Ah, April. The month of Awareness. Lots more articles, shows, ads, and information bouncing around about autism, and not all of it accurate or useful. There are a few phrases and myths I just get sick of. And since I am grumpy this morning, here they are.
1. Autistic people do not feel empathy or sympathy. Horsehockeys. There is a difference between being able to empathize and being able to do something about that empathy, or being able to communicate empathy. Joey knows how people are feeling around him- often acutely. Being able to react appropriately is more of a problem. If someone is hurt on the playground, he is quick with a hug and kind word. When people around him are nervous and fretful, he gets anxious, too. When folks are sad, he tries to help make them feel better.
2. Autistic people are trapped in another world. Joey's problem is he is trapped in this one, where people seem to lack empathy for him. Who is the autistic one, again?
But seriously, communication disabilities aren't about being locked up somewhere else. They are difficulties in being able to communicate what you are thinking and feeling to other people. That's not being "locked up" somewhere else.
I have often seen it bandied about medical blogs that people would rather die than live with a communication disability. The idea that a person who can only move their eyes or who can't communicate should be abandoned for dead is horrifying to me- can you imagine being in a room and hearing, "Well, she can't communicate, so let's turn off this respirator..." and you want to scream like Horton's Whos, "I am here! I am here!" and your life being so little valued simply because you cannot speak? Are you "locked in another world"? Or are you trapped in this one? What if someone took the time to teach you another way to communicate, work with you to move your eyes, your hands, anything at all? Would you still want that respirator turned off? Or have them stop all food and water and just "let you die"? How scared and frustrated would you be?
How many kids live that way every day, because people who are not autistic, who are supposed to be special needs professionals, have no empathy for them? And then they wonder why the kid melts down?
3. Autistic people are violent, or prone to violence. Prove it. Show me the studies. Autistic people are likely more prone to frustration and acting out because of communication difficulties, but "Acting out" and "prone to violence" are two very different things. They are likely more prone to depression because of a lack of understanding, acceptance, and empathy towards them, but "depressed" and "violent" are two different things. Frustration and depression can result in increased aggression, but not just in autistic people. See #2.
Seriously, people, let's look for some real awareness. When going about your everyday lives, try to empathize with and respect others instead of judging them. Try to help rather than scorn. Know that we all have our own challenges and our own strengths, and try to share your talents and meet your challenges, will helping others do the same. We are all unique.
Thank goodness.
Wednesday, April 13, 2011
Sunday, April 10, 2011
Saturday, April 09, 2011
Last Day of Being Eight
Joey will be nine years old tomorrow.
Today, he got to be the catcher for his baseball team. He was awesome. But that is no surprise to any of you, I bet.
Tonight, I try to make Angry Birds into a cake and birthday decorations.
Happy Birthday, Little Buddha Buddy.
Today, he got to be the catcher for his baseball team. He was awesome. But that is no surprise to any of you, I bet.
Tonight, I try to make Angry Birds into a cake and birthday decorations.
Happy Birthday, Little Buddha Buddy.
Friday, April 08, 2011
Bullying, Part II
So Joey has stood up and taken his stand.
Now it's Andy's turn.
We've been having trouble with Little Annoying Dude (LAD) for a while now. He was in Andy's class last year, and proved himself Totally Annoying to Andy. He delighted in calling Andy names that would seem innocuous to adults (Andy Apple was a favorite), but drove Andy nutso-bonko. There were other small issues, little annoyances that suggested the child simply doesn't like Andy, finds Andy's reactions funny, and isn't very nice. Once of LAD's favorite modus operandi was to act really nice to Andy for a while, and play with him, and then start in with the annoying bits.
We spent some time with Andy talking about staying away from LAD, even when LAD was pretending to be nice. Find other people to play with, tell him that he's being annoying and mean, reporting to a teacher, that sort of thing. Things seemed to be going along as normal, everyday, playground antics. You know, kids, who don't always get along sort of thing. No big deal, right?
Welcome to this year.
Andy has been doing the "I don't want to go to school" dance for a while now, with the excuse of "there's too much work!" This sounded odd to me, and he was resistant to our advice that learning was supposed to be fun and makes you smart. But this week, the tune changed; instead of being too much work, it was too much LAD.
LAD is no longer in our class, but we still see him in the cafeteria and on the bus. Far more concerning is the widening of the stakes: LAD has recruited his little friends into the game. Some of those friends are in Andy's class. And on Andy's bus. And in the cafeteria. And on the playground. And...
Its one thing when you have one kid who is annoying you. It is a whole new problem when you have a whole group of kids who pop up throughout your day pulling the same annoyances, playing with you until LAD appears and then they turn away from you, poke you in the back of the head with pencils, I could go on.
We took several steps in quick succession. We made sure Andy told the child to stop. Andy felt if he went to the bus driver, the group would make it worse, so I stepped up onto the bus and said something myself. I then emailed Andy's teacher to warn her of the issue, as well as the guidance department.
And Andy had another hard day. So the next morning, we "missed" the bus, and I marched around to the office to write a note to the guidance counselor who had worked with Andy before in all his testing. Sometimes emails end up in the spam filter here- but notes go directly into the mailbox. I made the note fairly detailed- more than I have given here- and asked for help for Andy. I was unhappy that he was being bullied in this way, and that it had gotten worse. I was unhappy that he felt he could not go to an adult at school for fear of reprisals. I was unhappy that this had apparently gone on for a fairly long time with no one at school noticing.
Bullying is hard for adult radar to pick up. Innocuous names get shrugged off. If children suddenly change playmates in mid-recess, it is shrugged off as a new game. A child who might cry out in annoyance is told to hush and not interrupt. It is easy to miss the signs, to ignore them, to sweep them aside. All of these signs point to a very serious situation for the child being bullied and trying to get through their day.
Within an hour, I had an email from the guidance counselor. When I called another hour later, she had already pulled in the teachers- for both kids- and started identifying the other children involved, and was about to start pulling them in individually for a discussion of the situation. She was planning to get on the bus and make sure the kids were broken up. The cafeteria was re-arranged to keep LAD away from Andy. As our counselor said, "This is bullying. We don't play this. If you start seeing these signs again, don't wait. Call guidance in immediately. This is exactly what guidance is paid to handle."
We'll see how Andy's day goes on Monday.
Now it's Andy's turn.
We've been having trouble with Little Annoying Dude (LAD) for a while now. He was in Andy's class last year, and proved himself Totally Annoying to Andy. He delighted in calling Andy names that would seem innocuous to adults (Andy Apple was a favorite), but drove Andy nutso-bonko. There were other small issues, little annoyances that suggested the child simply doesn't like Andy, finds Andy's reactions funny, and isn't very nice. Once of LAD's favorite modus operandi was to act really nice to Andy for a while, and play with him, and then start in with the annoying bits.
We spent some time with Andy talking about staying away from LAD, even when LAD was pretending to be nice. Find other people to play with, tell him that he's being annoying and mean, reporting to a teacher, that sort of thing. Things seemed to be going along as normal, everyday, playground antics. You know, kids, who don't always get along sort of thing. No big deal, right?
Welcome to this year.
Andy has been doing the "I don't want to go to school" dance for a while now, with the excuse of "there's too much work!" This sounded odd to me, and he was resistant to our advice that learning was supposed to be fun and makes you smart. But this week, the tune changed; instead of being too much work, it was too much LAD.
LAD is no longer in our class, but we still see him in the cafeteria and on the bus. Far more concerning is the widening of the stakes: LAD has recruited his little friends into the game. Some of those friends are in Andy's class. And on Andy's bus. And in the cafeteria. And on the playground. And...
Its one thing when you have one kid who is annoying you. It is a whole new problem when you have a whole group of kids who pop up throughout your day pulling the same annoyances, playing with you until LAD appears and then they turn away from you, poke you in the back of the head with pencils, I could go on.
We took several steps in quick succession. We made sure Andy told the child to stop. Andy felt if he went to the bus driver, the group would make it worse, so I stepped up onto the bus and said something myself. I then emailed Andy's teacher to warn her of the issue, as well as the guidance department.
And Andy had another hard day. So the next morning, we "missed" the bus, and I marched around to the office to write a note to the guidance counselor who had worked with Andy before in all his testing. Sometimes emails end up in the spam filter here- but notes go directly into the mailbox. I made the note fairly detailed- more than I have given here- and asked for help for Andy. I was unhappy that he was being bullied in this way, and that it had gotten worse. I was unhappy that he felt he could not go to an adult at school for fear of reprisals. I was unhappy that this had apparently gone on for a fairly long time with no one at school noticing.
Bullying is hard for adult radar to pick up. Innocuous names get shrugged off. If children suddenly change playmates in mid-recess, it is shrugged off as a new game. A child who might cry out in annoyance is told to hush and not interrupt. It is easy to miss the signs, to ignore them, to sweep them aside. All of these signs point to a very serious situation for the child being bullied and trying to get through their day.
Within an hour, I had an email from the guidance counselor. When I called another hour later, she had already pulled in the teachers- for both kids- and started identifying the other children involved, and was about to start pulling them in individually for a discussion of the situation. She was planning to get on the bus and make sure the kids were broken up. The cafeteria was re-arranged to keep LAD away from Andy. As our counselor said, "This is bullying. We don't play this. If you start seeing these signs again, don't wait. Call guidance in immediately. This is exactly what guidance is paid to handle."
We'll see how Andy's day goes on Monday.
Tuesday, April 05, 2011
Standing Up and Saying No
We've been having some issues with Joey this year involving new interest in showing affection- trying to kiss and hug his friends and pat them on the behind (who are, incidentally, mostly girls), etc. We have had a talk about what asking people to touch or kiss or hug them, and that girls have to say "no" to kisses in school, and what is appropriate in school versus what is appropriate at home, that sort of thing. We also talked about patting someone on the bottom or being kissed in public being possibly embarrassing to the other person. Things seemed to be going well on this front.
However, one of Joey's classmates apparently thought it was funny that Joey liked to pat people on the bottom, and worked really hard to get Joey to to this to some poor young lady today. Naturally, the girl was upset, and the whole incident was reported, and we got a call from our Vice Principal...
... to tell us how proud she is of Joey, because when this child tried to get him to smack the girl's bottom, Joey said, "No. That is not appropriate!" and refused to do it.
Joey's dignity and courage: 1.
Bully: 0.
However, one of Joey's classmates apparently thought it was funny that Joey liked to pat people on the bottom, and worked really hard to get Joey to to this to some poor young lady today. Naturally, the girl was upset, and the whole incident was reported, and we got a call from our Vice Principal...
... to tell us how proud she is of Joey, because when this child tried to get him to smack the girl's bottom, Joey said, "No. That is not appropriate!" and refused to do it.
Joey's dignity and courage: 1.
Bully: 0.
Monday, April 04, 2011
Doomsday Averted (We Hope)
Well, the meeting wasn't nearly as horrible as we planned for, and we think... we think... we got the bottom line straightened out. We're futzing with the different environment possibilities for Joey to try to find ways to keep him small groups with few distractions and as much in the "main stream" as possible (where his academic needs can be better met). These changes require that he have an aide, the kind that knows when to stay in the background, and when to intervene: a "lifeguard." Understanding what we wanted was easy. Figuring out how to word it in an IEP was not.
The interesting resistance we got was about the use of sign language for visual cues. There seemed to be resistance to the use of signs from the speech therapist (how odd is that?) and resistance because "combining signs and picture cues might be confusing." We thought that odd, too. Joey is a smart little guy. He knows what he can access and use at a given moment, and he does very well with signs. It helps his speech and auditory comprehension immensely. Why would adding in using pictures for certain choices (such as what type of activity he wants for a break or what object he needs for sensory issues) to using signs as prompt (such as "listen", "wait", "ready?" etc) be confusing?
Whatever.
We are currently going over the IEP, because it is a lot of information and a lot of goals and a lot that could be misinterpreted by the next team, and we don't know yet who will be the teachers on that team. These teachers have had all year with him, and when they have a goal, they know what they "mean." But is this written to make it clear to the next teacher? Not sure.
Ah, IEP season. Just what everyone needs to lift their blood pressure and get the cobwebs swept from the mind.
The interesting resistance we got was about the use of sign language for visual cues. There seemed to be resistance to the use of signs from the speech therapist (how odd is that?) and resistance because "combining signs and picture cues might be confusing." We thought that odd, too. Joey is a smart little guy. He knows what he can access and use at a given moment, and he does very well with signs. It helps his speech and auditory comprehension immensely. Why would adding in using pictures for certain choices (such as what type of activity he wants for a break or what object he needs for sensory issues) to using signs as prompt (such as "listen", "wait", "ready?" etc) be confusing?
Whatever.
We are currently going over the IEP, because it is a lot of information and a lot of goals and a lot that could be misinterpreted by the next team, and we don't know yet who will be the teachers on that team. These teachers have had all year with him, and when they have a goal, they know what they "mean." But is this written to make it clear to the next teacher? Not sure.
Ah, IEP season. Just what everyone needs to lift their blood pressure and get the cobwebs swept from the mind.
Friday, April 01, 2011
IEP Weekend
This is it. IEP weekend. Our IEP is Monday. I need to run to the store and stock up on vodka and peach brandy. A little Grand Marnier would not be out of line. And plenty of wine.
It is going to be a long weekend.
The facts come to this: Joey's last summer program was a disaster. His year has been a regressive disaster. My style of working with the school and trying to be flexible while getting Joey the support he needs has been a complete and utter failure. We were promised a resource room and now we are learning that it is not coming, that they are going to jerry-rig something that looks like it is not only going to not meet Joey's needs, and not get the much-needed resource room in place, but may even be detrimental to several other students in the system.
Disaster.
So while I am here putting together my power point and going through the failed IEP and figuring out how to get Joey a proper aide and all the ugly, nasty, wretched misery of what will likely be a highly adversarial, nasty, ugly IEP meeting, know I raise a glass to all of you, who know exactly what I mean, how little sleep I am destined for, and how many tears are going to be shed the next few days.
Good health and good things to each and every one of you. Keep the faith. Light it up blue.
It is going to be a long weekend.
The facts come to this: Joey's last summer program was a disaster. His year has been a regressive disaster. My style of working with the school and trying to be flexible while getting Joey the support he needs has been a complete and utter failure. We were promised a resource room and now we are learning that it is not coming, that they are going to jerry-rig something that looks like it is not only going to not meet Joey's needs, and not get the much-needed resource room in place, but may even be detrimental to several other students in the system.
Disaster.
So while I am here putting together my power point and going through the failed IEP and figuring out how to get Joey a proper aide and all the ugly, nasty, wretched misery of what will likely be a highly adversarial, nasty, ugly IEP meeting, know I raise a glass to all of you, who know exactly what I mean, how little sleep I am destined for, and how many tears are going to be shed the next few days.
Good health and good things to each and every one of you. Keep the faith. Light it up blue.
Wednesday, March 30, 2011
My Proud Little Patriot
In super good news today, Andy got the Proud Patriot Award for his class for March. This is a pat on the back for kids who have been very well behaved and shown "good citizenship." His favorite girl friend also won it this month. They came bouncing in together. It was adorable. Her mom commented to me that they would someday have beautiful kids together. Hey, they've been best buds since they were 3. Who knows?
Eval Meetings Just Suck
How did the eval meeting go?
I learned nothing new.
I still have no idea what Joey can do, only how he compares to his peers on evals.
The good news is that he mostly tests at an average level for his age and grade.
The bad news is that these tests are administered and normed to non-disabled peers, so we have no idea how far above his grade level he can perform if given appropriate accommodations.
I have no idea what we are going to do with this information.
The other good news we got was that Mrs. H, our awesome teacher from the last school, is going to be split between the upper and lower elementary next year, so she will be working with Joey again. The bad news there is that they were supposed to hire somebody to be full-time in this school as a resource, and now they are splitting the resource between two schools, so that no one has Mrs. H to support them the whole day, as may be needed. But we'll have Mrs. H at our IEP on Monday, which rocks.
So, there was good, bad, ugly, and just useless. I hate eval meetings.
I learned nothing new.
I still have no idea what Joey can do, only how he compares to his peers on evals.
The good news is that he mostly tests at an average level for his age and grade.
The bad news is that these tests are administered and normed to non-disabled peers, so we have no idea how far above his grade level he can perform if given appropriate accommodations.
I have no idea what we are going to do with this information.
The other good news we got was that Mrs. H, our awesome teacher from the last school, is going to be split between the upper and lower elementary next year, so she will be working with Joey again. The bad news there is that they were supposed to hire somebody to be full-time in this school as a resource, and now they are splitting the resource between two schools, so that no one has Mrs. H to support them the whole day, as may be needed. But we'll have Mrs. H at our IEP on Monday, which rocks.
So, there was good, bad, ugly, and just useless. I hate eval meetings.
Tuesday, March 29, 2011
The Big Story of Angry Birds, by Joey
I got this from Joey's teacher this morning. Click on it. It is worth seeing.
Translation:
Reading log account
The Big Story of Angry Birds (Rovio)
1. The Pigs stole the birds' eggs without asking permission. And they started to get angry. The Yellow Bird got angrier then the blue one. The Red Bird got angrier than the Yellow Bird.
2. They want to get the eggs! (everyone) The Birds have got to trick the Pigs! The Mighty Eagle was there to save the day from the Pigs! The Birds don't want to get hurt!
3. The Next Morning the Pigs Asked permission to get one egg. And the birds said "Yes, you may have ONE egg.
THE END
Translation:
Reading log account
The Big Story of Angry Birds (Rovio)
1. The Pigs stole the birds' eggs without asking permission. And they started to get angry. The Yellow Bird got angrier then the blue one. The Red Bird got angrier than the Yellow Bird.
2. They want to get the eggs! (everyone) The Birds have got to trick the Pigs! The Mighty Eagle was there to save the day from the Pigs! The Birds don't want to get hurt!
3. The Next Morning the Pigs Asked permission to get one egg. And the birds said "Yes, you may have ONE egg.
THE END
Monday, March 28, 2011
Coming Soon: Re-Eval Meeting
When we had our last school meeting, we all noticed that Joey's evals were all woefully out of date, or oddly inaccurate. So we ordered a bunch of testing done, and on Wednesday, we get to look over what Joey looks like on paper.
In many ways, I love evals. They give me a little snapshot of what Joey is doing, what he isn't doing, hat he can do, and what he won't do. It also tells me a lot about the folks evaluating him, as they interpret what they see (and don't see), and how numbers on a paper relate to real actions and skills. Since Joey has so many splinter skills, it can tell me a lot when people act surprised, or talk about the problems of the testing tool, or what they think ought to be done based on the numbers. Some folks are brilliant evaluators. Some are mediocre. Some are idiots.
In many ways, I hate evals. To me, Joey is so brilliant, so creative and intelligent, so hard-working and really pitching, that seeing what that means on paper can be startlingly depressing. When you see how far he's come, and how hard he's fought to get there, to see those low percentiles and scores really takes the wind out of you. Oh, right, he's still disabled. But wow, this disabled? Really? And when I see how many kids are in worse shape than Joey, I wonder what their evals look like. And how their parents feel at these meetings. I get the feeling it ain't pretty.
I worry when I can be reading a story and have Joey just stand up and walk away, as if I wasn't even there. Andy asks questions, wants to look at the pictures, wants to talk about what might happen or what he knows is coming up in his favorites. Sometimes I think Joey is listening, but then he abruptly leaves. Or I think he's busy wiggling, and he comes back with something parroted from the book (so at least he's hearing me!) He has a lot of trouble remember what happens in a story from page to page. I think when I write my Joey Story, I am going to put him in it (to give it appeal) and keep it on a single spread (so we don't have to turn the pages).
I worry when he can't find an object that is right in front of him, or when he can't hand me something I am pointing to. Joint attention remains such a challenge for him. Following instructions in a set sequence is so frustrating. Using a button is still impossible. He's eight years old, and can't tie his shoes or button a pair of jeans. He can't follow dynamic pretend play. He can't maintain a conversation. Answering questions is still a challenge. Communicating events in his day is a distant dream for us.
What will the numbers say? Will they reflect his abilities and disabilities? Or even worse, will they not reflect his abilities and disabilities? How does the Joey on Paper relate to the Joey who is trying to survive school?
In many ways, I love evals. They give me a little snapshot of what Joey is doing, what he isn't doing, hat he can do, and what he won't do. It also tells me a lot about the folks evaluating him, as they interpret what they see (and don't see), and how numbers on a paper relate to real actions and skills. Since Joey has so many splinter skills, it can tell me a lot when people act surprised, or talk about the problems of the testing tool, or what they think ought to be done based on the numbers. Some folks are brilliant evaluators. Some are mediocre. Some are idiots.
In many ways, I hate evals. To me, Joey is so brilliant, so creative and intelligent, so hard-working and really pitching, that seeing what that means on paper can be startlingly depressing. When you see how far he's come, and how hard he's fought to get there, to see those low percentiles and scores really takes the wind out of you. Oh, right, he's still disabled. But wow, this disabled? Really? And when I see how many kids are in worse shape than Joey, I wonder what their evals look like. And how their parents feel at these meetings. I get the feeling it ain't pretty.
I worry when I can be reading a story and have Joey just stand up and walk away, as if I wasn't even there. Andy asks questions, wants to look at the pictures, wants to talk about what might happen or what he knows is coming up in his favorites. Sometimes I think Joey is listening, but then he abruptly leaves. Or I think he's busy wiggling, and he comes back with something parroted from the book (so at least he's hearing me!) He has a lot of trouble remember what happens in a story from page to page. I think when I write my Joey Story, I am going to put him in it (to give it appeal) and keep it on a single spread (so we don't have to turn the pages).
I worry when he can't find an object that is right in front of him, or when he can't hand me something I am pointing to. Joint attention remains such a challenge for him. Following instructions in a set sequence is so frustrating. Using a button is still impossible. He's eight years old, and can't tie his shoes or button a pair of jeans. He can't follow dynamic pretend play. He can't maintain a conversation. Answering questions is still a challenge. Communicating events in his day is a distant dream for us.
What will the numbers say? Will they reflect his abilities and disabilities? Or even worse, will they not reflect his abilities and disabilities? How does the Joey on Paper relate to the Joey who is trying to survive school?
Saturday, March 26, 2011
Tuesday, March 22, 2011
Alternatives Planning
IEP season is upon us. Run.
You may have noticed we have not had a stellar school year. We started with the disaster summer program, and spiraled into disaster from there. We have been "in the system" seven years now. This is the first year joey will meet none of his goals.
None.
We've had all sorts of promises made about next year, but nothing on paper yet. We have a meeting next week about all the updates to his evals and his testing and that sort of thing. We know what was working for him. We now can say clearly what does not.
Knowing that he thrives in a model offered at another school, is it "adequate" if he only survives in a new model? What if we think is not, in fact, surviving? And what do we do if all those promises are not worth the air moved to suggest them? What if we walk into that IEP and there is no new autism resource person to help for the next two years? Even delaying it a year would be a disaster we would need to reckon with.
If I need to pull Joey out of the school because of his deepening depression and deteriorating mental health, what options do I have for support and education for him? I had started a gameplan for having to do that when we hit middle school. Not now.
Having alternatives is not just about being prepared for the possibilities; there is also something of having a fallback position that strengthens your current one. It is easier to fight a school when you know you're ready to pack up your toys and go home if you need to. There is something to be able to say, "Give him what he needs. If I can dig up these resources to do it, you can do it- or pay for me to" and slap down that plan with the budget and costs, ready to go. Do it, or due process.
We're getting our ducks in a row. It's IEP season.
Bring it on.
You may have noticed we have not had a stellar school year. We started with the disaster summer program, and spiraled into disaster from there. We have been "in the system" seven years now. This is the first year joey will meet none of his goals.
None.
We've had all sorts of promises made about next year, but nothing on paper yet. We have a meeting next week about all the updates to his evals and his testing and that sort of thing. We know what was working for him. We now can say clearly what does not.
Knowing that he thrives in a model offered at another school, is it "adequate" if he only survives in a new model? What if we think is not, in fact, surviving? And what do we do if all those promises are not worth the air moved to suggest them? What if we walk into that IEP and there is no new autism resource person to help for the next two years? Even delaying it a year would be a disaster we would need to reckon with.
If I need to pull Joey out of the school because of his deepening depression and deteriorating mental health, what options do I have for support and education for him? I had started a gameplan for having to do that when we hit middle school. Not now.
Having alternatives is not just about being prepared for the possibilities; there is also something of having a fallback position that strengthens your current one. It is easier to fight a school when you know you're ready to pack up your toys and go home if you need to. There is something to be able to say, "Give him what he needs. If I can dig up these resources to do it, you can do it- or pay for me to" and slap down that plan with the budget and costs, ready to go. Do it, or due process.
We're getting our ducks in a row. It's IEP season.
Bring it on.
Sunday, March 20, 2011
Date night? Date Day!
JoeyAndyDad is off tomorrow- a personal national holiday! Woo-hoo! Woo-hoo!
We plan to clean, re-arrange furniture, and maybe have lunch. What, that doesn't sound romantic to you? Lunch, people! Together! By ourselves!
Hey, I have a husband who takes a day off of work to spend time with me. I don't think it gets much more romantic. Plus, I'm going to have something cleaned and new furniture arrangements into the deal.
I plan to talk the whole time, of course. IEP time is fast approaching. Joey sees the dentist again this week. We have baseball and soccer to coordinate. I have some new diet restrictions to replan meals around. And I have a whole day to flesh this stuff out with JoeyAndyDad.
JoeyAndyDad rocks.
We plan to clean, re-arrange furniture, and maybe have lunch. What, that doesn't sound romantic to you? Lunch, people! Together! By ourselves!
Hey, I have a husband who takes a day off of work to spend time with me. I don't think it gets much more romantic. Plus, I'm going to have something cleaned and new furniture arrangements into the deal.
I plan to talk the whole time, of course. IEP time is fast approaching. Joey sees the dentist again this week. We have baseball and soccer to coordinate. I have some new diet restrictions to replan meals around. And I have a whole day to flesh this stuff out with JoeyAndyDad.
JoeyAndyDad rocks.
Thursday, March 17, 2011
The Autismobile is back!
Our new Jade Lady. She seems in pretty good shape, so hopefully she'll last a while.
Tuesday, March 15, 2011
The testing dance
In two weeks, our IEP team will meet to discuss a variety of testing the team has been doing to evaluate Joey. When we last met, it became glaringly obvious that completing such evaluations had been overlooked by the school. He hadn't been properly evaluated since he entered the system... six years ago. There is a big difference between a 2-year-old and an 8-year old.
One of the section that had been done was some intelligence and talent testing for the gifted program, because I insisted it be done. I was told he didn't qualify. Yes, he was excellent in math and above-average in reading, but his intelligence testing was only 58%.
Right.
How do you test a child with a communication disorder?
I know there are many "non-verbal" tests out there, but we need to consider how those tests are administered and what they are testing, especially in a child with communication disorders. Showing Joey a picture instead of words and then asking him questions is still testing his disability rather than his ability- because for Joey, it is expressive language and processing questions that causes a problem.
How do you test someone who has a problem answering questions?
For many of us, solutions may seem obvious, as many of my readers deal with their child's communication disorders every day, and we fight to get needed information from them. We know how to win those battles, at least some of the time. And many of us know the tricks: rephrase the questions, make the question into an instruction, try a different activity where the skill must be displayed, use visual cues or language to elicit response, give the child plenty of time to process and respond, pay attention to the responses as a whole. I could go on.
Did Joey's test administrator know these tricks? Did s/he use them? To what extent? How much processing time was permitted? At what disadvantage was he put, and still come out at 58%?
And what do with a twice-special child who has trouble communicating?
One of the section that had been done was some intelligence and talent testing for the gifted program, because I insisted it be done. I was told he didn't qualify. Yes, he was excellent in math and above-average in reading, but his intelligence testing was only 58%.
Right.
How do you test a child with a communication disorder?
I know there are many "non-verbal" tests out there, but we need to consider how those tests are administered and what they are testing, especially in a child with communication disorders. Showing Joey a picture instead of words and then asking him questions is still testing his disability rather than his ability- because for Joey, it is expressive language and processing questions that causes a problem.
How do you test someone who has a problem answering questions?
For many of us, solutions may seem obvious, as many of my readers deal with their child's communication disorders every day, and we fight to get needed information from them. We know how to win those battles, at least some of the time. And many of us know the tricks: rephrase the questions, make the question into an instruction, try a different activity where the skill must be displayed, use visual cues or language to elicit response, give the child plenty of time to process and respond, pay attention to the responses as a whole. I could go on.
Did Joey's test administrator know these tricks? Did s/he use them? To what extent? How much processing time was permitted? At what disadvantage was he put, and still come out at 58%?
And what do with a twice-special child who has trouble communicating?
Tuesday, March 08, 2011
The Trouble with Books
You may have noticed that last week was Read Across America. And this week is some other reading-encouragement problem. And next week will be another one. And there was one a couple weeks ago. We're a literacy society- specifically, written literacy (as opposed to oral culture), and reading is a highly regarded life skill. Reading, writing, arithmetic. With al the emphasis on this in educational programs, I'm often surprised how little of it my students have when they arrive at college. But that's for a different blog.
Joey reads. There is no ifs, ands, or buts about that. I would go so far as to say he is hyperlexic, reading far above what he can understand. Trying to figure out what he can understand is highly problematic, as he has processing difficulties that make answering questions a huge challenge. I have learned to listen for comprehension in many ways, in many observations, many of which his current teachers have yet to understand or notice. With that kind of difficulty, I'm not too fussed about him having a B on his report card for reading, as those report cards throw him into the general stream, and that means he's above-average/strong even among the whole of his class peers. I'm a little fussed because I don't think it tells me much about his actual reading and comprehension skills, though.
The real problem, however, isn't evaluating what he can do. It is getting him to do it. Joey hates to read.
No, that's not exactly right. Joey hates to read stories.
He loves reading dictionaries. He's had a couple of books he reads, but he reads them a couple times, and then he's done with them- I suppose he has the story memorized in his head, so why read them again? Sometimes I can get him to read a science-fact book. Reading history, narrative, stories? Pulling teeth would be easier.
There are a number of problems with stories, especially fictional stories, that made them not fun for Joey. The whole narrative sequencing thing is trouble. Being able to remember what order events took place so that they make any sort of sense is a challenge. With no reference to reality and immediacy, the story sequence loses meaning.
Joey doesn't connect with most narratives. WHy should he care what Fluffy the Bunny did or said? Why should he care that Sally and Tommy went to the store? The store isn't one that he's ever seen, he's never met Sally or Tommy. Its just a jumble of strangeness with no connection to him or relevance to his life. He sees nothing of interest there.
I don't think Joey is able to form images in his head to see the story unfolding, either. This is something many of us do, as we hear the words of a good book. Most picture books are too abstract for Joey to follow the illustrations, and he takes one glance and has them, so that he spend no time exploring them. The information is recorded and catalogues and done. Using that catalogue to create new pictures is not something his brain seems to do.
The definition of "cold"? Excellent stuff. Useful. Catchy.
We tried mysteries like Encyclopedia Brown, trying to give him connections to characters and a puzzle to solve. We tried Wow Wow Wubbzy books, thinking his favorite character might intrigue him. We've tried science readers, picture books, chapter books, books in a series he caught any interest to at all.
Joey once said that reading hurts. We don't know what that means. Is he in physical pain? Does it hurt his feelings to be nagged about a task he doesn't enjoy, or finds useless?
His teacher was so excited last week when he voluntarily read a book for her, she actually emailed me with the news. A few months ago when he voluntarily read a book at home, I emailed her just as excited. They are email worthy incidents because they are so rare.
I am thinking about getting hold of some encyclopedias for Joey. Not kid ones, real ones. I want to see if he finds them interesting, like his dictionaries. One must remember the goal: we learn to read in order to gain access to knowledge. Not everyone is interested in social relationships and history; some want just the facts, please. If he'll read them, I'm all for it.
Joey reads. There is no ifs, ands, or buts about that. I would go so far as to say he is hyperlexic, reading far above what he can understand. Trying to figure out what he can understand is highly problematic, as he has processing difficulties that make answering questions a huge challenge. I have learned to listen for comprehension in many ways, in many observations, many of which his current teachers have yet to understand or notice. With that kind of difficulty, I'm not too fussed about him having a B on his report card for reading, as those report cards throw him into the general stream, and that means he's above-average/strong even among the whole of his class peers. I'm a little fussed because I don't think it tells me much about his actual reading and comprehension skills, though.
The real problem, however, isn't evaluating what he can do. It is getting him to do it. Joey hates to read.
No, that's not exactly right. Joey hates to read stories.
He loves reading dictionaries. He's had a couple of books he reads, but he reads them a couple times, and then he's done with them- I suppose he has the story memorized in his head, so why read them again? Sometimes I can get him to read a science-fact book. Reading history, narrative, stories? Pulling teeth would be easier.
There are a number of problems with stories, especially fictional stories, that made them not fun for Joey. The whole narrative sequencing thing is trouble. Being able to remember what order events took place so that they make any sort of sense is a challenge. With no reference to reality and immediacy, the story sequence loses meaning.
Joey doesn't connect with most narratives. WHy should he care what Fluffy the Bunny did or said? Why should he care that Sally and Tommy went to the store? The store isn't one that he's ever seen, he's never met Sally or Tommy. Its just a jumble of strangeness with no connection to him or relevance to his life. He sees nothing of interest there.
I don't think Joey is able to form images in his head to see the story unfolding, either. This is something many of us do, as we hear the words of a good book. Most picture books are too abstract for Joey to follow the illustrations, and he takes one glance and has them, so that he spend no time exploring them. The information is recorded and catalogues and done. Using that catalogue to create new pictures is not something his brain seems to do.
The definition of "cold"? Excellent stuff. Useful. Catchy.
We tried mysteries like Encyclopedia Brown, trying to give him connections to characters and a puzzle to solve. We tried Wow Wow Wubbzy books, thinking his favorite character might intrigue him. We've tried science readers, picture books, chapter books, books in a series he caught any interest to at all.
Joey once said that reading hurts. We don't know what that means. Is he in physical pain? Does it hurt his feelings to be nagged about a task he doesn't enjoy, or finds useless?
His teacher was so excited last week when he voluntarily read a book for her, she actually emailed me with the news. A few months ago when he voluntarily read a book at home, I emailed her just as excited. They are email worthy incidents because they are so rare.
I am thinking about getting hold of some encyclopedias for Joey. Not kid ones, real ones. I want to see if he finds them interesting, like his dictionaries. One must remember the goal: we learn to read in order to gain access to knowledge. Not everyone is interested in social relationships and history; some want just the facts, please. If he'll read them, I'm all for it.
Wednesday, March 02, 2011
Spread the Word to End the Word: Yes, It Hurts
It is March 2; the day we spread the word about how hurtful the word "retard" can be. It is always startling to realize how many people think Joey is retarded. Not long ago, he would have been labeled mentally retarded, and the efforts to educate him would have been curtailed, because it would have been assumed he couldn't learn. Not long before that, he would have been excluded from school altogether. Even now, trying to get people to understand that Joey is intelligent and wonderful is all too often a challenge.
All too often, we have moments where this hurtful word comes into our lives, and the need for more awareness, more understanding, more acceptance, more true diversity comes blazing up and smacks us in the face. Parents whispering at the spelling bee. Kids on the playground. People in restaurants, in museums, in malls, in parks...
The insistence to clinging to this horrible, hurtful language can be fierce and vicious. The violence of the response to my request for respectful courtesy increases the pain exponentially. It is one thing to be thoughtless and ignorant. It is quite another to know you have hurt someone's feelings, and have your response be that they need to shut up, or that they even deserve to be hurt. People treat their dogs better, and look upon them with more respect, than they sometimes look upon my son. My brilliant, loving, generous, intelligent, wonderful son, who tries with all his heart and soul to be a good friend to all and sundry, every day of his life.
If you still use this word, please stop. For respect of my son, for those who stand with him, and for any who are meeting their challenges the best way they can- including you- please, let this word fade into oblivion. We have so, so many more we can use, that are far more appropriate, and far less hurtful.
We have freedom of speech in this country. Use your freedoms responsibly.
All too often, we have moments where this hurtful word comes into our lives, and the need for more awareness, more understanding, more acceptance, more true diversity comes blazing up and smacks us in the face. Parents whispering at the spelling bee. Kids on the playground. People in restaurants, in museums, in malls, in parks...
The insistence to clinging to this horrible, hurtful language can be fierce and vicious. The violence of the response to my request for respectful courtesy increases the pain exponentially. It is one thing to be thoughtless and ignorant. It is quite another to know you have hurt someone's feelings, and have your response be that they need to shut up, or that they even deserve to be hurt. People treat their dogs better, and look upon them with more respect, than they sometimes look upon my son. My brilliant, loving, generous, intelligent, wonderful son, who tries with all his heart and soul to be a good friend to all and sundry, every day of his life.
If you still use this word, please stop. For respect of my son, for those who stand with him, and for any who are meeting their challenges the best way they can- including you- please, let this word fade into oblivion. We have so, so many more we can use, that are far more appropriate, and far less hurtful.
We have freedom of speech in this country. Use your freedoms responsibly.
Tuesday, March 01, 2011
Follow-Up: Toaster Friends
So I got a note from Mrs. C. Remember how she left the question box up in case anyone else had questions? Well, apparently someone put a note in the question box.
It read: "Joey IS a good friend!"
Toasters and hair dryers. They can live in harmony.
It read: "Joey IS a good friend!"
Toasters and hair dryers. They can live in harmony.
Sunday, February 27, 2011
Many Angles
One thing I love about friends and friendship is that we don't always agree. Connecting with people, for me, is about having new eyes to look at the world and new views of experience, and sharing them. I don't mind if we disagree, even on some very big issues. There is nothing so much fun as having involved conversations where I present my evidence and views, and get to hear and see someone else's, even if I don't agree.
Apparently, I am very weird.
I have some really excellent, intelligent friends. I love to talk about religion, and politics (though that is harder for me, because I always feel like I should more information). If we vary so very widely and vehemently that it would cause a problem, I'm probably not friends with you (for example, I don't believe you have the right to kill another person for any reason, though I will tolerate a difference in opinion as to defining "person"- but you probably aren't going to change my mind about my own definition). It sometimes takes me by surprise that others are shocked that I don't agree with them, or see the world a they do. For example, I was having a conversation with a friend the other morning, and she suddenly interpreted something I said as a personal comment. When I thought about it, I realized how I said what I said could very well be taken personally if you were taking the whole conversation very personally- and I apologized. I didn't mean it as personal, and I didn't want to hurt my friend's feelings; I just was trying to get a good look at her point of view, since we have very different political views and values, and she has a lot of information about her views that gives me something to think about (after all, media outlets all have their biases...) But I was surprised to realize that to her, it was personal. To me, it was just a discussion of possibilities, problems, and various possible solutions.
Religion is another topic I love that gets me into trouble. The fact that I am religious is potentially offensive to some folks. The fact that I don't take any religious narrative dead-set literally is very offensive to some other folks. Religion, by its very nature, tends to be interpreted personally. Take my post about how I believe in Santa Claus. What a variety of responses, opinions, and attitudes I got, and not just in the comment section! My head spun, especially with how personally so many people took the whole post... which missed the whole point.
To me, such conversations help get you thinking. It allows for connections, weaving thoughts and information together with a focus on a topic or hypothesis. To draw on a myriad of sources, thoughts, facts, and observations is the whole point of having discussions. You can't do that if everybody agrees with you all the time. Well, not very well. How would you really learn anything?
Apparently, I am very weird.
I have some really excellent, intelligent friends. I love to talk about religion, and politics (though that is harder for me, because I always feel like I should more information). If we vary so very widely and vehemently that it would cause a problem, I'm probably not friends with you (for example, I don't believe you have the right to kill another person for any reason, though I will tolerate a difference in opinion as to defining "person"- but you probably aren't going to change my mind about my own definition). It sometimes takes me by surprise that others are shocked that I don't agree with them, or see the world a they do. For example, I was having a conversation with a friend the other morning, and she suddenly interpreted something I said as a personal comment. When I thought about it, I realized how I said what I said could very well be taken personally if you were taking the whole conversation very personally- and I apologized. I didn't mean it as personal, and I didn't want to hurt my friend's feelings; I just was trying to get a good look at her point of view, since we have very different political views and values, and she has a lot of information about her views that gives me something to think about (after all, media outlets all have their biases...) But I was surprised to realize that to her, it was personal. To me, it was just a discussion of possibilities, problems, and various possible solutions.
Religion is another topic I love that gets me into trouble. The fact that I am religious is potentially offensive to some folks. The fact that I don't take any religious narrative dead-set literally is very offensive to some other folks. Religion, by its very nature, tends to be interpreted personally. Take my post about how I believe in Santa Claus. What a variety of responses, opinions, and attitudes I got, and not just in the comment section! My head spun, especially with how personally so many people took the whole post... which missed the whole point.
To me, such conversations help get you thinking. It allows for connections, weaving thoughts and information together with a focus on a topic or hypothesis. To draw on a myriad of sources, thoughts, facts, and observations is the whole point of having discussions. You can't do that if everybody agrees with you all the time. Well, not very well. How would you really learn anything?
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