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.
Saturday, March 01, 2014
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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