Conversation tried
And tried and tried and tried and
Why do they walk away?
I think social thinking and social skills should be incorporated into the general curriculum of every school, at every level. I think even college students need to be required to take social skills classes and training. If people really gained these skills, really got a chance to think them out and practice them before being tossed out there to flounder, the world would just be a better place, all-around.
Anti-bullying programs are a joke. They don't work. Kids seem to regard them as some sort of irritating adult thing, like South Park's Sexual Harassment Panda. In the abstract, people know you don't beat on other people and make fun of them. On the ground, the lines are apparently not so clear. The idea of treating others the way we want to be treated just completely goes over most people's heads. That other people have feelings to hurt, that it might be a bad idea to insult people even when they are not standing in front of you, that being included means being inclusive- these things are apparently harder to learn than they appear.
Besides that, kids who are already serious bullies don't care about anti-bullying programs. They aren't the ones really being targeted. They need a whole different kind of support- someone needs to take them aside and figure out the root of the problem, and address it. Now. Denying that bullying exists in your school, and that no one knows who the bullies are, suggests you might need that kind of intervention yourself. Turning a blind eye is a type of abuse that absolutely requires intervention.
The over-use of the term "bully" isn't helping, either. Is turning a blind eye "a form of bullying"? Perhaps. But let's call it something with more specific implications: abuse. It may seem a passive thing, but really, anyone who has ever worked with people on any level knows that bullying- the direct pressuring of one person trying to exert power over another- happens, and you have to watch for it. If you teach kids (and I mean really teach them, not just note it and move on) early what the pitfalls are that result in bullying, they can at least watch for the traps. When you teach others not only how to act social, but to actually think about social interaction, to think about the other person as well as being self-aware- that gives people the tools to not only avoid the pitfalls, but know what to do if they fall in to one, before it becomes a serious situation.
All too often, people on the spectrum are criticized for "lacking social skills." If we actually thought about social skills and were socially aware and socially thinking, we might realize that it isn't just "an autism thing." Today, I watched Joey in the park. Joey loves babies and little kids, and he wandered about much of the time, trying to interact with families and small kids, play with the babies and get involved with the little ones. No, he's not good at opening interactions, but that's no excuse to hurt his feelings- especially if you an adult, since he is so clearly a child. I could tell you a lot about each and every adult out there in about five seconds, watching their faces as Joey walked up to them and tried to open conversation. And tried. And tried again.
Some of the adults smiled and joined in. Some of them wrinkled their noses and ignored him. A couple families actually picked up their kids and walked away, only to return when he had moved to another part of the park. A group of college kids actually remarked, sitting right next to me, "Someone ought to take that retarded kid home. He's making everybody uncomfortable." You can imagine their faces when Joey came over to me, and we did some signing and playing together, then I gave him a kiss before he returned to his attempts at play. I didn't look. The few seconds of silence before they wandered away was deafening.
This is what passes as social skills?
Imagine how different middle school would be for everyone if social thinking was part and parcel of the curriculum. If kids on the brink of huge social changes and questioning were given the tools to be both self-aware and to understand how their own actions and feelings might affect others, they might have the tools to navigate the social world they are creating. They might understand the real value of diversity, and find the challenge of inclusion far less daunting. With safe, controlled situations to practice in, kids might find going out and making realities a familiar thing, and do it with real confidence and strength in experience, instead of trying to strike out with no idea how to do it.
It's amazing how much easier it is to do something when you have an instruction manual and can practice a bit before going out and doing it "for reals." We know we need to practice skills to get them right. Why do we think we can just go out and use social skills without practice?
Friday, April 05, 2013
Thursday, April 04, 2013
Autism Understanding: Day 4
If you sit silent
You can almost hear him think
The world swirls through him.
Joey has discovered our back yard. This is a very exciting thing. He has taken to getting up whenever he feels like it, putting on his shoes, and acting out his favorite games and movies outside. Sometimes he even adds to them, pretending to be the characters, acting out what they might do or say or think. Joey is very good at imitating voices. He is an amazing Mr. Waternoose.
What I especially like is the getting up and moving part. Moving really helps Joey's brain make connections and think things out. I am convinced that much of the bolting behavior we see is actually Joey trying to get away to take a walk, to process what is happening around him and to him; to escape the immediate melee and make sense of it. Figuring out that he can get up and do this at home is, I believe, a huge step forward for him.
I also like that he "gets" the rule that he is to stay in the back yard. We are constantly having to put up doors and locks and obstacles, lest his frustration overwhelm him and he bolts. It feels like we are building a prison around him; I'm betting he feels it, too. Joey doesn't have firm enough control of language as a communication tool to be able to express himself to, say, a police officer. During his longest bolt, he made it to the park, talked to some of the folks there, and came home; but that is not the same as someone in a uniform stopping you and asking you where you live and if you are OK. When the anxiety goes up, the ability to speak plummets for him- usually increasing frustration and anxiety in an out-of-control vortex of screaming abyss. Being able to have him go into the back yard and stay there, without having to put up a six-foot solid gate (there is a locked gate, but he could, with a little effort, climb it) to pen him is something I think may be important. To be able to mark and understand boundaries, without having to put up physical barriers to understand them- that is something to learn, a lesson about personal and public space. It is important to know the boundaries of "home."
There are boys in our neighborhood who roam. Awesome Neighbor was roaming by the time he was nine- often to our house, where we understood and accepted him, and didn't mind a little bouncing. There was no doubt that when the call came, he would turn for home. One of our current roamers- all in middle school- is an autistic kid from around the corner. It is a tug at heart and mind to think of Joey in his locked yard, when other boys seem able to roam free, with little concern from their parents that they will, when evening comes, turn their faces toward home. It is a hard line to walk, between trust and safety.
It is a line that I know one day I will have to step over. He will walk down the street, and I will have to trust that when the sun goes down or the text goes through, he will turn his feet towards home. And he might say he's going one place, and actually go another. He may decide to turn his feet another way. It is the risk every parent takes, that first time they let their child out the door and out of their sight. Risk and trust. Risk and faith.
If you have never seen that panic in Joey's eye, that rise of color to his face, that bolting trot, it may be hard to understand how fine the line is, how delicate the knife edge. One day, he will be ready. But not this day.
This day, we are taking the first steps along that line. He gets up, and slips out the back door. And I trust that when he feels done playing, instead of going over that gate, he will come back in that door.
We all have to start somewhere.
You can almost hear him think
The world swirls through him.
Joey has discovered our back yard. This is a very exciting thing. He has taken to getting up whenever he feels like it, putting on his shoes, and acting out his favorite games and movies outside. Sometimes he even adds to them, pretending to be the characters, acting out what they might do or say or think. Joey is very good at imitating voices. He is an amazing Mr. Waternoose.
What I especially like is the getting up and moving part. Moving really helps Joey's brain make connections and think things out. I am convinced that much of the bolting behavior we see is actually Joey trying to get away to take a walk, to process what is happening around him and to him; to escape the immediate melee and make sense of it. Figuring out that he can get up and do this at home is, I believe, a huge step forward for him.
I also like that he "gets" the rule that he is to stay in the back yard. We are constantly having to put up doors and locks and obstacles, lest his frustration overwhelm him and he bolts. It feels like we are building a prison around him; I'm betting he feels it, too. Joey doesn't have firm enough control of language as a communication tool to be able to express himself to, say, a police officer. During his longest bolt, he made it to the park, talked to some of the folks there, and came home; but that is not the same as someone in a uniform stopping you and asking you where you live and if you are OK. When the anxiety goes up, the ability to speak plummets for him- usually increasing frustration and anxiety in an out-of-control vortex of screaming abyss. Being able to have him go into the back yard and stay there, without having to put up a six-foot solid gate (there is a locked gate, but he could, with a little effort, climb it) to pen him is something I think may be important. To be able to mark and understand boundaries, without having to put up physical barriers to understand them- that is something to learn, a lesson about personal and public space. It is important to know the boundaries of "home."
There are boys in our neighborhood who roam. Awesome Neighbor was roaming by the time he was nine- often to our house, where we understood and accepted him, and didn't mind a little bouncing. There was no doubt that when the call came, he would turn for home. One of our current roamers- all in middle school- is an autistic kid from around the corner. It is a tug at heart and mind to think of Joey in his locked yard, when other boys seem able to roam free, with little concern from their parents that they will, when evening comes, turn their faces toward home. It is a hard line to walk, between trust and safety.
It is a line that I know one day I will have to step over. He will walk down the street, and I will have to trust that when the sun goes down or the text goes through, he will turn his feet towards home. And he might say he's going one place, and actually go another. He may decide to turn his feet another way. It is the risk every parent takes, that first time they let their child out the door and out of their sight. Risk and trust. Risk and faith.
If you have never seen that panic in Joey's eye, that rise of color to his face, that bolting trot, it may be hard to understand how fine the line is, how delicate the knife edge. One day, he will be ready. But not this day.
This day, we are taking the first steps along that line. He gets up, and slips out the back door. And I trust that when he feels done playing, instead of going over that gate, he will come back in that door.
We all have to start somewhere.
Wednesday, April 03, 2013
Autism Understanding: Day 3
I can hear him scream
My heart shatters, my feet run
Please help keep him safe.
Spring break sucks.
I love my sons, and I love having them home. I love having them to cuddle late into the morning. I love listening to them play, and having their wild feet race through the house.
What I don't love is Joey getting completely overwhelmed by the total schedule upheaval, and melting down.
Trying to mitigate the situation, I usually stat our day by printing out a schedule for the day, which Joey is permitted to carry with him. However, there is absolutely no way that schedule can be anything remotely like, "7:15, Get on the bus. 8:05, Arrive at school. 9 am, math class..." See, they have a break, but like so many other working parents, I do not. On top of that, I don't do regular work. I can't just drop them off at a daycare or other structured situation, or even a corner of an office. I work 2-3 jobs every day, with varying schedule from day-to-day; so I can't even set a schedule today and have Joey understand that will be the schedule tomorrow, because it won't be.
This piecework income production does very well in working around therapy appointments and bus schedules, but isn't very conducive to consistency when Joey is home and needs a regular schedule. We can't just stay at home and be quiet and still, as we can on winter break, when most of my jobs are also on hiatus. Running about to Grandma's is even a bit of a strain on his nerves, as the only solid warning he gets to anticipate when he will be going is basically that piece of paper he wakes up to, even when I tell him the day before and go over the schedule as best I can. Often, i don't even know where I will be until the morning. Sudden grocery stops and Walmart runs are simple when the boys are in school; these things are require huge amounts of planning and prep when they are home on break.
I also can't say he didn't need the break from work; to just keep sending him to school right now would also not really work. There have been far too many changes there, and his anxiety levels are through the roof. The sudden-para-switcheroo has also lead to a change his academic schedule, which has him thoroughly unbalanced. Now he's not only overwhelmed at home, school is also a mass of confusion and surprises.
I would love nothing better than to spend a day at home, letting both boys breathe and play in the yard as they felt the urge to jump around. I'd like to give Joey a day when he felt some semblance of control over his own life and his own time. But that just doesn't happen on these little-but-just-too-long breaks, such as Spring Break.
My heart shatters, my feet run
Please help keep him safe.
Spring break sucks.
I love my sons, and I love having them home. I love having them to cuddle late into the morning. I love listening to them play, and having their wild feet race through the house.
What I don't love is Joey getting completely overwhelmed by the total schedule upheaval, and melting down.
Trying to mitigate the situation, I usually stat our day by printing out a schedule for the day, which Joey is permitted to carry with him. However, there is absolutely no way that schedule can be anything remotely like, "7:15, Get on the bus. 8:05, Arrive at school. 9 am, math class..." See, they have a break, but like so many other working parents, I do not. On top of that, I don't do regular work. I can't just drop them off at a daycare or other structured situation, or even a corner of an office. I work 2-3 jobs every day, with varying schedule from day-to-day; so I can't even set a schedule today and have Joey understand that will be the schedule tomorrow, because it won't be.
This piecework income production does very well in working around therapy appointments and bus schedules, but isn't very conducive to consistency when Joey is home and needs a regular schedule. We can't just stay at home and be quiet and still, as we can on winter break, when most of my jobs are also on hiatus. Running about to Grandma's is even a bit of a strain on his nerves, as the only solid warning he gets to anticipate when he will be going is basically that piece of paper he wakes up to, even when I tell him the day before and go over the schedule as best I can. Often, i don't even know where I will be until the morning. Sudden grocery stops and Walmart runs are simple when the boys are in school; these things are require huge amounts of planning and prep when they are home on break.
I also can't say he didn't need the break from work; to just keep sending him to school right now would also not really work. There have been far too many changes there, and his anxiety levels are through the roof. The sudden-para-switcheroo has also lead to a change his academic schedule, which has him thoroughly unbalanced. Now he's not only overwhelmed at home, school is also a mass of confusion and surprises.
I would love nothing better than to spend a day at home, letting both boys breathe and play in the yard as they felt the urge to jump around. I'd like to give Joey a day when he felt some semblance of control over his own life and his own time. But that just doesn't happen on these little-but-just-too-long breaks, such as Spring Break.
Tuesday, April 02, 2013
Autism Understanding: Day Two
Potato chips are
Duck food. Food for ducks. Duck FOOD.
They will make YOU sick!
Processing is something Joey often does "loud and proud." He repeats phrases and words, over and over again, rolling them over in mind and mouth and ear. He watches how you react to them. He giggles if he thinks they are funny. If you say something mean to him, or in a tone he doesn't like, I will hear it for weeks- exactly as you said it.
This is advanced echolalia.
Often when new caretakers and therapists meet Joey, they ask why he is not diagnosed with Asperger's Syndrome. I believe this question is rooted in a basic ignorance of autism, and of Asperger's Syndrome. As is not just "an autistic who speaks." Not all kids with "classic" autism are non-verbal. Being verbal doesn't immediately relegate you to the title "Pervasive Developmental Disorder- Not Otherwise Specified" (PDD-NOS). These labels aren't about functioning or not functioning. They are often connected to how and why these kids learn about communication and its uses, what ways they try to socialize and communicate, and yes, how successful they are in various ways of coping with the world around them. The blurring between labels is why the new DSM is going to umbrella various terms under "autism spectrum" instead of keeping them as separate diagnoses.
The hallmark of Asperger's Syndrome is the development of language that is recognizable as "in the normal range" by neurotypical benchmarks. Joey does not have this. Yes, he speaks. We have worked very hard to help him learn to communicate in a world dominated by people who are not autistic. He has become pretty decent at using the tool to communicate. But his speech is not "normal." His ways of considering the world around him and processing it are all his own. And often, it is rooted in a connection between words, phrases, and emotions, which he can then piece together into recognizable language when needful. Whereas Temple Grandin talks about "thinking in pictures", I think Joey on many levels "thinks in phrases." When he is presented with a communication opportunity, he spins through words and phrases he's heard before, how they were used, what labels to put into them. He picks the ones he thinks he will be useful, stitches them together, and out they come.
Every time Joey speaks, he takes a risk. Will these be the words I needed to respond? Is this was they were expecting?
It makes answering questions a horrible, awesome, overwhelming task. First, you have to process the question itself. What are these words saying? Do we have similar words we can process and are "on file"? What kind of response is expected? Do we have similar situations we can use to help? Then we have to process out an answer- which may be unique in context and wording. We have only a few familiar words in the question to attach meaning, and to find in our "files" matching expected and appropriate responses. It doesn't matter if he understands what he just read, or saw, or heard. The question is a separate processing task, unrelated, isolated, and with so much going in that it exponentially increases the risk and energy to respond.
Speaking requires a great deal of energy. You can imagine what a test might do to Joey. How can you evaluate someone's understanding of concepts when it is all they can do to process the evaluation tool itself?
Yet Joey knows what is expected. So he keeping playing with the words, the phrases, bouncing them about his mind, his mouth, his ear. He keeps trying, and trying, and trying.
And then we wonder why he's so anxious and frustrated all the time. Silly us.
Duck food. Food for ducks. Duck FOOD.
They will make YOU sick!
Processing is something Joey often does "loud and proud." He repeats phrases and words, over and over again, rolling them over in mind and mouth and ear. He watches how you react to them. He giggles if he thinks they are funny. If you say something mean to him, or in a tone he doesn't like, I will hear it for weeks- exactly as you said it.
This is advanced echolalia.
Often when new caretakers and therapists meet Joey, they ask why he is not diagnosed with Asperger's Syndrome. I believe this question is rooted in a basic ignorance of autism, and of Asperger's Syndrome. As is not just "an autistic who speaks." Not all kids with "classic" autism are non-verbal. Being verbal doesn't immediately relegate you to the title "Pervasive Developmental Disorder- Not Otherwise Specified" (PDD-NOS). These labels aren't about functioning or not functioning. They are often connected to how and why these kids learn about communication and its uses, what ways they try to socialize and communicate, and yes, how successful they are in various ways of coping with the world around them. The blurring between labels is why the new DSM is going to umbrella various terms under "autism spectrum" instead of keeping them as separate diagnoses.
The hallmark of Asperger's Syndrome is the development of language that is recognizable as "in the normal range" by neurotypical benchmarks. Joey does not have this. Yes, he speaks. We have worked very hard to help him learn to communicate in a world dominated by people who are not autistic. He has become pretty decent at using the tool to communicate. But his speech is not "normal." His ways of considering the world around him and processing it are all his own. And often, it is rooted in a connection between words, phrases, and emotions, which he can then piece together into recognizable language when needful. Whereas Temple Grandin talks about "thinking in pictures", I think Joey on many levels "thinks in phrases." When he is presented with a communication opportunity, he spins through words and phrases he's heard before, how they were used, what labels to put into them. He picks the ones he thinks he will be useful, stitches them together, and out they come.
Every time Joey speaks, he takes a risk. Will these be the words I needed to respond? Is this was they were expecting?
It makes answering questions a horrible, awesome, overwhelming task. First, you have to process the question itself. What are these words saying? Do we have similar words we can process and are "on file"? What kind of response is expected? Do we have similar situations we can use to help? Then we have to process out an answer- which may be unique in context and wording. We have only a few familiar words in the question to attach meaning, and to find in our "files" matching expected and appropriate responses. It doesn't matter if he understands what he just read, or saw, or heard. The question is a separate processing task, unrelated, isolated, and with so much going in that it exponentially increases the risk and energy to respond.
Speaking requires a great deal of energy. You can imagine what a test might do to Joey. How can you evaluate someone's understanding of concepts when it is all they can do to process the evaluation tool itself?
Yet Joey knows what is expected. So he keeping playing with the words, the phrases, bouncing them about his mind, his mouth, his ear. He keeps trying, and trying, and trying.
And then we wonder why he's so anxious and frustrated all the time. Silly us.
Monday, April 01, 2013
Autism Understanding: Day One
He pads in to me
Leans his head on my tummy
Whispers, "I love you."
The first thing you should know about my son is he is one of the most unique people I have ever met. If you know me, you know what a huge thing I am saying. Absolutely, positively unique; no one sees the world quite the way he does, and the intensity with which he loves people around him can sometimes be overwhelming. He likes thing in his own way, in his own time.
And once you grasp the absolutely uniqueness of everyone around you, and especially Joey, I think you will find the world is a fascinating, intense place.
Joey has a way of walking right up to people and just starting talking, as if he's known them all his life. It takes people by surprise, unexpected and often disconcerting to strangers. However, it is very rare for them not to smile, if they give him a minute, listen to what he has to say, listen to the love and friendship and acceptance he is offering. I can tell a lot about a person in how they react to Joey; the first three seconds when he walks up and accepts them as people, just as they are. Will they repay the compliment, the kindness, the love, or not? It often turns out to be all I need to know.
As we enter April, I ask you to move beyond just "Autism awareness" and into "Autism understanding." Take a minute and listen to what Joey has to offer you. You might find that there really are people here with the one reason of loving everyone, and giving each and every one of us a chance to be ourselves.
Leans his head on my tummy
Whispers, "I love you."
The first thing you should know about my son is he is one of the most unique people I have ever met. If you know me, you know what a huge thing I am saying. Absolutely, positively unique; no one sees the world quite the way he does, and the intensity with which he loves people around him can sometimes be overwhelming. He likes thing in his own way, in his own time.
And once you grasp the absolutely uniqueness of everyone around you, and especially Joey, I think you will find the world is a fascinating, intense place.
Joey has a way of walking right up to people and just starting talking, as if he's known them all his life. It takes people by surprise, unexpected and often disconcerting to strangers. However, it is very rare for them not to smile, if they give him a minute, listen to what he has to say, listen to the love and friendship and acceptance he is offering. I can tell a lot about a person in how they react to Joey; the first three seconds when he walks up and accepts them as people, just as they are. Will they repay the compliment, the kindness, the love, or not? It often turns out to be all I need to know.
As we enter April, I ask you to move beyond just "Autism awareness" and into "Autism understanding." Take a minute and listen to what Joey has to offer you. You might find that there really are people here with the one reason of loving everyone, and giving each and every one of us a chance to be ourselves.
Friday, March 29, 2013
The Blues
Autism Awareness Month is upon us, just on that far side of Easter. With comes the Light It Up Blue campaign, bringing awareness to anybody who is actually paying attention or cares even the slightest bit about why your porch light is blue all April, and no other time.
I have noticed that the autistic adult community is a little torn about Light It Up Blue. There is a gambit of feeling towards it, from antipathy to appreciation. I can't please everybody- nobody can. But will I light it up blue?
Yes, I will.
Changing my light bulb actually started conversation in our neighborhood, especially since I was not alone in doing it. I think some of our neighbors were genuinely surprised to see so many porches go blue for April. They wanted to know what was up. And once you get someone to talk, you can get the reins of that conversation and start some folks thinking.
For me, it isn't about Autism Awareness. It is about Autism Understanding.
Many folks in our town know Joey, and they know he is autistic. Few know what that really means. They are surprised to find he loves to be around people, and loves to talk to people. They are surprised to find he is intelligent and observant. He laughs, he chats, he pretends. Part of the surprise is how many "autism awareness" campaigns teach people to look for kids who are aloof, withdrawn, or even violent. Kids who burst into meltdowns at the drop of a hat, who make weird noises, who flap their hands, who don't talk at all- those are the kids many of these campaigns push into the public eye. Any of these things can apply to a person with autism. Or not.
Seizing a campaign like Light It Up Blue and using it as a tool is an important way to educate the majority of folks out there, who have no clue what it means to be autistic. The majority of folks who have no clue even what it means to care about or be a person with special needs or disabilities. I always go back and think, what were my attitudes and opinions before I knew Joey? How do I get people around us to understand? How do you remove ignorance (the only real was to remove fear)?
If my blue light bulb makes even one person stop and think, stop and ask, stop and understand, then that is one more than had done that yesterday. It's one step beyond just awareness. It's one step closer to understanding being the norm.
I have noticed that the autistic adult community is a little torn about Light It Up Blue. There is a gambit of feeling towards it, from antipathy to appreciation. I can't please everybody- nobody can. But will I light it up blue?
Yes, I will.
Changing my light bulb actually started conversation in our neighborhood, especially since I was not alone in doing it. I think some of our neighbors were genuinely surprised to see so many porches go blue for April. They wanted to know what was up. And once you get someone to talk, you can get the reins of that conversation and start some folks thinking.
For me, it isn't about Autism Awareness. It is about Autism Understanding.
Many folks in our town know Joey, and they know he is autistic. Few know what that really means. They are surprised to find he loves to be around people, and loves to talk to people. They are surprised to find he is intelligent and observant. He laughs, he chats, he pretends. Part of the surprise is how many "autism awareness" campaigns teach people to look for kids who are aloof, withdrawn, or even violent. Kids who burst into meltdowns at the drop of a hat, who make weird noises, who flap their hands, who don't talk at all- those are the kids many of these campaigns push into the public eye. Any of these things can apply to a person with autism. Or not.
Seizing a campaign like Light It Up Blue and using it as a tool is an important way to educate the majority of folks out there, who have no clue what it means to be autistic. The majority of folks who have no clue even what it means to care about or be a person with special needs or disabilities. I always go back and think, what were my attitudes and opinions before I knew Joey? How do I get people around us to understand? How do you remove ignorance (the only real was to remove fear)?
If my blue light bulb makes even one person stop and think, stop and ask, stop and understand, then that is one more than had done that yesterday. It's one step beyond just awareness. It's one step closer to understanding being the norm.
Thursday, March 21, 2013
Word Processing
"Ridicule. Say, 'ridicule.' Noun. To scorn or mock. To mock means 'to make fun of.'"
Joey has discovered that the vocabulary-building program he uses at school has a website, and he can access words right through "level 12" (I think that means "12th grade")- complete with parts of speech, definition, and even examples. He's delighted. He can now process out all the words he can digest, whenever he feels like it.
"Vain. Say, 'vain.' To think well of oneself. Or to be useless. Mommy, say, 'vain.'"
One of the good things about the program is that it is not spelling-only; it actually pushes kids to improve their vocabulary, to broaden their use and understanding of language. Plus, we can access it 24 hours a day- whenever we need a comforting activity.
"Misfortune. Say, 'misfortune.' Unlucky, trouble. Mommy, today I had a misfortune. See, Mommy? You know what would be the worst misfortune, Mommy? If you died. That would be a terrible misfortune."
I have been listening carefully to the words Joey has been picking to repeat. A lot of them have been... interesting. And negative. He seems to be not only processing words, but trying to process words that make him uncomfortable; something he has done, loud and proud, since he was pretty small. He now has whole sentences to echo, not just the word itself.
"Slay. To kill violently. Slay means 'to kill.' You slayed me, Mommy!"Interestingly, he is also not always right. He's having trouble with phrases such as "in vain"- which seems to him oddly unrelated to the word "vain." Separating the two is very difficult for him. He's also running about testing us in multiple-choice format. Sometimes he even tells us what the question is. OR what the choices are. Or neither. Rarely both.
"Appall. Say, 'appall.' To cause horror. H-o-r-r-o-r, Mommy. Appall!"
Sometimes he looks up the signs for the words. He seems to think it funny. Or an excuse to get my phone. If he can't find a sign, he runs about finger-spelling the word. He's getting pretty good at finger-spelling... he's getting plenty of practice.
"Rout. Mommy, you routed me. That means you defeated me completely."
At least it's educational, right?
Right?
"Jeer. Verb. To mock. It means to make fun of, and not nicely, Mommy. It's not nice to jeer, Mommy."
No, my love. You keep talking it out, though. Some of us just have to do that processing aloud.
Tuesday, March 19, 2013
The Meeting Before the Meeting About the Next Meeting
Yep, you guessed it: IEP season is upon us. In fact, it has taken us by storm. And when I say "storm", I mean "seized by the throat and shaken vigorously in a tornado about to crash into a tsunami."
I told our new case manager that our IEP meetings tend to take about 3 hours. She didn't believe me. We're scheduled for an hour and 45 minutes. I have people hired to come to this meeting, and I do not want to have to have a continuance and try to coordinate these people again. Fortunately, they are there for a single purpose: the get Joey's placement right. And that is just one facet of an IEP meeting. Hence, I want to have our ducks in a row for the other stuff, like goals and accommodations. I want those all drafted and ready, so we don't have to have a long discussion about them that takes, say, an hour and a half.
Or maybe I do. Then I can just pop up and say, "And your school can't do all this, so here's a form to sign to send him to Awesome New School. Sign here. Thanks. Have a great day!" And the school folks would sign it and we would merrily be ready for next year.
Like that would ever happen.
What this means is that we- being the teachers who actually care about Joey- and I are trying to work in time to get the goals and accommodations hammered out properly. Or at all. I think its time for an independent educational eval, so we get a better look at Joey's education as a package- and have a clearer view of where he is, where he should be, and what skills he may need support with- including gifted support. We definitely need some notion of what needs to be in this IEP- its for Middle School, and I want everything spelled out exactly. IF we get stuck in the school, this will be a whole new world of people, a whole new culture with a whole new attitude toward accommodation. It is important that we leave nothing vague, no guesswork, no "well, I know what you mean by that, we can fiddle". They don't know Joey. They don't know me. And I am not a whit convinced they know what they are doing or getting into.
So we're having a meeting, to start hashing. Right before the meeting where we work out the ESY. Then we have the Big Meeting next week.
I think I really need a nap. But I have a meeting to go to.
I told our new case manager that our IEP meetings tend to take about 3 hours. She didn't believe me. We're scheduled for an hour and 45 minutes. I have people hired to come to this meeting, and I do not want to have to have a continuance and try to coordinate these people again. Fortunately, they are there for a single purpose: the get Joey's placement right. And that is just one facet of an IEP meeting. Hence, I want to have our ducks in a row for the other stuff, like goals and accommodations. I want those all drafted and ready, so we don't have to have a long discussion about them that takes, say, an hour and a half.
Or maybe I do. Then I can just pop up and say, "And your school can't do all this, so here's a form to sign to send him to Awesome New School. Sign here. Thanks. Have a great day!" And the school folks would sign it and we would merrily be ready for next year.
Like that would ever happen.
What this means is that we- being the teachers who actually care about Joey- and I are trying to work in time to get the goals and accommodations hammered out properly. Or at all. I think its time for an independent educational eval, so we get a better look at Joey's education as a package- and have a clearer view of where he is, where he should be, and what skills he may need support with- including gifted support. We definitely need some notion of what needs to be in this IEP- its for Middle School, and I want everything spelled out exactly. IF we get stuck in the school, this will be a whole new world of people, a whole new culture with a whole new attitude toward accommodation. It is important that we leave nothing vague, no guesswork, no "well, I know what you mean by that, we can fiddle". They don't know Joey. They don't know me. And I am not a whit convinced they know what they are doing or getting into.
So we're having a meeting, to start hashing. Right before the meeting where we work out the ESY. Then we have the Big Meeting next week.
I think I really need a nap. But I have a meeting to go to.
Tuesday, March 05, 2013
How It Is Supposed to Be
This morning was Andy's annual IEP. I wasn't really dreading this one. Andy's got a rockin' team, and they know him and his needs well. We got a draft sent home to look over, and we were ready to go. We got to the meeting, and we talked about Andy, what he has accomplished, what he will need to succeed in school, and we got down to writing the IEP.
All was going almost party-like, until the admin looked at the screen and brought it to a screeching halt. See, Andy's official special ed category is LD- writing disability (dysgraphia). Apparently, instead of being able to consider the needs to the child as an individual despite the specific labeling, we instead can only address items directly related to the label- ie, to writing. As most folks are apparently ignorant of dysgraphia and do not understand it is a pervasive disability, and as it was written specifically as a "disability in writing", the IEP can only address problems with writing at this time.
And the entire team choked, coughed, and sputtered, and then turned to me and said, "well, we need to get his ADHD officially diagnosed..."
And I had a bovine. I pointed out that not only was he officially diagnosed, the school had the record of it. Although not mentioned in the eligibility meeting that was successful, it was recognized in the pre-kindergarten child study when we were turned down. And I said flat out that I believe that had we been given appropriate and adequate service then, we would not be having these meetings now. Early intervention really does make a real difference.
So without missing a beat, the other folks said, this is wrong, and it needs to be fixed. Immediately.
We closed down the meeting, and set up the next one. We put in requests for evals and testing. We return to eligibility, and get this made right, so that we can write his IEP properly, and his needs can be met. The organizational goals and sensory supports we had discussed could be put into place. This needs to happen, so he can access his education.
This is how it should work- the teachers and therapists see there are needs, the parent sees there are needs, and the paperwork is fixed to be sure it reflects those needs and the required accommodations. The case manager steps up and says, "this needs to say this, let's get it done." And then we put the cogs in motion to get it done. The team works as a team, not as a battle.
Yes, folks, this is the way it should work. You discuss the needs, and then make the paperwork say what is needful- not the other way around.
All was going almost party-like, until the admin looked at the screen and brought it to a screeching halt. See, Andy's official special ed category is LD- writing disability (dysgraphia). Apparently, instead of being able to consider the needs to the child as an individual despite the specific labeling, we instead can only address items directly related to the label- ie, to writing. As most folks are apparently ignorant of dysgraphia and do not understand it is a pervasive disability, and as it was written specifically as a "disability in writing", the IEP can only address problems with writing at this time.
And the entire team choked, coughed, and sputtered, and then turned to me and said, "well, we need to get his ADHD officially diagnosed..."
And I had a bovine. I pointed out that not only was he officially diagnosed, the school had the record of it. Although not mentioned in the eligibility meeting that was successful, it was recognized in the pre-kindergarten child study when we were turned down. And I said flat out that I believe that had we been given appropriate and adequate service then, we would not be having these meetings now. Early intervention really does make a real difference.
So without missing a beat, the other folks said, this is wrong, and it needs to be fixed. Immediately.
We closed down the meeting, and set up the next one. We put in requests for evals and testing. We return to eligibility, and get this made right, so that we can write his IEP properly, and his needs can be met. The organizational goals and sensory supports we had discussed could be put into place. This needs to happen, so he can access his education.
This is how it should work- the teachers and therapists see there are needs, the parent sees there are needs, and the paperwork is fixed to be sure it reflects those needs and the required accommodations. The case manager steps up and says, "this needs to say this, let's get it done." And then we put the cogs in motion to get it done. The team works as a team, not as a battle.
Yes, folks, this is the way it should work. You discuss the needs, and then make the paperwork say what is needful- not the other way around.
Saturday, February 23, 2013
Nowhere to Go
So you find yourself at an IEP meeting that you never really wanted to go to, having to say things that make your heart hurt, and trying to figure out what can be done to keep your child from losing ground until you can have another IEP meeting that will make your heart hurt and try to actually do something useful.
Wait, I think that might be every IEP meeting.
There's a lot to make my heart hurt right now.
I had to admit that Joey cannot hold his own in a "mainstream" classroom without support. And not just any support, he needs specialized, experienced, trained support to be successful in there. And that is something the school not only does not have, but has no time to create or hire for this year. A para, we could probably locate. An understanding teacher, apparently not so much.
But it got worse. If we take him out of this room, where do we put him?
Let me back up a minute to give you a better picture.
One of Joey's outstanding strengths is his grasp of math. He loves it. He breathes it. He perseverates on it. HE finds it logical, sensible, comfortingly regular and patterned. Math. It rocks.
At the start of third grade, I was called into the principal's office. I was nervous, as we had already been running into tough bolting situations with Joey by then- and it was a new behavior, so we didn't know the signs yet. TO my surprise, he was suggesting we might want to move Joey up a few grades in math, if we could find someone to teach him. He had just passed the end-of-year tests for both fourth and fifth grade. However, they didn't move him, because he didn't pass the third grade test, and there were some holes in skills- so hey, we had time to fill them, and use math time for social skills practice. I should have made them move him up.
Joey's favorite car riding game is to shout out math questions and answer them. Sometimes he does the shouting. Sometimes the answering. It's all awesome to him. And I'm not talking namby-pamby, simple-arithmetic stuff. I'm talking 34X78. No, you have to do it in your head. And you have about five seconds.
When Joey does well for his school speech therapist, she allows him, as his treat, to do a math problem. Right now, he's in love with long division. Only he doesn't like to write it all out, because that's messy. If he absolutely has to write it out, he'll flip the paper over, re-write the question, and the answer, so it looks tidy. He will work hard so he can have his math problem.
He also loves to watch other people do math. One of his favorite treats last year was to watch one of his other teachers, who was a bit of a math wiz, do long division on the white board. It made him giggle to see her do it so fast. I found out this week that he'll giggle when I do it, too. And he'll work hard for a treat of watching you do math super fast.
This past quarter, he got a C in math. And the reason? He was flunking math tests, big-time. He got 40 on his 9 weeks test. This quarter, we started off with a C on his fractions test.
Does. Not. Compute.
Was it one of those "holes" that needed to be filled? I looked at the paper, asked him the questions. He responded immediately- and correctly. So I asked more complicated questions. Still correct. Still immediate.
Does. Not. Compute.
So as part of the IEP meeting, we confronted this enigma. The excuse? Well, there are more word problems now, because the SOL is "more rigorous."
After we cleared up the meaning of the word "rigorous" (after all, the test isn't asking for more relevant skills or higher degrees of mathematical knowledge- it is simply adding a bunch of language to process), the conclusion was stated point-blank by our administrator: the problem wasn't the math. It was the disability. Joey has a language processing and communication disability, remember? And guess what is NOT accommodated when you plunk a bunch of language-heavy tests in front of him?
I'm not even going to start with the problem of doing this on the SOLs, and the discriminatory obstacle it is going to put in front of my child (what do they want to test? Math ability? Or language comprehension and test-taking ability? That's rhetorical, BTW. Unfortunately, we know the answer there). I just laid it out there that I don't give a damn about SOL tests, because they are useless. They are poorly designed and poorly administered. They disregard a child's developmental level- or even the appropriate developmental ability and level of any age group- making the tests nearly impossible to take in the first place. They are "scaled", but not to an scale that would be remotely useful for comparing the scores to anything else known to man. They teach kids more about how to get through testing than acting as evaluation tools or helping kids learn anything. They can't even be used as data points for a child's progress or level of ability. They are useless, stressful, inappropriate trash.
But back to Joey. If you want Joey to be able to handle word problems, you have to teach him how to handle word problems. We've proven that before. When you teach him the key words and what they mean, he does fine. They become part of the puzzle, part of the pattern, and it is all good. If Mary has six apples and Johnny eats three apples, how many apples do you have left? "Do you have left" means to look for a subtraction problem. The big number probably comes first. The little number comes second. Bingo, 6-3=3. Johnny and Mary are left with three apples. Almost every word problem has these patterns, you just have to teach them- especially to kids who have language processing disabilities.
I'm not sure why a decent teacher would not pick up on the problem here, or its solution. Kid has no problem with math. Kid failing word problems. Stop and teach kid to decode word problems. Problem solved. Heck, I'd be thinking of that even if the kid didn't have a known language processing disability. Lots of kids trip on word problems.
So, we have no trained, experienced support, and a teacher who has no concept of language processing disabilities or how to accommodate a child with them, she just flunks him. Then she lets him leave her classroom without even watching to be sure he gets across the hall, and thus he ends up in the parking lot. Or at least at the door. The story kinda got changed at the meeting. Again. Communication even between the staff appears to be in shambles.
Time to get him out of there, before someone gets hurt. Or has to be bailed out jail. You get the picture.
So, where to go? What do you do with a twice-exceptional child? Where do you place a child who has serious disabilities in language but is brilliant in math? The self-contained room is not designed for that. The inclusion room is not designed for that. Both of those are designed for a slower pace, not a faster one, in the lesson material. How do you keep the math coming, while working on the language? How do you fight boredom while addressing challenge?
The fact is, schools are not set up to deal with children as individuals in any way. Special ed is "so expensive" partly because regular classrooms are not designed to deviate or flex. Regular ed teachers are not trained to deal with a diversity of student needs, only a narrow scope of student skills- specific skills at that. Special ed is a whole different way of understanding kids and how to teach them effectively; a way that would benefit all kids. Most of the special ed "techniques" I've seen are just plain old good teaching. Yet, there are those who need something different. Something unique. Something individualized.
What, you mean, like an IEP?
Right. An IEP with nowhere to go.
Wait, I think that might be every IEP meeting.
There's a lot to make my heart hurt right now.
I had to admit that Joey cannot hold his own in a "mainstream" classroom without support. And not just any support, he needs specialized, experienced, trained support to be successful in there. And that is something the school not only does not have, but has no time to create or hire for this year. A para, we could probably locate. An understanding teacher, apparently not so much.
But it got worse. If we take him out of this room, where do we put him?
Let me back up a minute to give you a better picture.
One of Joey's outstanding strengths is his grasp of math. He loves it. He breathes it. He perseverates on it. HE finds it logical, sensible, comfortingly regular and patterned. Math. It rocks.
At the start of third grade, I was called into the principal's office. I was nervous, as we had already been running into tough bolting situations with Joey by then- and it was a new behavior, so we didn't know the signs yet. TO my surprise, he was suggesting we might want to move Joey up a few grades in math, if we could find someone to teach him. He had just passed the end-of-year tests for both fourth and fifth grade. However, they didn't move him, because he didn't pass the third grade test, and there were some holes in skills- so hey, we had time to fill them, and use math time for social skills practice. I should have made them move him up.
Joey's favorite car riding game is to shout out math questions and answer them. Sometimes he does the shouting. Sometimes the answering. It's all awesome to him. And I'm not talking namby-pamby, simple-arithmetic stuff. I'm talking 34X78. No, you have to do it in your head. And you have about five seconds.
When Joey does well for his school speech therapist, she allows him, as his treat, to do a math problem. Right now, he's in love with long division. Only he doesn't like to write it all out, because that's messy. If he absolutely has to write it out, he'll flip the paper over, re-write the question, and the answer, so it looks tidy. He will work hard so he can have his math problem.
He also loves to watch other people do math. One of his favorite treats last year was to watch one of his other teachers, who was a bit of a math wiz, do long division on the white board. It made him giggle to see her do it so fast. I found out this week that he'll giggle when I do it, too. And he'll work hard for a treat of watching you do math super fast.
This past quarter, he got a C in math. And the reason? He was flunking math tests, big-time. He got 40 on his 9 weeks test. This quarter, we started off with a C on his fractions test.
Does. Not. Compute.
Was it one of those "holes" that needed to be filled? I looked at the paper, asked him the questions. He responded immediately- and correctly. So I asked more complicated questions. Still correct. Still immediate.
Does. Not. Compute.
So as part of the IEP meeting, we confronted this enigma. The excuse? Well, there are more word problems now, because the SOL is "more rigorous."
After we cleared up the meaning of the word "rigorous" (after all, the test isn't asking for more relevant skills or higher degrees of mathematical knowledge- it is simply adding a bunch of language to process), the conclusion was stated point-blank by our administrator: the problem wasn't the math. It was the disability. Joey has a language processing and communication disability, remember? And guess what is NOT accommodated when you plunk a bunch of language-heavy tests in front of him?
I'm not even going to start with the problem of doing this on the SOLs, and the discriminatory obstacle it is going to put in front of my child (what do they want to test? Math ability? Or language comprehension and test-taking ability? That's rhetorical, BTW. Unfortunately, we know the answer there). I just laid it out there that I don't give a damn about SOL tests, because they are useless. They are poorly designed and poorly administered. They disregard a child's developmental level- or even the appropriate developmental ability and level of any age group- making the tests nearly impossible to take in the first place. They are "scaled", but not to an scale that would be remotely useful for comparing the scores to anything else known to man. They teach kids more about how to get through testing than acting as evaluation tools or helping kids learn anything. They can't even be used as data points for a child's progress or level of ability. They are useless, stressful, inappropriate trash.
But back to Joey. If you want Joey to be able to handle word problems, you have to teach him how to handle word problems. We've proven that before. When you teach him the key words and what they mean, he does fine. They become part of the puzzle, part of the pattern, and it is all good. If Mary has six apples and Johnny eats three apples, how many apples do you have left? "Do you have left" means to look for a subtraction problem. The big number probably comes first. The little number comes second. Bingo, 6-3=3. Johnny and Mary are left with three apples. Almost every word problem has these patterns, you just have to teach them- especially to kids who have language processing disabilities.
I'm not sure why a decent teacher would not pick up on the problem here, or its solution. Kid has no problem with math. Kid failing word problems. Stop and teach kid to decode word problems. Problem solved. Heck, I'd be thinking of that even if the kid didn't have a known language processing disability. Lots of kids trip on word problems.
So, we have no trained, experienced support, and a teacher who has no concept of language processing disabilities or how to accommodate a child with them, she just flunks him. Then she lets him leave her classroom without even watching to be sure he gets across the hall, and thus he ends up in the parking lot. Or at least at the door. The story kinda got changed at the meeting. Again. Communication even between the staff appears to be in shambles.
Time to get him out of there, before someone gets hurt. Or has to be bailed out jail. You get the picture.
So, where to go? What do you do with a twice-exceptional child? Where do you place a child who has serious disabilities in language but is brilliant in math? The self-contained room is not designed for that. The inclusion room is not designed for that. Both of those are designed for a slower pace, not a faster one, in the lesson material. How do you keep the math coming, while working on the language? How do you fight boredom while addressing challenge?
The fact is, schools are not set up to deal with children as individuals in any way. Special ed is "so expensive" partly because regular classrooms are not designed to deviate or flex. Regular ed teachers are not trained to deal with a diversity of student needs, only a narrow scope of student skills- specific skills at that. Special ed is a whole different way of understanding kids and how to teach them effectively; a way that would benefit all kids. Most of the special ed "techniques" I've seen are just plain old good teaching. Yet, there are those who need something different. Something unique. Something individualized.
What, you mean, like an IEP?
Right. An IEP with nowhere to go.
Thursday, February 21, 2013
Thank you!
A big THANKS to all my awesome Cafepress/Joeymom's Autism Awareness Bazaar customers. This last check paid for TWO therapy co-pays! You guys ROCK!!!!
Friday, February 15, 2013
Houdini Lives
He made it all the way to the parking lot this time. A guidance counselor, arriving late for work, caught him and escorted him back to his class. The para doesn't come until 9, so she wasn't there yet. No one seems able to tell me what happened. In fact, I wasn't told until 3pm (I got the call just as we were arriving for Andy's therapy).
The IEP meeting is scheduled for 9:30am on Thursday. Seriously considering keeping him home until then, for his safety.
NOT.
HAPPY.
The IEP meeting is scheduled for 9:30am on Thursday. Seriously considering keeping him home until then, for his safety.
NOT.
HAPPY.
Wednesday, February 13, 2013
Going In With Solutions, Part the Third
I look down at the report card, then at the homework sheet. My brows are knit, so that my eyes are scrunched; it hurts. I stare at it.
"Joey? Simplify five-fifteenths."
"One third." There is not even a moment of hesitation, of processing, nothing- the answer is immediate.
I stare at the paper, marked 40-F. It is dated a week ago.
"Joey, what is 6/24?"
"One fourth." No pause. No blink of the eye. He's not even looking at the numbers, the audial processing isn't even road-bumping him.
"What is 1/8 plus 1/4?"
"3/8."
"What is 1/3 plus 1/6?"
"One half." He is getting slightly annoyed with me asking stupid questions.
"What is 3/15?"
"1/3."
"7/14?"
"1/2."
I keep this up as he puts on his coat, toss in some laughter to fool him into thinking it is a game, one we we have played since he could talk- the math problem game, the sudden barrage of math problems, increasingly complex, which still ornaments long car rides. The air is chilly. I am still clutching the failed papers, the report card that has a C+ in the math column, but the only comment, "Your child is a joy to teach!"
Must not be, since you don't appear to be actually teaching him.
"What is 3/18?"
"1/6."
"4/5 plus 1/5?"
"One."
"What is 4/76?"
He pauses for the first time, scrunches his brow and then grins.
"Mommy! That's silly!" I purposely picked the oddball numbers, but also know the answer is 1/19. The problem is too complex for him without seeing it, but he doesn't freak out, he makes his "I want a kiss" face. I oblige as the bus pulls up.
I have requested a copy of his school records. I'm going to make sure my ducks are in a row, and make some visuals, so that the team understands: we are out of time. If our IEP is failing, we need to fix it, immediately. And there is no excuse for this child to be getting a C in math.
"Joey? Simplify five-fifteenths."
"One third." There is not even a moment of hesitation, of processing, nothing- the answer is immediate.
I stare at the paper, marked 40-F. It is dated a week ago.
"Joey, what is 6/24?"
"One fourth." No pause. No blink of the eye. He's not even looking at the numbers, the audial processing isn't even road-bumping him.
"What is 1/8 plus 1/4?"
"3/8."
"What is 1/3 plus 1/6?"
"One half." He is getting slightly annoyed with me asking stupid questions.
"What is 3/15?"
"1/3."
"7/14?"
"1/2."
I keep this up as he puts on his coat, toss in some laughter to fool him into thinking it is a game, one we we have played since he could talk- the math problem game, the sudden barrage of math problems, increasingly complex, which still ornaments long car rides. The air is chilly. I am still clutching the failed papers, the report card that has a C+ in the math column, but the only comment, "Your child is a joy to teach!"
Must not be, since you don't appear to be actually teaching him.
"What is 3/18?"
"1/6."
"4/5 plus 1/5?"
"One."
"What is 4/76?"
He pauses for the first time, scrunches his brow and then grins.
"Mommy! That's silly!" I purposely picked the oddball numbers, but also know the answer is 1/19. The problem is too complex for him without seeing it, but he doesn't freak out, he makes his "I want a kiss" face. I oblige as the bus pulls up.
I have requested a copy of his school records. I'm going to make sure my ducks are in a row, and make some visuals, so that the team understands: we are out of time. If our IEP is failing, we need to fix it, immediately. And there is no excuse for this child to be getting a C in math.
Friday, February 08, 2013
Go In With Solutions: Part 2
Yes, it's February- and time to start thinking about Joey's IEP for next year. Ive been thinking about what I think Joey needs, listening to Joey and his difficulties, and considering what he should be learning and doing. I've been thinking about the models that have worked for him, and what key components made those models work. Then I've been thinking about why he needs these models, and goals, and supports. I've been thinking about what we've seen, what progress we've made, what regression we've seen, and why we have been both successful and... not so much.
Most of all, I've been thinking about Joey's stress.
I think most people understand that too much stress breaks down anybody's ability to function, including learning. If we don't address the stress, anything else we do will fall apart. That's the first and foremost reason for almost everything I can think about for Joey's IEP: a setting that reduces stress. A learning model that minimizes stress. Social skills programming to include coping with stress. Accommodations to eliminate stress.
And this time, not only do I have to get it right, but I have to put my foot down. No budging. We've been through the ringer, and we are out of time for fooling around. We have the data. We know what works. Now, we just need to spell it out- clearly, concisely, and completely.
How many times have I told my students to do that?
Most of all, I've been thinking about Joey's stress.
I think most people understand that too much stress breaks down anybody's ability to function, including learning. If we don't address the stress, anything else we do will fall apart. That's the first and foremost reason for almost everything I can think about for Joey's IEP: a setting that reduces stress. A learning model that minimizes stress. Social skills programming to include coping with stress. Accommodations to eliminate stress.
And this time, not only do I have to get it right, but I have to put my foot down. No budging. We've been through the ringer, and we are out of time for fooling around. We have the data. We know what works. Now, we just need to spell it out- clearly, concisely, and completely.
How many times have I told my students to do that?
Tuesday, February 05, 2013
The rows we hoe
I have been reading a few new blogs lately- ones that caught my eye in hopping about looking at other folks' blogs, or Facebook comments, or Twitter feeds. Without the massive mounds of time I would love to have, I am forced to be selective, so this is big news. Most of these new blogs have something in common with the experiences I'm having here- blogs with late-elementary kids, kids that seem to be at the same place Joey is in experiencing and understanding the world. The mix of eager emotion that rolls about my heart as I catch up on these new worlds, as well as keeping hold of the ones I already know and love, was something that seemed to be holding me to the ground as we take the latest hill of our roller-coaster.
I thought I was looking for some kind of understanding, some kind of familiarity, some kernel of how others are understanding their kids and perhaps hoping for a glimpse into what Joey is thinking and feeling. What I think I was really looking for was that "I'm not the only one here" that I hope my little blog lends to others. Standing on the edge of unknown territory, I so want to get a sense of what lies before my feet, and understand that others are at this same place.
Joey is in uncharted waters, and I don't want to fail him and have him drown... or not learn to swim.
And there are snatches of that out there. I'm not the only one with a 10-year-old who is still into preschooler characters, especially for comfort. We're not the only ones with ups and downs of echolalia, frustration, and discomfort. We're not the only ones walking that knife edge of being age-appropriate, yet letting Joey be himself. And Andy, for that matter.
But there is something I have not found- I know it is out there, but we aren't talking about it in ways that I can gain insight on- for helping Joey. We can't be the only ones.
Dealing with overwhelmingly intense emotion is difficult for most folks, but for Joey, who spends his life on the brink of an anxiety attack, the boiling-over can be explosive. Lately, Joey seems to have almost no defenses against intense emotion, and even immediate triggers can be difficult to discern. In November, we had the strange episode of the Not Dead Grandfather, where just imagining the loss of a grandfather- none of which he knows particularly well, and all of which I am happy to report are alive and well- totally overwhelmed him, to the point he even had his teachers upset. The pain he displayed was as if the event had occurred- it was so real to him, he had no defenses to cope with the emotion of it.
Last week, he told everybody he had to give a "last concert" of Signing Time songs because he was going to move to my hometown and go to a new school the next day- and no amount of reasoning would deflect him. Even confronted with the fact that he was not moving didn't help; he was in such a state that the principal called me in the middle of lecture to ask me what to do. (Why did he not call the school autism resource teacher? Because she is split with another school, and was not on campus). I finally struck on using the social skills language he has been practicing in his private OT to try to give him some words he understood to calm him and re-calibrate himself; and that seemed to work. He was at least able to go to class.
I could identify the script sources (Signing Time, plus Quack the Duck from Peep and the Big Wide World), but I could not for the life of me figure out what made him so unhappy and uncomfortable that he would invoke them.
A few days later, he said a friend on the bus had bitten him- certainly that would be an immediate trigger. But in investigating the matter, there is no support for it. The bus attendant and the driver have no clue what Joey is talking about, the friend he claims bit him sits far away from him on the bus and, though an unpredictable child, is not known to bite.
I honestly find myself at a total loss. Was he bitten or not? And if he wasn't, what triggered a two-hour meltdown of echolalia and imagined upset? Is he having trouble drawing lines between imagination and reality? How can I help bring down his anxiety level so that "imagined"* stress does not overwhelm him? Is it the imagined scenarios he is feeling the pain and upset about, or is he hiding other stress (just like, for example, when he pretending to be Buzz Lightyear instead of Joey)? Is it a whistle in the wind, like when he loses something and starts screaming that it is "on the roof"?
I just don't know. But we can't be alone in this. Please. Not that I would want other families having issues, but... please don't let us be alone.
*Although the scenarios he is describing in his speech are not real, the stress is.
I thought I was looking for some kind of understanding, some kind of familiarity, some kernel of how others are understanding their kids and perhaps hoping for a glimpse into what Joey is thinking and feeling. What I think I was really looking for was that "I'm not the only one here" that I hope my little blog lends to others. Standing on the edge of unknown territory, I so want to get a sense of what lies before my feet, and understand that others are at this same place.
Joey is in uncharted waters, and I don't want to fail him and have him drown... or not learn to swim.
And there are snatches of that out there. I'm not the only one with a 10-year-old who is still into preschooler characters, especially for comfort. We're not the only ones with ups and downs of echolalia, frustration, and discomfort. We're not the only ones walking that knife edge of being age-appropriate, yet letting Joey be himself. And Andy, for that matter.
But there is something I have not found- I know it is out there, but we aren't talking about it in ways that I can gain insight on- for helping Joey. We can't be the only ones.
Dealing with overwhelmingly intense emotion is difficult for most folks, but for Joey, who spends his life on the brink of an anxiety attack, the boiling-over can be explosive. Lately, Joey seems to have almost no defenses against intense emotion, and even immediate triggers can be difficult to discern. In November, we had the strange episode of the Not Dead Grandfather, where just imagining the loss of a grandfather- none of which he knows particularly well, and all of which I am happy to report are alive and well- totally overwhelmed him, to the point he even had his teachers upset. The pain he displayed was as if the event had occurred- it was so real to him, he had no defenses to cope with the emotion of it.
Last week, he told everybody he had to give a "last concert" of Signing Time songs because he was going to move to my hometown and go to a new school the next day- and no amount of reasoning would deflect him. Even confronted with the fact that he was not moving didn't help; he was in such a state that the principal called me in the middle of lecture to ask me what to do. (Why did he not call the school autism resource teacher? Because she is split with another school, and was not on campus). I finally struck on using the social skills language he has been practicing in his private OT to try to give him some words he understood to calm him and re-calibrate himself; and that seemed to work. He was at least able to go to class.
I could identify the script sources (Signing Time, plus Quack the Duck from Peep and the Big Wide World), but I could not for the life of me figure out what made him so unhappy and uncomfortable that he would invoke them.
A few days later, he said a friend on the bus had bitten him- certainly that would be an immediate trigger. But in investigating the matter, there is no support for it. The bus attendant and the driver have no clue what Joey is talking about, the friend he claims bit him sits far away from him on the bus and, though an unpredictable child, is not known to bite.
I honestly find myself at a total loss. Was he bitten or not? And if he wasn't, what triggered a two-hour meltdown of echolalia and imagined upset? Is he having trouble drawing lines between imagination and reality? How can I help bring down his anxiety level so that "imagined"* stress does not overwhelm him? Is it the imagined scenarios he is feeling the pain and upset about, or is he hiding other stress (just like, for example, when he pretending to be Buzz Lightyear instead of Joey)? Is it a whistle in the wind, like when he loses something and starts screaming that it is "on the roof"?
I just don't know. But we can't be alone in this. Please. Not that I would want other families having issues, but... please don't let us be alone.
*Although the scenarios he is describing in his speech are not real, the stress is.
Friday, January 25, 2013
Go In With Solutions
As you may remember, our last IEP meeting- which was supposed to produce a BIP- was... well, a disaster. I had requested to get the eval info ahead of time, but the school psych wanted us to "hammer it out in the meeting" and didn't send anything, so I went in with no info. When I saw the info, I realized I still had no info. What they called "data" was nothing of the sort- and even the interpretations and notes provided were basically "variable- variable-variable"- in other words, they failed to note any pattern in Joey's behavior. Which, of course, makes no sense and is completely useless when trying to figure out how to intervene. The only thing suggested looked to me like a data collection they should have been doing in the first place, trying to learn to read Joey emotionally by checking on his well-being regularly. This isn't an intervention. There was no plan for what to do if he had another meltdown.
I have been feeling like an idiot ever since. And I didn't sign that waste of time. I need to get together a letter about why.
And as I mull that letter, I struck upon an idea I should have remembered when I went to the meeting in the first place: I need to provide solutions. I need to state what I think needs to happen, what I want an intervention to look like, what services I believe are required should there be another issue. I need to be clear that suspending him is not appropriate. That when he is so overwhelmed that he loses skills and control of his mouth and his behavior, what needs to happen to calm him, guide him, and help him. We need a clear understanding that screaming obscenities is not OK in a classroom, but we also need to be sure we are doing what is needful to not let things get that far. What are the red flags, and what can be done for each one? What should be done so that you avoid escalation?
And since no one was interested in doing that at the meeting, obviously I need to do it myself. They can then try to tell me no.
I have been feeling like an idiot ever since. And I didn't sign that waste of time. I need to get together a letter about why.
And as I mull that letter, I struck upon an idea I should have remembered when I went to the meeting in the first place: I need to provide solutions. I need to state what I think needs to happen, what I want an intervention to look like, what services I believe are required should there be another issue. I need to be clear that suspending him is not appropriate. That when he is so overwhelmed that he loses skills and control of his mouth and his behavior, what needs to happen to calm him, guide him, and help him. We need a clear understanding that screaming obscenities is not OK in a classroom, but we also need to be sure we are doing what is needful to not let things get that far. What are the red flags, and what can be done for each one? What should be done so that you avoid escalation?
And since no one was interested in doing that at the meeting, obviously I need to do it myself. They can then try to tell me no.
Thursday, January 24, 2013
Snow Day
Lookie! Snow!
The boys were totally excited. I was totally unprepared. I can't find the bag of gloves anywhere. Joey wore my boots, because he doesn't have any. But we still managed to hit the local slope this morning and enjoy the powder- perfect for sledding, especially if you have a metal snow saucer. We got to see how much faster they are than the plastic ones- and so did everybody else. Woo-hoo!
Then home for hot chocolate and movies, and in and out to play in the back yard for the day. The boys decided to start adding milk to the snow to make "milkshakes." Yum. Then they added M&Ms, so they had a chocolately, milky boy delight.
And at one point, I had two boys on me, with two warm, furry kittehs. That, friends, is what snow days are all about.
Thursday, January 17, 2013
Take a Break
Outside, it is icy cold, but pouring rain. Joey is snuggled tight against me, we are signing to Signing Time together. He is home because first he had a cough, and the day he went back to school, he got a tummy bug. I've kept him home after having to pick him up from school yesterday. He seems happy, smiling, but the fact that he is curled on the couch this time of day and the circles around his eyes tell a different story.
"A. This is A, Mommy," he shows me the letter. Rachel announces a new sign, "imagination." We haven't used this sign in a while, he proudly imitates it. "Look, Mommy, 'imagination'! Make a 'B', and circle it around like this." He does this, and realizes it is not quite what Rachel was doing. "No, make a '4'. Like this, Mommy," he patiently shows me, waits for me to imitate him. We sign it together, beginning signing the song that goes with it.
"Look, Mommy, 'pretend.' Do it this way." He gives me some hand-over-hand help. Then he touches my face, since his hand is already there. "I love you, Mommy." He's been saying this a lot lately. He find the expected response to be comforting. I don't blame him.
"I love you, too," I reply, not out of duty, but- as usual- because it is true. "You are awesome."
"I am good at signing, Mommy. I am a good signer. I am better than you!"
"You are a fabulous signer, my love."
"I love you, Mommy."
"I love you, too."
"I can teach the babies sign, Mommy. I am going to teach the babies sign."
"I think you would be excellent at that, sugarplum." He smiles, snuggles, starts going through the alphabet. He gets distracted part way through, shows me a few more signs.
"I love you, Mommy," he says again, absently, watching his fingers form the shapes as he settles in closer to my side.
"I love you, too." I sign it, he sees it in the corner of his eye.
"You are so very loved, Mommy."
"You are, too."
He gets up, goes to his computer, and starts making videos of his signing. The break is over, he's back to busy.
That's my boy.
"A. This is A, Mommy," he shows me the letter. Rachel announces a new sign, "imagination." We haven't used this sign in a while, he proudly imitates it. "Look, Mommy, 'imagination'! Make a 'B', and circle it around like this." He does this, and realizes it is not quite what Rachel was doing. "No, make a '4'. Like this, Mommy," he patiently shows me, waits for me to imitate him. We sign it together, beginning signing the song that goes with it.
"Look, Mommy, 'pretend.' Do it this way." He gives me some hand-over-hand help. Then he touches my face, since his hand is already there. "I love you, Mommy." He's been saying this a lot lately. He find the expected response to be comforting. I don't blame him.
"I love you, too," I reply, not out of duty, but- as usual- because it is true. "You are awesome."
"I am good at signing, Mommy. I am a good signer. I am better than you!"
"You are a fabulous signer, my love."
"I love you, Mommy."
"I love you, too."
"I can teach the babies sign, Mommy. I am going to teach the babies sign."
"I think you would be excellent at that, sugarplum." He smiles, snuggles, starts going through the alphabet. He gets distracted part way through, shows me a few more signs.
"I love you, Mommy," he says again, absently, watching his fingers form the shapes as he settles in closer to my side.
"I love you, too." I sign it, he sees it in the corner of his eye.
"You are so very loved, Mommy."
"You are, too."
He gets up, goes to his computer, and starts making videos of his signing. The break is over, he's back to busy.
That's my boy.
Wednesday, January 09, 2013
Social Skills Aren't Just About Doing It Right
Our private social skills "group" has hit a snag. I put the "group" in quotes, because until next week, it is only two kids- Joey and "Buddy." Next week, an old friend returns to our group, "Mr. Man." (I hope to have some more posts up with Mr. Man in them, because he and Joey have a very interesting relationship.) The two currently there were matched up by our OT, who works closely with them in a program called Social Thinking. They are learning about important things like body language, expected and unexpected responses, and how to tell when someone is talking to you, etc. etc. Buddy has some similar language patterns to Joey, but in some ways is more verbal, but in some ways far more inflexible. Both have difficulties with processing, and need a lot of external processing support and time. I was told this pair was a good match for the group, and Joey likes to go.
Over the two-week break, Joey informed me that he doesn't like Buddy. He was so clear about this that I decided the OT needed to know, to head off any problems.
You know you are about to have an interesting new conversation when you pull your OT aside after group, and say, "Miss L, Joey told me... he doesn't like Buddy..." and she cuts you off with a cheery, "Oh! Good!"
Often enough when we have Joey in groups, it can be very difficult for us to figure out exactly what Joey is getting from the other children. He seems to be modeling for the other kids, but not having much modeled for him. I know things are working because of the improvements we see, but I haven't figured out exactly why it works. What's in it for Joey?
IN our little pairsome, Joey is again the model. Joey is very good at learning the proper way to do things, and modeling that in controlled settings. Buddy is not. He needs the foil of Joey to work on how things are done right. Hence, he often makes "unexpected choices." Buddy does not respond in the ways JOey is being taught he should be responding. For example, if Buddy is sitting in the middle of the hall, and Joey wants to get by, we have taught him to politely ask, "Can you please move over so I can get by?" He then expects the response of the child moving aside so he can get by, because the other children have been taught that when someone asks you to move aside so they can get by, you move aside.
Buddy ignores him, and stay right where he is. Sometimes he may be playing a game in his head, and says something that seems arbitrary to Joey, like, "Pow! You lose a turn!" This is very confusing for Joey.
However, this is a common issue to think about in any social skills or anti-bullying campaign. You are being taught to react to situations in certain ways, do certain things, with the denouement being the bully starts being nice and everyone lives happily ever after. Right?
And yet we have all figured out it doesn't work that way. People do unexpected things. The bully keeps being mean. The co-worker keeps stealing your lunch. The neighbor keeps letting the dog bark. Mom still doesn't buy you the toy. Now what?
For the past three years, Joey has had in his IEP a goal to deal with bullying. It is an unfortunate truth that bullying will likely be a fact of life for Joey, and he needs to be specifically taught the coping skills most of us learn just by having to deal with jerks all the time. What do you do when you do everything right, and the situation is still wrong? Or unexpected?
This is one of the things Joey has been discovering and learning in group this year. How do you deal with the anti-social behaviors of others? If people make you feel uncomfortable, what is the appropriate and expected way to respond? What is a proper way to resolve an unexpected issue or response? Buddy stays put; Joey has to learn how to step around him, and perhaps go do something else. When Buddy says something that seems not to make sense, Joey is learning how to respond. When Buddy isn't nice to him, Joey is learning what to do. He is learning that not everyone in a class or group is a friend, and that it is OK that not everyone you meet, or who is in your classroom, is not your friend. You don't have to be friends with everybody. People who treat you in mean ways are not friends, and you do not need or want to be friends with them. He is learning to deal with people who are not friends, without being rude or unexpected- and how to be safe in dealing with people who are not your friends.
These are skills the school keeps saying they can't teach Joey because "no one bullies him."
I call hockey pucks.
Over the two-week break, Joey informed me that he doesn't like Buddy. He was so clear about this that I decided the OT needed to know, to head off any problems.
You know you are about to have an interesting new conversation when you pull your OT aside after group, and say, "Miss L, Joey told me... he doesn't like Buddy..." and she cuts you off with a cheery, "Oh! Good!"
Often enough when we have Joey in groups, it can be very difficult for us to figure out exactly what Joey is getting from the other children. He seems to be modeling for the other kids, but not having much modeled for him. I know things are working because of the improvements we see, but I haven't figured out exactly why it works. What's in it for Joey?
IN our little pairsome, Joey is again the model. Joey is very good at learning the proper way to do things, and modeling that in controlled settings. Buddy is not. He needs the foil of Joey to work on how things are done right. Hence, he often makes "unexpected choices." Buddy does not respond in the ways JOey is being taught he should be responding. For example, if Buddy is sitting in the middle of the hall, and Joey wants to get by, we have taught him to politely ask, "Can you please move over so I can get by?" He then expects the response of the child moving aside so he can get by, because the other children have been taught that when someone asks you to move aside so they can get by, you move aside.
Buddy ignores him, and stay right where he is. Sometimes he may be playing a game in his head, and says something that seems arbitrary to Joey, like, "Pow! You lose a turn!" This is very confusing for Joey.
However, this is a common issue to think about in any social skills or anti-bullying campaign. You are being taught to react to situations in certain ways, do certain things, with the denouement being the bully starts being nice and everyone lives happily ever after. Right?
And yet we have all figured out it doesn't work that way. People do unexpected things. The bully keeps being mean. The co-worker keeps stealing your lunch. The neighbor keeps letting the dog bark. Mom still doesn't buy you the toy. Now what?
For the past three years, Joey has had in his IEP a goal to deal with bullying. It is an unfortunate truth that bullying will likely be a fact of life for Joey, and he needs to be specifically taught the coping skills most of us learn just by having to deal with jerks all the time. What do you do when you do everything right, and the situation is still wrong? Or unexpected?
This is one of the things Joey has been discovering and learning in group this year. How do you deal with the anti-social behaviors of others? If people make you feel uncomfortable, what is the appropriate and expected way to respond? What is a proper way to resolve an unexpected issue or response? Buddy stays put; Joey has to learn how to step around him, and perhaps go do something else. When Buddy says something that seems not to make sense, Joey is learning how to respond. When Buddy isn't nice to him, Joey is learning what to do. He is learning that not everyone in a class or group is a friend, and that it is OK that not everyone you meet, or who is in your classroom, is not your friend. You don't have to be friends with everybody. People who treat you in mean ways are not friends, and you do not need or want to be friends with them. He is learning to deal with people who are not friends, without being rude or unexpected- and how to be safe in dealing with people who are not your friends.
These are skills the school keeps saying they can't teach Joey because "no one bullies him."
I call hockey pucks.
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