We just returned from a week of traveling. I say "traveling" and not "vacation" for a good reason, although there was one hour by the pool where I felt like I was relaxing.
Liam did very well, especially considering the lack of structure and constantly changing environments. Here is a story he wrote about his vacation (with his permission),
All the Dogs
By Liam
I met a dog named Lucky. A white dog. I met a dog named Shaggy. A black dog. I met a dog named Walter. A black and orange and white dog. I met a dog named Lola. A black poodle. I met a dog named George. A bulldog.
Lucky was Chris’s dog. She showed up on his doorstep one day. And the old dog is Shaggy. Lola is Wendy’s parents’ dog. She likes to jump on me. She likes to run really fast and eat grass and drink water. George is a bulldog. She likes to jump up on people too. Walter was having a dog party. He licked my hand. He ran around all the sides of the pool. Gus! Gus runs around the sides of the pool. Gus runs after Walter. Gus likes to give the ball to Walter.
Thursday, July 31, 2008
Monday, July 14, 2008
He's My Brother
I don't mention my daughter very much in this blog for a couple of reasons. This is about the experience of being an autism mom; parenting a child who is on the spectrum and all of the joy and tribulations that go along with that. Also, she is easy. She is a smart, healthy, well-behaved, helpful and loving six year-old. She is everything a parent could possibly dream for in a child. She does not create much drama or conflict and who wants to read about easy?
She is, however, the sister of an autistic brother. Her life experience will always be fundamentally different than that of her peers. As her mom, I do everything in my power to make sure she is not shortchanged or deprived of my attention and resources. I have spent more time taking her to playdates and birthday parties, volunteering in her class and at her school than I have done with Liam. I speak honestly to her about her brother; his challenges and difficulties, the best ways to help him. I listen to her frustration while limiting her self-pity. I've told her, "I know it's hard, but sibling relationships are never easy. My brother wasn't autistic, but he stole my money, beat me up, chased my friends away and read my diary. Does that sound fun?" I try very hard to have the most healthy relationship with her that I can in our odd situation, but the truth is that I don't know if I'm doing any of it right. Sometimes I imagine the conversations she will someday have with her therapist.
Two recent events made my heart ache for her:
1. Zoe had a friend over the other day. I was trying to get Liam to practice his handwriting and he was having his usual meltdown that precedes begrudging cooperation. "Liam, please," Zoe pleaded quietly with him "Don't do this in front of Emma."
2. I went to check on her long after bedtime. She was sitting on her bed silent and still. "Mama, " she said when I entered the room, "People never believe me when I tell them Liam's eight. Then I tell them he has autism but they don't understand. I just keep explaining it to them, but they never understand."
I told her that I know how hard it is; that I feel the same way. "But big people understand, " was her response. "Oh, no, Zoe," I said, "Big people don't always understand." I told her that if I was around, she could tell her friends to ask me. I told her there are a lot of kids who have the same issue and maybe she'd like to talk to them some time. Then I told her that if all that fails, she can simply say, "He's my brother and we love him just the way he is. Now do you want to play, or don't you?"
She is, however, the sister of an autistic brother. Her life experience will always be fundamentally different than that of her peers. As her mom, I do everything in my power to make sure she is not shortchanged or deprived of my attention and resources. I have spent more time taking her to playdates and birthday parties, volunteering in her class and at her school than I have done with Liam. I speak honestly to her about her brother; his challenges and difficulties, the best ways to help him. I listen to her frustration while limiting her self-pity. I've told her, "I know it's hard, but sibling relationships are never easy. My brother wasn't autistic, but he stole my money, beat me up, chased my friends away and read my diary. Does that sound fun?" I try very hard to have the most healthy relationship with her that I can in our odd situation, but the truth is that I don't know if I'm doing any of it right. Sometimes I imagine the conversations she will someday have with her therapist.
Two recent events made my heart ache for her:
1. Zoe had a friend over the other day. I was trying to get Liam to practice his handwriting and he was having his usual meltdown that precedes begrudging cooperation. "Liam, please," Zoe pleaded quietly with him "Don't do this in front of Emma."
2. I went to check on her long after bedtime. She was sitting on her bed silent and still. "Mama, " she said when I entered the room, "People never believe me when I tell them Liam's eight. Then I tell them he has autism but they don't understand. I just keep explaining it to them, but they never understand."
I told her that I know how hard it is; that I feel the same way. "But big people understand, " was her response. "Oh, no, Zoe," I said, "Big people don't always understand." I told her that if I was around, she could tell her friends to ask me. I told her there are a lot of kids who have the same issue and maybe she'd like to talk to them some time. Then I told her that if all that fails, she can simply say, "He's my brother and we love him just the way he is. Now do you want to play, or don't you?"
Thursday, July 10, 2008
High and Low
Today was one of those days. They don't happen very often lately, but when they do, I start going to the dark place.
Liam had an "observation" at a social skills program I have been trying to get him into for three years. It is funded by Regional Center and has had, at times, up to a one-year waiting list. There are two levels to this program. Level One is for "lower functioning" kids. Liam qualified for this one last year (based on his behavioral difficulties) and after the observation, I decided against sending him. The location was a long drive and, in my opinion, the program would not have benefited him. After all his progress over the last year, I asked to have him re-evaluated. I took him to the assessment last week and was told that yes, he seemed to have the necessary cognitive and verbal skills for this level. He did not comply with the standardized portion of the assessment, which I believe raised the red behavior flag for him.
I dropped him off at the program this afternoon after telling him it was a place for him to learn to make friends. I had already prepped him about what would happen and this is not his first foray into the world of learned social behavior. He was already pissed off because his sister couldn't go with him, but he seemed ok at the drop-off, joining the other kids with no apparent problems.
Forty minutes later, with a handful of items in my arms at Anthropologie, my cell phone rang. I knew without looking at the caller ID that it was the site manager of the program. "What's going on?" I asked. She told me she wasn't sure this was going to work out for Liam; he had become aggressive, grabbing one child's hand and kicking another. He began spitting when asked repeatedly to do a non-preferred activity. I agreed to come get him and hung up.
My knee-jerk reaction was "God damn it! I knew he'd fuck this up. He needs this more than anything, it's almost too late to get it for him, and now he's lost himself his last chance." I was close to tears as I drove over to the school.
I went into the classroom where Liam and the director were alone. The other kids were on the playground. I told Liam to get over to the playground and explained to the director that keeping him inside was actually a reward for him.
She told me they just can't have aggressive behavior. I said, "Are you telling me that in the history of this program, no child has ever kicked or hit another child?" "Not in Level Two," was her answer.
So we're here again. We're at this place AGAIN where people with autism are divided into levels of functioning. Teachers do it, professionals do it and worst of all, parents do it. "My child has autism," a parent will declare at some meeting and quickly follow it with, "High functioning." Thank God. They have to make sure no one imagines their kid wandering aimlessly and friendless around a playground, muttering to himself--like my kid does. When I tell people my son has autism, they often ask, "How um, how does, he . . um..." "How high functioning is he?" I offer, "It depends on the day. Just like my level of functioning."
When I got the full story from the director, who I'll call Mary, it became clear that Liam had done quite well for about 2/3 of the session. He had participated nicely in two group activities. When the activity changed to a guided conversation with three peers, he freaked out, sliding down the chair, kicking the table and eventually becoming aggressive and disruptive. I explained to Mary that we had seen this kind of behavior before from Liam. It was a fight or flight response to what Liam perceived as a threatening situation. I'm still not quite clear on why I had to explain that to an autism expert. I begged and pleaded with Mary, making the case that I had seen these same behaviors disappear with the right supports. His teacher had virtually eliminated them at school. Mary pointed at Liam on the playground, "Look, " she said, "He gravitates towards the adults. When the kids he knows tried to talk to him, he wouldn't respond." "I. Know." I answered, with what I consider great restraint. "That's why I brought him here." I eventually got her to reconsider, although I half believe she said what she needed to to get rid of me.
While I sat there talking to Mary, she was approached by a mom I know slightly and had last seen a year ago, when Liam was at his absolute worst point and I was trying to get him to succeed in a private social skills group, at which I was paying through the nose and doing all the work. "Great," I thought, about to laugh crazily, "She sees me and thinks 'Oh, God. It's that really fucked up mom with the really fucked up kid. I hope they don't let him in.'" It was demeaning to be seen in this situation yet again, literally begging for my kid to be included in a group for kids WITH AUTISM. I pointed out the frustration of this to Mary. I said, "You have to realize how hard it is for me to hear that my kid needs help so much that you can't help him." "I'm just trying to think about what's best for Liam, " she said, "I'm trying to figure out how we can make this work. I'll have to talk to my supervisor and get back to you." I won't be waiting by the phone for that call.
Instead, I called my amazing friend Lisa, who told me what I, on some level, already knew. Liam was set up to fail in this situation. What really steams my ass is that there is one kid in there who is not autistic. I know her family quite well. Her mom fought like hell for her to get the diagnosis early and she received every benefit from the state--including 40 hours per week of ABA. For whatever reason, she is now indistinguishable from her typical peers. Her school district even ended her IEP--she doesn't need it. But she is getting respite care, MediCal and now this social program that my son is about to be turned away from--all funded by taxpayers. I can't even see straight when I think about it.
The way this looks to me is that there is a group for the non-verbal and/or behaviorally challenged kids and one group for the highly verbal, socially appropriate kids, but nothing in between. Yet again, my son slips through the cracks.
What does it mean when a kid with autism is turned away from a program to help kids with autism because he acted autistic?
Liam had an "observation" at a social skills program I have been trying to get him into for three years. It is funded by Regional Center and has had, at times, up to a one-year waiting list. There are two levels to this program. Level One is for "lower functioning" kids. Liam qualified for this one last year (based on his behavioral difficulties) and after the observation, I decided against sending him. The location was a long drive and, in my opinion, the program would not have benefited him. After all his progress over the last year, I asked to have him re-evaluated. I took him to the assessment last week and was told that yes, he seemed to have the necessary cognitive and verbal skills for this level. He did not comply with the standardized portion of the assessment, which I believe raised the red behavior flag for him.
I dropped him off at the program this afternoon after telling him it was a place for him to learn to make friends. I had already prepped him about what would happen and this is not his first foray into the world of learned social behavior. He was already pissed off because his sister couldn't go with him, but he seemed ok at the drop-off, joining the other kids with no apparent problems.
Forty minutes later, with a handful of items in my arms at Anthropologie, my cell phone rang. I knew without looking at the caller ID that it was the site manager of the program. "What's going on?" I asked. She told me she wasn't sure this was going to work out for Liam; he had become aggressive, grabbing one child's hand and kicking another. He began spitting when asked repeatedly to do a non-preferred activity. I agreed to come get him and hung up.
My knee-jerk reaction was "God damn it! I knew he'd fuck this up. He needs this more than anything, it's almost too late to get it for him, and now he's lost himself his last chance." I was close to tears as I drove over to the school.
I went into the classroom where Liam and the director were alone. The other kids were on the playground. I told Liam to get over to the playground and explained to the director that keeping him inside was actually a reward for him.
She told me they just can't have aggressive behavior. I said, "Are you telling me that in the history of this program, no child has ever kicked or hit another child?" "Not in Level Two," was her answer.
So we're here again. We're at this place AGAIN where people with autism are divided into levels of functioning. Teachers do it, professionals do it and worst of all, parents do it. "My child has autism," a parent will declare at some meeting and quickly follow it with, "High functioning." Thank God. They have to make sure no one imagines their kid wandering aimlessly and friendless around a playground, muttering to himself--like my kid does. When I tell people my son has autism, they often ask, "How um, how does, he . . um..." "How high functioning is he?" I offer, "It depends on the day. Just like my level of functioning."
When I got the full story from the director, who I'll call Mary, it became clear that Liam had done quite well for about 2/3 of the session. He had participated nicely in two group activities. When the activity changed to a guided conversation with three peers, he freaked out, sliding down the chair, kicking the table and eventually becoming aggressive and disruptive. I explained to Mary that we had seen this kind of behavior before from Liam. It was a fight or flight response to what Liam perceived as a threatening situation. I'm still not quite clear on why I had to explain that to an autism expert. I begged and pleaded with Mary, making the case that I had seen these same behaviors disappear with the right supports. His teacher had virtually eliminated them at school. Mary pointed at Liam on the playground, "Look, " she said, "He gravitates towards the adults. When the kids he knows tried to talk to him, he wouldn't respond." "I. Know." I answered, with what I consider great restraint. "That's why I brought him here." I eventually got her to reconsider, although I half believe she said what she needed to to get rid of me.
While I sat there talking to Mary, she was approached by a mom I know slightly and had last seen a year ago, when Liam was at his absolute worst point and I was trying to get him to succeed in a private social skills group, at which I was paying through the nose and doing all the work. "Great," I thought, about to laugh crazily, "She sees me and thinks 'Oh, God. It's that really fucked up mom with the really fucked up kid. I hope they don't let him in.'" It was demeaning to be seen in this situation yet again, literally begging for my kid to be included in a group for kids WITH AUTISM. I pointed out the frustration of this to Mary. I said, "You have to realize how hard it is for me to hear that my kid needs help so much that you can't help him." "I'm just trying to think about what's best for Liam, " she said, "I'm trying to figure out how we can make this work. I'll have to talk to my supervisor and get back to you." I won't be waiting by the phone for that call.
Instead, I called my amazing friend Lisa, who told me what I, on some level, already knew. Liam was set up to fail in this situation. What really steams my ass is that there is one kid in there who is not autistic. I know her family quite well. Her mom fought like hell for her to get the diagnosis early and she received every benefit from the state--including 40 hours per week of ABA. For whatever reason, she is now indistinguishable from her typical peers. Her school district even ended her IEP--she doesn't need it. But she is getting respite care, MediCal and now this social program that my son is about to be turned away from--all funded by taxpayers. I can't even see straight when I think about it.
The way this looks to me is that there is a group for the non-verbal and/or behaviorally challenged kids and one group for the highly verbal, socially appropriate kids, but nothing in between. Yet again, my son slips through the cracks.
What does it mean when a kid with autism is turned away from a program to help kids with autism because he acted autistic?
Saturday, June 28, 2008
Up in the Community
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.
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.
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.
Tuesday, May 20, 2008
Contact
Last night we were at a dinner party with some friends from church--three families with kids, one without. I'm sure the child-free couple was overwhelmed. They are quiet and very sweet. The wife lost her mother to cancer a few months ago and I got a chance to speak with her about it. She is still grieving, but spoke so eloquently about taking care of her mother, how their faith helped them and what she's learned from the experience of losing a parent. She and her husband seemed very knowledgable about autism and have progressive attitudes about disability.
As the party was reaching its end, Liam came into the adult dining area. He approached this woman I had been talking to, looked right into her eyes, greeted her and softly stroked her shoulder. He held her hand and asked questions from his usual repetoire. She looked back at him and gave him her full attention without patronizing him. I can't explain exactly what was happening, but I sensed an exchange of empathy between two people, one of whom has a disability which profoundly impairs his communication and social interaction. Medical literature says empathy isn't possible for him, yet there it was--unless I imagined it. I don't think I did. Other adults (all young, cute women) have told me they've had similar interactions with Liam.
If my son didn't have autism:
I would have so much free time.
I wouldn't feel so damaged and guilty.
Life would be easier.
If my son didn't have autism, I wouldn't know what it feels like to witness a small miracle on an ordinary Monday night.
As the party was reaching its end, Liam came into the adult dining area. He approached this woman I had been talking to, looked right into her eyes, greeted her and softly stroked her shoulder. He held her hand and asked questions from his usual repetoire. She looked back at him and gave him her full attention without patronizing him. I can't explain exactly what was happening, but I sensed an exchange of empathy between two people, one of whom has a disability which profoundly impairs his communication and social interaction. Medical literature says empathy isn't possible for him, yet there it was--unless I imagined it. I don't think I did. Other adults (all young, cute women) have told me they've had similar interactions with Liam.
If my son didn't have autism:
I would have so much free time.
I wouldn't feel so damaged and guilty.
Life would be easier.
If my son didn't have autism, I wouldn't know what it feels like to witness a small miracle on an ordinary Monday night.
Wednesday, May 14, 2008
Happy IEP Day!
The IEP meeting is
I've been struggling all afternoon for an apt metaphor or analogy. I've come to the conclusion that until you've been through an IEP meeting for your child, you can't begin to understand the process and what it does to you as a parent. IEP stands for Individualized Education Plan and every student with a documented disabling condition is entitled to one. At least once a year, a team consisting of your child's teachers, therapists and at least one administrator meet with you, the parent.
At its best, the IEP meeting can be a lovefest, a meeting of minds and hearts who all have one common goal--your child's educational success. The teachers and therapists share cute stories about your child, happily reporting on his or her progress. You bring baked goods to the meeting and profusely thank the team members for their roles in your child's success. You all hug and congratulate each other on what a wonderful job you are doing to support your child.
At its worst, the IEP meeting is an emotional bloodbath. Tears are shed, accusations and insults are hurled across a conference table and legal action is threatened. You sit and listen for four hours to a litany of what is wrong with your child, specific details of all of your child's challenges, shortcomings and general offensiveness. By the end of the meeting, you are convinced that there never existed a more fucked-up kid in all of history and no one (in this room full of experts!) knows what to do about him. You have to drink a bottle of chardonnay that evening just to begin to process what you've endured. It will be days if not weeks before you can stop repeating the horrific scenario in your head--followed by delicious, violent fantasies about certain team members. You will neither be able to sleep nor eat normally for quite some time.
Not that I would know personally.
Of course, what I've just described are the two extremes. Most IEP meetings probably fall somewhere in between, but the majority of ours have been one of those two extremes.
I'm really happy to report that our meeting yesterday was the first type--the bunnies and puppies kind of IEP. Of course, we have high expectations for Liam and in order for him to meet those, he needs a lot of support. Some of the additional support we're requesting is currently unresolved. I can't be specific, but he is still not working at grade level in most academic areas.
On the positive side, Liam's team really gets him--they value his sense of humor, intelligence and personality. They shared wonderful stories of his life at school that we know very little about, because he rarely shares it with us.
I have two favorite stories from Liam's teacher. One is that he had come back from his mainstream classroom with a little rubber worm from a craft they were doing. Liam's teacher said, "Liam, I am doing a lesson right now, so you need to put the worm away and pay attention." Liam answered, "I really need a fidget right now." The beginnings of self-advocacy! He has learned that sometimes he needs a fidget to keep his hands from misbehaving and he used his words to explain it.
The second story was that he was carrying around a picture frame he had made me for Mother's Day and was so excited, saying, "My mom is gonna LOVE this frame." That one blows me away, because he never lets on that he cares about pleasing me.
It has taken a lot of hard work and pain to get our son in this good place, but we can never rest. No matter how well he does, I have to keep raising the bar for him. I just thank God that, for the moment, he is surrounded by people who believe in him just as much as I do.
I've been struggling all afternoon for an apt metaphor or analogy. I've come to the conclusion that until you've been through an IEP meeting for your child, you can't begin to understand the process and what it does to you as a parent. IEP stands for Individualized Education Plan and every student with a documented disabling condition is entitled to one. At least once a year, a team consisting of your child's teachers, therapists and at least one administrator meet with you, the parent.
At its best, the IEP meeting can be a lovefest, a meeting of minds and hearts who all have one common goal--your child's educational success. The teachers and therapists share cute stories about your child, happily reporting on his or her progress. You bring baked goods to the meeting and profusely thank the team members for their roles in your child's success. You all hug and congratulate each other on what a wonderful job you are doing to support your child.
At its worst, the IEP meeting is an emotional bloodbath. Tears are shed, accusations and insults are hurled across a conference table and legal action is threatened. You sit and listen for four hours to a litany of what is wrong with your child, specific details of all of your child's challenges, shortcomings and general offensiveness. By the end of the meeting, you are convinced that there never existed a more fucked-up kid in all of history and no one (in this room full of experts!) knows what to do about him. You have to drink a bottle of chardonnay that evening just to begin to process what you've endured. It will be days if not weeks before you can stop repeating the horrific scenario in your head--followed by delicious, violent fantasies about certain team members. You will neither be able to sleep nor eat normally for quite some time.
Not that I would know personally.
Of course, what I've just described are the two extremes. Most IEP meetings probably fall somewhere in between, but the majority of ours have been one of those two extremes.
I'm really happy to report that our meeting yesterday was the first type--the bunnies and puppies kind of IEP. Of course, we have high expectations for Liam and in order for him to meet those, he needs a lot of support. Some of the additional support we're requesting is currently unresolved. I can't be specific, but he is still not working at grade level in most academic areas.
On the positive side, Liam's team really gets him--they value his sense of humor, intelligence and personality. They shared wonderful stories of his life at school that we know very little about, because he rarely shares it with us.
I have two favorite stories from Liam's teacher. One is that he had come back from his mainstream classroom with a little rubber worm from a craft they were doing. Liam's teacher said, "Liam, I am doing a lesson right now, so you need to put the worm away and pay attention." Liam answered, "I really need a fidget right now." The beginnings of self-advocacy! He has learned that sometimes he needs a fidget to keep his hands from misbehaving and he used his words to explain it.
The second story was that he was carrying around a picture frame he had made me for Mother's Day and was so excited, saying, "My mom is gonna LOVE this frame." That one blows me away, because he never lets on that he cares about pleasing me.
It has taken a lot of hard work and pain to get our son in this good place, but we can never rest. No matter how well he does, I have to keep raising the bar for him. I just thank God that, for the moment, he is surrounded by people who believe in him just as much as I do.
Sunday, May 11, 2008
Liam Quote
Today I asked Liam why he doesn't like it when I occasionally show up at his school. He said, "Because you should be at home." Looks like my twenty plus years of feminism have finally paid off.
Saturday, May 10, 2008
Neurological TiVO
One not-so-endearing defining characteristic of autism is echolalia, or what I lovingly refer to as the broken record syndrome. (For those of you who never listened to a record, sometimes it would get scratched, causing the needle of the player to get stuck. The same word or phrase would repeat until you removed the needle.) Sometimes, that's what it's like to live with a person with autism.
Echolalia can take various forms. The person can repeat what you just said to them, they can replay parts of a movie, tv show, or real-life conversation, or something they just made up. For Liam, I think it happens for a variety of reasons. In a new or stressful situation, relying on echolalia or scripted language is a comfort to him. He doesn't know what to say, so he goes through his mental files (more about that later) and picks something that he thinks is appropriate. The other night, as he was lying in bed, I overheard him kind of babbling and then say very clearly "You assholes." I found Rob. "Did you hear what Liam just said?"I asked him.
"Yes," he answered, shaking his head in confusion.
"Well, do you know where he got that?"
"No."
"Do you ever say it in the car?"
"No."
"Oh. I do."
"Mystery solved."
I had read accounts from adults with autism who've said their brain is like a DVR. One day I asked Liam, "Can you watch movies in your head?" "Yeah," he said, "I have a button." I probed him more about this and was able to discover that he can't "watch" events from real life, only movies and he has to have seen them more than once. Often when he seems to be "out of it" or disconnected from our world, he is actually watching a movie on his brain TiVO. Repeating phrases from these movies is either compulsive or comforting to him.
Many times, Liam will perseverate on a topic or question. He has a repertoire of favorites. "What's for dinner?" is one. As many times as you can answer, he can keep asking, becoming increasingly agitated with each round. My sister and I used to joke about an autistic Elmo doll. Every time you pull the string, it says, "What's for dinner?"
One solution that's worked really well for us is using lists or pictures. For instance, one of his favorite topics to get stuck on is dogs--his current favorite obsession. He runs through a list of all the dog breeds he knows, asking if he's allergic to each one. I finally, out of sheer desperation, wrote a list of dog breeds with a "yes" or "no" next to each one. Now, when he starts asking me I tell him to get his list. He gets it, looks it over, and he's done. Hearing something is not as effective for him as seeing it.
The positive part of all this is that, like most people on the spectrum, Liam has an amazing memory. He's told me details from years ago that have shocked me in their clarity. The question is: how do we use this skill to help him? For instance, sometimes with Liam, it's better for him to feed him facts to memorize than try to give him the underlying theory. I'm starting to think that's the only way he's going to learn math. He's very good at spelling, because all he does is memorize the words. He's probably visualizing them in his head.
My hope is that more researchers focus on these skills to help people with autism learn and interact more effectively in a non-autistic world.
Echolalia can take various forms. The person can repeat what you just said to them, they can replay parts of a movie, tv show, or real-life conversation, or something they just made up. For Liam, I think it happens for a variety of reasons. In a new or stressful situation, relying on echolalia or scripted language is a comfort to him. He doesn't know what to say, so he goes through his mental files (more about that later) and picks something that he thinks is appropriate. The other night, as he was lying in bed, I overheard him kind of babbling and then say very clearly "You assholes." I found Rob. "Did you hear what Liam just said?"I asked him.
"Yes," he answered, shaking his head in confusion.
"Well, do you know where he got that?"
"No."
"Do you ever say it in the car?"
"No."
"Oh. I do."
"Mystery solved."
I had read accounts from adults with autism who've said their brain is like a DVR. One day I asked Liam, "Can you watch movies in your head?" "Yeah," he said, "I have a button." I probed him more about this and was able to discover that he can't "watch" events from real life, only movies and he has to have seen them more than once. Often when he seems to be "out of it" or disconnected from our world, he is actually watching a movie on his brain TiVO. Repeating phrases from these movies is either compulsive or comforting to him.
Many times, Liam will perseverate on a topic or question. He has a repertoire of favorites. "What's for dinner?" is one. As many times as you can answer, he can keep asking, becoming increasingly agitated with each round. My sister and I used to joke about an autistic Elmo doll. Every time you pull the string, it says, "What's for dinner?"
One solution that's worked really well for us is using lists or pictures. For instance, one of his favorite topics to get stuck on is dogs--his current favorite obsession. He runs through a list of all the dog breeds he knows, asking if he's allergic to each one. I finally, out of sheer desperation, wrote a list of dog breeds with a "yes" or "no" next to each one. Now, when he starts asking me I tell him to get his list. He gets it, looks it over, and he's done. Hearing something is not as effective for him as seeing it.
The positive part of all this is that, like most people on the spectrum, Liam has an amazing memory. He's told me details from years ago that have shocked me in their clarity. The question is: how do we use this skill to help him? For instance, sometimes with Liam, it's better for him to feed him facts to memorize than try to give him the underlying theory. I'm starting to think that's the only way he's going to learn math. He's very good at spelling, because all he does is memorize the words. He's probably visualizing them in his head.
My hope is that more researchers focus on these skills to help people with autism learn and interact more effectively in a non-autistic world.
Friday, May 09, 2008
Good Times
No, not the 70's sitcom starring the delightful Jimmy Walker, although it was AWESOME. We have had some good times of our own up in this piece lately. Liam has had a couple of amazing days.
On Wednesday I took him to a new social skills group run by our district behavioral therapist. She hadn't seen him since November, when we were deep in the shit. "This is a different child," she said to me when the group was over. On the way home I asked Zoe what they had done in the playgroup. "I want to let Liam tell you, " she said. That was unexpected. I had to prompt Liam several times, but he did tell me. He listed everything they had done and then told me all the changes he had noticed at his old school. We were having a normal conversation and I LOVED IT!
He's had good behavior at school and in the van, came home with tons of work he had completed and got 100% on his spelling test today. He's been compliant and happy at home.
These are the times that make everything worth it. On the other hand, these are the times I can't help remembering when he's rolling around on the floor with his pants down in public. I just want to shake him and say, "You aren't fooling me! I know what you can do--now DO IT!"
When these phases come around, I start scanning my recent memory for any changes in Liam's environment, diet or routine. I do the same thing when he's having a rough time and it's always futile. I'm starting to practice letting go of the ridiculous notion that I have control and just enjoy the good times. . .keepin' my head above water. . .and making my way when I can.
On Wednesday I took him to a new social skills group run by our district behavioral therapist. She hadn't seen him since November, when we were deep in the shit. "This is a different child," she said to me when the group was over. On the way home I asked Zoe what they had done in the playgroup. "I want to let Liam tell you, " she said. That was unexpected. I had to prompt Liam several times, but he did tell me. He listed everything they had done and then told me all the changes he had noticed at his old school. We were having a normal conversation and I LOVED IT!
He's had good behavior at school and in the van, came home with tons of work he had completed and got 100% on his spelling test today. He's been compliant and happy at home.
These are the times that make everything worth it. On the other hand, these are the times I can't help remembering when he's rolling around on the floor with his pants down in public. I just want to shake him and say, "You aren't fooling me! I know what you can do--now DO IT!"
When these phases come around, I start scanning my recent memory for any changes in Liam's environment, diet or routine. I do the same thing when he's having a rough time and it's always futile. I'm starting to practice letting go of the ridiculous notion that I have control and just enjoy the good times. . .keepin' my head above water. . .and making my way when I can.
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