We just got a notice from our son's teacher that she's preparing for his IEP meeting and wants to know what goals (social, academic, speech, OT, PT) we want to set for second grade. Frankly, I'm always baffled by these request. I sort of know what I would like to see but the specifics are really not in my specialty.
I'd like for him to be reading at grade level before the end of second grade (which is, I think, very realistic at this point and with this teacher), but beyond that, I'm not sure what sort of academic goals I would push. "At grade level" seems good to me, especially since this school district isn't slack in academics. I'd also want him spending more academic time in the typical classroom, as he becomes able to do so.
As for social, I want him stimming less at school, and I'd like that to be a measurable goal. Not sure how, but perhaps the teacher will have a better idea. But that is becoming a big barrier between him and his peers. They just don't know what to do when Jack starts spouting movie lines randomly.
OT, PT, and Speech are much more measurable. I want Jack's handwriting to be more controlled, his core strength to continue improving, and his receptive language and conversational reciprocity to improve. Also, I'd like the OT to work on sensory techniques to get Jack concentrating better in the typical classroom. She's had amazing success with my firstborn.
Then, there's the bus. Nick will be in fifth grade (the oldest grade on the bus), and I wonder if he would be enough of a supervisor for Jack to ride the regular bus. I am pretty sure one friend of mine thinks I'm being way too overprotective having Jack on the "special" bus as it is.
Anyway, to today's question: How specific are you with requests like this? Do you get detailed with goals, or do you feel comfortable with your teachers, intervention specialists, and therapists taking care of the specifics? I feel a very high level of trust with the school, but if I didn't, I'd be a lot more concerned.
Sunday, February 21, 2010
Tuesday, February 9, 2010
#30 A Question of Words
My other blog, Questioning my Intelligence, touches on the topic of autism today, and today's question stems from that essay.
Has anyone shared kind words with you? Sometimes, it seems that parents of children with autism only get dirty looks and criticism from others, but I know that there are people in the world who share kind words and smiles, too. Today, let's share those stories...either of kind words you've given to others or kind words someone has given to you.
One day about a year ago, a woman who works at our church preschool stopped me and shared a story. She had helped a friend by watching her children one morning. One of the children was autistic, and the experience helped her see just a bit of what parents of kids on the spectrum deal with day to day. Her friend had a hard time finding someone to watch her kids and really had appreciated the help.
The preschool mom knew Jack wasn't as severely affected as this other child, but she told me that if I ever needed someone to watch him, even on the spur of the moment, to call her.
I'd recently been dealing with the fact that a neighbor didn't want Jack in her house because he makes too much noise. At least, that's what she said. To have someone reach out to me with such a generous offer really helped assuage some of the annoyance and hurt I was feeling.
What kind words have you heard or given? What effect did they have? What keeps you from speaking kind words when you can?
Has anyone shared kind words with you? Sometimes, it seems that parents of children with autism only get dirty looks and criticism from others, but I know that there are people in the world who share kind words and smiles, too. Today, let's share those stories...either of kind words you've given to others or kind words someone has given to you.
One day about a year ago, a woman who works at our church preschool stopped me and shared a story. She had helped a friend by watching her children one morning. One of the children was autistic, and the experience helped her see just a bit of what parents of kids on the spectrum deal with day to day. Her friend had a hard time finding someone to watch her kids and really had appreciated the help.
The preschool mom knew Jack wasn't as severely affected as this other child, but she told me that if I ever needed someone to watch him, even on the spur of the moment, to call her.
I'd recently been dealing with the fact that a neighbor didn't want Jack in her house because he makes too much noise. At least, that's what she said. To have someone reach out to me with such a generous offer really helped assuage some of the annoyance and hurt I was feeling.
What kind words have you heard or given? What effect did they have? What keeps you from speaking kind words when you can?
Thursday, February 4, 2010
#29 Dealing with Ambiguity
Given the Lancet's recent retraction of Andrew Wakefield's article that started the whole MMR vaccines-cause-autism scare, I'm thinking again about how ambiguous the world of autism is. We don't have a good answer to a very important question: "What causes autism?" This sucks.
And of course without that answer, we have a tough time treating autism effectively. A treatment (whether it's biomedical or behavioral doesn't matter) seems to help one child but not another. A whole set of treatments helps one child but not another. For every so-called "recovered" child out there, there are uncounted numbers of children whose parents did the same treatments without the same happy results This sucks.
And of course without a clear protocol for treatment, two things happen. First, legitimate doctors and therapists promote treatments they genuinely believe might help. Their clinical work may turn up something useful...or not. That's clinical science. Second, snake-oil salesmen and unethical doctors who know their therapies don't work bleed families dry, drain retirement funds, and force some families into bankruptcy by selling false hope. This sucks, too.
And the fighting that results on message boards and in print between the different sides of the autism debates feeds on all this ambiguity, fostering factionalism, chaos, judgment, and hatred. Honest to goodness hatred. If you're a fan of biomedical/detox interventions, how many times have you rolled your eyes at someone promoting ABA? If you're a fan of behavioral therapies, how many times have you rolled your eyes at someone who is detoxing their autistic child using a special diet or chelation therapy? Come on, you know you have done this. Because without facts and good science and hard numbers, autism becomes more than a pervasive developmental disorder; it becomse a philosophy, or maybe a religion. It's about faith, not fact. And faith is a powerful thing.
There's a lot that sucks about all this. Unfortunately (like we need more unfortunate in this situation), we parents have to DO something to help our children. We have to make choices without good information, and we want to believe that the choices we make are right. There's too much at stake.
Because George and I are both pretty mainstream in our medical thinking, we decided over three years ago to use more mainstream treatments: speech, physical, and occupational therapies, and our school district's TEACCH-based special education classes. We also took the child psychologist's advice and put Jack in activities and classes with typical kids. He goes to camp and VBS in the summer (with a helper to keep him focused). He has inclusion time every day at school. And he's making really good progress. All his teachers and therapists and his doctor are happy to see how far he's come. Since what we're doing seems to be working, we're quite logically sticking with it. But there's always that little voice that says, "What if we're missing something?"
I really hate that little voice.
I'm sure doctors and therapists and educators face the same dilemma in their own actions, and I appreciate them weighing in on this question as well.
How do you make choices in this profoundly ambiguous situation? How certain are you when you do something that it will work? How do you decide if it's working or not? How do you know it's time to stop and move on to something else? In short, how do you deal with the ambiguity surrounding autism?
And of course without that answer, we have a tough time treating autism effectively. A treatment (whether it's biomedical or behavioral doesn't matter) seems to help one child but not another. A whole set of treatments helps one child but not another. For every so-called "recovered" child out there, there are uncounted numbers of children whose parents did the same treatments without the same happy results This sucks.
And of course without a clear protocol for treatment, two things happen. First, legitimate doctors and therapists promote treatments they genuinely believe might help. Their clinical work may turn up something useful...or not. That's clinical science. Second, snake-oil salesmen and unethical doctors who know their therapies don't work bleed families dry, drain retirement funds, and force some families into bankruptcy by selling false hope. This sucks, too.
And the fighting that results on message boards and in print between the different sides of the autism debates feeds on all this ambiguity, fostering factionalism, chaos, judgment, and hatred. Honest to goodness hatred. If you're a fan of biomedical/detox interventions, how many times have you rolled your eyes at someone promoting ABA? If you're a fan of behavioral therapies, how many times have you rolled your eyes at someone who is detoxing their autistic child using a special diet or chelation therapy? Come on, you know you have done this. Because without facts and good science and hard numbers, autism becomes more than a pervasive developmental disorder; it becomse a philosophy, or maybe a religion. It's about faith, not fact. And faith is a powerful thing.
There's a lot that sucks about all this. Unfortunately (like we need more unfortunate in this situation), we parents have to DO something to help our children. We have to make choices without good information, and we want to believe that the choices we make are right. There's too much at stake.
Because George and I are both pretty mainstream in our medical thinking, we decided over three years ago to use more mainstream treatments: speech, physical, and occupational therapies, and our school district's TEACCH-based special education classes. We also took the child psychologist's advice and put Jack in activities and classes with typical kids. He goes to camp and VBS in the summer (with a helper to keep him focused). He has inclusion time every day at school. And he's making really good progress. All his teachers and therapists and his doctor are happy to see how far he's come. Since what we're doing seems to be working, we're quite logically sticking with it. But there's always that little voice that says, "What if we're missing something?"
I really hate that little voice.
I'm sure doctors and therapists and educators face the same dilemma in their own actions, and I appreciate them weighing in on this question as well.
How do you make choices in this profoundly ambiguous situation? How certain are you when you do something that it will work? How do you decide if it's working or not? How do you know it's time to stop and move on to something else? In short, how do you deal with the ambiguity surrounding autism?
Saturday, January 30, 2010
#28 Eye Appointments
Two and a half years ago, we took Jack to the optometrist on our military base for his first eye exam. The doctor was able to get enough information to say that Jack's eyes were fine, but now we need to take him again, this time to a civilian provider. She's highly recommended by the schools and an acquaintance from church who is very calm and competent. I think Jack will be much more cooperative now, especially because he WANTS glasses, just like his friend at school. We went through this with our firstborn (who may now actually need glasses) two years ago when several of his friends got glasses.
Please share your experiences with optometry exams for kids on the spectrum. Eye exams are, of course, less invasive and have fewer weird sounds and smells and sensations than dental exams, but they're still definitely outside the routine.
Please share your experiences with optometry exams for kids on the spectrum. Eye exams are, of course, less invasive and have fewer weird sounds and smells and sensations than dental exams, but they're still definitely outside the routine.
Sunday, January 24, 2010
A Very Good Week
Good news is rolling in.
First, a few weeks ago, Jack's PT at Children's told me she thinks he'll be discontinued from physical therapy after his next evaluation, which will be in late February. She thinks he's closed the gap. Yippy!
Last Tuesday, Jack's SLP told me he is doing GREAT! He's still got a long way to go, but since we moved therapy to Tuesday from 5:00 on Friday evening, he's at least able to focus better.
Friday, Jack's TEACCH teacher sent a note home saying that Jack got ALL the first grade Dolch sight words right. The few he didn't know immediately, he sounded out until he got them. She was amazed and so am I!
Also on Friday, his private OT told me that she expects to reduce service to Jack, going from 30 minutes every week to 30 minutes every other week. He's made so much gap-closing progress since his last evaluation (which showed him as much as four years delayed in some areas of fine motor development) that weekly sessions are probably no longer indicated.
At home, we're seeing across-the-board improvements in speech, social skills, and sensory tolerance. He actually sat through Avatar yesterday! Well, he spent the final fight scene on the floor "taking a nap" with his eyes open, but still. This is huge improvement.
We're also seeing tons of stimming at the same time, which has been a pattern for him during periods of progress. Playing with cars and trains, making noises, and blurting out movie lines are all going strong, almost but not quite constant when he's not actively engaged.
But that's okay. I'll take what I'm getting and be hugely grateful for it!
Please share a bit of good news about your child/patient/student, even if you have to think hard about it. Because I really believe what gets us through this with our sanity intact is looking for the good news with an eagle eye and always keeping it in mind. It's the knot in the end of our rope when we need it to be!
First, a few weeks ago, Jack's PT at Children's told me she thinks he'll be discontinued from physical therapy after his next evaluation, which will be in late February. She thinks he's closed the gap. Yippy!
Last Tuesday, Jack's SLP told me he is doing GREAT! He's still got a long way to go, but since we moved therapy to Tuesday from 5:00 on Friday evening, he's at least able to focus better.
Friday, Jack's TEACCH teacher sent a note home saying that Jack got ALL the first grade Dolch sight words right. The few he didn't know immediately, he sounded out until he got them. She was amazed and so am I!
Also on Friday, his private OT told me that she expects to reduce service to Jack, going from 30 minutes every week to 30 minutes every other week. He's made so much gap-closing progress since his last evaluation (which showed him as much as four years delayed in some areas of fine motor development) that weekly sessions are probably no longer indicated.
At home, we're seeing across-the-board improvements in speech, social skills, and sensory tolerance. He actually sat through Avatar yesterday! Well, he spent the final fight scene on the floor "taking a nap" with his eyes open, but still. This is huge improvement.
We're also seeing tons of stimming at the same time, which has been a pattern for him during periods of progress. Playing with cars and trains, making noises, and blurting out movie lines are all going strong, almost but not quite constant when he's not actively engaged.
But that's okay. I'll take what I'm getting and be hugely grateful for it!
Please share a bit of good news about your child/patient/student, even if you have to think hard about it. Because I really believe what gets us through this with our sanity intact is looking for the good news with an eagle eye and always keeping it in mind. It's the knot in the end of our rope when we need it to be!
Saturday, January 16, 2010
#27 Imagination
People on the autism spectrum often show little imagination. In children, this means little or no make-believe play. Jack's play was very repetitive, with little imagination evident, so we put his big brother, Nick, in charge of teaching Jack how to use his imagination.
Nick has enough imagination for ten children and accepted his responsibility readily. It worked. While Jack can still be frightfully literal ("NO! I am NOT a cuddle-bear. I'm a boy!"), he is showing much more imagination these days. He suddenly decided he likes Pokemon now, and he's using a bunch of random stuffed animals to represent his Pokemon characters. Only one is an actual Pokemon.
This morning, he wanted to watch Men in Black Two, and went looking for his MIB glasses, which he could not find. I refused to help him look, telling him it was his responsibility to keep track of his own toys.
Since he couldn't find the MIB glasses, he's wearing is glow-in-the-dark Harry Potter glasses. They don't at all resemble the dark shades with black plastic frames he calls his MIB glasses. The Harry glasses are whitish without lenses. But he's happily substituting anyway. This may not seem huge to most people, but it does demonstrate a level of creativity and imagination Jack didn't demonstrate a year ago.
I LOVE progress!
What do you do to stimulate imagination in your child?
Nick has enough imagination for ten children and accepted his responsibility readily. It worked. While Jack can still be frightfully literal ("NO! I am NOT a cuddle-bear. I'm a boy!"), he is showing much more imagination these days. He suddenly decided he likes Pokemon now, and he's using a bunch of random stuffed animals to represent his Pokemon characters. Only one is an actual Pokemon.
This morning, he wanted to watch Men in Black Two, and went looking for his MIB glasses, which he could not find. I refused to help him look, telling him it was his responsibility to keep track of his own toys.
Since he couldn't find the MIB glasses, he's wearing is glow-in-the-dark Harry Potter glasses. They don't at all resemble the dark shades with black plastic frames he calls his MIB glasses. The Harry glasses are whitish without lenses. But he's happily substituting anyway. This may not seem huge to most people, but it does demonstrate a level of creativity and imagination Jack didn't demonstrate a year ago.
I LOVE progress!
What do you do to stimulate imagination in your child?
Friday, January 8, 2010
#26 Developmental Patterns
I'm reading several books at once right now (things are getting back to normal around here!) and starting to search out some new autism blogs. A common theme I've stumbled upon is how shockingly uneven development in autistic children can be. In some areas, a child may do quite well, even precociously, and in other areas, the same child may exhibit little to no age-appropriate progress.
Books like What to Expect the First Year and What to Expect the Toddler Years are pretty useless for helping parents identify autism. Last time I checked (a few years ago before I threw my copies in the trash), the information on autism was largely incorrect or misleading, and definitely focused on extreme cases...which are not the majority of cases. Since these were my developmental bibles for my children, no wonder I didn't see the warning flags for what they were.
Most developmental books I've read stress that normal children have uneven development. A friend had her baby daughter the day after I had my firstborn (Nick), and her daughter showed precocious gross motor development, climbing stairs at six months, walking at 8 months. But her fine motor skills were poor in the first year. Nick, on the other hand, walked at 12 months, but could handle and manipulate very small objects with ease, even stacking blocks as high as he could reach when What to Expect said he should be stacking four blocks. Both children were developing normally.
So where is the line between normal uneven development resulting from natural variations in brain growth and abnormal uneven development resulting from a Pervasive Developmental Disorder?
As parents of autistic children, we often ask the question, "Where is the line....?" And damn it, there's no answer. Or at least no clear-cut answer.
I knew something was wrong after Jack had been in preschool for 8 months and still didn't act at all like his peers. Hints came sooner, but my ignorance was astonishing. I had read dozens of early development books (even the scary parts about autism and fragile X and cerebral palsy, because I'm thorough that way). Had I known then what I know now, he would have had evaluation at least 8 months sooner than he did. But I just did not know. The right information just wasn't available to me in the books I'd read.
Some parents beat themselves up for delaying, and I don't see the point in that. How could I have known? Who would ever have thought my happy, healthy, giggly boy had autism? He wasn't Rain Man or a savant or sitting in a corner banging his head. There just weren't any dramatic signs like the books indicated there should be.
The books need to be rewritten.
Anyway, how did/do you--as a parent, relative, care-provider, teacher, therapist, or doctor--recognize that some invisible line had been crossed with your/a child?
Books like What to Expect the First Year and What to Expect the Toddler Years are pretty useless for helping parents identify autism. Last time I checked (a few years ago before I threw my copies in the trash), the information on autism was largely incorrect or misleading, and definitely focused on extreme cases...which are not the majority of cases. Since these were my developmental bibles for my children, no wonder I didn't see the warning flags for what they were.
Most developmental books I've read stress that normal children have uneven development. A friend had her baby daughter the day after I had my firstborn (Nick), and her daughter showed precocious gross motor development, climbing stairs at six months, walking at 8 months. But her fine motor skills were poor in the first year. Nick, on the other hand, walked at 12 months, but could handle and manipulate very small objects with ease, even stacking blocks as high as he could reach when What to Expect said he should be stacking four blocks. Both children were developing normally.
So where is the line between normal uneven development resulting from natural variations in brain growth and abnormal uneven development resulting from a Pervasive Developmental Disorder?
As parents of autistic children, we often ask the question, "Where is the line....?" And damn it, there's no answer. Or at least no clear-cut answer.
I knew something was wrong after Jack had been in preschool for 8 months and still didn't act at all like his peers. Hints came sooner, but my ignorance was astonishing. I had read dozens of early development books (even the scary parts about autism and fragile X and cerebral palsy, because I'm thorough that way). Had I known then what I know now, he would have had evaluation at least 8 months sooner than he did. But I just did not know. The right information just wasn't available to me in the books I'd read.
Some parents beat themselves up for delaying, and I don't see the point in that. How could I have known? Who would ever have thought my happy, healthy, giggly boy had autism? He wasn't Rain Man or a savant or sitting in a corner banging his head. There just weren't any dramatic signs like the books indicated there should be.
The books need to be rewritten.
Anyway, how did/do you--as a parent, relative, care-provider, teacher, therapist, or doctor--recognize that some invisible line had been crossed with your/a child?
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