HAPPY BIRTHDAY, JOEY-BOY!!!!
Thursday, April 10, 2014
Tuesday, April 08, 2014
Preparations
Tomorrow is going to be a big day.
I have some friends coming to help me throw a bunch of stuff in tubs, and haul it to storage. My basement is full, I have a guest room full, I'm a hoarding packrat that would make a good TV show. It's all headed to the storage, so I can go through the dozens of tubs of crap in peace. I've been through a couple dozen already, mostly sent off to the dump or the donation bin. I'll get my basement back, and can set it up for the boys. My house will have a semblance of being picked up.
Sounds great, doesn't it?
I've actually been working on it, box/tub by box/tub, one or two a day. But now I need it to happen RIGHT NOW. Why? Because we need help. The kind that requires a social worker to come to your house. That's how you apply for Medicaid waivers here. They send a social worker and a Medicaid person to your house, and determine if you qualify for the waiver, so you can get some help. Having social services in my house is not something I look forward to. I look to the left an the right, and all I can hear is my dad. The words aren't pretty. Everything I've heard about letting a social worker into your house is also not pretty.
And I am the worst housekeeper on the PLANET. It may have to do with trying to work three jobs and raise two special needs boys, but to be honest, I sucked at housekeeping before I ever had to work a day in my life. Just ask my dad.
In the face of ten weeks in Baltimore, the continued high anxiety, the increased spring bolting, and the emotional wreck that is my son spiraling downward every moment, we have come to the end of our rope. This is going to be a financial disaster for us, just to find a place to stay, far more if we can't get the insurance to cover services. This is already an emotional catastrophe for Joey, even with the increased medicine. There is a waiver that will help with respite care, which would let us bring in someone to work with Joey in our home, and possibly allow me to shower more often. It also is a back door into Medicaid, which will cover a broader range of service than the state BC/BS will- we might be able to get some speech services covered again, maybe even some OT. They might cover some of the behavioral therapies that BC/BS considers "educational" (and the school considers "medical" or "not directly related to academics").
A social worker in my house means I spent a good deal of the afternoon with several large tubs, stuffing them full of clutter, so that I can go through it all later when there is more time. As if it was in any way related to Joey needing anything, or anybody's business, if I have stacks of books, papers, and toys in my house. As if it made any difference that the boys tend to kick trash under the couch, toss notebooks around, and leave their stuffed animals in little nests beside the furniture. Why should it matter that my back hall is basically a big closet, with hooks on every (real closet and basement) door, covered in jackets, hats, and tote bags?
I put every thing in a bin, each item tugging at bitterness. It shouldn't be anyone's business. I should be able to apply for this in an office. I also think about those messages we get bout government assistance. I have seen the posts on Facebook and Twitter, I know we are about to lose more people, we know how they feel about us, are about to feel about us: mooches, lazy, social dregs. We have heard the message, loud and clear. I don't want to hear the "well, I didn't mean you" excuses. Because you know what? You do mean us. You mean me. You make it harder to do this.
And every book, every toy, every paint bottle, every pencil, each and every thing I place in the tubs was accompanied by the tears. This shouldn't be. We were doing so well, Joey was doing so well, how did we get to this? How did it come to this? Where did we go wrong? We should have fought sooner. We should have done more. We should have pulled him out of school years ago, since we couldn't afford a lawyer. We should have done something the moment we saw the downturn. We should have acted after the first bolt. We should never have listened to the school people with their chants of "this will work" and "it will be OK" and "we will take care of him." All lies. Every single one of them.
I'm a smart woman. I should have known better. I did know better. Joey is paying for my being lazy, and complacent, and trusting the wrong people, and wanting it to work.
I place each thing in the tub, another mark of my own lazy, complacent, idiotic ways. It will go off to storage, where it will sit for months while we try to get this sorted out, then go to Baltimore, then the new semester will start, and fall rush will hit us at ETS, and there will be no time. Christmas will come, and go, and what will I have done? We don't even know if this will come to anything- we may go through all this, and apply, and have it all be for naught.
They will help Joey this summer in Baltimore. I have to believe it. It's going to work. It's going to be OK. They are going to help us. They are going to help Joey. We are going to get the depression and anxiety under control so he can go back to being happy, and healthy, and independent, and growing.
Eyes on the prize. As I close another lid.
I have some friends coming to help me throw a bunch of stuff in tubs, and haul it to storage. My basement is full, I have a guest room full, I'm a hoarding packrat that would make a good TV show. It's all headed to the storage, so I can go through the dozens of tubs of crap in peace. I've been through a couple dozen already, mostly sent off to the dump or the donation bin. I'll get my basement back, and can set it up for the boys. My house will have a semblance of being picked up.
Sounds great, doesn't it?
I've actually been working on it, box/tub by box/tub, one or two a day. But now I need it to happen RIGHT NOW. Why? Because we need help. The kind that requires a social worker to come to your house. That's how you apply for Medicaid waivers here. They send a social worker and a Medicaid person to your house, and determine if you qualify for the waiver, so you can get some help. Having social services in my house is not something I look forward to. I look to the left an the right, and all I can hear is my dad. The words aren't pretty. Everything I've heard about letting a social worker into your house is also not pretty.
And I am the worst housekeeper on the PLANET. It may have to do with trying to work three jobs and raise two special needs boys, but to be honest, I sucked at housekeeping before I ever had to work a day in my life. Just ask my dad.
In the face of ten weeks in Baltimore, the continued high anxiety, the increased spring bolting, and the emotional wreck that is my son spiraling downward every moment, we have come to the end of our rope. This is going to be a financial disaster for us, just to find a place to stay, far more if we can't get the insurance to cover services. This is already an emotional catastrophe for Joey, even with the increased medicine. There is a waiver that will help with respite care, which would let us bring in someone to work with Joey in our home, and possibly allow me to shower more often. It also is a back door into Medicaid, which will cover a broader range of service than the state BC/BS will- we might be able to get some speech services covered again, maybe even some OT. They might cover some of the behavioral therapies that BC/BS considers "educational" (and the school considers "medical" or "not directly related to academics").
A social worker in my house means I spent a good deal of the afternoon with several large tubs, stuffing them full of clutter, so that I can go through it all later when there is more time. As if it was in any way related to Joey needing anything, or anybody's business, if I have stacks of books, papers, and toys in my house. As if it made any difference that the boys tend to kick trash under the couch, toss notebooks around, and leave their stuffed animals in little nests beside the furniture. Why should it matter that my back hall is basically a big closet, with hooks on every (real closet and basement) door, covered in jackets, hats, and tote bags?
I put every thing in a bin, each item tugging at bitterness. It shouldn't be anyone's business. I should be able to apply for this in an office. I also think about those messages we get bout government assistance. I have seen the posts on Facebook and Twitter, I know we are about to lose more people, we know how they feel about us, are about to feel about us: mooches, lazy, social dregs. We have heard the message, loud and clear. I don't want to hear the "well, I didn't mean you" excuses. Because you know what? You do mean us. You mean me. You make it harder to do this.
And every book, every toy, every paint bottle, every pencil, each and every thing I place in the tubs was accompanied by the tears. This shouldn't be. We were doing so well, Joey was doing so well, how did we get to this? How did it come to this? Where did we go wrong? We should have fought sooner. We should have done more. We should have pulled him out of school years ago, since we couldn't afford a lawyer. We should have done something the moment we saw the downturn. We should have acted after the first bolt. We should never have listened to the school people with their chants of "this will work" and "it will be OK" and "we will take care of him." All lies. Every single one of them.
I'm a smart woman. I should have known better. I did know better. Joey is paying for my being lazy, and complacent, and trusting the wrong people, and wanting it to work.
I place each thing in the tub, another mark of my own lazy, complacent, idiotic ways. It will go off to storage, where it will sit for months while we try to get this sorted out, then go to Baltimore, then the new semester will start, and fall rush will hit us at ETS, and there will be no time. Christmas will come, and go, and what will I have done? We don't even know if this will come to anything- we may go through all this, and apply, and have it all be for naught.
They will help Joey this summer in Baltimore. I have to believe it. It's going to work. It's going to be OK. They are going to help us. They are going to help Joey. We are going to get the depression and anxiety under control so he can go back to being happy, and healthy, and independent, and growing.
Eyes on the prize. As I close another lid.
Friday, April 04, 2014
The Logistics of Hope
It's been a bit of a tangled web of a week.
On Monday, Joey had a meltdown over a test. He bolted from the classroom, and was finally caught just before he hit the school parking lot. Yes, that means he left the building. He spent a lot of the day in the red zone, and even had an incident where he called a fellow bus rider an ugly name, which had to be addressed. It was not a positive day.
On Tuesday, he decided at some point in the afternoon that his parents were dead. With no defenses against the intense emotion that comes with such an idea, he naturally freaked out. They caught him on the far side of the parking lot. Thus was our welcome to Autism Awareness Month. He was so upset, I had to fetch him from school.
After two days of escaping, and knowing we were seeing our neuro on Thursday, we made the executive decision to just give everybody a break and keep him home Wednesday. Sounded reasonable. Clearly, we have a depression and anxiety issue, and needed it addressed. We also clearly had a safety issue, and it would give the school a couple of days to regroup and readdress that. Sounded like a good plan to us.
I got the call in the afternoon. Because he was responsive when they stopped him (across the parking lot!!!), so they decided it was a discipline issue, and were counting the day as OSS. Because it makes total sense to punish a kid for having a nervous breakdown, especially when you can't keep him safely in the building.
I think the light that shot from my hair follicles as I had my conniption fit could be seen in London. And that loud screaming that rang in your ears Wednesday afternoon? That was me.
That was the easy part of the week.
Our neuro, Dr. Rubenstein, is a very interesting gentleman who, I am convinced, thinks I am nuts. We managed to get moved up the appointment queue because of the incident a couple years ago, where Joey had a massive meltdown and was completely unresponsive (he was suspended that time, too). We were worried about seizures. Apparently, saying "I'm worried about seizures" moves you up the wait list. The doctor was very good at listening, but when I got the report back, I suspected from the wording that he thought I was nuts. After all, the incident I was describing, with a thrashing, violent, screaming child who destroyed a classroom, seemed little connected with the happy, chatty guy he was seeing in front of him. We were sent home with a renewed prescription for Lexapro and another appointment in six months, by which time I was to send him all of the evals we had ever had done.
I digitized them, because sending them printed out would have taken a large priority mail box. And to be honest, we have less paper than many, many special needs parents I know. I then sent the whole mess as a CD. When we arrived, I have to admit being impressed again: he had meticulously gone through every single report, pulling out ones he thought significant, and asked me about them. He was very happy that we had been "on top of things." Yet, there was that feeling of, "but I still think you're nuts" that I was getting from him. Oversensitive? Maybe. But... wait for it...
He decided Joey was in such good shape, we should work on helping him focus. We tried Adderall, but it didn't do anything but keep him up all night. We discontinued it, and decided to try something different after our next appointment. That was the failed experiment in Ritalin, and the resulting four suspensions and other school disasters. After a series of emergency calls, he came off the Ritalin, was suspended four times during the withdrawl, and we now know that we can't work on focus. We have to get the anxiety under control first. We got an emergency prescription for Buspar, and by Christmas, we seemed headed to even keel.
Then came the snow. They've missed two weeks of school. Joey is out of sorts. His depression and anxiety are through the roof. And now, spring is here, his regular freak-out time. Yay, us. So we got suspended for having a breakdown, and go to the neuro, and tell him our tale of woe. The cussing, the self-deprecation, the sudden anxiety attacks and death thoughts, the meltdowns, the school's reactions, the escapes. I encourage Joey to tell his side, and he starts in on kids calling him names, getting answers wrong the the tests... and the words we hear all the time start coming out of his mouth. It was just a little, a few "I'm stupid"s and "I'm retarded" and a couple of cusses, just mild ones, not the big ones. I got him calmed pretty fast. Then I turned to the doctor.
His face had changed. He was frowning. This is our fifth appointment, and he had been sometimes cold, but never frowned. He asked how long it took us to get to Kennedy Krieger. He asked until he understood where our home was, and it took us two hours to get there, through two heavy traffic zones. That we got up at 4am to get to 8am appointments, mostly so we could avoid the traffic and not miss the appointments.
Then he hit us with why he was asking.
He was really upset about Joey's condition and deterioration. He realized we really did need help. He could finally see it: I'm not nuts. I'm desperate, and my child needs help. Now.
Ever try to get a child who is both under 12 and autistic into a psychiatrist? We're on waiting lists. We've been on waiting lists. We're still waiting. The demand is extreme, and the supply dangerously low. Such is the state of our mental health system, getting appointments for under-12s is hard enough, but coupled with communication disabilities, near impossible. Behavioral therapy? No insurance covers that- IF you can find one. They consider it educational. The school's behavioral specialists? Joey was great when she was his teacher. That was four years ago. We're still trying to recoup skills he had when she was his teacher.
Kennedy Krieger has these things, and can do intensive outpatient intervention(he feels Joey is not having the very severe violent behaviors that most of their inpatient participants have, and is concerned that Joey might copy violent behaviors, so that's out)- neurology, behavior therapies, psychiatric help, nutritional help- but it would be 4-5 days a week, for 8-10 weeks, and we're two hours away. He was frowning. He was upset that no one was helping us. He was concerned that we couldn't get to Kennedy Krieger for intensive intervention. He didn't understand.
"If you can help him, we will do it," I said. Because that is all there is to be said about that. We will figure it out. Will insurance help us? Will we find a place to live there for the program duration, so we can optimize Joey's productive hours, which tend to be morning? I have no clue. But if they can help him, we will do it.
Dr. Rubenstein is spending the next few days hammering out what the program will entail and what specialists he can bring in to help. I spent today looking into Medicaid and SSI, talking to Joey's private speech therapist, and trying to track down costs of rooms and sublets in the Baltimore area. Mom worked on hotel rooms and other possibilities.
Help may be in our grasp. I'm not letting go.
On Monday, Joey had a meltdown over a test. He bolted from the classroom, and was finally caught just before he hit the school parking lot. Yes, that means he left the building. He spent a lot of the day in the red zone, and even had an incident where he called a fellow bus rider an ugly name, which had to be addressed. It was not a positive day.
On Tuesday, he decided at some point in the afternoon that his parents were dead. With no defenses against the intense emotion that comes with such an idea, he naturally freaked out. They caught him on the far side of the parking lot. Thus was our welcome to Autism Awareness Month. He was so upset, I had to fetch him from school.
After two days of escaping, and knowing we were seeing our neuro on Thursday, we made the executive decision to just give everybody a break and keep him home Wednesday. Sounded reasonable. Clearly, we have a depression and anxiety issue, and needed it addressed. We also clearly had a safety issue, and it would give the school a couple of days to regroup and readdress that. Sounded like a good plan to us.
I got the call in the afternoon. Because he was responsive when they stopped him (across the parking lot!!!), so they decided it was a discipline issue, and were counting the day as OSS. Because it makes total sense to punish a kid for having a nervous breakdown, especially when you can't keep him safely in the building.
I think the light that shot from my hair follicles as I had my conniption fit could be seen in London. And that loud screaming that rang in your ears Wednesday afternoon? That was me.
That was the easy part of the week.
Our neuro, Dr. Rubenstein, is a very interesting gentleman who, I am convinced, thinks I am nuts. We managed to get moved up the appointment queue because of the incident a couple years ago, where Joey had a massive meltdown and was completely unresponsive (he was suspended that time, too). We were worried about seizures. Apparently, saying "I'm worried about seizures" moves you up the wait list. The doctor was very good at listening, but when I got the report back, I suspected from the wording that he thought I was nuts. After all, the incident I was describing, with a thrashing, violent, screaming child who destroyed a classroom, seemed little connected with the happy, chatty guy he was seeing in front of him. We were sent home with a renewed prescription for Lexapro and another appointment in six months, by which time I was to send him all of the evals we had ever had done.
 |
| This is not the face people expect from a severely depressed, seriously anxious child. |
I digitized them, because sending them printed out would have taken a large priority mail box. And to be honest, we have less paper than many, many special needs parents I know. I then sent the whole mess as a CD. When we arrived, I have to admit being impressed again: he had meticulously gone through every single report, pulling out ones he thought significant, and asked me about them. He was very happy that we had been "on top of things." Yet, there was that feeling of, "but I still think you're nuts" that I was getting from him. Oversensitive? Maybe. But... wait for it...
He decided Joey was in such good shape, we should work on helping him focus. We tried Adderall, but it didn't do anything but keep him up all night. We discontinued it, and decided to try something different after our next appointment. That was the failed experiment in Ritalin, and the resulting four suspensions and other school disasters. After a series of emergency calls, he came off the Ritalin, was suspended four times during the withdrawl, and we now know that we can't work on focus. We have to get the anxiety under control first. We got an emergency prescription for Buspar, and by Christmas, we seemed headed to even keel.
Then came the snow. They've missed two weeks of school. Joey is out of sorts. His depression and anxiety are through the roof. And now, spring is here, his regular freak-out time. Yay, us. So we got suspended for having a breakdown, and go to the neuro, and tell him our tale of woe. The cussing, the self-deprecation, the sudden anxiety attacks and death thoughts, the meltdowns, the school's reactions, the escapes. I encourage Joey to tell his side, and he starts in on kids calling him names, getting answers wrong the the tests... and the words we hear all the time start coming out of his mouth. It was just a little, a few "I'm stupid"s and "I'm retarded" and a couple of cusses, just mild ones, not the big ones. I got him calmed pretty fast. Then I turned to the doctor.
His face had changed. He was frowning. This is our fifth appointment, and he had been sometimes cold, but never frowned. He asked how long it took us to get to Kennedy Krieger. He asked until he understood where our home was, and it took us two hours to get there, through two heavy traffic zones. That we got up at 4am to get to 8am appointments, mostly so we could avoid the traffic and not miss the appointments.
Then he hit us with why he was asking.
He was really upset about Joey's condition and deterioration. He realized we really did need help. He could finally see it: I'm not nuts. I'm desperate, and my child needs help. Now.
Ever try to get a child who is both under 12 and autistic into a psychiatrist? We're on waiting lists. We've been on waiting lists. We're still waiting. The demand is extreme, and the supply dangerously low. Such is the state of our mental health system, getting appointments for under-12s is hard enough, but coupled with communication disabilities, near impossible. Behavioral therapy? No insurance covers that- IF you can find one. They consider it educational. The school's behavioral specialists? Joey was great when she was his teacher. That was four years ago. We're still trying to recoup skills he had when she was his teacher.
Kennedy Krieger has these things, and can do intensive outpatient intervention(he feels Joey is not having the very severe violent behaviors that most of their inpatient participants have, and is concerned that Joey might copy violent behaviors, so that's out)- neurology, behavior therapies, psychiatric help, nutritional help- but it would be 4-5 days a week, for 8-10 weeks, and we're two hours away. He was frowning. He was upset that no one was helping us. He was concerned that we couldn't get to Kennedy Krieger for intensive intervention. He didn't understand.
"If you can help him, we will do it," I said. Because that is all there is to be said about that. We will figure it out. Will insurance help us? Will we find a place to live there for the program duration, so we can optimize Joey's productive hours, which tend to be morning? I have no clue. But if they can help him, we will do it.
Dr. Rubenstein is spending the next few days hammering out what the program will entail and what specialists he can bring in to help. I spent today looking into Medicaid and SSI, talking to Joey's private speech therapist, and trying to track down costs of rooms and sublets in the Baltimore area. Mom worked on hotel rooms and other possibilities.
Help may be in our grasp. I'm not letting go.
Tuesday, April 01, 2014
Shine On
 |
| Thank you, Jill Smo. |
Honoring the memories of those lost, and sending hugs and prayers to their families.
Our families.
Joey has completely escaped his school twice in the last two days. We don't know why he is having an anxious week, but this is our reality.
Please join us in the vigil to support these families. Please pay it forward.
After all, it could so easily be us.
Saturday, March 29, 2014
Drama Llama on T-shirt near you!
Sunday, March 23, 2014
IEP Time: The Key
Joey's IEP meeting is this week. The purpose of the meeting is to determine his goals for the next year, but I think it will only be the first of at least two meetings, since I had the school actually do some evals, and they aren't done yet. Can't really make goals for a child until you know where they are.
However, here is the beginning: that first attempt to hammer out what Joey needs, and where we need to focus. As such, it is time to re-assess the bigger picture: try to get a handle on who Joey is, what he needs to move forward in his own development, and how to support those needs.
When Joey was getting what he needed, he made a lot of progress both socially and academically, meeting his goals and becoming increasingly independent. That was four years ago. Trust me, I know how horrible that reads. Right now, that is not where we are. We need to meet Joey where he is right now, not where we think he ought to have been. At the same time, what happened? And what can we do to fix it so we return to meeting goals, making progress, and resuming the march to solid development and independence? How do we go back to helping Joey be happy, and gain the skills he needs to successfully manage himself and his own life as an adult?
How do we re-gauge what he can accomplish in a year? Clearly, this needs to be reconsidered. He hasn't hit his goals in four years. We need to re-consider what the bigger goals are, and how to break them down into the smaller chunks. Then we need to be meeting those chunks. We need to reconsider what made Joey so successful before, and ask why he is no longer meeting his goals. What combination of re-write and resources would make this next IEP successful?
Key to all of is this, what will those goals be? What are the larger goals? Broad goals like "being happy" and "becoming independent" are too vague to work with. What does Joey need to be successful in the school environment, and in the larger world? How can we get him access to the curriculum of the school, assessed accurately in his success in learning that curriculum, and engaging that curriculum in terms of skills and knowledge? You can't write goals until you know what skills he has, what skills he can use, and what skills he needs. You need to understand where the real gaps are. It's useless to write a goal saying a child needs to learn how to write a sentence if the real problem is that the child needs to learn how to hold a pencil, or be taught to type so they can demonstrate their writing skills. It is also pretty weird to write goals about coping with anxiety when the environment seems to increase and intensify anxiety- you need to fix that environment into a low-intensity, low-anxiety environment first, so that skills can be gained and strengthened. You don't give a beginner the task of an expert; first, your goal is to master the beginner level. You then remember they haven't mastered it yet- you expect them to master it by Christmas. Then you determine means for controlling the situation and environment to provide opportunities for learning, building, and success, before moving everything up a notch. You build up to that mastery, then work on moving to the intermediate level.
Even the makers of Angry Birds understand that.
So this is only the first meeting. We can't finish this task until we have the evaluations, and compare those evaluations to our own observations. I get tired of evaluations telling me he has trouble with math, or can't read well. Really? Allow me to disprove that one for you...
However, here is the beginning: that first attempt to hammer out what Joey needs, and where we need to focus. As such, it is time to re-assess the bigger picture: try to get a handle on who Joey is, what he needs to move forward in his own development, and how to support those needs.
When Joey was getting what he needed, he made a lot of progress both socially and academically, meeting his goals and becoming increasingly independent. That was four years ago. Trust me, I know how horrible that reads. Right now, that is not where we are. We need to meet Joey where he is right now, not where we think he ought to have been. At the same time, what happened? And what can we do to fix it so we return to meeting goals, making progress, and resuming the march to solid development and independence? How do we go back to helping Joey be happy, and gain the skills he needs to successfully manage himself and his own life as an adult?
How do we re-gauge what he can accomplish in a year? Clearly, this needs to be reconsidered. He hasn't hit his goals in four years. We need to re-consider what the bigger goals are, and how to break them down into the smaller chunks. Then we need to be meeting those chunks. We need to reconsider what made Joey so successful before, and ask why he is no longer meeting his goals. What combination of re-write and resources would make this next IEP successful?
Key to all of is this, what will those goals be? What are the larger goals? Broad goals like "being happy" and "becoming independent" are too vague to work with. What does Joey need to be successful in the school environment, and in the larger world? How can we get him access to the curriculum of the school, assessed accurately in his success in learning that curriculum, and engaging that curriculum in terms of skills and knowledge? You can't write goals until you know what skills he has, what skills he can use, and what skills he needs. You need to understand where the real gaps are. It's useless to write a goal saying a child needs to learn how to write a sentence if the real problem is that the child needs to learn how to hold a pencil, or be taught to type so they can demonstrate their writing skills. It is also pretty weird to write goals about coping with anxiety when the environment seems to increase and intensify anxiety- you need to fix that environment into a low-intensity, low-anxiety environment first, so that skills can be gained and strengthened. You don't give a beginner the task of an expert; first, your goal is to master the beginner level. You then remember they haven't mastered it yet- you expect them to master it by Christmas. Then you determine means for controlling the situation and environment to provide opportunities for learning, building, and success, before moving everything up a notch. You build up to that mastery, then work on moving to the intermediate level.
Even the makers of Angry Birds understand that.
So this is only the first meeting. We can't finish this task until we have the evaluations, and compare those evaluations to our own observations. I get tired of evaluations telling me he has trouble with math, or can't read well. Really? Allow me to disprove that one for you...
Tuesday, March 18, 2014
It's Not OK.
I have been following several stories online about kids being brutally bullied for liking characters and shows considered "not appropriate" for their age and gender. Currently, many of them are about boys who like My Little Pony. They are beaten, teased, and told not to wear their favorite shirts or bring their bookbags to school because, heaven forbid, they like a show that has female ponies as main characters, and was designed to be marketed to girls. Occasionally we hear of a girl being teased about wearing a shirt or bookbag that has a male character or superhero on it, but we are quick to hop to her rescue. Heaven forbid boys like a show about strong-minded females who practice good social skills and are supportive of each other. Right?
Kids like what they like. I like Disney movies. I could sit here and watch Cinderella or Snow White over and over until my poor husband turned into a blob of sputtering goo. (And I have him as witness to this fact). I'm 42 years old. If you don't like it, I can show you the door, because I'm allowed to like what I like.
I can defend myself. Not everyone can. Especially kids.
If you are teaching your kid that it isn't OK to like something, you are teaching them to give someone else a hard time- to bully them- if they like it. That is NOT OK. So when you teach your kid that they can't like Elmo anymore because they are a teenage boy, what do you think he will think when he sees another person who likes Elmo? That they are being baby-ish, silly, inappropriate? And how will he handle that feeling? What will stop him from walking up to that person and saying, "Elmo is so babyish! You shouldn't like that anymore, you're not a baby!"
My boys like a lot of things, and many of them are not "typical." The whole idea of "age-appropriate" is arbitrary. When I went to see the last midnight show of the South Park Movie, there were 6-year-olds roaring it up in the theater. That isn't "age-appropriate", either, but obviously that didn't bother their parents. And those kids weren't likely to be bullied about liking South Park, either.
Why would that be?
Why can't my sons like butterflies, rainbows, kittens, unicorns, or any other thing they like? If my son wants to wear pink, why is that a problem? After all, they both look great in it. My grandfather wore pink all the time, and he looked good in it, too.
When I was a kid in school, I was the weird one. I liked black turtlenecks, reading books, writing stories, and running around in the woods. I like bright colored shoes and big earrings. No, I didn't have a lot of friends. I was never invited to a single party (unless the whole of a group was invited- never for me, myself). But I knew I was me, and I could defend myself if anyone dared to actually be brazen enough to comment to my face. I only got beaten up once. I remember it very well, and still remember the older girl- the only other girl in my neighborhood- coming to my rescue, and letting that kid have it. I just could not be anyone else, I couldn't just "fly under the radar" and get into the things other girls were into, and "fit in." I also had an awesome Mom who let me be who I was, and offered many things so I could discover what I liked and what I didn't.
There are plenty of kids out there who cannot defend themselves, or who face bullies who aren't afraid to attack viciously, and even physically. They need our support. Like Twightlight Sparkle, they need true friends to stand with them when they are vulnerable, even physically shield them if necessary, so they can learn who they are and gain the strength they need to be themselves.
I doesn't hurt any boy to emulate Rainbow Dash. Or AppleJack. Or Twightlight Sparkle. Or Rarity, Fluttershy, or even Pinkie Pie. There should be nothing wrong with having strong female characters as your heroes, no matter your gender.
Bullying should never be considered OK.
Kids like what they like. I like Disney movies. I could sit here and watch Cinderella or Snow White over and over until my poor husband turned into a blob of sputtering goo. (And I have him as witness to this fact). I'm 42 years old. If you don't like it, I can show you the door, because I'm allowed to like what I like.
I can defend myself. Not everyone can. Especially kids.
If you are teaching your kid that it isn't OK to like something, you are teaching them to give someone else a hard time- to bully them- if they like it. That is NOT OK. So when you teach your kid that they can't like Elmo anymore because they are a teenage boy, what do you think he will think when he sees another person who likes Elmo? That they are being baby-ish, silly, inappropriate? And how will he handle that feeling? What will stop him from walking up to that person and saying, "Elmo is so babyish! You shouldn't like that anymore, you're not a baby!"
My boys like a lot of things, and many of them are not "typical." The whole idea of "age-appropriate" is arbitrary. When I went to see the last midnight show of the South Park Movie, there were 6-year-olds roaring it up in the theater. That isn't "age-appropriate", either, but obviously that didn't bother their parents. And those kids weren't likely to be bullied about liking South Park, either.
Why would that be?
Why can't my sons like butterflies, rainbows, kittens, unicorns, or any other thing they like? If my son wants to wear pink, why is that a problem? After all, they both look great in it. My grandfather wore pink all the time, and he looked good in it, too.
When I was a kid in school, I was the weird one. I liked black turtlenecks, reading books, writing stories, and running around in the woods. I like bright colored shoes and big earrings. No, I didn't have a lot of friends. I was never invited to a single party (unless the whole of a group was invited- never for me, myself). But I knew I was me, and I could defend myself if anyone dared to actually be brazen enough to comment to my face. I only got beaten up once. I remember it very well, and still remember the older girl- the only other girl in my neighborhood- coming to my rescue, and letting that kid have it. I just could not be anyone else, I couldn't just "fly under the radar" and get into the things other girls were into, and "fit in." I also had an awesome Mom who let me be who I was, and offered many things so I could discover what I liked and what I didn't.
There are plenty of kids out there who cannot defend themselves, or who face bullies who aren't afraid to attack viciously, and even physically. They need our support. Like Twightlight Sparkle, they need true friends to stand with them when they are vulnerable, even physically shield them if necessary, so they can learn who they are and gain the strength they need to be themselves.
I doesn't hurt any boy to emulate Rainbow Dash. Or AppleJack. Or Twightlight Sparkle. Or Rarity, Fluttershy, or even Pinkie Pie. There should be nothing wrong with having strong female characters as your heroes, no matter your gender.
Bullying should never be considered OK.
Sunday, March 16, 2014
Skyriding
It's been a very long time.
When the boys were smaller, I would regularly take them on adventures. In fact, every good weather weekend was time to be out and about, anything and everything. We went to the zoo. We went to the farm. We went to museums. We went to Maymont. We went to the park. We went to Williamsburg and Jamestowne. We'd visit friends in DC. We went for walks at Wakefield. We get in the car and off we'd go, often with Grandma in tow.
Most of the time, it was just me and my boys. JoeyAndyDad often had to work. I learned the drill for handling two boys by myself. I carried an emergency adventure kit with me: toys, fidgets, bandaids/first aid kit, water, washcloths/small towels (never leave home without your towel!), wet wipes, chewy candy, small snacks, a spare totem (whatever Joey was carrying around- such as a diecast bus or a wooden spoon), sunscreen, lip balm, spare bags, a spare set of clothes for each child, small change and dollar bills. I was ready.
We had great adventures. We've done our share of rock collecting. We've chased chickens and picked pumpkins. We've seen dinosaurs. We've seen lots of dinosaurs. We've checked out colonial ships. We've made friends with some otters. Maybe even too friendly. We met the Queen (well, the RenFaire one, anyway). We dropped pencils on the coral reef exhibit in Baltimore. We even got attacked by turkeys. Adventures rock.
Lately, taking them by myself has been... not a good idea. Even going to the park has been, for the most part, a disaster. With both boys increasingly brittle and Joey's bolting, I've been sticking to controlled settings. The pool is fenced, and has lifeguards about who are told about Joey. The parks we do go to have clear boundaries I can enforce and see clearly. Nature centers have walls.
However, work was cancelled today, its going to snow tomorrow, and I just couldn't bear to waste a 70-degree day. JoeyAndyDad wasn't feeling hot, so we left him home to rest up, and headed to the Richmond Zoo. I figured I could corral them with the budgies if all else failed.
I forgot part of my kit, because ts been a long time since I needed one. Folks, do NOT forget your sunscreen. Or your towel.
We managed to have a fabulous afternoon, anyway. There were lots of people, but nothing that made us feel overwhelmed with crowd. Unfortunately, the giraffes and budgies weren't very hungry, having chowed on birdseed and animal food all day, but we discovered that most folks don't know you can also feed the elk, the warthog, or several other animals with tubes to their pens for the purpose. Andy, however, did figure it out. I should mention that elk are much bigger than I thought. With horns I would not want to meet in a dark alley.
We also took the sky ride. Andy got nervous with the height, but with the lovely weather and great view of the cheetahs and rhinos, he managed to like it. Joey loved it. And they got to ride together, with mom in the car just behind them, which was apparently a happy adventure in and of itself.
They have also put up an awesome play area, and Andy would have stayed there for hours if I had let him. Lots of climbing and sliding and stuff.
We did manage to get a budgie on a stick, and we got the giraffe to take a nibble. All was well with the world.
Yes, we managed to have a successful adventure. No meltdowns. No whining. Tired, happy boys. Thank you, Richmond Zoo.
When the boys were smaller, I would regularly take them on adventures. In fact, every good weather weekend was time to be out and about, anything and everything. We went to the zoo. We went to the farm. We went to museums. We went to Maymont. We went to the park. We went to Williamsburg and Jamestowne. We'd visit friends in DC. We went for walks at Wakefield. We get in the car and off we'd go, often with Grandma in tow.
Most of the time, it was just me and my boys. JoeyAndyDad often had to work. I learned the drill for handling two boys by myself. I carried an emergency adventure kit with me: toys, fidgets, bandaids/first aid kit, water, washcloths/small towels (never leave home without your towel!), wet wipes, chewy candy, small snacks, a spare totem (whatever Joey was carrying around- such as a diecast bus or a wooden spoon), sunscreen, lip balm, spare bags, a spare set of clothes for each child, small change and dollar bills. I was ready.
We had great adventures. We've done our share of rock collecting. We've chased chickens and picked pumpkins. We've seen dinosaurs. We've seen lots of dinosaurs. We've checked out colonial ships. We've made friends with some otters. Maybe even too friendly. We met the Queen (well, the RenFaire one, anyway). We dropped pencils on the coral reef exhibit in Baltimore. We even got attacked by turkeys. Adventures rock.
Lately, taking them by myself has been... not a good idea. Even going to the park has been, for the most part, a disaster. With both boys increasingly brittle and Joey's bolting, I've been sticking to controlled settings. The pool is fenced, and has lifeguards about who are told about Joey. The parks we do go to have clear boundaries I can enforce and see clearly. Nature centers have walls.
However, work was cancelled today, its going to snow tomorrow, and I just couldn't bear to waste a 70-degree day. JoeyAndyDad wasn't feeling hot, so we left him home to rest up, and headed to the Richmond Zoo. I figured I could corral them with the budgies if all else failed.
I forgot part of my kit, because ts been a long time since I needed one. Folks, do NOT forget your sunscreen. Or your towel.
We managed to have a fabulous afternoon, anyway. There were lots of people, but nothing that made us feel overwhelmed with crowd. Unfortunately, the giraffes and budgies weren't very hungry, having chowed on birdseed and animal food all day, but we discovered that most folks don't know you can also feed the elk, the warthog, or several other animals with tubes to their pens for the purpose. Andy, however, did figure it out. I should mention that elk are much bigger than I thought. With horns I would not want to meet in a dark alley.
We also took the sky ride. Andy got nervous with the height, but with the lovely weather and great view of the cheetahs and rhinos, he managed to like it. Joey loved it. And they got to ride together, with mom in the car just behind them, which was apparently a happy adventure in and of itself.
They have also put up an awesome play area, and Andy would have stayed there for hours if I had let him. Lots of climbing and sliding and stuff.
We did manage to get a budgie on a stick, and we got the giraffe to take a nibble. All was well with the world.
Yes, we managed to have a successful adventure. No meltdowns. No whining. Tired, happy boys. Thank you, Richmond Zoo.
Wednesday, March 05, 2014
Swords in the Hand
It's a meltdown.
What was the trigger? I can't be sure now. But the words that come from my child's lips are not his own. They are horrible, ugly, painful. He's been working hard not to use them, but when the pain is there, they capture it so well, project it so well.
The words he calls me are nothing. You all know them, everybody uses them. If we completely squash them, as he gets older and it becomes the norm for people to use them, it will only emphasize his differences. Adults use them all the time, after all. And its the pain he's trying to communicate. The frustration, the anger, the shake-me-because-I'm-not-getting-it pain. I get that. I may not like it, but I get it.
It's the words he directs at himself that really take me by the heart and soul. The self-deprecation. The words he uses for it. Yes, we know those words, too. Stupid. Ugly. Fat bastard. Sometimes he sprinkles them with the fancy words that he prefers, such as scoundrel, smart alec, aggressive, repugnant, obnoxious. Then there is his new star word:
Retard.
Yes, we all know the word. We know what it means. We know how it is used. We know Joey hears it applied to him.
He hears you. He knows what you are saying, and what you mean. He knows it is an ugly, deliberately painful word. It's a sword in his hand.
When we talk about SIBs, we often talk about physical injury. People who bite themselves. Cut themselves. Hit their heads against things, or punch themselves bloody. We know it is scary (though until it is someone you love, you can't imagine how scary it can be.) We may even understand the extension of that pain and injury to others: people who lash out, throw things, flail, become aggressive in the face of the frustration, the stress, the disorientation, the pain.They are "challenging behaviors." We want them to stop. And when we understand the source, we know its not our pain that needs to stop, not our frustration that really matters. It's theirs.
What about those whose self-injury is invisible? What about self-deprecation? What about self-injury that is psychological?
The mental health system in this country is already a shambles. Now try to get help for someone who needs specialized care; a person with autism can't just walk into an office and start seeing any social worker or therapist. A person with autism needs help from someone who understands autism, who understands the issues of communication and regulation, who really gets it. Until the therapist gets it, he or she cannot help you get it. When trying to communicate these issues to Joey's last principal- a person who was supposed to be a psychologist, knowledgeable in special needs- I got told Joey might have emotional disturbance.
I knew there was nothing more to say there. Even the people who are supposed to "get it" often have no clue when presented with someone with autism who needs help. How are we supposed to help Joey cope with his pain, find constructive ways to communicate and deal with frustration, to help him grow into an adult who can care for himself, if we can't even find someone to help us who understands the challenge?
One of the ways we work hard to help Joey is by giving him language to use. We try to turn his echolalic skills into something helpful and constructive. It is a skill, a talent, a strength like any other; so feed him the language that he can use, words he can fall back on.
Yet we fight an uphill battle, because we are also trying to help him understand how he is a whole, wonderful, capable person, in a world that see him as less. A world that has given him language that hurts him. A world that, despite his talents, his intelligence, his kindness, his creativity, his imagination, his empathy, his strengths- see him in the light of less, and in the light of the word that runs bitter from his mouth: retard.
Just as we all have our own challenges and special needs, we all have strengths and we all have weaknesses, why must we take perfectly good words, and infuse them with hate? With derision? With pain?
It is no longer a perfectly good word. Please stop. I assure you, he hears you. He knows you mean him. And he knows it is a word that means pain.
More pain that I hope you ever, ever face.
What was the trigger? I can't be sure now. But the words that come from my child's lips are not his own. They are horrible, ugly, painful. He's been working hard not to use them, but when the pain is there, they capture it so well, project it so well.
The words he calls me are nothing. You all know them, everybody uses them. If we completely squash them, as he gets older and it becomes the norm for people to use them, it will only emphasize his differences. Adults use them all the time, after all. And its the pain he's trying to communicate. The frustration, the anger, the shake-me-because-I'm-not-getting-it pain. I get that. I may not like it, but I get it.
It's the words he directs at himself that really take me by the heart and soul. The self-deprecation. The words he uses for it. Yes, we know those words, too. Stupid. Ugly. Fat bastard. Sometimes he sprinkles them with the fancy words that he prefers, such as scoundrel, smart alec, aggressive, repugnant, obnoxious. Then there is his new star word:
Retard.
Yes, we all know the word. We know what it means. We know how it is used. We know Joey hears it applied to him.
He hears you. He knows what you are saying, and what you mean. He knows it is an ugly, deliberately painful word. It's a sword in his hand.
When we talk about SIBs, we often talk about physical injury. People who bite themselves. Cut themselves. Hit their heads against things, or punch themselves bloody. We know it is scary (though until it is someone you love, you can't imagine how scary it can be.) We may even understand the extension of that pain and injury to others: people who lash out, throw things, flail, become aggressive in the face of the frustration, the stress, the disorientation, the pain.They are "challenging behaviors." We want them to stop. And when we understand the source, we know its not our pain that needs to stop, not our frustration that really matters. It's theirs.
What about those whose self-injury is invisible? What about self-deprecation? What about self-injury that is psychological?
The mental health system in this country is already a shambles. Now try to get help for someone who needs specialized care; a person with autism can't just walk into an office and start seeing any social worker or therapist. A person with autism needs help from someone who understands autism, who understands the issues of communication and regulation, who really gets it. Until the therapist gets it, he or she cannot help you get it. When trying to communicate these issues to Joey's last principal- a person who was supposed to be a psychologist, knowledgeable in special needs- I got told Joey might have emotional disturbance.
I knew there was nothing more to say there. Even the people who are supposed to "get it" often have no clue when presented with someone with autism who needs help. How are we supposed to help Joey cope with his pain, find constructive ways to communicate and deal with frustration, to help him grow into an adult who can care for himself, if we can't even find someone to help us who understands the challenge?
One of the ways we work hard to help Joey is by giving him language to use. We try to turn his echolalic skills into something helpful and constructive. It is a skill, a talent, a strength like any other; so feed him the language that he can use, words he can fall back on.
Yet we fight an uphill battle, because we are also trying to help him understand how he is a whole, wonderful, capable person, in a world that see him as less. A world that has given him language that hurts him. A world that, despite his talents, his intelligence, his kindness, his creativity, his imagination, his empathy, his strengths- see him in the light of less, and in the light of the word that runs bitter from his mouth: retard.
Just as we all have our own challenges and special needs, we all have strengths and we all have weaknesses, why must we take perfectly good words, and infuse them with hate? With derision? With pain?
It is no longer a perfectly good word. Please stop. I assure you, he hears you. He knows you mean him. And he knows it is a word that means pain.
More pain that I hope you ever, ever face.
Saturday, March 01, 2014
One Step At A Time
Letting Joey out of my sight right now is like watching a child take a plunge off the diving board for the first time. You know they can do it. You've seen them swim, there is a lifeguard right there just in case, but you still hold your breath and pray hard until that head comes back up out of the water. And for us, we still watch them like hawks at the pool. It's what parents do.
But it is all that much more when you know your child is a bolter. An eloper. When you read a story in the news about a child who "wandered" away, and the tragedy of losing that child forever, and you ache for that family not just for their loss, but to know that, but for the Grace of God, there your path lay. It could be you next time, weathering the barrage of ugly comments about how horrible a parent you are to have ever let your child out of your sight and "letting" them escape.
It could be us.
So you have to know how huge a step it is to let my 11-year-old son go to the corner, by himself, to wait for his brother's bus. There are adults there, and they are all aware of Joey and his needs. They know I am sitting on the porch, a loud yell away. Joey is so proud of himself, going to get his brother all by himself. It's a little bit of independence.
I still wasn't ready for today.
We have neighbors around the corner, and we have often had the kids here, or gone over there. Their oldest is just under Andy's age, and their middle one thinks Joey is the bees' knees. They are wonderful, awesome people, who think my kids rock. Now that their oldest is into Pokemon, he and Andy are really going back and forth a lot more. There have been lots of "I'll see you tomorrow"s and "I'll come by later"s. There have been children appearing in my house like magic. It's pretty awesome.
Today, Andy decided he wanted to go over there instead. It's a few houses down as the bird flies, only a few more as the sidewalk turns. Nothing unusual for a 9-year-old, to go over and play at a friend's house when living in a town. Except I don't have usual kids. We said OK, because I knew I could ring over to the other house and alert them, just as I call and let them know when one of their kids appears here.
Then the words appeared, slashing through the air and dancing on my nerves with an odd, shimmering vibration:
"Come on, Joey, let's go!"
That Joey was coming, too, was just a foregone thing to Andy. I was going, and therefore Joey was going. He was old enough, so Joey was old enough. It was simply the way it was.
I balked. I know, all that assume competence and have faith and believe in your kids and all that, but if one small thing went wrong on the walk to the other house, Joey might be off to the races. Andy might say something wrong. Joey might trip and fall. Even the smallest thing can become a sudden and dramatic big deal. Besides, they would have to go around the corner to get to this house. I couldn't just watch them from the porch or even an upper window.
Joey would have to go out of my sight, and with only Andy to help him.
Joey knows we balked. We explained to him why, because you know what? He has the right to know that we are concerned about him running. We are worried about his well being and safety when he bolts. He love him.
And then we decided to let him go.
When I was still pregnant, I remember my mom saying something about parenting being a constant letting-go. She also said something about it hurting. My mom is a smart lady.
When I called, they didn't pick up the phone, so I pulled on my coat and shoes and trotted after the guys. If the neighbors were not there for some reason, Joey might melt down after the anticipation of going to see them. I got to the corner, and stared down it. They were no where in sight. I opened my phone to call again, and found the battery was dead. So I trotted the rest of the way to make sure they made it. They had. The family was there. All was well with the world.
So I went home.
But it is all that much more when you know your child is a bolter. An eloper. When you read a story in the news about a child who "wandered" away, and the tragedy of losing that child forever, and you ache for that family not just for their loss, but to know that, but for the Grace of God, there your path lay. It could be you next time, weathering the barrage of ugly comments about how horrible a parent you are to have ever let your child out of your sight and "letting" them escape.
It could be us.
So you have to know how huge a step it is to let my 11-year-old son go to the corner, by himself, to wait for his brother's bus. There are adults there, and they are all aware of Joey and his needs. They know I am sitting on the porch, a loud yell away. Joey is so proud of himself, going to get his brother all by himself. It's a little bit of independence.
I still wasn't ready for today.
We have neighbors around the corner, and we have often had the kids here, or gone over there. Their oldest is just under Andy's age, and their middle one thinks Joey is the bees' knees. They are wonderful, awesome people, who think my kids rock. Now that their oldest is into Pokemon, he and Andy are really going back and forth a lot more. There have been lots of "I'll see you tomorrow"s and "I'll come by later"s. There have been children appearing in my house like magic. It's pretty awesome.
Today, Andy decided he wanted to go over there instead. It's a few houses down as the bird flies, only a few more as the sidewalk turns. Nothing unusual for a 9-year-old, to go over and play at a friend's house when living in a town. Except I don't have usual kids. We said OK, because I knew I could ring over to the other house and alert them, just as I call and let them know when one of their kids appears here.
Then the words appeared, slashing through the air and dancing on my nerves with an odd, shimmering vibration:
"Come on, Joey, let's go!"
That Joey was coming, too, was just a foregone thing to Andy. I was going, and therefore Joey was going. He was old enough, so Joey was old enough. It was simply the way it was.
I balked. I know, all that assume competence and have faith and believe in your kids and all that, but if one small thing went wrong on the walk to the other house, Joey might be off to the races. Andy might say something wrong. Joey might trip and fall. Even the smallest thing can become a sudden and dramatic big deal. Besides, they would have to go around the corner to get to this house. I couldn't just watch them from the porch or even an upper window.
Joey would have to go out of my sight, and with only Andy to help him.
Joey knows we balked. We explained to him why, because you know what? He has the right to know that we are concerned about him running. We are worried about his well being and safety when he bolts. He love him.
And then we decided to let him go.
When I was still pregnant, I remember my mom saying something about parenting being a constant letting-go. She also said something about it hurting. My mom is a smart lady.
When I called, they didn't pick up the phone, so I pulled on my coat and shoes and trotted after the guys. If the neighbors were not there for some reason, Joey might melt down after the anticipation of going to see them. I got to the corner, and stared down it. They were no where in sight. I opened my phone to call again, and found the battery was dead. So I trotted the rest of the way to make sure they made it. They had. The family was there. All was well with the world.
So I went home.
Thursday, February 20, 2014
Dysgraphic
I sat with Andy on the couch, the two of us; Joey tapping at his computer looking up moon phases. We had just finished another Encyclopedia Brown mystery; he had read most it if himself. Now he had to write abut the main idea. A sentence of two, that was all. He looked tired. Reading is hard work for Andy, because he has to keep his eyes carefully focused. I still catch him cheating a little, guessing at words instead of reading them. Sometimes its because he's tired and can't focus anymore, physically forcing the convergence of his vision. Sometimes he can't do any more processing. And sometimes, I wonder if he isn't dyslexic, and has just learned to fake it.
"You read it better," he sighed, though he seems proud after reading the solution. He almost got it right. He was on the right track, which I think is awesome.
"I practice all the time." This is a sort of scripted answer, one I use as a reminder to both of my boys that things don't come easy. Skills don't come easy. As if they didn't have to work at every little thing, all the time, far more than the kids around them.
We manage to get the sentence down. One sentence is all he can write, and you can see the fatigue- the letters are everywhere, and I watch as he uses strange strokes to create them. I have to spell most of the words for him. Words like "police", "tricked", "left." He got a zero on his last spelling test. Not a single one right. They were long words. He mostly left out vowels.
He sets the paper aside.
"How did you like the story?" I ask. I have done it on purpose. I don't have long to wait, and here it comes. The torrent of words. He retells the story to me. Sometimes he half-whispers the last word or two of a sentence under his breath, before going on to the next one. Then he starts talking about his favorite bits. That part is a bit of word and sentence salad, but cohesive enough for me to follow if I pay attention. He giggles over the solution, a little detail that made the whole clear, he thinks he'll be able to solve the next one.
"But you read the next one," he says, looking at me uncertainly. "I remember it better when you read them."
I know this is true. If I read it, there is less word salad after. The ideas are clearer, so long as I don't ask him to write them down. I wish I could make it easier. I wish there were some better programs out there to capture speech- one that wouldn't balk at his tongue-thrusting, lisping speech; one that could keep up with the furious tumble of words. Amidst that word salad, there are some great ideas, solid thoughts, keen observations for a 9-year-old.
He finally realizes homework is done, and he can play his Minecraft. As he bounces off, I know what my plan of action is.
Buy more Encyclopedia Brown.
"You read it better," he sighed, though he seems proud after reading the solution. He almost got it right. He was on the right track, which I think is awesome.
"I practice all the time." This is a sort of scripted answer, one I use as a reminder to both of my boys that things don't come easy. Skills don't come easy. As if they didn't have to work at every little thing, all the time, far more than the kids around them.
We manage to get the sentence down. One sentence is all he can write, and you can see the fatigue- the letters are everywhere, and I watch as he uses strange strokes to create them. I have to spell most of the words for him. Words like "police", "tricked", "left." He got a zero on his last spelling test. Not a single one right. They were long words. He mostly left out vowels.
He sets the paper aside.
"How did you like the story?" I ask. I have done it on purpose. I don't have long to wait, and here it comes. The torrent of words. He retells the story to me. Sometimes he half-whispers the last word or two of a sentence under his breath, before going on to the next one. Then he starts talking about his favorite bits. That part is a bit of word and sentence salad, but cohesive enough for me to follow if I pay attention. He giggles over the solution, a little detail that made the whole clear, he thinks he'll be able to solve the next one.
"But you read the next one," he says, looking at me uncertainly. "I remember it better when you read them."
I know this is true. If I read it, there is less word salad after. The ideas are clearer, so long as I don't ask him to write them down. I wish I could make it easier. I wish there were some better programs out there to capture speech- one that wouldn't balk at his tongue-thrusting, lisping speech; one that could keep up with the furious tumble of words. Amidst that word salad, there are some great ideas, solid thoughts, keen observations for a 9-year-old.
He finally realizes homework is done, and he can play his Minecraft. As he bounces off, I know what my plan of action is.
Buy more Encyclopedia Brown.
Friday, February 14, 2014
Wednesday, February 12, 2014
Unconditional
I've spent the last few months watching people get torn up and verbally masticated over the very complex notion of friendship. What is it? What does it mean? When you love someone unconditionally, are there really no conditions? And if they do something horrible and terrible, what do you do? Are you suddenly, "well, I love you and I'm your friend and all, unless you do something horrible. Then you're on your own." If someone has made a horrible, terrible mistake, done a horrible, terrible thing, torn up lives and people and the cosmos, isn't that the exact moment they need a friend the most? Does being someone's friend, and loving them unconditionally, mean you condone everything they say and everything they do?
Friendship is not black and white. That makes it very difficult for many people to navigate. That is why middle school is so hard- kids wake up to what it really means to be a friend, have a friend, need a friend, and at the same time developmentally needing things to be clear and defined. It can be difficult to grasp the fact that friends love each other, true friends love each other unconditionally, and yet they still fight, they still disagree, they are still separate, individual people with their own views, their own experiences, their own values. Individuals don't match up 1:1 down to the last fiber. That is part of being human. Actually, it is part of being.
People make mistakes. They make bad decisions. These can be horrible, ugly, wrenching, devastating mistakes and decisions. We often spend a lot of time and resources trying not to, but it happens. Is that the time you would want to be abandoned by the people who are supposed to be your friends? Would you want your friends to be pilloried, slandered, crucified, insulted, threatened, bullied, torn apart, put down, crushed, and spat at, simply because they still love you, still try to help you, still stand by you when you need them most? If someone you love did something terrible, would you stand by them and try to help them? And does trying to help them mean you condone their actions? What is "help"?
I don't have an army of friends out there. It's not how I am. I've said it before- each and every friend is precious to me, and they are my friends because they are awesome people. That doesn't make you all perfect angels. That's doesn't mean you don't make mistakes. Sometimes big mistakes. Big, honking, holy-cow-world-ending mistakes. And if you make those big mistakes, I'm still here to help and love you. Always. You may not like what I say, or do, or what is needful or helpful. Support is not always easy, just as supporting is not always easy.
When Joey makes a mistake, and I need to shut down his electronics time to help him understand his mistake, try to fix his mistake, and learn not to make that mistake again, it isn't easy. I still love him. I don't condone the mistake. I don't condone the meltdown from the consequence of the mistake. I don't condone him cussing up a storm, calling me names, flailing at me. But I do my best to help him, because I love him, every minute, every day, all the time, always. Unconditionally. Absolutely. Just as much as when he's giggling and dragging me out the door to look at the moon, just as much as when he is covering me in kisses, just as much as when he is helping his brother learn a new game- I love him.
That's what I mean when I say, "I love you guys." That's what it means when I say, "friends are family." And when I say, "we're friends", that is no small thing.
And maybe its a bit more black and white that some would like it to be; or black and white in a different way. Personally, I think it's full technicolor wowness. That's friendship for you.
Friendship is not black and white. That makes it very difficult for many people to navigate. That is why middle school is so hard- kids wake up to what it really means to be a friend, have a friend, need a friend, and at the same time developmentally needing things to be clear and defined. It can be difficult to grasp the fact that friends love each other, true friends love each other unconditionally, and yet they still fight, they still disagree, they are still separate, individual people with their own views, their own experiences, their own values. Individuals don't match up 1:1 down to the last fiber. That is part of being human. Actually, it is part of being.
People make mistakes. They make bad decisions. These can be horrible, ugly, wrenching, devastating mistakes and decisions. We often spend a lot of time and resources trying not to, but it happens. Is that the time you would want to be abandoned by the people who are supposed to be your friends? Would you want your friends to be pilloried, slandered, crucified, insulted, threatened, bullied, torn apart, put down, crushed, and spat at, simply because they still love you, still try to help you, still stand by you when you need them most? If someone you love did something terrible, would you stand by them and try to help them? And does trying to help them mean you condone their actions? What is "help"?
I don't have an army of friends out there. It's not how I am. I've said it before- each and every friend is precious to me, and they are my friends because they are awesome people. That doesn't make you all perfect angels. That's doesn't mean you don't make mistakes. Sometimes big mistakes. Big, honking, holy-cow-world-ending mistakes. And if you make those big mistakes, I'm still here to help and love you. Always. You may not like what I say, or do, or what is needful or helpful. Support is not always easy, just as supporting is not always easy.
When Joey makes a mistake, and I need to shut down his electronics time to help him understand his mistake, try to fix his mistake, and learn not to make that mistake again, it isn't easy. I still love him. I don't condone the mistake. I don't condone the meltdown from the consequence of the mistake. I don't condone him cussing up a storm, calling me names, flailing at me. But I do my best to help him, because I love him, every minute, every day, all the time, always. Unconditionally. Absolutely. Just as much as when he's giggling and dragging me out the door to look at the moon, just as much as when he is covering me in kisses, just as much as when he is helping his brother learn a new game- I love him.
That's what I mean when I say, "I love you guys." That's what it means when I say, "friends are family." And when I say, "we're friends", that is no small thing.
And maybe its a bit more black and white that some would like it to be; or black and white in a different way. Personally, I think it's full technicolor wowness. That's friendship for you.
Monday, February 10, 2014
Report Cards Can Go Suck It.
Yep, its Report Card Day here in JoeyWorld. Joey's came home Friday, but I didn't get to look at it until this morning. Andy's will be here this afternoon. I'll keep you posted.
The way report cards are done here, everyone is supposedly graded on the same measurements. In other words, Joey's report card reflects his work against that of his non-disabled peers, and the standards of all 6th graders in his school. In that context, getting a C in English is a downright miracle, given his communication and language disabilities. A B in History? With a child for whom historical time* is an ungrasped abstract concept and these events seem to have no relevance or meaning? Let's PAR-TAY!!! A B- in math, however, is highly confusing. He's been doing the math I've been seeing come home for 3-4 years already, and does these sheets perfectly in about 10 minutes. Plural, sheets, as long as there is minimal language involved. I am going to assume this means they are giving him a lot of word problems. With all we've been working on with his language and reading skills and communication disabilities, I'm tempting to again PAR-TAY! Joey is rocking the world!
But it also means he won't be honor roll again, and honor roll is something that is very poignantly significant to him. It is touted as a mark of success, and not participating is therefore, in a back-and-white world, the very essence of failure.
Joey noticed I was looking at the report, and so I asked about some of the comments the teacher made, such as "low quiz grades." That is when things starting spiraling. He only got 30s on quizzes, that he was a "stupid retard" and "retards aren't allowed to pass quizzes". Though my heart shattered in a million shards of grief, I also knew he was speaking Joey. This word means Pain. It means Heartbreak. He was telling me of frustration, anger, disappointment, and pain all in one fell swoop of verbiage.
This is a word he knows people use to refer to him, and has fully grasped what it means. And like any other word, he has emotions attached to it, and is ready to use as a placeholder for expressing those emotions.
I already have my letter in to his teachers, trying to pinpoint the issues that need to be addressed. Are his accommodations appropriate and effective? Are these grades reflecting his efforts? I also took some steps here, the same we have done for his brother- "A" quizzes means prizes, in an effort to get him to take them seriously and try to do his best on them. But what if, with all the language involved, all the issues of testing, all the problems of balancing accommodations, expecting an A really is too much? Will not getting a prize be just a reinforcement of failure?
When Joey gets home, a certificate will be awaiting him. It will be, in essence, "You are awesome. Let's PAR-TAY!!!!" Because he totally deserves one.
*Yes, there is a difference between abstract time concepts and practical time concepts. Joey can gladly tell you exactly what time it is. His new interest in moon phases has been helpful in getting him to grasp the idea of cycles and years. But that something happened 200 years ago? Unfathomable for him right now. He has a very, very basic understanding. For him, 200 years ago is "once upon a time", and has very little difference from 2000 years ago.
The way report cards are done here, everyone is supposedly graded on the same measurements. In other words, Joey's report card reflects his work against that of his non-disabled peers, and the standards of all 6th graders in his school. In that context, getting a C in English is a downright miracle, given his communication and language disabilities. A B in History? With a child for whom historical time* is an ungrasped abstract concept and these events seem to have no relevance or meaning? Let's PAR-TAY!!! A B- in math, however, is highly confusing. He's been doing the math I've been seeing come home for 3-4 years already, and does these sheets perfectly in about 10 minutes. Plural, sheets, as long as there is minimal language involved. I am going to assume this means they are giving him a lot of word problems. With all we've been working on with his language and reading skills and communication disabilities, I'm tempting to again PAR-TAY! Joey is rocking the world!
But it also means he won't be honor roll again, and honor roll is something that is very poignantly significant to him. It is touted as a mark of success, and not participating is therefore, in a back-and-white world, the very essence of failure.
Joey noticed I was looking at the report, and so I asked about some of the comments the teacher made, such as "low quiz grades." That is when things starting spiraling. He only got 30s on quizzes, that he was a "stupid retard" and "retards aren't allowed to pass quizzes". Though my heart shattered in a million shards of grief, I also knew he was speaking Joey. This word means Pain. It means Heartbreak. He was telling me of frustration, anger, disappointment, and pain all in one fell swoop of verbiage.
This is a word he knows people use to refer to him, and has fully grasped what it means. And like any other word, he has emotions attached to it, and is ready to use as a placeholder for expressing those emotions.
I already have my letter in to his teachers, trying to pinpoint the issues that need to be addressed. Are his accommodations appropriate and effective? Are these grades reflecting his efforts? I also took some steps here, the same we have done for his brother- "A" quizzes means prizes, in an effort to get him to take them seriously and try to do his best on them. But what if, with all the language involved, all the issues of testing, all the problems of balancing accommodations, expecting an A really is too much? Will not getting a prize be just a reinforcement of failure?
When Joey gets home, a certificate will be awaiting him. It will be, in essence, "You are awesome. Let's PAR-TAY!!!!" Because he totally deserves one.
*Yes, there is a difference between abstract time concepts and practical time concepts. Joey can gladly tell you exactly what time it is. His new interest in moon phases has been helpful in getting him to grasp the idea of cycles and years. But that something happened 200 years ago? Unfathomable for him right now. He has a very, very basic understanding. For him, 200 years ago is "once upon a time", and has very little difference from 2000 years ago.
Tuesday, February 04, 2014
Shadow
Spring is coming.
For most folks, that means crocus, daffodils, and colored eggs. You know, baby chicks and new veggies and cherry blossoms.
For us, it means the next major regression with the change of season, anxiety attacks, and battening of hatches for the coming crisis. Does that sound harsh? Personally, I'd rather be prepped and have it not happen for the first time ever, than not be prepped and have a major catastrophe. The last school never prepped, even though we warned them, every year. And every year, they had catastrophe. I'm totally battening.
We've gotten the first whiffs of that spring breeze this week. After mostly calming down into Christmas, and making it through Christmas par for the course, we had snow. This meant school being cancelled. But Joey had already not been in school for two days of that first week back, because he had this mysterious illness. He would conk out for first period, with coughing, headache, complaining of tummy, falling asleep. He would be sent to the nurse. The nurse would call me. I would go pick him up. He would reach the car, and all symptoms would mysteriously disappear. One day, I actually called him in sick, and they mysteriously disappeared when the bus passed by the door.
So this last time he got sent home, Grandma and I came and got him, and took him out to Grandma's, and let Grandma work her magic. Why didn't he want to be in school? What was making him anxious and feel bad?
The interpretation of the data we got, spoken in Joey, is that Joey is feeling teased and bored. The math sheets sent home with him was stuff he's been using as a perseveration game since he was six. The history reading is totally baffling to him, as he has difficulty grasping abstract time and events have little relevance to him. He's in middle school, and even non-autistic middle schoolers start feeling the social pressure- so you can imagine Joey, with even fewer coping mechanisms or skills to fight the negative internal monologue of middle school than his peers, trying to navigate. This is headed to catastrophe.
This morning, when the nurse called again, I asked he be sent to counseling. I don't think they talked about what he needed talked about, but it got him calmed and back to his class for lessons, until he disagreed with something on an English test. Already brittle, it sent him into flight mode. Yes, they caught him. And thankfully, these folks have been working on back-up for when he runs, since they had so much of it already. They managed to catch him and get a card in his hands that said something like "Rock Brain Moment- Go to the Cool Zone!" and he managed with the visual and tangible to pull himself together enough to get to his Cool Zone. They had been practicing with this card for a while, prepping for just this moment. It worked.
Can I get a "GO, MRS. C!" (She's the autism resource person doing the card thing).
But just as I went out to make sure we had ice melt, even though we've already had our quota of snow for the year, I continue to prepare. I don't see this bolt as an end. I know it is the first signs of coming anxiety.
So no matter what the groundhog says, here comes Spring. Are we ready?
For most folks, that means crocus, daffodils, and colored eggs. You know, baby chicks and new veggies and cherry blossoms.
For us, it means the next major regression with the change of season, anxiety attacks, and battening of hatches for the coming crisis. Does that sound harsh? Personally, I'd rather be prepped and have it not happen for the first time ever, than not be prepped and have a major catastrophe. The last school never prepped, even though we warned them, every year. And every year, they had catastrophe. I'm totally battening.
We've gotten the first whiffs of that spring breeze this week. After mostly calming down into Christmas, and making it through Christmas par for the course, we had snow. This meant school being cancelled. But Joey had already not been in school for two days of that first week back, because he had this mysterious illness. He would conk out for first period, with coughing, headache, complaining of tummy, falling asleep. He would be sent to the nurse. The nurse would call me. I would go pick him up. He would reach the car, and all symptoms would mysteriously disappear. One day, I actually called him in sick, and they mysteriously disappeared when the bus passed by the door.
So this last time he got sent home, Grandma and I came and got him, and took him out to Grandma's, and let Grandma work her magic. Why didn't he want to be in school? What was making him anxious and feel bad?
The interpretation of the data we got, spoken in Joey, is that Joey is feeling teased and bored. The math sheets sent home with him was stuff he's been using as a perseveration game since he was six. The history reading is totally baffling to him, as he has difficulty grasping abstract time and events have little relevance to him. He's in middle school, and even non-autistic middle schoolers start feeling the social pressure- so you can imagine Joey, with even fewer coping mechanisms or skills to fight the negative internal monologue of middle school than his peers, trying to navigate. This is headed to catastrophe.
This morning, when the nurse called again, I asked he be sent to counseling. I don't think they talked about what he needed talked about, but it got him calmed and back to his class for lessons, until he disagreed with something on an English test. Already brittle, it sent him into flight mode. Yes, they caught him. And thankfully, these folks have been working on back-up for when he runs, since they had so much of it already. They managed to catch him and get a card in his hands that said something like "Rock Brain Moment- Go to the Cool Zone!" and he managed with the visual and tangible to pull himself together enough to get to his Cool Zone. They had been practicing with this card for a while, prepping for just this moment. It worked.
Can I get a "GO, MRS. C!" (She's the autism resource person doing the card thing).
But just as I went out to make sure we had ice melt, even though we've already had our quota of snow for the year, I continue to prepare. I don't see this bolt as an end. I know it is the first signs of coming anxiety.
So no matter what the groundhog says, here comes Spring. Are we ready?
Saturday, January 25, 2014
One of the Tribe
Soccer practice can be chilly and long. We had arrived at the field, and Andy was in one of his I-haven't-had-enough-food-and-am-out-of-fuel moods. Joey was edgy, knowing he had an hour wait in front of him, echoing away with his script of math problems that made him giggle. We had been there a few minutes, but the coach wasn't there yet. Another little boy, much smaller than Andy, was running about in antsy frustration as well. They were like two peas in a pod, though Andy is always oldest (his birthday is a week after cutoff), and this boy was probably among the youngest. I let Andy run. It was better than the brittleness I knew was coming. I didn't have any snacks in the car, I hadn't made it to the grocery store.
Joey did was Joey does, especially if he is uncomfortable and knows I am trying to work with Andy. He walked up to a complete stranger and started talking.
This stranger was soon barraged with math questions, liberally sprinkled with Joey's favorite, "What is eight times zero?" But Joey says it like this:
(Giggling madly)
WHAT is EIGHT times ZEEEEEEEEE-RRROOOOO?
(More mad giggling)
Yep. That's scripting. And the answer, as you know, is Zero. Every. Single. Time.
Andy started to break down. I couldn't break off to pull Joey to a chair. I could hear the patient answers, each question answered in a soft, factual voice, calm, as if this was an ordinary game one played with 9-year-olds you didn't know.
Andy was on the ground. Done. Tears. I managed to get him to the car, a short distance, but far enough to make me cringe. Joey was still bolting, and could do it at any second. To let him out of my range, out of my sight, with a complete stranger. I was becoming overwhelmed myself.
I ripped open the car, tore it up looking for something, anything. Crackers. There was a package of crackers. I coaxed Andy into eating one. And some water. It wasn't enough. He screamed, he hid behind a tree, he was totally out of his own control. Another cracker. Another sip. We might have to go home.
How many times do you think you could answer the question "What is eight times zero?" without starting to go a little kooky? A little batty? Maybe you'd break off the conversation. Maybe you'd start giving a wrong answer, just to change it up. Maybe you'd try to disengage, walk away, excuse yourself. Especially if you have a child who is also starting to show signs of frustration and boredom.
The coach arrived. The practice started.
I never found how many times that gentleman would calmly, quietly, patiently answer math questions, liberally sprinkled with "WHAT is EIGHT times ZEEEEEEE-RRROOOOOO?" But I can tell you it is many, many times. And more than an hour. Because soccer practice lasts an hour, and he calmly, patiently answered Joey the whole time.
His name was Matt Wilkerson. His was the other child with the issues on the field. But he wasn't really aware of the extent of his child's issues yet, they were just figuring out something was up. He had an awesome wife and new baby twin girls. I got to meet them the next week. I got to hold those babies at a moment I so wished I was having another of my own. But more importantly, this was not yet a Special Needs Dad.
He was just a Dad. And he accepted my boys, immediately, patiently, without question. He laughed and was happy, answering math questions, listening to my child giggle hysterically over the words. And this became a regular ritual for Joey, when he would see Matt (though not for the whole practice). Patiently, calmly, Matt would give him those answers, as if this was normal conversation.
His wife is the same way. They were simply born part of the Tribe. Some people are just born Awesome.
On January 24, 2014, Matt was driving home early from work. He had a bad cold, one that had been spread in his house for the week before. He wanted to get home to his family, and take a rest, and get better. A car in front of him hit the jersey barrier at 75 MPH. That car flipped.
It landed on his. He was killed instantly.
I don't think he ever knew what those practices, those calmly answered questions meant to us. I don't know how much he knew I considered his family to be part of my own, or if he did, he probably didn't really know what that means to us, either. I hope his wife and beautiful children know.
We miss you already, Matt. Thank you for the Awesome.
Joey did was Joey does, especially if he is uncomfortable and knows I am trying to work with Andy. He walked up to a complete stranger and started talking.
This stranger was soon barraged with math questions, liberally sprinkled with Joey's favorite, "What is eight times zero?" But Joey says it like this:
(Giggling madly)
WHAT is EIGHT times ZEEEEEEEEE-RRROOOOO?
(More mad giggling)
Yep. That's scripting. And the answer, as you know, is Zero. Every. Single. Time.
Andy started to break down. I couldn't break off to pull Joey to a chair. I could hear the patient answers, each question answered in a soft, factual voice, calm, as if this was an ordinary game one played with 9-year-olds you didn't know.
Andy was on the ground. Done. Tears. I managed to get him to the car, a short distance, but far enough to make me cringe. Joey was still bolting, and could do it at any second. To let him out of my range, out of my sight, with a complete stranger. I was becoming overwhelmed myself.
I ripped open the car, tore it up looking for something, anything. Crackers. There was a package of crackers. I coaxed Andy into eating one. And some water. It wasn't enough. He screamed, he hid behind a tree, he was totally out of his own control. Another cracker. Another sip. We might have to go home.
How many times do you think you could answer the question "What is eight times zero?" without starting to go a little kooky? A little batty? Maybe you'd break off the conversation. Maybe you'd start giving a wrong answer, just to change it up. Maybe you'd try to disengage, walk away, excuse yourself. Especially if you have a child who is also starting to show signs of frustration and boredom.
The coach arrived. The practice started.
I never found how many times that gentleman would calmly, quietly, patiently answer math questions, liberally sprinkled with "WHAT is EIGHT times ZEEEEEEE-RRROOOOOO?" But I can tell you it is many, many times. And more than an hour. Because soccer practice lasts an hour, and he calmly, patiently answered Joey the whole time.
His name was Matt Wilkerson. His was the other child with the issues on the field. But he wasn't really aware of the extent of his child's issues yet, they were just figuring out something was up. He had an awesome wife and new baby twin girls. I got to meet them the next week. I got to hold those babies at a moment I so wished I was having another of my own. But more importantly, this was not yet a Special Needs Dad.
He was just a Dad. And he accepted my boys, immediately, patiently, without question. He laughed and was happy, answering math questions, listening to my child giggle hysterically over the words. And this became a regular ritual for Joey, when he would see Matt (though not for the whole practice). Patiently, calmly, Matt would give him those answers, as if this was normal conversation.
His wife is the same way. They were simply born part of the Tribe. Some people are just born Awesome.
On January 24, 2014, Matt was driving home early from work. He had a bad cold, one that had been spread in his house for the week before. He wanted to get home to his family, and take a rest, and get better. A car in front of him hit the jersey barrier at 75 MPH. That car flipped.
It landed on his. He was killed instantly.
I don't think he ever knew what those practices, those calmly answered questions meant to us. I don't know how much he knew I considered his family to be part of my own, or if he did, he probably didn't really know what that means to us, either. I hope his wife and beautiful children know.
We miss you already, Matt. Thank you for the Awesome.
Friday, January 24, 2014
Three Sentences
We have a reading problem here. For Andy, with his vision screwed up for so long and other processing issues, reading takes an incredible amount of energy. He loves books- but he would prefer to listen to them. I have tested his auditory comprehension with books he has "read" by audio book, and he seems to get almost every word. If I read books to him, he loves it, and he loves the stories, the information, and he likes the pictures if there are any. Reading by himself is a much bigger problem. I find myself thinking, what is more important? Him reading the words himself off the page, or him getting the information, the narratives, the understanding? And how to broach the issue with his teachers?
Joey also scores poorly on reading comprehension tests, but has a lot of issues with auditory processing as well. I can't just pop in a CD and expect him to get when he needs that way. Narratives often make no sense to him. Visualizing a story, a character, a place, is a real challenge. Understanding the inferences of words remains a challenge.
At least his teachers think so. I have often said he could read War and Peace, if you gave it to him one sentence at a time. If you give him the smaller bits and let him process it, he not only gets it, he keeps it. It never goes away. My brain used to be like that. It has its pros and cons, but at this age, the pros are far greater- if you allow him to process and retain.
I now can say he can read War and Peace- and now, you can give him three sentences at a time (maybe even up to five!). You can break it down, discuss it in these smaller bits, get through the page, and he can answer questions about what he read. Don't read it to him- let him do the reading. He can focus and pay attention that way.
Why these learning differences can't be accepted and worked on, I have no idea. By the end of the school year, we should have those five sentences consistently- that's a whole paragraph at a time. Last I looked, that' show I read- in paragraph units, think about it, then move to the next one. Why does everything have to be such a rush? Yes, it takes me longer to read things. However, I understand them when I am done. I have noticed many folks who read faster, but have to go back and read it again. Which is better?
(The answer is neither. They are just different ways of reading, learning, and gaining understanding.)
So this coming week, provided no one showers us with any homework, my goal is to do some reading with Joey, and see if I can't get him enjoying books again. Even if its just three sentences at a time.
Joey also scores poorly on reading comprehension tests, but has a lot of issues with auditory processing as well. I can't just pop in a CD and expect him to get when he needs that way. Narratives often make no sense to him. Visualizing a story, a character, a place, is a real challenge. Understanding the inferences of words remains a challenge.
At least his teachers think so. I have often said he could read War and Peace, if you gave it to him one sentence at a time. If you give him the smaller bits and let him process it, he not only gets it, he keeps it. It never goes away. My brain used to be like that. It has its pros and cons, but at this age, the pros are far greater- if you allow him to process and retain.
I now can say he can read War and Peace- and now, you can give him three sentences at a time (maybe even up to five!). You can break it down, discuss it in these smaller bits, get through the page, and he can answer questions about what he read. Don't read it to him- let him do the reading. He can focus and pay attention that way.
Why these learning differences can't be accepted and worked on, I have no idea. By the end of the school year, we should have those five sentences consistently- that's a whole paragraph at a time. Last I looked, that' show I read- in paragraph units, think about it, then move to the next one. Why does everything have to be such a rush? Yes, it takes me longer to read things. However, I understand them when I am done. I have noticed many folks who read faster, but have to go back and read it again. Which is better?
(The answer is neither. They are just different ways of reading, learning, and gaining understanding.)
So this coming week, provided no one showers us with any homework, my goal is to do some reading with Joey, and see if I can't get him enjoying books again. Even if its just three sentences at a time.
Tuesday, January 21, 2014
We're BAAAAAAA-AAAACK!
Welcome back friends, followers, family, and fun-loving fantastics! Yes, I'm back, I have about five posts I could write right this second, and I may even get some time together to write some of them. Several are very serious posts that will probably piss some folks off, but in the light of some of those very same posts, I think I won't go there today.
You see, its a snow day here in our corner of the interwebs. I have boys home to squish and make snow cream and watch movies and eat popcorn. The making of popcorn is one of our great achievements since I saw you all last. Joey and Andy can both now handle the air popper and melting the butter in the microwave. Next step: cleaning said microwave. But hey, they have their own warm snacks. One giant leap at a time, right? We won't mention the popcorn that is now spread from one end of the house to the other, either. No, no we won't.
Watching a movie with Joey is both super fun and super annoying. For one, when we watch a movie he likes, he gets all happy and bouncy, but likes nothing better than to have me lay on the couch and then lay on top of me. Thorough Mom Squishing. He'll even kick back with his kindle, watching the movie and playing his Zones of Regulation app. Then he spends the entire movie providing interpretative and descriptive commentary. You will discover which zone each character is experiencing at any given moment, motivations for their current behavior and actions, stages of their developing relationships, and even interesting details about future events. Yes, I said it was partly super annoying. At the same time, listening to him understand the narrative, understand the characters, and have those words come together and out his mouth?
Gimme the couch. And let's put on Monsters, Inc for the 5467th time. I'm totally game.
So we can be serious tomorrow. Or Thursday. Whenever I get some time to write next. Today? Today I am going to play round-robin with the movies (yes, we are in Monsters, Inc now... Andy will want Pokemon next... and then I get to indulge my current perseverative obsession with the Rockettes 75th Anniversary Christmas Special). We're going to eat popcorn and drink hot cocoa. I am going to enjoy my babies, treasure every word, every giggle, and even every moment of Andy running through the house destroying zombies, and Joey pretending to be one (I'll tell more about that later).
They aren't little long.
You see, its a snow day here in our corner of the interwebs. I have boys home to squish and make snow cream and watch movies and eat popcorn. The making of popcorn is one of our great achievements since I saw you all last. Joey and Andy can both now handle the air popper and melting the butter in the microwave. Next step: cleaning said microwave. But hey, they have their own warm snacks. One giant leap at a time, right? We won't mention the popcorn that is now spread from one end of the house to the other, either. No, no we won't.
Watching a movie with Joey is both super fun and super annoying. For one, when we watch a movie he likes, he gets all happy and bouncy, but likes nothing better than to have me lay on the couch and then lay on top of me. Thorough Mom Squishing. He'll even kick back with his kindle, watching the movie and playing his Zones of Regulation app. Then he spends the entire movie providing interpretative and descriptive commentary. You will discover which zone each character is experiencing at any given moment, motivations for their current behavior and actions, stages of their developing relationships, and even interesting details about future events. Yes, I said it was partly super annoying. At the same time, listening to him understand the narrative, understand the characters, and have those words come together and out his mouth?
Gimme the couch. And let's put on Monsters, Inc for the 5467th time. I'm totally game.
So we can be serious tomorrow. Or Thursday. Whenever I get some time to write next. Today? Today I am going to play round-robin with the movies (yes, we are in Monsters, Inc now... Andy will want Pokemon next... and then I get to indulge my current perseverative obsession with the Rockettes 75th Anniversary Christmas Special). We're going to eat popcorn and drink hot cocoa. I am going to enjoy my babies, treasure every word, every giggle, and even every moment of Andy running through the house destroying zombies, and Joey pretending to be one (I'll tell more about that later).
They aren't little long.
Wednesday, January 01, 2014
Wednesday, December 25, 2013
Christmas Visions Past
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| Pop Perrygo selling Christmas trees on Eastern Market, Washington, DC |
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| This was a small tree for us. |
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| Uma Puma plays with the Christmas tree. |
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| Yes, that is the real Santa and Mrs. Claus with my grandparents. :) |
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| My brother selling Christmas trees on Eastern Market with Pop Perrygo. |
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| These are the Budweiser Clydesdales. They were in town for area parades. |
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| Talking to a reporter before the National Tree Lighting. They showed my clip instead, but Joey loved talking to the reporter. |
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