We love you, Sunday. Keep the faith.
Wednesday, June 13, 2012
Tuesday, June 12, 2012
Reasons
I have gotten a variety of responses to my decision to pull Joey from the awards ceremony, instead of having him attend without getting an award. I wish more people would just comment here, but I'll just give folks a rundown of the email, comments, and other snippets from the various sources where I have mentioned, spoken of, posted about, or otherwise brought attention to the fact that Joey, despite being able to run rings around any student in his school and most of the adults when it comes to math, is not getting an award, and I am not sending him to the ceremony:
The vast majority of the comments have been more or less supportive of the decision.
A small, stinging minority have been negative, questioning my reasons for not sending him, and many of these also seem to think Joey should go to "learn to take disappointment." Why this stings is because, having seen how the world at large thinks about such things, these people are actually in the majority of opinion among the general population, though thankfully, not my own circle. I still find it deeply disturbing that people would feel this would be appropriate for Joey, especially in his current state of anxiety and depression.
I have a wide variety of reasons for not wanting Joey to be at that ceremony. Some are good reasons. Some you may not think so good. Just because I have one reason you may disagree with, doesn't and shouldn't discount all the other very excellent reasons for not sending him.
1. Safety. This is really the #1 A big reason I am taking him home. With Joey's current patterns, it is dangerous to send him into that ceremony. The school has amply proven they cannot keep him safe under these conditions- a large crowd, a huge and very frustrating disappointment, overwhelming emotions, embarrassment, and noise... he's going to bolt for that door. And they have proven they will not stop him. In the end, this trumps all other considerations, as far as I am concerned.
2. Depression. I want awards and award ceremonies to be positive, motivating events for Joey. When you are child who knows you can run rings around everyone you know in math, you likely expect to receive a math award and be recognized for such a talent. When you see other people, who you know you can run rings around, getting awards (which I believe firmly they have earned and should definitely get), and you don't, that is devastating and embarrassing. Just what we need is for Joey to think his talent is worthless, or that he's "the worst at math! he'll never get a math award!" Great idea. Not.
3. Pain. I find it not only painful for Joey, but painful for me. I know what it is like to have your hard work not only go unrecognized, but basically get punished for doing the extra work or taking on the challenge of higher levels. Selfish? As you like. It wouldn't be a big deal if I thought it was all projection; but when I see the anger, frustration, depression, and disappointment explode from my child, what I see and feel is the pain. I'm still bitter, and I would rather keep Joey from as much of the gall as possible.
4. Coping Skills. Joey is still learning these skills. When he was still learning those skills and he was 6, it wasn't as big a deal if he made a mistake and melted down, he wasn't alone. People are less understanding of a very large 10-year-old who melts down when his name isn't called, and he has no way of containing the overwhelming emotion and depression.
5. Judgement. I will never forget sitting in that spelling bee, listening to parents laugh at my child... only to see their faces an hour later when he almost won. It is good for people to understand that kids with disabilities are also intelligent. It is very important for some families whose kids are in Joey's classes to realize he is an asset to that room, and academically capable. By ignoring his strength in this way, they also ignore his value, and leads to people dismissing him and even complaining about why one of "those kids" is in the classroom "distracting" their kid. There are many, many people in this world who think Joey is stupid and a drain of resources, and should not be allowed in a mainstream classroom. He works hard to overcome his challenges in communication to express his talents- more than other kids do, plus being able to do the work. But now we find ourselves back at our last post, and whining about how awards are determined.
In other words, Joey's school awards appear to gauge how well students make toast, when my kid is a hair dryer. They ignore the fact that Joey dries hair better than everyone else, even in drying class, because he isn't drying toast.
In the end, the fact that Joey will not get an award is wrong in so many ways, it isn't a joke. Joey is not stupid, and knows he is the best math student in the school. He knows what awards are, and that they are badges of honor for being good at something. He's going to notice when his talent and hard work is overlooked.
The school is just way too close to the highway.
The vast majority of the comments have been more or less supportive of the decision.
A small, stinging minority have been negative, questioning my reasons for not sending him, and many of these also seem to think Joey should go to "learn to take disappointment." Why this stings is because, having seen how the world at large thinks about such things, these people are actually in the majority of opinion among the general population, though thankfully, not my own circle. I still find it deeply disturbing that people would feel this would be appropriate for Joey, especially in his current state of anxiety and depression.
I have a wide variety of reasons for not wanting Joey to be at that ceremony. Some are good reasons. Some you may not think so good. Just because I have one reason you may disagree with, doesn't and shouldn't discount all the other very excellent reasons for not sending him.
1. Safety. This is really the #1 A big reason I am taking him home. With Joey's current patterns, it is dangerous to send him into that ceremony. The school has amply proven they cannot keep him safe under these conditions- a large crowd, a huge and very frustrating disappointment, overwhelming emotions, embarrassment, and noise... he's going to bolt for that door. And they have proven they will not stop him. In the end, this trumps all other considerations, as far as I am concerned.
2. Depression. I want awards and award ceremonies to be positive, motivating events for Joey. When you are child who knows you can run rings around everyone you know in math, you likely expect to receive a math award and be recognized for such a talent. When you see other people, who you know you can run rings around, getting awards (which I believe firmly they have earned and should definitely get), and you don't, that is devastating and embarrassing. Just what we need is for Joey to think his talent is worthless, or that he's "the worst at math! he'll never get a math award!" Great idea. Not.
3. Pain. I find it not only painful for Joey, but painful for me. I know what it is like to have your hard work not only go unrecognized, but basically get punished for doing the extra work or taking on the challenge of higher levels. Selfish? As you like. It wouldn't be a big deal if I thought it was all projection; but when I see the anger, frustration, depression, and disappointment explode from my child, what I see and feel is the pain. I'm still bitter, and I would rather keep Joey from as much of the gall as possible.
4. Coping Skills. Joey is still learning these skills. When he was still learning those skills and he was 6, it wasn't as big a deal if he made a mistake and melted down, he wasn't alone. People are less understanding of a very large 10-year-old who melts down when his name isn't called, and he has no way of containing the overwhelming emotion and depression.
5. Judgement. I will never forget sitting in that spelling bee, listening to parents laugh at my child... only to see their faces an hour later when he almost won. It is good for people to understand that kids with disabilities are also intelligent. It is very important for some families whose kids are in Joey's classes to realize he is an asset to that room, and academically capable. By ignoring his strength in this way, they also ignore his value, and leads to people dismissing him and even complaining about why one of "those kids" is in the classroom "distracting" their kid. There are many, many people in this world who think Joey is stupid and a drain of resources, and should not be allowed in a mainstream classroom. He works hard to overcome his challenges in communication to express his talents- more than other kids do, plus being able to do the work. But now we find ourselves back at our last post, and whining about how awards are determined.
In other words, Joey's school awards appear to gauge how well students make toast, when my kid is a hair dryer. They ignore the fact that Joey dries hair better than everyone else, even in drying class, because he isn't drying toast.
In the end, the fact that Joey will not get an award is wrong in so many ways, it isn't a joke. Joey is not stupid, and knows he is the best math student in the school. He knows what awards are, and that they are badges of honor for being good at something. He's going to notice when his talent and hard work is overlooked.
The school is just way too close to the highway.
Update: When Discrimination Comes to the Awards Ceremony
The excuse is that he did not have the "highest GPA" in the class, that several students had "higher GPAs." In other words, several students had higher raw scores on homework and classwork. I can only assume a few things in this:
1. The award is based solely on raw scores, not on the level of work being completed. Joey was often doing higher level assignments or extra work, often on the 5th grade level, for a greater part of the week of each lesson.
2. There is a limited number of awards permitted per class. Hence, the reliance on #1.
In other words, by ensuring he was challenged in class, we put him at disadvantage to be recognized for those efforts. It is a common enough discrimination displayed towards students with gifts, and one that results in the spiral down to mediocrity and the lowest denominator.
My plan is to simply skip the ceremony and keep Joey with me, when we will be vociferously celebrating his accomplishments in math in a way that makes it clear how proud we are of his strengths and perseverance. The school has failed to address his safety in crowds, or when he is frustrated or disappointed to an overwhelming degree. We simply cannot take the chance of having him realize that he is again to be ignored, and have him run out the door. I also think Joey deserves to be recognized by his school as intelligent, an asset in the classroom. If the school itself refuses to do this, then I will be sure he understands it himself: that he has value, that he has strength, and that he is much loved.
I believe this is a far better lesson than the alternative.
1. The award is based solely on raw scores, not on the level of work being completed. Joey was often doing higher level assignments or extra work, often on the 5th grade level, for a greater part of the week of each lesson.
2. There is a limited number of awards permitted per class. Hence, the reliance on #1.
In other words, by ensuring he was challenged in class, we put him at disadvantage to be recognized for those efforts. It is a common enough discrimination displayed towards students with gifts, and one that results in the spiral down to mediocrity and the lowest denominator.
My plan is to simply skip the ceremony and keep Joey with me, when we will be vociferously celebrating his accomplishments in math in a way that makes it clear how proud we are of his strengths and perseverance. The school has failed to address his safety in crowds, or when he is frustrated or disappointed to an overwhelming degree. We simply cannot take the chance of having him realize that he is again to be ignored, and have him run out the door. I also think Joey deserves to be recognized by his school as intelligent, an asset in the classroom. If the school itself refuses to do this, then I will be sure he understands it himself: that he has value, that he has strength, and that he is much loved.
I believe this is a far better lesson than the alternative.
Monday, June 11, 2012
When Discrimination Comes To the Awards Ceremony
Once again, Joey will get no math award this year. We are awaiting final confirmation of this, but I have no letter saying he is getting one. Once again it is a shock, since guess who is the top math student in the class yet again?
Why do educators not understand the importance of recognizing a student's strengths? Especially a student who has many, many challenges?
You can send me any excuse you want. Not recognizing Joey's math prowess teaches Joey a single, poignant and heartbreaking lesson as a child: his talent and gift is of no worth. His work is of no value. The one thing he does spectacularly well is of no consequence.
Then we wonder why our schools are struggling academically.
Think of it this way: if you are good at your job, you expect to have better salary and perhaps look forward to a nod from the boss. Certainly, if we do a job well and there is a big ceremony once a year to acknowledge people who do their job well, we expect a mention. As an adult, we are equipped with certain tools for coping when and if that is not forthcoming- and very often, we start looking for another job.
As a child, what is the purpose of these "awards ceremonies"? If these certificates are supposed to be motivation for kids to enjoy school and work hard, shouldn't they be used to, well, motivate?
The excuse last year was that no one seemed to know who was in charge of nominating Joey for an award. If that is the excuse I get this year, I think I may have to get that warpaint back out, and make sure everyone understands not only that this is discrimination, but why it is discrimination. Basically saying, "oops, your kid is special ed so they don't get nominated" is, frankly, bullshit.
So I am dying to hear what the excuse is this time.
Update: His case manager, the Awesome Ms. H, is also looking into what the excuse is this time. I will keep you posted.
Why do educators not understand the importance of recognizing a student's strengths? Especially a student who has many, many challenges?
You can send me any excuse you want. Not recognizing Joey's math prowess teaches Joey a single, poignant and heartbreaking lesson as a child: his talent and gift is of no worth. His work is of no value. The one thing he does spectacularly well is of no consequence.
Then we wonder why our schools are struggling academically.
Think of it this way: if you are good at your job, you expect to have better salary and perhaps look forward to a nod from the boss. Certainly, if we do a job well and there is a big ceremony once a year to acknowledge people who do their job well, we expect a mention. As an adult, we are equipped with certain tools for coping when and if that is not forthcoming- and very often, we start looking for another job.
As a child, what is the purpose of these "awards ceremonies"? If these certificates are supposed to be motivation for kids to enjoy school and work hard, shouldn't they be used to, well, motivate?
The excuse last year was that no one seemed to know who was in charge of nominating Joey for an award. If that is the excuse I get this year, I think I may have to get that warpaint back out, and make sure everyone understands not only that this is discrimination, but why it is discrimination. Basically saying, "oops, your kid is special ed so they don't get nominated" is, frankly, bullshit.
So I am dying to hear what the excuse is this time.
Update: His case manager, the Awesome Ms. H, is also looking into what the excuse is this time. I will keep you posted.
Saturday, June 09, 2012
Disasters Averted
We are arriving at the last week of school. We survived another year. Kinda.
Joey's school has a big after-school party the Friday before school ends. Joey was really excited about it, and insisted he wanted to go. Ever been to a school party? Well, for ours, there's a basic set-up. They have a moonbounce outside, in the central courtyard. This may sound like a good idea, until you realize there is one moonbounce for an entire school of about 1000 kids. And their siblings. Right. They also set up a bunch of chalk in that courtyard, so that kids can write or draw on the pavements, which is as good an idea as the single moonbounce for 1000 kids is bad. Inside, they have three different crafts set up for kids to do, a dance floor with lots of very loud music and flashy lights, and a table with drinks and snacks (parents are asked to bring a box of drinks or a box of snacks as the "entrance fee" to the party, and that works really well). This year, we also had a cakewalk (well, a cupcake walk) in a side room. All in all, as school parties go, Joey's school does a really decent job of putting one on.
Unless, of course, you are autistic and sound-sensitive and heat-sensitive. Then it could be a little tricky.
I, like an idiot, bowed to my child's repeated requests to attend this event, and took he and his brother to the party. I wasn't a complete idiot, though. I fed them before we went. I did my best to have them all regulated and ready to go. Really.
It started out not too bad. The only places to sit were the lunch tables, which have those itty bitty round seats, and I am too fat to fit (sorry, folks, that is the truth. There was only one free chair available, and since I fell and killed a knee, I started to sit in it- until someone started yelling from across the room, "That's mine! That's mine!" It was a lady who was older and rounder than me, I guessed someone's grandmother come to watch the fun, and ceded the seat (after all, if it was my mom, I'd want her to have a chair, too).
That's right. I went to this highly potentially explosive event, by myself, with two sound-sensitive boys and a bad knee. You know this isn't going to turn out well, right? What was I thinking?
Well, it seemed to be going swimmingly. The boys were dancing, having a lot of fun, and I don't think I've smiled so wide in weeks. I would have danced with them, except for my knee. Then Dance Contest time arrived. The DJs played a "practice" line dancing song, then they went with another one for the contest. All seemed to be going great, the boys were having fun and dancing...
Life has a funny way of turning on a dime for us. They were picking winners (which, to be honest, is mostly done at random) and Andy was asking me if he could go outside and get in the moonbounce line. There were plenty of adults we knew out there, I was standing where I could see that line, so I agreed, and he bounced happily off. I turned back to the dancing children.
Where was Joey?
I blinked.
He was gone.
I glanced out at the moonbounce and courtyard, but he wasn't there. I peeked into the cakewalk room, as he loves the music teacher and loves cupcakes. No Joey. I checked the dance floor again. No Joey. I started moving though the cafe-gym, scanning for him. No Joey.
Now, at our school, we have three top people to talk to. We have a principal, a vice-principal, and a person who is called the "principal's assistant" who is kind of a second vice-principal. This assistant person was welcoming families at the door and handing out glowsticks. He is also very familiar with my son. I saw him gesticulating at me, and my heart went to water. Those motions could only mean that Joey had gone out that door.
I believe the man said something like, "I thought he was going to the car" as I whipped by him, but when I looked, Joey wasn't at the car. Nor was he in the parking lot. Another moment, and I broke into a run- he was beyond the close lot, on the sidewalk toward the farther lot and the road that leads out to the major state highway, and he was moving at his pretty steady bolt-trot. The one no one thinks is fast until you realize he's gone.
When the doctor said, "stay off your knee," I don't think he meant "do a hard run for a quarter mile to catch your son."
Folks, I was fortunate. God was looking out for me. Angels exist. And this time, they materialized into the shape of our friends, Joey's best bud D and his mom. They had arrived and had to park in that far lot, and were walking towards the school. They turned the corner of the walk just as Joey arrived to that point. Even at a hard run, I was not even close to catching him; but D's mom knew to stop him, and managed the feat (which is not an easy one when Joey is in full bolt).
The trigger? He didn't win the dance contest. In a single second, we had gone from brilliantly happy to devastated bolting. I had taken my eyes off him just long enough for my other child to ask me a question. It happens that fast. If D and his mom had not appeared, I could easily have lost him; he would certainly have made it to the road, and probably the highway, before I could have caught him.
It happens that fast.
So I hope you'll forgive me if I start blogging about knee recovery, followed by serious weightloss and then running training. Someone's got to be able to catch this child before we have a serious catastrophe.
Joey's school has a big after-school party the Friday before school ends. Joey was really excited about it, and insisted he wanted to go. Ever been to a school party? Well, for ours, there's a basic set-up. They have a moonbounce outside, in the central courtyard. This may sound like a good idea, until you realize there is one moonbounce for an entire school of about 1000 kids. And their siblings. Right. They also set up a bunch of chalk in that courtyard, so that kids can write or draw on the pavements, which is as good an idea as the single moonbounce for 1000 kids is bad. Inside, they have three different crafts set up for kids to do, a dance floor with lots of very loud music and flashy lights, and a table with drinks and snacks (parents are asked to bring a box of drinks or a box of snacks as the "entrance fee" to the party, and that works really well). This year, we also had a cakewalk (well, a cupcake walk) in a side room. All in all, as school parties go, Joey's school does a really decent job of putting one on.
Unless, of course, you are autistic and sound-sensitive and heat-sensitive. Then it could be a little tricky.
I, like an idiot, bowed to my child's repeated requests to attend this event, and took he and his brother to the party. I wasn't a complete idiot, though. I fed them before we went. I did my best to have them all regulated and ready to go. Really.
It started out not too bad. The only places to sit were the lunch tables, which have those itty bitty round seats, and I am too fat to fit (sorry, folks, that is the truth. There was only one free chair available, and since I fell and killed a knee, I started to sit in it- until someone started yelling from across the room, "That's mine! That's mine!" It was a lady who was older and rounder than me, I guessed someone's grandmother come to watch the fun, and ceded the seat (after all, if it was my mom, I'd want her to have a chair, too).
That's right. I went to this highly potentially explosive event, by myself, with two sound-sensitive boys and a bad knee. You know this isn't going to turn out well, right? What was I thinking?
Well, it seemed to be going swimmingly. The boys were dancing, having a lot of fun, and I don't think I've smiled so wide in weeks. I would have danced with them, except for my knee. Then Dance Contest time arrived. The DJs played a "practice" line dancing song, then they went with another one for the contest. All seemed to be going great, the boys were having fun and dancing...
Life has a funny way of turning on a dime for us. They were picking winners (which, to be honest, is mostly done at random) and Andy was asking me if he could go outside and get in the moonbounce line. There were plenty of adults we knew out there, I was standing where I could see that line, so I agreed, and he bounced happily off. I turned back to the dancing children.
Where was Joey?
I blinked.
He was gone.
I glanced out at the moonbounce and courtyard, but he wasn't there. I peeked into the cakewalk room, as he loves the music teacher and loves cupcakes. No Joey. I checked the dance floor again. No Joey. I started moving though the cafe-gym, scanning for him. No Joey.
Now, at our school, we have three top people to talk to. We have a principal, a vice-principal, and a person who is called the "principal's assistant" who is kind of a second vice-principal. This assistant person was welcoming families at the door and handing out glowsticks. He is also very familiar with my son. I saw him gesticulating at me, and my heart went to water. Those motions could only mean that Joey had gone out that door.
I believe the man said something like, "I thought he was going to the car" as I whipped by him, but when I looked, Joey wasn't at the car. Nor was he in the parking lot. Another moment, and I broke into a run- he was beyond the close lot, on the sidewalk toward the farther lot and the road that leads out to the major state highway, and he was moving at his pretty steady bolt-trot. The one no one thinks is fast until you realize he's gone.
When the doctor said, "stay off your knee," I don't think he meant "do a hard run for a quarter mile to catch your son."
Folks, I was fortunate. God was looking out for me. Angels exist. And this time, they materialized into the shape of our friends, Joey's best bud D and his mom. They had arrived and had to park in that far lot, and were walking towards the school. They turned the corner of the walk just as Joey arrived to that point. Even at a hard run, I was not even close to catching him; but D's mom knew to stop him, and managed the feat (which is not an easy one when Joey is in full bolt).
The trigger? He didn't win the dance contest. In a single second, we had gone from brilliantly happy to devastated bolting. I had taken my eyes off him just long enough for my other child to ask me a question. It happens that fast. If D and his mom had not appeared, I could easily have lost him; he would certainly have made it to the road, and probably the highway, before I could have caught him.
It happens that fast.
So I hope you'll forgive me if I start blogging about knee recovery, followed by serious weightloss and then running training. Someone's got to be able to catch this child before we have a serious catastrophe.
Friday, June 08, 2012
Thursday, June 07, 2012
Oopsie! We lost your kid again!
You know, it is bad enough to entitle something "Oopsie, we lost your kid!" It is one of those titles that makes parents- ANY parents- cringe in fear and anger. Adding the "again"? Holy frijoles.
Joey has been having a resurgence of fight-flight behavior. In other words, he's been doing a runner. His favorite moment is PE. After all, movement takes extra energy, especially when you have vestibular issues, propioceptive issues, and problems with bilateral coordination and crossing midline.
Part of the problem is, of course, that most folks don't recognize that he has this issues. He just looks like a clumsy, chubby little guy who isn't very good at games. Consequently, they don't expect him to move very fast. They also just let him flounder in a game.
Part of the problem is Joey wants to do well at everything he does. Since his disability is being dismissed, he isn't getting appropriate support to be successful in PE. This becomes a horrifying spiral. Note the "chubby."
Part of the problem is the games they are choosing to play. I never liked dodgeball. Can you imagine Joey being smacked in the head or back by a ball? How is he going to react? How is he going to feel? Not to mention the swirl of children such a game involves, so that Joey i already overwhelmed with crowd, noise, motion all around him.
Naturally, he gets frustrated, upset, confused, and... runs for it.
By now, I would think everyone was aware that PE is a Danger Zone. We have had an aide hired to help with such moments, and this is the prime moment when Joey may need support.
Unfortunately, our aide is having some difficulties grasping how to speak Joey, how to read his cues and signs and understand how he communicates. Consequently, he escapes.
Then, remember that "they don't expect him to move very fast"? That may be true if he's trying to play a game. When bolting? He's like lightning- unpredictable and gone in a flash.
This time, he got halfway across the parking lot. That means halfway to a major state road. He didn't get farther because of quick thinking by two of his teachers, who were more accustomed to him. Both are now pretty rattled by the experience, but they did what they needed to do to calm him enough to stop him from getting to the road.
Now, note the "again."
Joey has resumed bolting at school in the last few weeks, corresponding to the arrival of the new aide. Yes, we have had meeting and meetings and meetings. Now we are considering options.
Not. Happy.
Joey has been having a resurgence of fight-flight behavior. In other words, he's been doing a runner. His favorite moment is PE. After all, movement takes extra energy, especially when you have vestibular issues, propioceptive issues, and problems with bilateral coordination and crossing midline.
Part of the problem is, of course, that most folks don't recognize that he has this issues. He just looks like a clumsy, chubby little guy who isn't very good at games. Consequently, they don't expect him to move very fast. They also just let him flounder in a game.
Part of the problem is Joey wants to do well at everything he does. Since his disability is being dismissed, he isn't getting appropriate support to be successful in PE. This becomes a horrifying spiral. Note the "chubby."
Part of the problem is the games they are choosing to play. I never liked dodgeball. Can you imagine Joey being smacked in the head or back by a ball? How is he going to react? How is he going to feel? Not to mention the swirl of children such a game involves, so that Joey i already overwhelmed with crowd, noise, motion all around him.
Naturally, he gets frustrated, upset, confused, and... runs for it.
By now, I would think everyone was aware that PE is a Danger Zone. We have had an aide hired to help with such moments, and this is the prime moment when Joey may need support.
Unfortunately, our aide is having some difficulties grasping how to speak Joey, how to read his cues and signs and understand how he communicates. Consequently, he escapes.
Then, remember that "they don't expect him to move very fast"? That may be true if he's trying to play a game. When bolting? He's like lightning- unpredictable and gone in a flash.
This time, he got halfway across the parking lot. That means halfway to a major state road. He didn't get farther because of quick thinking by two of his teachers, who were more accustomed to him. Both are now pretty rattled by the experience, but they did what they needed to do to calm him enough to stop him from getting to the road.
Now, note the "again."
Joey has resumed bolting at school in the last few weeks, corresponding to the arrival of the new aide. Yes, we have had meeting and meetings and meetings. Now we are considering options.
Not. Happy.
Sunday, June 03, 2012
Interpreting Email
Ok, so I have this really weird email in front of me- well, two, actually from Andy's teacher. Andy now has an IEP, categorized as "specific learning disability" and identified as having dysgraphia. We have also learned he has a visual impairment, insufficient convergence. He also is diagnosed with ADHD, but we were denied service solely because of his ADHD because he "tested in normal range."
In the first email, the teacher mentions we may want to consider what accommodations he will need to complete his SOLs because of his ADHD. The next email is the oddity- it seems to imply we can't consider accommodations because of his ADHD. To be specific, she initially asks "do you want to look into accommodations?" then says "after talking to Ms. C, my question isn't valid."
Why not?
It was my understanding that once you have an IEP, the child's needs are to be considered and met. Period. Not "just those needs pertaining to dysgraphia, because that's why he has an IEP." You don't get a separate 504 plan when you have an IEP.
Anybody else having this issue? Is it just me?
In the first email, the teacher mentions we may want to consider what accommodations he will need to complete his SOLs because of his ADHD. The next email is the oddity- it seems to imply we can't consider accommodations because of his ADHD. To be specific, she initially asks "do you want to look into accommodations?" then says "after talking to Ms. C, my question isn't valid."
Why not?
It was my understanding that once you have an IEP, the child's needs are to be considered and met. Period. Not "just those needs pertaining to dysgraphia, because that's why he has an IEP." You don't get a separate 504 plan when you have an IEP.
Anybody else having this issue? Is it just me?
Sunday, May 27, 2012
Summer Begins!
Yes, indeed, Pool Days are here! I love pool days, where I can at least spend my time in a chair with an audiobook as I watch the boys splash. I am very fond of audiobooks.
Joey takes a plunge
We have jumped right in with both feet, heading to the pool after lunch for cooling off and getting a lot of exercise and sensory input. Both the boys love water. I just wish they loved swim lessons.
Splashing in the pool.
They have provided themselves with all the essentials: water guns, splash toys, and balls.
Oh, and goggles. Can't forget the goggles.
Andy usually finds a few friends to play water guns and ball games, and today he even had a game going that included jumping off the diving board. Joey has been pretending he is Mario, going through water levels. And if that last sentence was Greek to you, count yourself fortunate.
Andy enjoying the COLD water.
Unlike our first summer at the pool, we are handling the crowds and the noise and the overload very well. I am, of course, positioning myself just in case, and arriving prepared to act- just in case. Hence, not a lot of swimming for me, and I plan on purchasing a few new audiobooks. I'm thinking of picking up a Dickens, and maybe a fluffy romance, a la Jane Austen. I haven't read Northanger Abbey in ages.
Andy jumps in!
You know, there is still nothing quite as heart-stopping as watching your child jump off a diving board.
Just saying.
To Infinity, and Beyond!
Here's to a happy summer, everybody! Now we just need school to get out...
Thursday, May 24, 2012
Ryan Makes the Call
You know, after a really long week, and in view of what may likely be a very long weekend, it is nice for Ryan to step in and make those pesky phone calls.
I must admit though, when doing my Ryans, I am usually inspired by my own awesome husband, JoeyAndyDad. It's easier to write them when I image JoeyAndyDad in the pics.
Did I mention we had a bad week?
Yeah one of those weeks.
Totally. I earned it.
With a bottle of wine and no luggage. Just book us a room, please.
Don't forget to check out other great Ryan Gosling adventures!
Wednesday, May 23, 2012
What a week we are having.
I would love to write something light and happy, but honestly, I'm busy with ice packs and meetings, trying to reduce the need for ice packs. Instead, I will leave you with some awesome pictures of happy moments of the week.
Don't worry, they will help cheer me up, too.
Don't worry, they will help cheer me up, too.
A friend at the park
At Andy's Birthday Dinner
Sonic at the Park
Sonic and Luigi at the Park
Friends at home
Sonic and Shadow
Happy Birthday, Sonic!
Monday, May 21, 2012
Friday, May 18, 2012
Thursday, May 17, 2012
What I Do: Volunteer Luncheon
Today was the lunch for volunteers at the lower elementary. It was really very nice. It was a lovely little buffet, and the teachers were also allowed to come in and get free lunch (which I think is awesome), and then you sat down and ate, and maybe talked to people. Mostly, I talked to one of the teachers I volunteer for, and with Andy's teacher, but I also got to meet a couple of other volunteers doing awesome things, like the gentleman who volunteers in his daughter's classroom because his workshift doesn't let him see her when she's home, and the very nice lady who does stuff in the library. Seriously, volunteers at schools? They totally rock. I kind of forget what I do is considered on par with the wonderful helping these other folks do.
So came the question, when one is at a volunteer luncheon and knows, um, nobody: "So... who do you volunteer for? What do you do?"
Apparently, most volunteers come in and do one of three things:
They run activities, like the book fair or a special assignment, like when the kids have a project in class that requires extra hands;
They come in regularly and help out in the classroom, mostly prepping material for their kid's teacher;
They come in regularly and help out with engaging the kids while their kid's teacher runs small groups or 1:1.
And then I come out with, "I teach sign language in three of the special ed kindergarden classrooms" followed up with, "My kid is not a kindergardener; he's in second grade." And next year, I totally plan on continuing the program. In fact, if I can get myself and my money together, I'm going to try for certification through Signing Time to be an instructor. Then I want to expand the program to include more classrooms. Signing is great for getting around the processing speech problems among the kids in the SpEd rooms, so I don't see why it wouldn't make for great visual prompts and supports in other classrooms, too. They teach the kids Spanish, why not ASL?
Yeah, that's what I do. At least it apparently made for nice lunchtime conversation; and most folks I met wanted to learn a sign, which I thought was awesome. Every little bit helps, right?
So came the question, when one is at a volunteer luncheon and knows, um, nobody: "So... who do you volunteer for? What do you do?"
Apparently, most volunteers come in and do one of three things:
They run activities, like the book fair or a special assignment, like when the kids have a project in class that requires extra hands;
They come in regularly and help out in the classroom, mostly prepping material for their kid's teacher;
They come in regularly and help out with engaging the kids while their kid's teacher runs small groups or 1:1.
And then I come out with, "I teach sign language in three of the special ed kindergarden classrooms" followed up with, "My kid is not a kindergardener; he's in second grade." And next year, I totally plan on continuing the program. In fact, if I can get myself and my money together, I'm going to try for certification through Signing Time to be an instructor. Then I want to expand the program to include more classrooms. Signing is great for getting around the processing speech problems among the kids in the SpEd rooms, so I don't see why it wouldn't make for great visual prompts and supports in other classrooms, too. They teach the kids Spanish, why not ASL?
Yeah, that's what I do. At least it apparently made for nice lunchtime conversation; and most folks I met wanted to learn a sign, which I thought was awesome. Every little bit helps, right?
Tuesday, May 15, 2012
Moms Rock My World
I just wanted to pop in and say, you moms and dads, raising your awesome kids, or helping raise awesome kids even if you aren't a mom or dad yet, you guys are awesome. And I wanted to take a minute and mention some moms who have recently been rockin' my world, since we seem to be going through our Spring Fling with the boys- big changes. When the world is rockin' and rollin', it can be nice to just think about the awesome rocks that keep reality pinned into place.
And, yes, I could go on. I seem to know a lot of awesome moms. I think I just kinda leave the not-awesome ones by the wayside. To the awesome moms I know who I haven't mentioned here: you aren't forgotten. I just need more posts about awesome moms.
So:
And, yes, I could go on. I seem to know a lot of awesome moms. I think I just kinda leave the not-awesome ones by the wayside. To the awesome moms I know who I haven't mentioned here: you aren't forgotten. I just need more posts about awesome moms.
So:
Thank you, Stimey. You Rock.
A big thank-you to Stimey, one of the rockin'est moms ever. When the going got tough, Stimey sent hugs and good thoughts and hugs and a DS lite. Which Joey is playing on right now, instead of sleeping, but that's because he is SO happy, and it has saved our lives on multiple occasions since its arrival. And besides, Stimey likes rodents. We are total soul sisters.
Thank you to the awesome Niksmom!
Another mom who totally rocks? Niksmom. Even when I want to just run up and hug her because her world seems so topsy-turvy and her baby isn't feeling well, she thinks of me. And asks. And sends hugs. I am thinking of you, too. And sending hugs.
Love to my sister-in-disguise, Christina!
Want to meet an awesome mom? Come have tea with my sister, Christina. We were separated at birth. Well, we at least lived in the same town, even if we didn't share parents. Kind of. Anyway, if I had a sister, I would hope she would have been awesome and crazy like Christina. It helps to have a friend down the street. If and when we ever get to actually see each other. That's part of the "fun" of being special needs moms.
Thank you for being awesome, Aunt Nancy!
A big hug and plenty of sugar for my Aunt Nancy. I still remember coming home on dark days to find my bed made. Your hugs have brought smiles to me when life seemed to be falling apart. Thank you for understanding my boys and having a good ear for listening. I love you.
What? Don't you think of Maddy as a goldfish, too?
I can never think of awesome moms without mcewen coming to mind. Whitterer on Autism is now a great resource for finding out about books and apps and stuff useful for autism. But we also still get peeks at her awesomeness with her kids. Hugs hugs hugs.
Thank you to my no-nonsense, tell-it-like-it-is friend, Detre!
You know, one of the awesome treasures in life is having a friend who tells it like it is, and takes no nonsense. Thank you for showing me real strength, Detre. And lending me some of it when I needed it most.
Hugs to Mommy Dearest!
Seriously, this woman is raising a kid with autism to play the baritone/euphonium. Just like me. How awesome is that? And her little goth girl icon makes me giggle every time I see it. Giggles are important in life. Lots of hugs.
What? You can't see the resemblance?
One of my other beautiful sisters; thank you to Sue, who stands by me through thick and thin and everything all around and in between. I know I don't call you enough. But I think of you every day, and send love and hugs and wishes that Texas wasn't so far away. Sue is my go-to when I need a problem solved, or a kick in the patookas to get it solved. Thank you for not letting me be a total slacker. And putting up with living with me in college. That was huge.
Few moms totally rock like Sunday.
When the going gets tough, the tough get Ryan Gosling to take care of business and cheer us all up. But even without our Ryan meme, Sunday rocks. Thank you for your encouragement and grinning photos and banshee awesomeness.
Thank you for understanding, Kim. (And yeah, this is how I think of you).
It wasn't too long ago that I made the attempt to at least try to be a part of the old high school crowd. It was a bit of a bust, but I got to find out who was still a real friend after years of being out of sight, out of mind. I mean, more than i was when I was actually in high school. Thinking of you, Kim, and someone who knows how to offer help in the middle of a meltdown.
No mom is as awesome, and fabulous, and magical as my mom.
Ever need that extra sparkle to make something extra-special? Or a helping hand to keep things even-keel? That one great idea to take a good thing and make it great? That's what my mom does every day. I hope to be as good a mom and as good a grandmom as she is. Whenever things get tough, I can always do the best I can by asking, "what would Mom do?" Thank you, Mom. I love you.
Saturday, May 12, 2012
Repost: Guide to the Day After Diagnosis
For a friend, who wanted just the Guide, and not the rest of the original post.
Quick Guide for Parents for the Day After Diagnosis:
(The
Day Of Diagnosis, just go home and enjoy your child. Maybe put a fresh pot of
coffee on, or take up drinking coffee.)
1. Here are the people to call:
*Local
Autism clinic, if you didn't get get the diagnosis there. Here, that would
both Kluge Children's Rehab and Kennedy Krieger. Some centers, like Kennedy
Krieger, take a year to get an appointment for anything. Kluge takes a couple
of months. A year is a little long, but a couple of months is OK. This is
urgent, but not an emergency. Besides, you have other folks to call and get
going.
*The local school district. Many of teh supports your child
needs are the responsibility of your local school district. You want to get a
feel for the place, have an eval, get into the system- even if you decide to
homeschool.
*Your insurance. KNow what they will cover, and what
they will not. Many insurances will cover OT without batting an eye, but will
not cover speech therapy because it is "educational." Some insurance
see "autism" and cover NOTHING. Some see it and cover EVERYTHING.
Some therapies are considered educational and not medical- and this can be
different from insurance to insurance, state to state. You may choose
interventions that are not covered, and you need to know what you will be
paying for, how much it will be, and what you will need to do to cover
it.
*The speech pathologist. Some centers have them, some local
hospitals have them, and there are lots of private practice ones. Be sure they
are going to work on communication, not just speech. Do they do sign language,
switches, PECS? How do they use these as tools for communication, and not just
learning to speak? How do they use them to encourage- but not force- speech? Do
they also work with reading and other visual communication?
*The
physical therapist. Many autistic kids have gross motor problems that
need to be addressed. Many don't need a PT (Joey doesn't need a PT).
*The
occupational therapist. Ask specifically about sensory integration
therapies. Most autistic kids have some form of SPD (though not all!). You
don't want just a buttons and zippers OT, you want one that will take an
integrated approach and can address the needs of your child.
*Your
pediatrician. Be sure they are immediately aware. Ask questions. What
will they do for you? What do they know abotu autism? Are they willing to do
some research or attend a conference or workshop about autism? If you have a
doctor who seems ignorant of autism- and many are- and is
unwiling to beome educated, then you will be needing a new ped.
*Psychologist. You may
need some testing done in ways the school doesn't accomodate, some
understanding of your child's mental health, and yes, you may need medications.
Be prepared.
*Your local Disability Resource Center. These
types of organizations can help you navigate local resources, prepare for
things like Medicaid Waivers, even help you understand disability law and
rights. They can also help you network with other parents of disabled
children.
*State agencies for the disabled. Many
states have offices specifically geared to helping people with disabilities and
protect their rights. Its a good idea to be familiar with these offices and
what they actually do in your state or locality.
*A Lawyer. You're about to
become an expert in disability law. School districts and insurance agencies can
be not fun to work with. Be prepared. Find a lawyer and advocate who deal in
disability and educational law. BE prepared in case you run into problems- its
a lot easier to prepare for a fight if you already have your champion lined up,
rather than waiting until you have a problem. I haven't met a parent yet who
didn't have a problem.
I know that is a lot of phone calls. Prepare
ahead of time- get a big loose-leaf notebook to keep paperwork, evaluations,
even phone messages in. Just keep it by date; when you make a call, note it on
a sheet with the date and a summary of what was discussed, and put it in the
notebook. When the evals come, just put them in the notebook. Bills. Letters.
IEPs. Anything. I even have Joey's birth certificate at the front. I'm on our
second 3" binder.
2. Here are things you need to do:
*Relax. Your child
hasn't changed. You just have a new label to point you to resources you might
need.
*
Read. The books I recommend are:
That will give
you a start. I encourage folks to include their favorite resources in the
comments.
*Read some more. You will need to research
different methods and strategies used with autistic children. Some I can think
off the top of my head are ABA (Applied Behavioral Analysis), PECS (Picture
Exchange Communication System), Floor Time, Sensory Integration, Therapeutic
Listening, GFCF (Gluten free/Casein free diets) {and other possible allergies
and diets- if your kid has sensory issues, allergies can drive them crazy!], ABLLS
(Asessment of Basic Language and Learning Skills), TEACCH (Treatment and
Education of Autistic and related Communication-disabled[or handicapped]
Children).
*
Get online. Check out the links I have in the
sidebar. I've developed a handout for new parents here in Virginia, I'll be
happy to email it to you. Also, you can network with more great folks like us.
:)
*Go out and have some fun! Remember, your child hasn't
changed! Go out and do the stuff your child likes to do! Try to introduce your
child to new experiences- as you would any child! These outings may take more
preparation(and work) than for non-autistic families, but it's worth it.
Keeping kids locked in the house will drive you crazy, too, and deny them
living. Yes, some folks will stare. You may get unkind comments, or offensive
comments. But you know what? You would have gotten them even if you didn't know
about autism. Now you know how to support your child in the face of these
people- "My kid's doing a great job with this new experience. What's your problem?"
Summary?
You now know your child is autistic. Now you have a better plan for moving
ahead and educating your child- which now makes your life better, not worse.
Yes, now that you know the kinds of resources you need, you now have work to do
to tap those resources- but now you have narrowed the field to the resources
you may need!
See? Not scary. Just needs a little information!
Riding the Roller Coaster (and Ryan Break)
I am totally sorry about not blogging. I have a ton of stuff to splash across the blogosphere, and a ton more stuff that I can't, but is really super important. I have to take care the stuff I can't put out to the public first right now, but I'm getting there. So I'll put out some stuff that is perfectly public-worthy.
First, the bad news. We had another major personnel shift at school- very suddenly, with no warning. We knew right away at home. Hence, roller-coaster city. Joey's anxiety has skyrocketed, and so he is barely holding it together, all the time. The smallest of upsets can put him over the edge.
When he came home from school yesterday, everything was in an uproar. Being early dismissal day, the schedule was, naturally, all screwed up. I had two edgy boys bouncing and screaming, so we gave up and went to the park to bounce and scream. It was working beautifully. The boys are especially fond of the section of the park with the new equipment. I will say up front this section of the park does have a sign stating that it is designed for the 5-and-under crowd. However, it is very typical to find kids of all ages on all the equipment, and my kids are very aware that they have to be extra gentle and extra careful in this section of the park when there are little kids about. Besides, they love to be in this section because the love to play with the little ones. The equipment is perfect for Joey's not-so-obvious mobility challenges, and the smaller kids are easier for him to play with. He also likes being the "big kid" to the little ones, and he likes how they are gentler (because they are younger). Andy also likes the little ones, and being the "big kid" leader in games. Both adore babies. They spend a good amount of time playing all over the park, including the "preschool zone." Hey, my kids still love Shaun the Sheep.
There were lots of younger ones out and about yesterday, and my boys were loving life. I was watching Joey closely as he was helping swing a baby and talking to a mom, when suddenly Andy comes running past me, with his crying face on. His smaller friend came after him. It took a few minutes for Andy to recover enough to come back from behind a large tree and talk to me.
"What happened, baby?" I asked, giving him a quick hug as he broke into tears again.
"That man said I can't play here!" he wailed, pointing. Sure enough, there was a dad, with a small boy, and a person I later realized was his wife, with a little girl. I encouraged Andy to go play with his friend, and the pair assiduously avoided the usually-favorite area in favor of running among the trees. All seemed fine, just a misunderstanding, no big deal. After all, there were several other children on the equipment in the 6-8 range, and nobody was being rough or unruly.
But as I watched, Joey finished his conversation and headed for the equipment. Sure enough, the man stopped him and started speaking with him, and Joey bounced on his heels a little, a sign he was unhappy. I got up and headed for intervention. As I closed in, I heard the man say, "This area if for the babies! You're too big to be here! Go on!" Joey repeated back, "It's for babies!" in a tone I knew was bad news.
"Go on and play, Joey," I addressed Joey firmly as he turned to me, and emphasized my words with sign, Play.
"The babies don't like me," Joey frowned at me.
"It's OK, go play," I repeated, and repeated my sign.
"This area is for the under-fives! He can't play here!" the man shouted at me.
"Excuse me, sir," I replied firmly, "but this is a public park, and my children need this kind of equipment. Joey," I repeated my sign to Joey, "go ahead, sweetheart." Joey climbed up on the equipment, and the man threw his hands up, clear exasperated.
"What, is he retarded or something?"
No, I didn't deck him. Sorry.
"Sir, this is a public park, and using that word is very offensive." He huffed off instead of answering me, saying something to his wife that made her frown and pick up the little girl. I did not pursue the point. In this state, he could easily have a concealed weapon, and I had made my point clear. I watched from my usual seat as he gestured and I could hear he was still saying things. Whatever they were, the other families were now all glaring at him. Joey called something to him, trying to include the man in his game- something Joey often does when adults are about. The man ignored him. At some point in the proceedings, another father turned to the man and something. From the sudden desist of ranting, I assume it was something to the effect of "shut up."
I should note here that neither Joey nor Andy did anything to hurt their children, block the slides, push them, or anything else that might have been dangerous, intentional or otherwise. When the little ones wanted to get down the slide, Joey moved aside and let them go, cheering when they made it to the bottom, offering encouragement when they were at the top. Joey waved at the man's little boy, that's the only contact even attempted with these particular children.
The couple finally decided to scoop up their kids and go away. Neither glanced in my direction as they went out, which was just as well.
That is when the families started coming over to me.
"What jerk." "Are you OK?" "We sure love your boy, he's so sweet." "Is your other little guy OK? He looked upset." "What was that guy's problem?" Several were upset that he had referred to Joey as "retarded" in his stream of criticism of my parenting choices.
Sometimes when we run into people like that, I sometimes wonder if it's me. I won't say he didn't have a point. I will say there were more constructive ways of communicating it.
So we need a good Ryan break.
First, the bad news. We had another major personnel shift at school- very suddenly, with no warning. We knew right away at home. Hence, roller-coaster city. Joey's anxiety has skyrocketed, and so he is barely holding it together, all the time. The smallest of upsets can put him over the edge.
When he came home from school yesterday, everything was in an uproar. Being early dismissal day, the schedule was, naturally, all screwed up. I had two edgy boys bouncing and screaming, so we gave up and went to the park to bounce and scream. It was working beautifully. The boys are especially fond of the section of the park with the new equipment. I will say up front this section of the park does have a sign stating that it is designed for the 5-and-under crowd. However, it is very typical to find kids of all ages on all the equipment, and my kids are very aware that they have to be extra gentle and extra careful in this section of the park when there are little kids about. Besides, they love to be in this section because the love to play with the little ones. The equipment is perfect for Joey's not-so-obvious mobility challenges, and the smaller kids are easier for him to play with. He also likes being the "big kid" to the little ones, and he likes how they are gentler (because they are younger). Andy also likes the little ones, and being the "big kid" leader in games. Both adore babies. They spend a good amount of time playing all over the park, including the "preschool zone." Hey, my kids still love Shaun the Sheep.
There were lots of younger ones out and about yesterday, and my boys were loving life. I was watching Joey closely as he was helping swing a baby and talking to a mom, when suddenly Andy comes running past me, with his crying face on. His smaller friend came after him. It took a few minutes for Andy to recover enough to come back from behind a large tree and talk to me.
"What happened, baby?" I asked, giving him a quick hug as he broke into tears again.
"That man said I can't play here!" he wailed, pointing. Sure enough, there was a dad, with a small boy, and a person I later realized was his wife, with a little girl. I encouraged Andy to go play with his friend, and the pair assiduously avoided the usually-favorite area in favor of running among the trees. All seemed fine, just a misunderstanding, no big deal. After all, there were several other children on the equipment in the 6-8 range, and nobody was being rough or unruly.
But as I watched, Joey finished his conversation and headed for the equipment. Sure enough, the man stopped him and started speaking with him, and Joey bounced on his heels a little, a sign he was unhappy. I got up and headed for intervention. As I closed in, I heard the man say, "This area if for the babies! You're too big to be here! Go on!" Joey repeated back, "It's for babies!" in a tone I knew was bad news.
"Go on and play, Joey," I addressed Joey firmly as he turned to me, and emphasized my words with sign, Play.
"The babies don't like me," Joey frowned at me.
"It's OK, go play," I repeated, and repeated my sign.
"This area is for the under-fives! He can't play here!" the man shouted at me.
"Excuse me, sir," I replied firmly, "but this is a public park, and my children need this kind of equipment. Joey," I repeated my sign to Joey, "go ahead, sweetheart." Joey climbed up on the equipment, and the man threw his hands up, clear exasperated.
"What, is he retarded or something?"
No, I didn't deck him. Sorry.
"Sir, this is a public park, and using that word is very offensive." He huffed off instead of answering me, saying something to his wife that made her frown and pick up the little girl. I did not pursue the point. In this state, he could easily have a concealed weapon, and I had made my point clear. I watched from my usual seat as he gestured and I could hear he was still saying things. Whatever they were, the other families were now all glaring at him. Joey called something to him, trying to include the man in his game- something Joey often does when adults are about. The man ignored him. At some point in the proceedings, another father turned to the man and something. From the sudden desist of ranting, I assume it was something to the effect of "shut up."
I should note here that neither Joey nor Andy did anything to hurt their children, block the slides, push them, or anything else that might have been dangerous, intentional or otherwise. When the little ones wanted to get down the slide, Joey moved aside and let them go, cheering when they made it to the bottom, offering encouragement when they were at the top. Joey waved at the man's little boy, that's the only contact even attempted with these particular children.
The couple finally decided to scoop up their kids and go away. Neither glanced in my direction as they went out, which was just as well.
That is when the families started coming over to me.
"What jerk." "Are you OK?" "We sure love your boy, he's so sweet." "Is your other little guy OK? He looked upset." "What was that guy's problem?" Several were upset that he had referred to Joey as "retarded" in his stream of criticism of my parenting choices.
Sometimes when we run into people like that, I sometimes wonder if it's me. I won't say he didn't have a point. I will say there were more constructive ways of communicating it.
So we need a good Ryan break.
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