those things are not important and, sometimes, they're not possible.
Last year, after reading Disability is Natural, I cut back on some of Liam's therapies. I started asking myself some hard questions about why I was forcing him into activities he hated and provided negligible benefit to him. Was it to make him into something he was never meant to be? After giving this a lot of thought, I came to the conclusion that any therapy or activity for Liam had to be justified by one or both of two main goals: that he is able to live independently as an adult and that he is happy. Will he ever have perfect penmanship? Probably not, but is perfect penmanship required to live independently or to be happy? Absolutely not. Does he need to read social cues to live independently and be happy? Yes, so we work on that. I just ended eight torturous months of taking Liam to gymnastics because I remembered that he doesn't need gymnastics to live independently and it clearly wasn't making anybody happy.
All this talk about a cure implies that my son is sick and I'm not sure that he is. He does need support for the parts of his autism that make life difficult for him and other people. When we were having such a hard time last year and I couldn't take him anywhere or do anything without a major shitfest I would have said, yes, he's sick. I came very close to dosing him with psychiatric meds originally meant to calm violent schizophrenics. A change in environment and staff completely turned him around. When we focus on a "cure", we may be doing so at the expense of the kind of support that isn't a quick fix, but helps so many kids like Liam feel comfortable in their own skins.
Speaking of cures, what does all the focus on genetics ultimately lead to? In the case of Down syndrome, it has led to selective abortions. It is possible that the future will not include anyone with neurological differences because they are "sick".
About a year ago, Liam and I got into an elevator. He turned to me and said, "Why are we riding the elevator? We are not disabled." He knows he has autism and that it makes some things hard for him, some things easy for him and lots of things are just the same as they are for any kid. He is more like a typical child than different from them. He doesn't know yet that he is considered by our society to be "disabled" and I will hide that from him for as long as I can.
If I could give Liam a pill right now that would instantly and safely take away his autism, would I do it? It's a monster of a question and if you ask me again in six months I might have a different answer. But today I say no. I will keep Liam--my Liam with all of his frustrating eccentricities and beautiful mysteries. Just the way he is.
http://abcnews.go.com/GMA/OnCall/story?id=5033594&page=1
Is my child sick or is he different? This is something I have struggled with since realizing that Liam had autism. I say "realizing" because with Liam, there was no definitive diagnosis at first. I went from thinking, "Dear God, just don't let him have autism--anything but that" to "this doesn't have to be so bad."
It turns out it's not so bad and that's what the people in the Autistic Self-Advocacy Network are saying. To me, what's bad or difficult about Liam's autism is trying to fit him into a non-autistic world. This world expects you to answer when asked a question. It expects you to connect meaningfully with your peers, play team sports, sit quietly at your desk. This world expects you to keep your pants on in public. In Liam's world, those things are not important and, sometimes, they're not possible.
Last year, after reading Disability is Natural, I cut back on some of Liam's therapies. I started asking myself some hard questions about why I was forcing him into activities he hated and provided negligible benefit to him. Was it to make him into something he was never meant to be? After giving this a lot of thought, I came to the conclusion that any therapy or activity for Liam had to be justified by one or both of two main goals: that he is able to live independently as an adult and that he is happy. Will he ever have perfect penmanship? Probably not, but is perfect penmanship required to live independently or to be happy? Absolutely not. Does he need to read social cues to live independently and be happy? Yes, so we work on that. I just ended eight torturous months of taking Liam to gymnastics because I remembered that he doesn't need gymnastics to live independently and it clearly wasn't making anybody happy.
All this talk about a cure implies that my son is sick and I'm not sure that he is. He does need support for the parts of his autism that make life difficult for him and other people. When we were having such a hard time last year and I couldn't take him anywhere or do anything without a major shitfest I would have said, yes, he's sick. I came very close to dosing him with psychiatric meds originally meant to calm violent schizophrenics. A change in environment and staff completely turned him around. When we focus on a "cure", we may be doing so at the expense of the kind of support that isn't a quick fix, but helps so many kids like Liam feel comfortable in their own skins.
Speaking of cures, what does all the focus on genetics ultimately lead to? In the case of Down syndrome, it has led to selective abortions. It is possible that the future will not include anyone with neurological differences because they are "sick".
About a year ago, Liam and I got into an elevator. He turned to me and said, "Why are we riding the elevator? We are not disabled." He knows he has autism and that it makes some things hard for him, some things easy for him and lots of things are just the same as they are for any kid. He is more like a typical child than different from them. He doesn't know yet that he is considered by our society to be "disabled" and I will hide that from him for as long as I can.
If I could give Liam a pill right now that would instantly and safely take away his autism, would I do it? It's a monster of a question and if you ask me again in six months I might have a different answer. But today I say no. I will keep Liam--my Liam with all of his frustrating eccentricities and beautiful mysteries. Just the way he is.
Subscribe to:
Posts (Atom)
