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.
Tuesday, May 20, 2008
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.
Wednesday, May 07, 2008
Key to the Executive Function
Monday night I attended our North County chapter of ASA's monthly meeting. Dr. Sandy Shaw, director of AIM spoke about the executive function of the brain and how it is impaired in individuals with autism. Basically, executive functioning is the brain's ability to organize, prioritize and make decisions. In people with autism, there is so much "noise" in the brain that the connections that need to be made for this to happen, are often disrupted. I will share here Dr. Shaw's list of the symptoms that result from this executive dysfunction in the autistic brain:
Disorganization
Emotional dysregulation
Forgetfulness
Inattention
Cognitive Rigidity
Initiation or Inhibition Problems
Time Management
Sloppiness
Spaciness
(Notice that the first letters of each symptom spell "deficitss"--kind of a cool mneumonic device.)
Dr. Shaw asked us to raise our hands for each one of these if they applied to our kids. My hand never went down. This list encapsulates all of Liam's challenges academically and socially. It would make sense for me to despair that my son has every deficit on this list, but I didn't. Instead I was relieved to be reminded that my son's disability is at the core of all of his troubling behaviors. That does not mean that I for one second let him off the hook for making bad choices, but that I need to remember that he needs a LOT of help to make the right choices.
One of the hardest parts of parenting our kids with ASD is that we catch these glimpses of total lucidity, connection and competence. When that level of functioning falls for whatever reason, we feel betrayed. We feel that our child is fucking with us because we've seen them do better.
Dr. Shaw reminded me that sometimes Liam can do well, but sometimes he can't. When he can't, I've got to go back to this list and try to figure out exactly what kind of noise in his brain is interrupting his executive function. Is it the hum of a flourescent light in a grocery store? Is it his itchy skin? Is it the fact that his sister got a birthday party invitation the day before and he didn't? Is what I'm asking of him just too complex? Luckily, Liam is verbal enough to be able to help me with this process. Once we figure out what the problem is, we have to find tools to help him. Visuals, like schedules, lists and pictures, work very well for Liam, as they do for most people with autism. Dr. Shaw even mentioned some new ones I hadn't heard of: a decision tree and emotional thermometer. I can't wait to try those!
Something I kept thinking about during this presentation was a discussion I had with two of my friends a couple of months ago over cocktails. We were talking about how our kids' lives are so much more structured now than when we were kids. Every afternoon is filled with appointments, sports and other "enriching" activities. We wondered what had happened to unstructured time--time to sit around being bored. Boredom led to elaborate pretend games, social bonding with siblings and friends, and often to the library. What are we depriving our kids of when we don't leave room for down time? My friend Michelle mentioned a study she heard about--researchers compared some developmental milestones in kids of the same age thirty years ago and today. One of the important skills that was measured at a much lower level today was executive function. They attributed the loss to the lack of unstructured play.
How does autism factor into this? If you leave a kid with ASD to his own devices, he will most likely use the time to stim or play perseveratively--he's not getting the social or creative input that a typical child would. This leads me to wonder: if unstructured play time leads to the development of executive function in typical children, can we teach it to our ASD kids by prompting and engaging them in pretend play? Stanley Greenspan might have an opinion on this.
In the meantime, I will make a renewed attempt to engage Liam in pretend play and emotional bonding for at least a few minutes a day. It's a lot harder than making visual schedules and lists, but it might be more rewarding for both of us.
Disorganization
Emotional dysregulation
Forgetfulness
Inattention
Cognitive Rigidity
Initiation or Inhibition Problems
Time Management
Sloppiness
Spaciness
(Notice that the first letters of each symptom spell "deficitss"--kind of a cool mneumonic device.)
Dr. Shaw asked us to raise our hands for each one of these if they applied to our kids. My hand never went down. This list encapsulates all of Liam's challenges academically and socially. It would make sense for me to despair that my son has every deficit on this list, but I didn't. Instead I was relieved to be reminded that my son's disability is at the core of all of his troubling behaviors. That does not mean that I for one second let him off the hook for making bad choices, but that I need to remember that he needs a LOT of help to make the right choices.
One of the hardest parts of parenting our kids with ASD is that we catch these glimpses of total lucidity, connection and competence. When that level of functioning falls for whatever reason, we feel betrayed. We feel that our child is fucking with us because we've seen them do better.
Dr. Shaw reminded me that sometimes Liam can do well, but sometimes he can't. When he can't, I've got to go back to this list and try to figure out exactly what kind of noise in his brain is interrupting his executive function. Is it the hum of a flourescent light in a grocery store? Is it his itchy skin? Is it the fact that his sister got a birthday party invitation the day before and he didn't? Is what I'm asking of him just too complex? Luckily, Liam is verbal enough to be able to help me with this process. Once we figure out what the problem is, we have to find tools to help him. Visuals, like schedules, lists and pictures, work very well for Liam, as they do for most people with autism. Dr. Shaw even mentioned some new ones I hadn't heard of: a decision tree and emotional thermometer. I can't wait to try those!
Something I kept thinking about during this presentation was a discussion I had with two of my friends a couple of months ago over cocktails. We were talking about how our kids' lives are so much more structured now than when we were kids. Every afternoon is filled with appointments, sports and other "enriching" activities. We wondered what had happened to unstructured time--time to sit around being bored. Boredom led to elaborate pretend games, social bonding with siblings and friends, and often to the library. What are we depriving our kids of when we don't leave room for down time? My friend Michelle mentioned a study she heard about--researchers compared some developmental milestones in kids of the same age thirty years ago and today. One of the important skills that was measured at a much lower level today was executive function. They attributed the loss to the lack of unstructured play.
How does autism factor into this? If you leave a kid with ASD to his own devices, he will most likely use the time to stim or play perseveratively--he's not getting the social or creative input that a typical child would. This leads me to wonder: if unstructured play time leads to the development of executive function in typical children, can we teach it to our ASD kids by prompting and engaging them in pretend play? Stanley Greenspan might have an opinion on this.
In the meantime, I will make a renewed attempt to engage Liam in pretend play and emotional bonding for at least a few minutes a day. It's a lot harder than making visual schedules and lists, but it might be more rewarding for both of us.
Monday, May 05, 2008
Angels and Freaks
Yesterday I was chatting with an aquaintance at church. He was asking me about Liam and autism in general; he confessed to knowing very little about the disorder, so I gave him the basic rundown. This gentleman doesn't seem overly outgoing or given to excessive praise, but he said the following to me: "I watch you with Liam and I think you are an angel." I get variations on this theme a lot. People will say, "You are so good with him" or some such accolade. It makes me uncomfortable every time. It's not because I can't take a compliment; I thrive on praise and savor it like stolen candy. I still carry around a letter my mentor wrote to me in grad school 12 years ago. I check my ratings on ratemyprofessors.com way more often than is professionally necessary. I can absolutely take a compliment. I am uncomfortable about this particular compliment because it's undeserved and saying so would make me sound. . . like I can't take a compliment.
Let me try to discern where this praise comes from. I'm going to put myself in the position I was in before I had Liam--before I was "in the life". You see a mother with a disabled child. The child is disruptive, non-compliant and difficult--generally causing a scene. The mother is loving and patient. You think to yourself: how does she do it? I could never do it and ultimately, Thank God I don't have to do it.
Here's what you don't see: the dozens of hours of behavior modification training the mother has gone through, the stacks of books she has read about her child's disability, the hundreds of hours spent in meetings with therapists, doctors, teachers and other professionals. You definitely don't see her lose her shit and scream at her child after a particularly horrific episode, "You wonder why you don't have any friends? It's because you act like a freak, that's why!" You don't see inside the mother's heart in some dark, dark hour when she wonders if there will come a time when she can no longer care for this child in her home. You think these mothers are angels or saints. I thought that too. You think they were chosen because they could handle it. The truth is that sometimes they can't handle it. But that usually happens when you're not looking.
Another mom said to me once, "I watch you with Liam and you're just so patient with him. I know I could never do that!" This insight was particularly stinging. It was clear that she pitied me. She must imagine that parenting Liam is some thankless job I'm stuck with for the rest of my life. She hasn't known the joy, the delight and the miracle that Liam can be. I don't think she'd understand me if I tried to describe those moments. Instead, I answered, "Yes, you could do it. If it was your child, you wouldn't have a choice."
Let me try to discern where this praise comes from. I'm going to put myself in the position I was in before I had Liam--before I was "in the life". You see a mother with a disabled child. The child is disruptive, non-compliant and difficult--generally causing a scene. The mother is loving and patient. You think to yourself: how does she do it? I could never do it and ultimately, Thank God I don't have to do it.
Here's what you don't see: the dozens of hours of behavior modification training the mother has gone through, the stacks of books she has read about her child's disability, the hundreds of hours spent in meetings with therapists, doctors, teachers and other professionals. You definitely don't see her lose her shit and scream at her child after a particularly horrific episode, "You wonder why you don't have any friends? It's because you act like a freak, that's why!" You don't see inside the mother's heart in some dark, dark hour when she wonders if there will come a time when she can no longer care for this child in her home. You think these mothers are angels or saints. I thought that too. You think they were chosen because they could handle it. The truth is that sometimes they can't handle it. But that usually happens when you're not looking.
Another mom said to me once, "I watch you with Liam and you're just so patient with him. I know I could never do that!" This insight was particularly stinging. It was clear that she pitied me. She must imagine that parenting Liam is some thankless job I'm stuck with for the rest of my life. She hasn't known the joy, the delight and the miracle that Liam can be. I don't think she'd understand me if I tried to describe those moments. Instead, I answered, "Yes, you could do it. If it was your child, you wouldn't have a choice."
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