Most of my friends have sent the little ones off to school again, but I have until tuesday to get my act together, as case manager for two. Here's my to-do list for now until the end of the first week of school:
1. Buy new supplies for management: 2 3-inch binders, two packs of sheet protectors, 2 packs of dividers, 1 pack of post-its, 1 pack of pens, 1 pack of pencils, 1 sharpener, 2 composition books for phone/meeting logs, 2 composition notebooks for school-home communication.
2. Set up this year's binders with copy of birth certificate, IEP, and latest evaluation reports, each.
3. Attend school open house, and firm up the teacher assignments.
a. ask who is the case manager this year, each.
b. note teacher contact information: cell phone, email, telephone, home contact info.
c. note other adults in classrooms, such as paras.
d. note daily schedule for each child.
4. Make appointments to meet with each teacher (Joey usually has 3 or 4) and make sure everyone is on the same page.
a. Make sure Joey's teachers are aware of bolting and meltdown issues.
b. Make sure teachers for both children are aware of language and speech issues.
c. Make sure Andy's teachers understand his need for snacks and eating issues.
d. Make sure Andy's teachers are clear about dysgraphia and what it is.
5. Check over IEP, each, and note changes from summer.
6. Arrange IEP meetings for each.
a. Have powerpoints ready and up-to-date for both children, with copies to leave with teachers.
b. Have "help manual" ready for Joey's teachers to deal with bolting and meltdown.
c. Update goals and needs for both children.
7. Call Middle School and begin transition process for Joey for next year.
Then I'll get started on Week 2.
Wednesday, August 29, 2012
Thursday, August 23, 2012
More Beach
I have a serious ear thing going on, so I thought I'd give y'all some more beach pictures while I get it cleared up.
You're welcome.
Wednesday, August 15, 2012
Wednesday, August 08, 2012
My Son's Life Is Worth Saving
Why do hospitals and people without disabilities so firmly believe that people with disabilities are somehow "less"? That they don't deserve to live their lives, just because those lives are sometimes different from their own? Why do I have to sit here in fear that Joey might one day be denied a life-saving medical intervention, simply because he is autistic? That is a mistake that you can only make once, and you can't take it back.
Please support Paul Corby and his family, friends, neighbors, and community, and send a crystal-clear message that denying medical intervention because of disability is wrong, intolerable, and... well, it is evil. Pure and simple. Sign the petition and take a stand against discrimination.
And this is not just random discrimination against a faceless other. This is direct, horrifying discrimination against my own son, my Joey. If this happens to the Corbys, it could happen to us- and happen that much more easily.
Please support Paul Corby and his family, friends, neighbors, and community, and send a crystal-clear message that denying medical intervention because of disability is wrong, intolerable, and... well, it is evil. Pure and simple. Sign the petition and take a stand against discrimination.
And this is not just random discrimination against a faceless other. This is direct, horrifying discrimination against my own son, my Joey. If this happens to the Corbys, it could happen to us- and happen that much more easily.
This is a life worth living, and a life worth saving. I have dedicated my own to both of these beautiful lives. Please help make t unthinkable to deny these lives a chance, because of discrimination and ignorance of autism.
Tuesday, August 07, 2012
Descriptors
Mountains are not mountains...
Mountains are mountains.
-from Zen Master Dogen
I walked into the OT office to bad news this morning. The social skills groups my guys have been in for the last year are no longer considered "occupational therapy" by the insurance company- they have to go private pay only, because they are now considered "educational." But trying to get the school to pay for this "educational" but vital program is going to be... impossible. According to them, Joey gets plenty of service already- and certainly "appropriate." And we have learned how far "appropriate" and "adequate" are from what we consider the definition of either term.
We find ourselves in a war of semantics and a labyrinth of language. Part of the problem is how people view Joey and autism, and the goals different folks have for him. We always make sure to include our long-term goals for Joey in our IEP presentations: we want him to be happy, we would like him to independent, we want him to be able to live as an autistic person in what is a non-autistic world and be able to self-advocate. His therapists want him to be able to self-regulate, communicate, and move. His teachers want him to be able to read, to write, to be able to consider concepts and analyze information effectively. These may all seem like worthy goals- more or less- but they are all our goals for Joey. That is an important distinction. Keep that in mind for a moment.
Because Joey speaks and has made solid progress towards all of these goals, he has a number of labels added to him, in reference to autism. Mildly/Moderately autistic. High functioning. Low impact/mildly or moderately effected. With these labels come judgements, comments, ideas. And though some, such as "he is doing well!" seem benign, I sometimes wonder what kind of value judgement that entails. Does that mean a person who is "severely effected" or "severely autistic" is not "doing well"? And what is "well"? After all, we had an entire year of regression and missed goals, from which we have never recovered. When I see how children around Joey's age function, act, and respond, and see what Joey can and cannot do, how "well" is he really doing? Or am I drowning in another morass of labels, semantics, and language?
After all, Joey is Joey. He develops at his own pace, in his own time, and I'm just here to help as he needs it. And like my buddy Snail, he does things in his own Joey way. He's been Joey a long time now, he's gotten pretty good at it; but its nice for him to get help when he needs it.
So how much does help does he need? And doesn't that depend not on my goals for Joey, but Joey's goals for Joey? At what point do we transition from raising a child and helping them form a plan, to the plan they form for themselves? I worry when I see other fifth graders who seem to be able to self-advocate and have goals for themselves, and I'm still trying to play the super-sleuth in figuring out what Joey thinks, feels, and understands. I worry about getting caught up in words and goals and losing sight of Joey being Joey.
Because Joey is not the words, or the goals, or the thoughts we have about him. He is himself. And that is a very important distinction.
Thursday, August 02, 2012
More New Designs!
Another new design for the Bazaar- also with white lettering if you want the dark shirts and stuff.
Sunday, July 29, 2012
Then the Day Comes When...
I was upstairs for a few minutes; I had been playing with Andy, looking at "silly kitties" on the computer, part of a lazy Sunday. We don't have many of those, so it was just nice. Andy bounced downstairs, I checked into my online life and went into the bathroom to start dressing.
Andy popped back up. "Where's Joey?" he asked. I don't know, did you check his room? Is he in the bathroom? I replied something to that affect.
"Joey!" Andy called, as I finished up business. "He's gone!"
Still unperturbed, I headed out to peek into his room myself. Andy had gone back downstairs, and started wailing, "Joey's gone! Joey's gone!"
The front door had the key in the lock, and was open. He hadn't slammed it behind him, we would have heard that. He was just gone, his game still playing its music.
He was just gone.
JoeyAndyDad lept into the Jeep and started tracing the path to the pool- the path of greatest danger, as it had water on the other end. Andy and I called for a moment outside. How long had he been gone?
"Andy, when did you see Joey last?"
"Downstairs on his game."
"When, Andy? When?"
"He was downstairs!" Andy was getting scared. He knew this was not good.
"Was he there when you came upstairs to watch kitties?"
"Yes." OK, so we were talking in the 5-10 minute range. It was still too long. We hopped into the van and made the block, the second favorite path of frustration. He was no where to be seen.
"Maybe he went to D's," Andy suggested, a great idea, only two blocks over. We drove over and knocked at the door, but no luck, he wasn't there. I called for reinforcements in the form of Mr. Wesley, then the police. Time was of the essence.
There is something surreal in giving a description of your child to a police dispatcher. How tall is he? Weight? What is he wearing? Autistic- how will he react to police officers? Will he yell? Will he run? Is he violent when stressed? Does he have an item he would find comforting?
I managed to get a bra on while I was talking, I have no clue how I managed it. I ran back down the stairs with instruction to call again if he was found. After giving Andy the job of searching the house again, more to give him something to do than with any hope, I stood outside on the sidewalk, caught because I had Andy and couldn't search, couldn't leave him. I called my mom, she could come watch Andy while we searched. The path to the park was being ridden now by JoeyAndyDad. Wesley was canvassing the downtown grid, as he could have gone anywhere at this point. Twenty minutes. He had been gone twenty minutes!
And then, as I was telling my mother he was missing, the nightmare ended. I could see him, at the end of the street, he was walking towards me. Where had he appeared from?
"I see him! I see him!" I told my mom, and ended the call, walking towards him; but Andy! A neighbor was outside. I asked him to make sure Andy didn't leave the house, I'm not even sure he understood me. I stopped; Joey had sat down. Was he hot? Did he see me coming and melt completely? Would approaching him make him run, or encourage him to come home? He started walking again, I met him, asked him where he had been.
"I got lost, so I came home," he explained as if nothing unusual had happened. He babbled about his game.
"Good job," I said, emphasizing the positive, "Good job coming home, buddy, that's what we need you to do if you get lost."
The police officer was waiting for us, and as I stopped to thank the neighbor and call JoeyAndyDad and Mr. Wesley, the officer chatted with Joey, praising him for coming straight home, too. He had JoeyAndyDad take Joey into the house. He was safe. He was home.
We got the name for Project Lifesaver in Fredericksburg. "You may not remember me," I heard him say, "but I was the officer who came a few years back, when Joey had to go to the hospital." When Joey turned blue. Yes, I remembered the face. He told me the department was aware of him- I had taken him over to the station and explained Joey a little to the officer who was there. He asked again about comfort objects, about the stick Joey was carrying. Now they knew he was a bolter, it was definitely time for a tracking anklet. "We can find him in seconds," he explained, giving me the card. "She comes on at nine. Just give her a ring."
Because now, we know what the trigger was, and he's still young. We know his paths. But here comes adolescence- and we may not know what is going on, and why he goes off. He may not know himself. We are going to work on setting some of his frustration paths a little more, but ultimately, he's going to go his own way. And while he remains vulnerable, we need to be able to find him- fast. Even when he doesn't yet know he is lost.
Andy popped back up. "Where's Joey?" he asked. I don't know, did you check his room? Is he in the bathroom? I replied something to that affect.
"Joey!" Andy called, as I finished up business. "He's gone!"
Still unperturbed, I headed out to peek into his room myself. Andy had gone back downstairs, and started wailing, "Joey's gone! Joey's gone!"
The front door had the key in the lock, and was open. He hadn't slammed it behind him, we would have heard that. He was just gone, his game still playing its music.
He was just gone.
JoeyAndyDad lept into the Jeep and started tracing the path to the pool- the path of greatest danger, as it had water on the other end. Andy and I called for a moment outside. How long had he been gone?
"Andy, when did you see Joey last?"
"Downstairs on his game."
"When, Andy? When?"
"He was downstairs!" Andy was getting scared. He knew this was not good.
"Was he there when you came upstairs to watch kitties?"
"Yes." OK, so we were talking in the 5-10 minute range. It was still too long. We hopped into the van and made the block, the second favorite path of frustration. He was no where to be seen.
"Maybe he went to D's," Andy suggested, a great idea, only two blocks over. We drove over and knocked at the door, but no luck, he wasn't there. I called for reinforcements in the form of Mr. Wesley, then the police. Time was of the essence.
There is something surreal in giving a description of your child to a police dispatcher. How tall is he? Weight? What is he wearing? Autistic- how will he react to police officers? Will he yell? Will he run? Is he violent when stressed? Does he have an item he would find comforting?
I managed to get a bra on while I was talking, I have no clue how I managed it. I ran back down the stairs with instruction to call again if he was found. After giving Andy the job of searching the house again, more to give him something to do than with any hope, I stood outside on the sidewalk, caught because I had Andy and couldn't search, couldn't leave him. I called my mom, she could come watch Andy while we searched. The path to the park was being ridden now by JoeyAndyDad. Wesley was canvassing the downtown grid, as he could have gone anywhere at this point. Twenty minutes. He had been gone twenty minutes!
And then, as I was telling my mother he was missing, the nightmare ended. I could see him, at the end of the street, he was walking towards me. Where had he appeared from?
"I see him! I see him!" I told my mom, and ended the call, walking towards him; but Andy! A neighbor was outside. I asked him to make sure Andy didn't leave the house, I'm not even sure he understood me. I stopped; Joey had sat down. Was he hot? Did he see me coming and melt completely? Would approaching him make him run, or encourage him to come home? He started walking again, I met him, asked him where he had been.
"I got lost, so I came home," he explained as if nothing unusual had happened. He babbled about his game.
"Good job," I said, emphasizing the positive, "Good job coming home, buddy, that's what we need you to do if you get lost."
The police officer was waiting for us, and as I stopped to thank the neighbor and call JoeyAndyDad and Mr. Wesley, the officer chatted with Joey, praising him for coming straight home, too. He had JoeyAndyDad take Joey into the house. He was safe. He was home.
We got the name for Project Lifesaver in Fredericksburg. "You may not remember me," I heard him say, "but I was the officer who came a few years back, when Joey had to go to the hospital." When Joey turned blue. Yes, I remembered the face. He told me the department was aware of him- I had taken him over to the station and explained Joey a little to the officer who was there. He asked again about comfort objects, about the stick Joey was carrying. Now they knew he was a bolter, it was definitely time for a tracking anklet. "We can find him in seconds," he explained, giving me the card. "She comes on at nine. Just give her a ring."
Because now, we know what the trigger was, and he's still young. We know his paths. But here comes adolescence- and we may not know what is going on, and why he goes off. He may not know himself. We are going to work on setting some of his frustration paths a little more, but ultimately, he's going to go his own way. And while he remains vulnerable, we need to be able to find him- fast. Even when he doesn't yet know he is lost.
Wednesday, July 25, 2012
Frustration Regulation
"Joey, honey, your twenty minutes is up," I announce apologetically, the last of a string of transitioning prompts to get him off his Mario games and onto... anything else. He was doing OK with it, but when he got the five-minute warning, he switched to the level that usually sets him screaming; I think it might be level 8-4. I flinched, knowing how this has been ending lately. My shoulder throbbed at the very thought.
"I can't beat this level!" he shrieks- not at me, but at the computer screen. He bursts into tears, his already-pink face going beet red all over, a sure danger sign. He screams at the game, heartbroken. "First rule, Joey cannot beat all the levels! Why did the designers put a hammer bro there? I can't beat this level!"
"One more try, darling," I assure him as the all-too-familiar death music rings out. "Then it is time to put Mario away for today." I pat his shoulder to remind him I am there. To my surprise, he shuts the computer off instead. I brace for impact as he empties his lungs.
"I'm ANGRY! I'll never defeat Bowser!" The house might not shake with it, but my own heart is wrung to its core. I step away, for a tautness in his shoulder tells me the chair is about to be flung back in my direction. He pushes back hard as I expected... then begins to stomp through the house.
I wait for the ugly words to come, the colorful metaphors, usually directed at me, being a safe target. Instead, he rolls on with his game talk.
"Stupid Bowser! I hate Bowser! I'll never save the Princess!" he yells, at the top of his lungs, as he stomps up the stairs. I hear him reach his room, and scream that blood-curdling soul-wrenching scream that often sends people at school scurrying to his aid. The one he uses for pain.
I reach the top of the stair, the door of his room; I must have flown there, I don't remember my feet on the stairs at all. I expect to see a child with a shattered arm or at least a paper cut or a stubbed toe. He is in his favorite chair, wailing about the game. The hurt isn't physical.
And I stand there and ponder as he screams out the hurt, gives it words, and slowly, painfully, loudly, subsides. I stand there, amazed, almost in shock.
He knew he was done, stopped the game himself, went to his favorite chair in his room, and was working on regulating himself. All without lashing out at anyone, other than the noise. The worst word that emerged from his mouth was "stupid." Holy cow.
He comes to the door, wanting a hug. I give him one, I whisper that I love him. He goes on about Bowser. He goes back to his chair. We repeat this a few times until the sobs stop, and he sits in his chair, drawing and air-writing, his fish light on.
And I realize, he did it. He finally did it, after months and months of not doing it. He managed to calm himself out of a meltdown, himself, without lashing out to hurt anyone else. He did it. He made it up the stairs to his space, and calmed down.
He did it.
"I can't beat this level!" he shrieks- not at me, but at the computer screen. He bursts into tears, his already-pink face going beet red all over, a sure danger sign. He screams at the game, heartbroken. "First rule, Joey cannot beat all the levels! Why did the designers put a hammer bro there? I can't beat this level!"
"One more try, darling," I assure him as the all-too-familiar death music rings out. "Then it is time to put Mario away for today." I pat his shoulder to remind him I am there. To my surprise, he shuts the computer off instead. I brace for impact as he empties his lungs.
"I'm ANGRY! I'll never defeat Bowser!" The house might not shake with it, but my own heart is wrung to its core. I step away, for a tautness in his shoulder tells me the chair is about to be flung back in my direction. He pushes back hard as I expected... then begins to stomp through the house.
I wait for the ugly words to come, the colorful metaphors, usually directed at me, being a safe target. Instead, he rolls on with his game talk.
"Stupid Bowser! I hate Bowser! I'll never save the Princess!" he yells, at the top of his lungs, as he stomps up the stairs. I hear him reach his room, and scream that blood-curdling soul-wrenching scream that often sends people at school scurrying to his aid. The one he uses for pain.
I reach the top of the stair, the door of his room; I must have flown there, I don't remember my feet on the stairs at all. I expect to see a child with a shattered arm or at least a paper cut or a stubbed toe. He is in his favorite chair, wailing about the game. The hurt isn't physical.
And I stand there and ponder as he screams out the hurt, gives it words, and slowly, painfully, loudly, subsides. I stand there, amazed, almost in shock.
He knew he was done, stopped the game himself, went to his favorite chair in his room, and was working on regulating himself. All without lashing out at anyone, other than the noise. The worst word that emerged from his mouth was "stupid." Holy cow.
He comes to the door, wanting a hug. I give him one, I whisper that I love him. He goes on about Bowser. He goes back to his chair. We repeat this a few times until the sobs stop, and he sits in his chair, drawing and air-writing, his fish light on.
And I realize, he did it. He finally did it, after months and months of not doing it. He managed to calm himself out of a meltdown, himself, without lashing out to hurt anyone else. He did it. He made it up the stairs to his space, and calmed down.
He did it.
Monday, July 23, 2012
Wait... The Zoo Is Closed On Sundays? (Lessons in Otter Sex)
With the day overcast and cool for once (this has been the Summer in the Oven here), we decided to try the zoo. So we packed everybody up and merrily began our jaunt, which did really well until we almost arrived- everybody was hungry, car-weary, and the battery on the iPad gave out. We pulled over to get some food.
And that is when I decided to double-check when the zoo actually opened, to find it was completely closed on Sundays. Who ever heard of a zoo being closed on a weekend day in summer? Really?
So we took our $60 elsewhere (yep- we were going to shell out $60 to see a zoo. But you get to feed giraffes, people. We are totally going to try again on Friday.) That elsewhere was our old stand-by, Maymont. We re-upped our membership, and got down to business- which was wandering through the children's barn, through the little zoo to see the bear, and then hiking back up the hill, huffing and puffing because no one was expecting to be at Maymont, and no one brought a fan, water, or an inhaler.
One of the cool parts is the viewer, which (for a quarter) lets you see with the acuity and range of an eagle. Andy was especially excited, as his new powers of vision and focus let him really be able to use the thing. Joey balked as usual at having to use both eyes. We are totally having that checked out, as soon as we know we have the up-front fund to put down on the therapy.
They also liked the snow-cone stand, an especially vital feature when one has not brought a fan, water, or an inhaler. It's a very pleasant walk to the bottom of the little zoo, and very cool and lovely down there, but the humidity was a mess.
And did I forgot to mention that we were taking Sonic the Hedgehog and Luigi to the zoo? For some reason, as soon as they realized we were going adventuring, they both dressed in costume. Anxiety is a strange thing.
Joey as Luigi, with his stick for his air-writing.
Andy as Sonic the Hedgehog.
We did manage to see the bear, who was the biggest black bear I have ever seen- that thing must have been 300-400 pounds, it was definitely as hefty as me. Not a bear I'd want to meet in a dark forest with a fish in my pocket. Awesome creature.
Joey had some trouble picking out the animals from their environments, but he was happy to at least see this bear. And hug it.
As lovely as it was, it had to end. We didn't have tickets for the tram, so we had to trudge back up the little mountain, past the raptors, the fox, the bobcat... Andy was so excited to find the bobcat out on our way back! He usually hides in his den most of the day, especially hot days.
We finally arrived back at the car, so we could head for the Nature Center and cool off. It isn't a big center, but it is pretty nice, and full of aquariums, little activities, a hall with night animals, a beautiful discovery room, and Joey's favorite, the otters.
The volunteer brought out a snake for everybody to pet, which made Joey very happy. He loves handling snakes. I think he was kinda cold and smooth, but Joey was very excited. The volunteer was very patient with Joey, and I can't tell you how much that was appreciated! She was ever so sweet as Joey sat next to her with a toy snake, and started "interviewing" her as the snake. The two snakes had a very nice little conversation about being snakes.
We spent a nice long time watching the otters. They were doing a show when we first arrived, but once the tricks were over the otters were fed, the folks cleared out and gave us back our nice, quiet otter corner. We took some photos, and laughed about the otters wrestling and playing, and Joey followed them and played with them, and all was happy.
In watching them, as Joey started talking to me about them in his chatter-chatter-otters-are-awesome way, I noticed that the one otter now had the other firmly by the neck. I have watched enough nature shows to realize what this means- and obviously, after dinner and a show, otters get... um... frisky. Amorously frisky.
Lately, Joey has discovered the power of colorful metaphor, and his favorite word to use is the one that gets the most heads to turn. I was sorely tempted to have him turn around, and explain that every time he used that particular colorful metaphor, this behavior is what he was referencing. Fuzzy, frantic otter sex. Sorely, sorely tempted. But I was good, and didn't scar my child for life.
Instead, I decided to treat otters as I would have otters treat me, and discreetly maneuvered Joey back to the fish and snakes in the other room to give them a little--- ahem--- privacy. Besides, it was time to head home. We had two very tired boys.
But never fear- we managed to stop at the Russell Stover outlet on the way home.
Sunday, July 22, 2012
My Joey
I love the way Joey cocks his head to one side as he air-writes, as if to get the whole word just perfect, every time.
I the love Joey's soft smile when he leans his head on your shoulder, that supreme happiness of being there.
I love the way he creeps in to bed and whispers, "I love you, sweetie pie."
I love it when he dresses up as Luigi and says, "Mama Mia!"
I love the way he stomps so deliberately up the stair when he is frustrated, as if he was squashing the mean out of the universe.
I love to see him curled up in his favorite chair in his room, watching his fish lamp.
I love how Joey has found a favorite spot in the park, at the top of the stair to the slide. And that he always moves aside when a little one wants to go down, with encouraging words, "You can do it!"
I love the sound of his squeal when he wins a game.
I love it when Joey very gently, ever-so-softly, touches your face when he wants to connect with you.
I love the way he dives into the pool, full-throttle.
I love the way he inflects his voice, so he not only says the words, he means them. Even the echoed ones.
I love how he giggles when he knows he's being mischievous.
I love how he sometimes gets up suddenly and announces, "I'm going to feed the kitties!" with such pride and love.
I love how he kicks his feet out a little as he walks.
I love the way Joey exaggerates his face when he wants to clearly communicate an emotion.
I love the look on his face when he hugs his brother.
I love the way he can be completely engrossed in a game, until you whisper, "...cookie."
I love the way he laughs when he lets you tickle him.
I love how he sneaks into our room at night and snuggles himself between us, so you can't tell where one person ends and the next begins.
I love how saying the word "hug" prompts him to stop whatever he is doing and lay on you.
I love it when he quotes Quack: "This is the worst thing I've ever tasted! Ick! Bleah!.... You gotta try it!"
I love watching him come down the stairs at Christmas. And seeing Santa Claus at the mall. And walking into Valley View at Christmastime.
I love the pictures he draws: Mario, Luigi, Angry Birds, Roadrunner, Coyote... and Dad.
I love listening to him sing. Even the Mario Brothers music.
I love how he manages to accrue all of my wood spoons.
He's my baby. And I love my Joey.
I the love Joey's soft smile when he leans his head on your shoulder, that supreme happiness of being there.
I love the way he creeps in to bed and whispers, "I love you, sweetie pie."
I love it when he dresses up as Luigi and says, "Mama Mia!"
I love the way he stomps so deliberately up the stair when he is frustrated, as if he was squashing the mean out of the universe.
I love to see him curled up in his favorite chair in his room, watching his fish lamp.
I love how Joey has found a favorite spot in the park, at the top of the stair to the slide. And that he always moves aside when a little one wants to go down, with encouraging words, "You can do it!"
I love the sound of his squeal when he wins a game.
I love it when Joey very gently, ever-so-softly, touches your face when he wants to connect with you.
I love the way he dives into the pool, full-throttle.
I love the way he inflects his voice, so he not only says the words, he means them. Even the echoed ones.
I love how he giggles when he knows he's being mischievous.
I love how he sometimes gets up suddenly and announces, "I'm going to feed the kitties!" with such pride and love.
I love how he kicks his feet out a little as he walks.
I love the way Joey exaggerates his face when he wants to clearly communicate an emotion.
I love the look on his face when he hugs his brother.
I love the way he can be completely engrossed in a game, until you whisper, "...cookie."
I love the way he laughs when he lets you tickle him.
I love how he sneaks into our room at night and snuggles himself between us, so you can't tell where one person ends and the next begins.
I love how saying the word "hug" prompts him to stop whatever he is doing and lay on you.
I love it when he quotes Quack: "This is the worst thing I've ever tasted! Ick! Bleah!.... You gotta try it!"
I love watching him come down the stairs at Christmas. And seeing Santa Claus at the mall. And walking into Valley View at Christmastime.
I love the pictures he draws: Mario, Luigi, Angry Birds, Roadrunner, Coyote... and Dad.
I love listening to him sing. Even the Mario Brothers music.
I love how he manages to accrue all of my wood spoons.
He's my baby. And I love my Joey.
Wednesday, July 18, 2012
Thoughts from the Morass
I have no clue how people do it.
I poke around and see what people are doing all the time. Its is easier now that we have Twitter, Facebook, Google, blogs, more blogs, etc. etc. etc. I see what other people are managing to get done. They have kids, special needs kids, families, jobs- they write, not just for their own blogs or magazines or whatever, but several of these. They lecture and publish and still cook dinner. They have hobbies- knitting, baking, gardening, reading. They have fresh news stories to post, which I assume they have read, as they have comments to offer on them. Life goes on, and things get done.
And it is all I can do to say my kids get to bed still alive and fed at night.
I got up this morning. Having been kicked out of bed by sprawling boys, I had spent most of the night in the big recliner. There was a boy in the bed, so I snuggled and smooched on him until we absolutely had to get up if he was going to eat before leaving for school.
I don't drink coffee. I didn't get a shower. I was lucky to get my clothes on before going out to the start of my day. I forgot to brush my hair, but did manage to take my meds and put on deoderant before putting the clothes on. I thought I might try to write a letter to a friend later today, they aren't online anymore because they live on a farm and various other reasons. I have the thought every morning.
It was a lazier morning than usual, because Andy didn't have vision therapy this morning, so I just had Joey to get together. I made him some breakfast- which consisted of putting two danishes on a plate and pouring him a glass of milk, because we snuggled so long- and made sure he got his medicine down. I fed the cats. I packed Joey's snack. I looked outside to check for the bus, and noticed the fledgling on the porch. I quickly flipped open my laptop to make sure I didn't need to try to get him back in the nest, but everything I found said he was OK as long as he wasn't hurt, which he wasn't. I tried to get Joey to look at the bird, but he was already on a Mario spiral. The bus came. I got Joey out the door as calmly as possible, so we didn't frighten our fledgling. I noticed the sunflowers still need to be staked (they are all crooked form the derecho that came through) as I waved my "I love you", and the bus pulled away with a little bit of my heart on it.
Andy had awakened and was coming down the stairs, so no snuggle time for me. More breakfast, then I popped on Twitter and Facebook and the news to make sure the world wasn't falling apart. My friend sent me a message about services for Joey she had discovered, awesome. I told Andy about the fledgling, and we watched him for a minute before heading out to his OT group. We saw the mama bird come land on the porch with a bug in her beak.
As we drove, Andy chatted about his nerf gun needing new darts and missing his vision therapist, and we thought we might get to the Bug Box this morning after we stopped by mom's office. I got Andy to OT, and got the session paid for, then hopped over to the CVS to see if they had nerf darts. They don't. I got a beach chair on sale, because we would be at the McDonald's later, and this McDonald's doesn't have the nice tables with the separate chairs, and the attached benches are the perfect size for skinny preteens, but not for a fat middle-aged mom. I got back to chat with one of the moms from the group, she's having some issues we've seen before. Swapped some info, gave her some names of folks to call, all good. The other mom homeschools. I think she thinks we're nuts to have our kids in public school. As the kids came out, she asked about when the fall session would be. It was thought it would be Tuesday or Thursday, about 4. I noted Andy's bus often arrives at 4, another mom had a similar issue. The homeschool mom proudly noted she didn't care, since she homeschooled. Consensus voted for 4:15, and I noted I could sign Andy up for soccer now I knew when therapy would likely be. Well, his, anyway. His 1:1 therapist is going on maternity leave, so we didn't know when 1:1 would start back up, or what slot we would get. We were supposed to practice "whole body listening" by asking the Andy about cues he could get from body language, what he thought people were thinking based on how they were holding themselves or gesturing for emphasis, and we were supposed to talk about how to learn the "secret language" of social interaction. I pondered how I would also help Andy understand that Joey doesn't "speak" that "secret language" very well, and see if he could figure out Joey's "secret language." I think he can actually "read" Joey better than I can.
We got in the car, and went over the plan for the rest of the morning. We needed to pick up mom's medicine, then go to the office, then perhaps the Bug Box? But Andy didn't want to go to the Bug box anymore. He wanted to go "somewhere fun", then decided he wanted to go home because it was hot. And mom didn't get nerf darts, so he was extra grumpy.
We got mom's meds, and headed to the office to see if the phones got fixed and catch mom up on work stuff. Andy got a soda and a snack, the phones were only sort of fixed- we need to replace the phonesets, and business phones are expensive. Mom's computer monitor was also toast from the storms. I got mom up to date on stuff and showed her the stuff I had photographed to put up in the Etsy shop. I lost track of time, getting things settled. I got a text from Joey's teacher, he was OK until a game started going wrong for him, then he had pulled out his verbal arsenal and let it fly. Andy played quietly, pretending he had a bookstore. Suddenly, we had to race home, and we got there just in time to get Joey off the bus. The fledgling was chirping in his nest.
We had a quiet lunch, sandwiches, grapes, chips, sodas. Joey had me watch him play one the Mario levels he had designed. Andy was being grumpy because he was still out of darts. I forgot to make myself a sandwich, I got distracted by the begging for me to watch a level. Andy wanted to watch a Shaun the Sheep episode, so I got it on. I checked my email, but there was nothing interesting. I posted something about the nice check I got yesterday from my Cafepress shop. I glanced over Facebook to make sure everybody was OK. Someone had published an academic article. Someone got a new job in a museum. Someone was in London, lecturing at a conference. I remembered I needed to start re-vamping my classes for Fall, we have a new texbook. I checked my email and classes to make sure the students were all good. I answered a couple of questions. I thought about the school supplies that were still in the van, and they needed to come in and be sorted. I talked to my mom, who had a brilliant idea about getting Joey some quiet space, since he's been a little anxiety- ridden lately. There were a couple articles posted in the newsfeed I wanted to read, but they would have to wait. It was time for Joey's vestibular and core group.
Joey chatted about Bowser and Mario and Luigi and then the boys bickered as we drove. They bickered in the waiting room. Andy brought in his gun and a stuffed doll, and pretended to shoot zombies. Two of the kids in Joey's group played along. Joey ran and got an exercise ball out of a therapy room, and I reminded hi, that he needed to ask to use equipment. He ran off with the ball, but apparently the answer was "no' when he asked, because I jumped up to sounds of a scuffle and "Joey, put the ball DOWN." A therapist was wrestling the ball from him, then he shot past me and raced down the hall, kicking off his shoes as he bolted. The therapy office is set up in a big circle, but there is a back door; fortunately, he decided to do the circuit rather than the door. I think the therapist said something as he went past and I ran past her, hot on his heels lest he now go out the front door. The words were not helpful, something like, 'Joey, go wait in the waiting room" or something like that. The hall was narrow enough she could have put out an arm and caught him, but she didn't. IT was Andy's voice that drew Joey past the front door instead of him bolting through it. The waiting room was a dead-end for him, I got him to sit and have a hug. Another of the group kids came in, and I tried to talk to him, but got rebuffed- he was too anxious about group already. I didn't push it. Group started, and away Joey went.
Andy and I headed to Target to get darts. The end of July is clearance season; the summer toys are cleared out to make way for Christmas merchandising. They had a huge nerf gun on sale for $7. It got purchased, making for a very, very happy boy, who chattered about all the cool things it did all the way to the car. We also got a present for Andy's therapist while we were in the Target. We got back to the OT office, with an agreement that he needed some targets to shoot at in the yard.
Andy shot at his zombie, a parent from Joey's group chatted about a listening program she was trying, and how it was going to cost hundreds and hundreds of dollars to get the equipment in her house, plus the cost of the sessions. The program we did consisted of the cost of a set of really really good headphones, a good CD player, and at most it would have been the cost of the CDs, so about $250 all together- only we rented the CDs from the office, so for us it was only about $150 plus the therapy sessions themselves. I wondered what the program was like that required hundreds and hundreds of dollars just in equipment. I hope it works well for them.
The therapists tried to tell us something about the session, but these folks aren't as good at controlling hub-bub of released kids as Ms. Lisa, the main therapist in the office, is; so we didn't learn much. Apparently, there had been a lot of spinning, and Joey was unused to it, so there was some advice about counter-acting possible side-effects. I caught "suck through a straw," but the rest was lost in the general din and the clacking of the nerf gun.
I got the boys gathered and over to the playplace at McDonalds, as we had 45 minutes to kill between sessions. I sipped a coke in my new chair and listened to some Sherlock Holmes while the boys played- well, what I could hear over the squeals and yells. Some other kids arrived, and there was a rollicking game of hide and seek.
Then it was time. Back to OT we went. Joey saw the temperature according to the car was 101, and started to freak out: "too hot! It is too hot to swim! I'm going to burn! There's hot lava everywhere!"
Joey got happy when Ms. Lisa appeared. Off he bounced. Andy and I hopped back in the car, and headed to a small hardware store. We picked up some reflectors and things to use as targets, and some stakes for the sunflowers. Andy chattered about the targets he was going to make, and how different colors were good or bad, about whether Lego or Nerf would win the Epic Battle, and a smattering of chatter about Smash Brothers. We headed back to the office, where he could shoot at his zombie doll (which is actually a Genie from Aladdin doll).
One of the "targets" is a large screw eye, which I took in and proceeded to screw into a thick dowel for him, and he then merrily used as a target (go figure). I chatted with one of the other moms in the group about some of the trouble she's had with the schools, and she talked about going back to work. Her husband is the one that usually is home, though he also has a job and is a big-time advocate-activist out in the county. We talked about how we are both locals- I grew up in the county, she in the next county over. Her husband is local, too. She chided me for not having a gps anklet for Joey yet. Her son has one, and I know its been invaluable to them. We mention something about how different life was going to be. THe boys are now 10 and 8; we're supposed to be trekking all over India now. She also says something about travel, but having to work for the health insurance.
Ms. Lisa came out, and explained what the kids had been doing this session, learning about social cues and that other people think about them, and cues for determining what people are thinking about. We are supposed to practice at home, asking Joey what he thinks we are thinking about while looking at objects around the room, to see if he can follow another person's gaze or line-of-sight (joint attention skills).
The kids then appeared. Joey looked tired, and practically crawled into my lap. We got him into the car, and decided we should go home and have spaghetti and meatballs for dinner. The boys then commenced bickering. They bickered all the way home, all the way into the door, all the way through the living room. Andy started to watch a video of a Smash Brothers game, but one of the teens in it started using foul language, so he had to turn it off. He got grumpy and stomped into the livingroom, and started shooting Joey with his nerf guns. Joey started screaming about being shot. Ten minutes later, we were back to playing games on the computer and shooting zombies, so I started the meatballs.
The bickering continued, so I screwed up the meatballs, since I was only half- attending to how many crumbs I was adding. Joey gets so upset over his game he sobs uncontrollably; I try to hug him, but everything I say or do seems to just make it worse. My shoulder takes a good knock, but I've had worse. The noodles goet cooked, the meatballs get cooked, and after another screaming fit over a game and resistance in going to his room to calm down, both noodles and meatballs are consumed.
I started checking my computer. A couple of students had questions. I clean up the photos of the stuff for the shop. I check my social media. A friend was posting about a fabulous article they had written. Three had new blog posts. I noticed my brother had some kind of mention in the Huffington post as a lawyer who also gave lectures and wrote books. I have one of his books in my case for special books, but I haven't gotten to read it. Someone else commented on reading a new book. Another friend had gone for a 12-mile bike ride after work. Another friend was apparently made a member of the Order of the British Empire for their work on Autism. Another friend just finished the quilt she's been working on this month. It's beautiful. Another published article, a published book, a lecturer noting their tidy little honorarium. Another friend has put up a dozen articles- I want to read them all, but when? I think about a video on crocheting I want to watch to try to learn how to do it. My Uncle Lou crochets beautifully. I think about the friend who just came and I got to see her, I wonder how her kids are today, I should call her more. I should call everybody more. I start getting some of the new stuff up online. It's after 7.
JoeyAndyDad arrives home shortly thereafter, and reminds me that I need to get some things from the office. I run out, I try to get something at a store, but I get the wrong thing. Thinking it is possibly the right thing, I happily go to the office and get what I need- a book I need to get in the mail, a monitor. Some yarn that was given to me is still in the floor there. I toss it in a box to send to my friend on the farm, who was teaching herself to knit when I saw her last. I'm not likely to learn to crochet with it, so I should send it up to her and let it be put to good use. I load everything into the car, and I am off. I stop at the grocery on the way home, picking up something I forgot. I head home.
I finish getting the stuff into the shop, but I still have school supplies to sort. Its getting late. I decide it can wait, even though the stuff is all over the livingroom and front hall, along with bins of other stuff I pulled form the car a few days ago. It all needs to be sorted. I have no room to just stick it in the basement anymore. I go upstairs anyway.
The boys want hugs. I get undressed, and a boy comes in for hugs. I try to read some of the articles I wanted to read, but another boy wants attention. I start writing, when I normally would be trying to catch up on blogs I read, grade some papers, maybe get in a few articles. Boys come in wanting attention at intervals. I realize it's almost midnight, as a boy plops between me and JoeyAndyDad. We were supposed to talk about something when we came upstair, I forget what it was. I wonder if we remembered to talk about it. We send the boy back to his room, and I am finishing up this post.
It is now 12:21am.
I have worked on no articles to publish, done no research, not even read the articles about autism other have posted today. I didn't read any blogs. I gave no lectures, nor even started writing one. I didn't even write a letter to my friend... again.
I have no idea how people do it.
I poke around and see what people are doing all the time. Its is easier now that we have Twitter, Facebook, Google, blogs, more blogs, etc. etc. etc. I see what other people are managing to get done. They have kids, special needs kids, families, jobs- they write, not just for their own blogs or magazines or whatever, but several of these. They lecture and publish and still cook dinner. They have hobbies- knitting, baking, gardening, reading. They have fresh news stories to post, which I assume they have read, as they have comments to offer on them. Life goes on, and things get done.
And it is all I can do to say my kids get to bed still alive and fed at night.
I got up this morning. Having been kicked out of bed by sprawling boys, I had spent most of the night in the big recliner. There was a boy in the bed, so I snuggled and smooched on him until we absolutely had to get up if he was going to eat before leaving for school.
I don't drink coffee. I didn't get a shower. I was lucky to get my clothes on before going out to the start of my day. I forgot to brush my hair, but did manage to take my meds and put on deoderant before putting the clothes on. I thought I might try to write a letter to a friend later today, they aren't online anymore because they live on a farm and various other reasons. I have the thought every morning.
It was a lazier morning than usual, because Andy didn't have vision therapy this morning, so I just had Joey to get together. I made him some breakfast- which consisted of putting two danishes on a plate and pouring him a glass of milk, because we snuggled so long- and made sure he got his medicine down. I fed the cats. I packed Joey's snack. I looked outside to check for the bus, and noticed the fledgling on the porch. I quickly flipped open my laptop to make sure I didn't need to try to get him back in the nest, but everything I found said he was OK as long as he wasn't hurt, which he wasn't. I tried to get Joey to look at the bird, but he was already on a Mario spiral. The bus came. I got Joey out the door as calmly as possible, so we didn't frighten our fledgling. I noticed the sunflowers still need to be staked (they are all crooked form the derecho that came through) as I waved my "I love you", and the bus pulled away with a little bit of my heart on it.
Andy had awakened and was coming down the stairs, so no snuggle time for me. More breakfast, then I popped on Twitter and Facebook and the news to make sure the world wasn't falling apart. My friend sent me a message about services for Joey she had discovered, awesome. I told Andy about the fledgling, and we watched him for a minute before heading out to his OT group. We saw the mama bird come land on the porch with a bug in her beak.
As we drove, Andy chatted about his nerf gun needing new darts and missing his vision therapist, and we thought we might get to the Bug Box this morning after we stopped by mom's office. I got Andy to OT, and got the session paid for, then hopped over to the CVS to see if they had nerf darts. They don't. I got a beach chair on sale, because we would be at the McDonald's later, and this McDonald's doesn't have the nice tables with the separate chairs, and the attached benches are the perfect size for skinny preteens, but not for a fat middle-aged mom. I got back to chat with one of the moms from the group, she's having some issues we've seen before. Swapped some info, gave her some names of folks to call, all good. The other mom homeschools. I think she thinks we're nuts to have our kids in public school. As the kids came out, she asked about when the fall session would be. It was thought it would be Tuesday or Thursday, about 4. I noted Andy's bus often arrives at 4, another mom had a similar issue. The homeschool mom proudly noted she didn't care, since she homeschooled. Consensus voted for 4:15, and I noted I could sign Andy up for soccer now I knew when therapy would likely be. Well, his, anyway. His 1:1 therapist is going on maternity leave, so we didn't know when 1:1 would start back up, or what slot we would get. We were supposed to practice "whole body listening" by asking the Andy about cues he could get from body language, what he thought people were thinking based on how they were holding themselves or gesturing for emphasis, and we were supposed to talk about how to learn the "secret language" of social interaction. I pondered how I would also help Andy understand that Joey doesn't "speak" that "secret language" very well, and see if he could figure out Joey's "secret language." I think he can actually "read" Joey better than I can.
We got in the car, and went over the plan for the rest of the morning. We needed to pick up mom's medicine, then go to the office, then perhaps the Bug Box? But Andy didn't want to go to the Bug box anymore. He wanted to go "somewhere fun", then decided he wanted to go home because it was hot. And mom didn't get nerf darts, so he was extra grumpy.
We got mom's meds, and headed to the office to see if the phones got fixed and catch mom up on work stuff. Andy got a soda and a snack, the phones were only sort of fixed- we need to replace the phonesets, and business phones are expensive. Mom's computer monitor was also toast from the storms. I got mom up to date on stuff and showed her the stuff I had photographed to put up in the Etsy shop. I lost track of time, getting things settled. I got a text from Joey's teacher, he was OK until a game started going wrong for him, then he had pulled out his verbal arsenal and let it fly. Andy played quietly, pretending he had a bookstore. Suddenly, we had to race home, and we got there just in time to get Joey off the bus. The fledgling was chirping in his nest.
We had a quiet lunch, sandwiches, grapes, chips, sodas. Joey had me watch him play one the Mario levels he had designed. Andy was being grumpy because he was still out of darts. I forgot to make myself a sandwich, I got distracted by the begging for me to watch a level. Andy wanted to watch a Shaun the Sheep episode, so I got it on. I checked my email, but there was nothing interesting. I posted something about the nice check I got yesterday from my Cafepress shop. I glanced over Facebook to make sure everybody was OK. Someone had published an academic article. Someone got a new job in a museum. Someone was in London, lecturing at a conference. I remembered I needed to start re-vamping my classes for Fall, we have a new texbook. I checked my email and classes to make sure the students were all good. I answered a couple of questions. I thought about the school supplies that were still in the van, and they needed to come in and be sorted. I talked to my mom, who had a brilliant idea about getting Joey some quiet space, since he's been a little anxiety- ridden lately. There were a couple articles posted in the newsfeed I wanted to read, but they would have to wait. It was time for Joey's vestibular and core group.
Joey chatted about Bowser and Mario and Luigi and then the boys bickered as we drove. They bickered in the waiting room. Andy brought in his gun and a stuffed doll, and pretended to shoot zombies. Two of the kids in Joey's group played along. Joey ran and got an exercise ball out of a therapy room, and I reminded hi, that he needed to ask to use equipment. He ran off with the ball, but apparently the answer was "no' when he asked, because I jumped up to sounds of a scuffle and "Joey, put the ball DOWN." A therapist was wrestling the ball from him, then he shot past me and raced down the hall, kicking off his shoes as he bolted. The therapy office is set up in a big circle, but there is a back door; fortunately, he decided to do the circuit rather than the door. I think the therapist said something as he went past and I ran past her, hot on his heels lest he now go out the front door. The words were not helpful, something like, 'Joey, go wait in the waiting room" or something like that. The hall was narrow enough she could have put out an arm and caught him, but she didn't. IT was Andy's voice that drew Joey past the front door instead of him bolting through it. The waiting room was a dead-end for him, I got him to sit and have a hug. Another of the group kids came in, and I tried to talk to him, but got rebuffed- he was too anxious about group already. I didn't push it. Group started, and away Joey went.
Andy and I headed to Target to get darts. The end of July is clearance season; the summer toys are cleared out to make way for Christmas merchandising. They had a huge nerf gun on sale for $7. It got purchased, making for a very, very happy boy, who chattered about all the cool things it did all the way to the car. We also got a present for Andy's therapist while we were in the Target. We got back to the OT office, with an agreement that he needed some targets to shoot at in the yard.
Andy shot at his zombie, a parent from Joey's group chatted about a listening program she was trying, and how it was going to cost hundreds and hundreds of dollars to get the equipment in her house, plus the cost of the sessions. The program we did consisted of the cost of a set of really really good headphones, a good CD player, and at most it would have been the cost of the CDs, so about $250 all together- only we rented the CDs from the office, so for us it was only about $150 plus the therapy sessions themselves. I wondered what the program was like that required hundreds and hundreds of dollars just in equipment. I hope it works well for them.
The therapists tried to tell us something about the session, but these folks aren't as good at controlling hub-bub of released kids as Ms. Lisa, the main therapist in the office, is; so we didn't learn much. Apparently, there had been a lot of spinning, and Joey was unused to it, so there was some advice about counter-acting possible side-effects. I caught "suck through a straw," but the rest was lost in the general din and the clacking of the nerf gun.
I got the boys gathered and over to the playplace at McDonalds, as we had 45 minutes to kill between sessions. I sipped a coke in my new chair and listened to some Sherlock Holmes while the boys played- well, what I could hear over the squeals and yells. Some other kids arrived, and there was a rollicking game of hide and seek.
Then it was time. Back to OT we went. Joey saw the temperature according to the car was 101, and started to freak out: "too hot! It is too hot to swim! I'm going to burn! There's hot lava everywhere!"
Joey got happy when Ms. Lisa appeared. Off he bounced. Andy and I hopped back in the car, and headed to a small hardware store. We picked up some reflectors and things to use as targets, and some stakes for the sunflowers. Andy chattered about the targets he was going to make, and how different colors were good or bad, about whether Lego or Nerf would win the Epic Battle, and a smattering of chatter about Smash Brothers. We headed back to the office, where he could shoot at his zombie doll (which is actually a Genie from Aladdin doll).
One of the "targets" is a large screw eye, which I took in and proceeded to screw into a thick dowel for him, and he then merrily used as a target (go figure). I chatted with one of the other moms in the group about some of the trouble she's had with the schools, and she talked about going back to work. Her husband is the one that usually is home, though he also has a job and is a big-time advocate-activist out in the county. We talked about how we are both locals- I grew up in the county, she in the next county over. Her husband is local, too. She chided me for not having a gps anklet for Joey yet. Her son has one, and I know its been invaluable to them. We mention something about how different life was going to be. THe boys are now 10 and 8; we're supposed to be trekking all over India now. She also says something about travel, but having to work for the health insurance.
Ms. Lisa came out, and explained what the kids had been doing this session, learning about social cues and that other people think about them, and cues for determining what people are thinking about. We are supposed to practice at home, asking Joey what he thinks we are thinking about while looking at objects around the room, to see if he can follow another person's gaze or line-of-sight (joint attention skills).
The kids then appeared. Joey looked tired, and practically crawled into my lap. We got him into the car, and decided we should go home and have spaghetti and meatballs for dinner. The boys then commenced bickering. They bickered all the way home, all the way into the door, all the way through the living room. Andy started to watch a video of a Smash Brothers game, but one of the teens in it started using foul language, so he had to turn it off. He got grumpy and stomped into the livingroom, and started shooting Joey with his nerf guns. Joey started screaming about being shot. Ten minutes later, we were back to playing games on the computer and shooting zombies, so I started the meatballs.
The bickering continued, so I screwed up the meatballs, since I was only half- attending to how many crumbs I was adding. Joey gets so upset over his game he sobs uncontrollably; I try to hug him, but everything I say or do seems to just make it worse. My shoulder takes a good knock, but I've had worse. The noodles goet cooked, the meatballs get cooked, and after another screaming fit over a game and resistance in going to his room to calm down, both noodles and meatballs are consumed.
I started checking my computer. A couple of students had questions. I clean up the photos of the stuff for the shop. I check my social media. A friend was posting about a fabulous article they had written. Three had new blog posts. I noticed my brother had some kind of mention in the Huffington post as a lawyer who also gave lectures and wrote books. I have one of his books in my case for special books, but I haven't gotten to read it. Someone else commented on reading a new book. Another friend had gone for a 12-mile bike ride after work. Another friend was apparently made a member of the Order of the British Empire for their work on Autism. Another friend just finished the quilt she's been working on this month. It's beautiful. Another published article, a published book, a lecturer noting their tidy little honorarium. Another friend has put up a dozen articles- I want to read them all, but when? I think about a video on crocheting I want to watch to try to learn how to do it. My Uncle Lou crochets beautifully. I think about the friend who just came and I got to see her, I wonder how her kids are today, I should call her more. I should call everybody more. I start getting some of the new stuff up online. It's after 7.
JoeyAndyDad arrives home shortly thereafter, and reminds me that I need to get some things from the office. I run out, I try to get something at a store, but I get the wrong thing. Thinking it is possibly the right thing, I happily go to the office and get what I need- a book I need to get in the mail, a monitor. Some yarn that was given to me is still in the floor there. I toss it in a box to send to my friend on the farm, who was teaching herself to knit when I saw her last. I'm not likely to learn to crochet with it, so I should send it up to her and let it be put to good use. I load everything into the car, and I am off. I stop at the grocery on the way home, picking up something I forgot. I head home.
I finish getting the stuff into the shop, but I still have school supplies to sort. Its getting late. I decide it can wait, even though the stuff is all over the livingroom and front hall, along with bins of other stuff I pulled form the car a few days ago. It all needs to be sorted. I have no room to just stick it in the basement anymore. I go upstairs anyway.
The boys want hugs. I get undressed, and a boy comes in for hugs. I try to read some of the articles I wanted to read, but another boy wants attention. I start writing, when I normally would be trying to catch up on blogs I read, grade some papers, maybe get in a few articles. Boys come in wanting attention at intervals. I realize it's almost midnight, as a boy plops between me and JoeyAndyDad. We were supposed to talk about something when we came upstair, I forget what it was. I wonder if we remembered to talk about it. We send the boy back to his room, and I am finishing up this post.
It is now 12:21am.
I have worked on no articles to publish, done no research, not even read the articles about autism other have posted today. I didn't read any blogs. I gave no lectures, nor even started writing one. I didn't even write a letter to my friend... again.
I have no idea how people do it.
Tuesday, July 17, 2012
Awesome Thank You!
Thank you to all the awesome folks who have purchased form my Cafepress shop- just got a check that will cover a whole therapy session! You rock!
Monday, July 16, 2012
Proud Graduate: Vision Therapy DONE!
I am SO proud of my Andy; he completed twelve weeks of hard work- vision therapy, three days a week, plus home activities every day- to bring his focus and eye convergence into normal range! We will still be doing exercises to maintain muscle strength in his eyes, but my boy can now SEE!!!
Now we can really focus on the dysgraphia and get him rolling at school again. I am hoping he will start enjoying reading books, now that he can see them. And perhaps he will start drawing and coloring again, now he can see. And perhaps... just perhaps... he will start writing down all those stories that run through his head. They always sound so exciting!
Thank you, Ms. Colleen. And great work, Andy!!!
Now we can really focus on the dysgraphia and get him rolling at school again. I am hoping he will start enjoying reading books, now that he can see them. And perhaps he will start drawing and coloring again, now he can see. And perhaps... just perhaps... he will start writing down all those stories that run through his head. They always sound so exciting!
Thank you, Ms. Colleen. And great work, Andy!!!
Friday, July 06, 2012
What Autism Looks Like
When Joey was smaller, I made videos of him, trying to fight against an idea about autism that was driving us crazy. It was remarkably common for people to ask us if we were sure Joey is autistic, since he doesn't "look" autistic. The whole spectrum idea was difficult for people to grasp. That Joey needed support, even though he was "high functioning", was an idea even people in school system were having trouble grasping. This was coupled with the idea that having a child with autism, that being a person with autism, was somehow a tragic disaster, period. Joey is not a tragic disaster. He is a beautiful, wonderful, remarkable person. Autism and all.
You can view some of those videos at the bottom of this blog page.
It is becoming increasingly difficult to get a solid portrait of Joey into a 5-minute video, to capture even a glimpse of him with a single theme. As he grows and his world and personality become, like a growing snowflake, more beautiful and more complex, it becomes more difficult to really give a good idea of who he is. The true talent of a real portraitist is capturing that little glimpse in a single piece.
It is almost more difficult because I increasingly understand that the roller-coaster of his mood and expression is so much part of who he is. This is a difficult thing to understand and to communicate without it sounding or looking like something completely different, and something people judge harshly in our society. To capture the anxiety, and communicate how that molds who he is, who we are, and yet make it clear that we are not going to let him drown in it, that's hard. It's trying to explain to someone you can accept your child as autistic and still get him speech therapy and OT, when they see acceptance and intervention as diametrically opposed; its something that some people just don't get. I don't want to expose Joey to that kind of hard judgement any more than needful. Yet to leave this part of him out seems to make things far more Pollyanna-ish and rose-colored, and leads to other misunderstanding.
I wanted people to understand how unique everyone is, including my Joey. I wanted people to understand that he is who he is. And he is autistic, And he is unique. I wanted to get the message out there somewhere, that Joey is wonderful and joyful and fabulous and unique and... autistic. That what autistic is for us. This is, for us, what autism looks like.
It is definitely not an insult. 50Cent can kiss my cow.
You can view some of those videos at the bottom of this blog page.
It is becoming increasingly difficult to get a solid portrait of Joey into a 5-minute video, to capture even a glimpse of him with a single theme. As he grows and his world and personality become, like a growing snowflake, more beautiful and more complex, it becomes more difficult to really give a good idea of who he is. The true talent of a real portraitist is capturing that little glimpse in a single piece.
It is almost more difficult because I increasingly understand that the roller-coaster of his mood and expression is so much part of who he is. This is a difficult thing to understand and to communicate without it sounding or looking like something completely different, and something people judge harshly in our society. To capture the anxiety, and communicate how that molds who he is, who we are, and yet make it clear that we are not going to let him drown in it, that's hard. It's trying to explain to someone you can accept your child as autistic and still get him speech therapy and OT, when they see acceptance and intervention as diametrically opposed; its something that some people just don't get. I don't want to expose Joey to that kind of hard judgement any more than needful. Yet to leave this part of him out seems to make things far more Pollyanna-ish and rose-colored, and leads to other misunderstanding.
I wanted people to understand how unique everyone is, including my Joey. I wanted people to understand that he is who he is. And he is autistic, And he is unique. I wanted to get the message out there somewhere, that Joey is wonderful and joyful and fabulous and unique and... autistic. That what autistic is for us. This is, for us, what autism looks like.
It is definitely not an insult. 50Cent can kiss my cow.
Tuesday, July 03, 2012
Blogs on backburners
Yeah, I know, I suck at blogging these days. See, its summer, and well, there's this thing called life happening, and you know, I'm really really tired. And you know I'm serious when I'm so tired I am not whining online.
Just to give you a sample...
Just to give you a sample...
There was this storm that came through our neck of the woods, very suddenly. They were calling for scattered thunderstorms... no, wait, it was "isolated thunderstorms"... on Friday. The boys had been visiting Grandma after Joey's show and going to lunch. The cat got out, and we spent a long time trying to find him. In the search, and various other activities of trying to get the boys inside so they wouldn't scare the cat, the TV remote got misplaced. With no success finding either item, we scampered off shame-facedly and headed for the pool. A couple of kid swims later, we were trying to get food into tummies. The cat had returned, but the remote had not. A decision was made that it would not do for my mom to be stuck without her remote, so I returned to the scene of the crime to help find it. This time, I successfully located it.
Then we took a peek out the window. And it looked... weird. I decided to go home.
I had never seen a derecho before. I can tell you it was one of the strangest, scariest, most beautiful things I have ever seen. There was lightning in the sky, all different colors- but no sound. The flashes backlit the rolling clouds of the front of the storm, giving the sky a magnificent, rolling quality. Then the wind came. I was about halfway home, wishing my camera was good enough to record the splendor of it, when I had to take action to keep my van from blowing off the road. The wind moved straight across the road, making a sort of smoky haze from picking up dust and dirt from the parking lots of the stores at Four Mile Fork. Between the odd lighting and the sudden, odd wind, I knew something was seriously wrong. I briefly considered turning back to my mom's, but realized I was closer to home, so I pressed on. I picked the route more likely to be sheltered from that wind, because fighting the van was not what I wanted for another ten minutes.
By the time I got home, it was fully dark- because the power was gone. Everywhere, everything was dark... except for my block. We still had power, and it seemed like the whole rest of the city did not. It was payback time. We were one of three houses in my entire neighborhood without power after Isabel for nine days. Now, it appeared we were the only ones with power.
It is a good thing we have power. My mom doesn't. It looks like it will at least Sunday before they even start to work on her lines. See, years ago, when my very smart parents built our house, they paid a lot of money and had the lines buried. They did this because we were the last house on the line, and so if our transformer ever went out, we'd likely be the last priority of the power company. Add to that, we lived in the woods. The best way to take out a transformer is to have a tree take out your lines. Hence, bury them and avoid the whole tree thing. Yes, we had more power outages than most people, but they usually weren't very long. I don't remember ever having it out for days at a time. Then, along came some folks who wanted to build some homes, and the power company decided it was cheaper to run their lines from our house than to run it down the driveways of those folks. And none of those folks paid to have those lines buried, and so the company went on the cheap and strung them on poles. This, of course, completely eliminated the entire purpose of our burying lines, because now there were strung lines through the woods to these other houses. And whenever we have a mild zephyr, a tree falls on those lines, and takes out the transformer. And because there are only five houses effected, we are the last to get service and get our power fixed. And no, the electric company did not give my folks their money back for having the lines buried, thank you very much. Idiots. What many people have to say about PEPCO in Maryland, I could say about Dominion Power in Virginia. And it isn't pretty.
So we rescued my mom from the heat and have brought her to sleep on the couch at my house for the duration. Good news: Grandma is here, safe, and available for boy squishing. Bad news: I don't think my couch is all that comfortable for long stays.
Then came days like, say, today. Andy had vision therapy and OT appointments, so we ran to those. We had to stop by work to get caught up on payments and paperwork and stuff. That filled the hour between appointments. Then, my cat has been waxing all over the house, so she had an appointment today. The vet office doesn't have power yet, so they called and asked if I could come in earlier since they had to cancel a bunch of appointments because apparently those cats needed power, and my cat didn't. Now I needed to find my cat four hours sooner than I had been planning. So I drove home from OT with Andy chiming, "follow the barf, and find the cat!" (which I energetically quelled before we got home to the echolalic one). I found her under the kitchen table (thank you, Uncle Evan!) and managed to get her to her appointment. I was worried that her diabetes was revving up, but she had better blood glucose than me. Well, that's not saying much, but you get the point. We now think it might be a thyroid problem. We sent off the blood work and gave her a shot for nausea. So $267 later, I can say that it is probable that I will not awaken tomorrow to cat barf all over the kitchen, bathroom, or stairs. But I am not putting any more money in on that bet, thanks.
I got home to make lunch and referee the meltdown over Mario Party 9.
We then proceeded on our day's adventure: the Search for Fireworks. Yep, we live in a place where we can set off our own. Our challenge to find some free of whistles, as the boys- and I- hate whistles. Too loud and screechy. We have learned we cannot block the sound even with tomatoes in our ears. So we tumbled out of the car on a couple of unsuspecting fireworks stands with the question, "which of the big ones don't whistle?" I am pleased to report that TNT makes several fireworks without whistles, including Pink Diamonds and Hurricane, both of which I highly recommend. They also make a small one called Shark, which is very quiet.
We also recommend safe fireworks handling if you are settling off your own:
1. Have all fireworks ready to go before you start. Remove plastic or paper from fuses, have fuses upright and ready to light.
2. Soak the lawn area with a hose before setting up. The area should be 20-30 feet from the audience area and any other hazard, such as trees, bushes, or buildings.
3. Set up by creating a flat space on the lawn. A wide, flat board is good, and we prefer to place a couple of bricks on top of the board. Soak the board.
4. Use a long lighter or punk for lighting, so you can stay as far back as possible. DO NOT EVER HOLD A FIREWORK IN YOUR HAND.
5. Be sure to have a bucket of water at hand. Also, have a hose on and ready for use. Have a soaked board or long pole for knocking aside used fireworks and duds.
6. Keep the unlit fireworks 20-30 feet away from the lighting area, in the direction OPPOSITE the audience.
7. Light the fireworks one at a time. Remember that there can be a delay. After five minutes, if nothing has happened, you have a dud. Soak it with the hose immediately, and knock it aside with your pole. Soak it some more.
8. Light the fireworks one at a time. After the work is finished, douse it with the hose, knock it aside, and douse it some more before setting up the next firework.
9. Never let children touch or light fireworks. Ever.
10. Fireworks and alcohol do not mix. Never light fireworks if you are impaired by substances- including cold meds. You are literally playing with fire.
I have also seen suggestions to wear cotton clothing (it doesn't burn as quickly as synthetics). In our state, fireworks cannot leave the ground (no bottle rockets).
Anyway, we picked out some big ones, which always makes the vendors happy. Our local Knights of Columbus are highly active in supporting the local disability community, so we always get some from them; and a few other stands here and there selling bigger fireworks.
Then we stopped at the grocery to be sure we had ice cream and whipped cream and cherries for the holiday, and ran home to jump into our bathing suits and get to the pool before the bickering got to my blood pressure. Then I dunked them in the pool, brought them home hungry and exhausted, fed them, and send the bicker brothers up to bed. Where they promptly stopped bickering, since Mommy was not in the room anymore.
Oh, and I have classes going, and midterms to grade. Yay.
So, in begging forgiveness for the scant postings, I leave you with a picture of beautiful, wonderful, awesome boys, in a bicker-free moment.
Now... how to keep them engaged tomorrow?
Saturday, June 30, 2012
My Shining Star
Joey had Star Door Stars camp this past week- and it is all sorts of awesome. Joey loves being a ham, up on stage, making everybody laugh and clap. I may have a stand-up comedian in the making.
This year's play was the Colors of Life, all about colors. It appears to have been partly written by the campers, which made it extra-awesome. Joey recited the lines about grey and the lines about blue, as well as singing and dancing to a few songs.
The kids all made puppets. Joey's puppet is named Luigi, his favorite color is green, and he likes to say, "Mama Mia!" Joey was really proud of his puppet, and singing with his puppet on stage.
He was the Itsy Bitsy Spider, with great little dance!
Joey saying his lines- a bird! INCOMING!!!
Joey tells us all about the color blue.
Taking applause, and a bow.
It is always amazing to see what these folks can get kids to do in a week- reading lines, dancing, singing, participating. The kids make their costumes, they make the sets and props, everything. They even had one kid tap-dancing!
Joey really loves Stage Door Stars, and we are so grateful for the folks who run it and the folks who volunteer. Every child has at least one "coach", they have a speech therapist and an occupational therapist, they have the theater folks- a director and a choreographer, they have an art instructor. Lots of awesome people being positive and encouraging, and doing fabulous things!
We only wish they ran the program more- twice a year? four times a year? It would be SO awesome.
Saturday, June 23, 2012
Having a small bovine
Being ten, Joey has discovered the glory and power of language in a way that young boys often do. That's right! He's discovered the word f#@%.
Yay.
We've actually worked up to this gem, in a very usual way. "What the..." has been bouncing about for a while now, occasionally completed with the more tame "hell". "Holy crap!" has been ringing through our halls (in an excellent imitation of my own inflection). Kids at school thought it was funny to teach him "bitch" a couple of years ago, but it didn't really catch on, especially after he discovered it's a real word for a female breeding dog. But then came the power of f#@%.
Not much turns heads in a room like a ten year old shouting it out to the world, I can tell you.
With Joey's communication issues, and the potential for bullying and whatnot, and hey, he's TEN, we made the executive decision to curb this behavior. I mean, who wants their ten-year-old swimming in the pool, yelling "F#@%!" at random? This isn't an autism issue. This is a being ten issue.
Ignoring it didn't actually help. When you ignore Joey, and he says something that he wants attended to, he just says it again. And again. And again. And increases the volume. And then adds, "Mommy, I said _____________!!!!" That wasn't going to help. We were kinda silly thinking it might.
Another choice for changing behavior is to try to replace it with another, more appropriate behavior. This is something that can be very difficult, because replacement is not something that can be always controlled. For example, if we had Joey stop sucking his thumb, he would replace that comforting behavior with something else; and what would it be? We might try to train him to chew gum instead, but that doesn't mean he will do it. He might find it more satisfying to bang his head or spit. Now you've replaced the behavior, but not with a more appropriate behavior. Whoops.
We got lucky. Or maybe someone at school picked up on the problem and made a suggestion. Or maybe an angel whispered it into Joey's ear. Whatever happened, he came into my bedroom one morning, and instead of yelling "What the hell?" (yes, it became a common routine), he yelled out, "What the cow?"
And I laughed. Joey loves the idea that he might be funny and make others laugh. He picked right up on the positive reaction. We had a winner!
We are totally replacing the bad words with "cow." As in, "What the cow!" and "I don't give a flying cow!" and "This job is completely cowy." My apologies to offended bovines everywhere.
No, we haven't yet eliminated the foul language, but we have the first step- an alternative, which gets him a more positive reaction, which is more pleasing than a negative reaction. Our job is to reinforce the behavior we want, not the behavior we don't. Listening for words and signals is a constant thing here, teasing out what we need to know from the stream of babble. And we like this approach, because it doesn't negate Joey's need for exclamation and communication of extreme feeling.
After all, sometimes you just gotta let out a big ol' "COW!"
Yay.
We've actually worked up to this gem, in a very usual way. "What the..." has been bouncing about for a while now, occasionally completed with the more tame "hell". "Holy crap!" has been ringing through our halls (in an excellent imitation of my own inflection). Kids at school thought it was funny to teach him "bitch" a couple of years ago, but it didn't really catch on, especially after he discovered it's a real word for a female breeding dog. But then came the power of f#@%.
Not much turns heads in a room like a ten year old shouting it out to the world, I can tell you.
With Joey's communication issues, and the potential for bullying and whatnot, and hey, he's TEN, we made the executive decision to curb this behavior. I mean, who wants their ten-year-old swimming in the pool, yelling "F#@%!" at random? This isn't an autism issue. This is a being ten issue.
Ignoring it didn't actually help. When you ignore Joey, and he says something that he wants attended to, he just says it again. And again. And again. And increases the volume. And then adds, "Mommy, I said _____________!!!!" That wasn't going to help. We were kinda silly thinking it might.
Another choice for changing behavior is to try to replace it with another, more appropriate behavior. This is something that can be very difficult, because replacement is not something that can be always controlled. For example, if we had Joey stop sucking his thumb, he would replace that comforting behavior with something else; and what would it be? We might try to train him to chew gum instead, but that doesn't mean he will do it. He might find it more satisfying to bang his head or spit. Now you've replaced the behavior, but not with a more appropriate behavior. Whoops.
We got lucky. Or maybe someone at school picked up on the problem and made a suggestion. Or maybe an angel whispered it into Joey's ear. Whatever happened, he came into my bedroom one morning, and instead of yelling "What the hell?" (yes, it became a common routine), he yelled out, "What the cow?"
And I laughed. Joey loves the idea that he might be funny and make others laugh. He picked right up on the positive reaction. We had a winner!
We are totally replacing the bad words with "cow." As in, "What the cow!" and "I don't give a flying cow!" and "This job is completely cowy." My apologies to offended bovines everywhere.
No, we haven't yet eliminated the foul language, but we have the first step- an alternative, which gets him a more positive reaction, which is more pleasing than a negative reaction. Our job is to reinforce the behavior we want, not the behavior we don't. Listening for words and signals is a constant thing here, teasing out what we need to know from the stream of babble. And we like this approach, because it doesn't negate Joey's need for exclamation and communication of extreme feeling.
After all, sometimes you just gotta let out a big ol' "COW!"
Thursday, June 21, 2012
Uh oh.
So I went up to clean the boys' bathroom. It is not a job I relish, that is for sure. They need a fan in there, and I screwed up painting their washcabinet. The walls are textured, because the idiots who lived in the house before us thought that was stylish.
I am about to take a sander to them. Not because I'm ready to, but because I have to. You can't clean texture. Especially texture that has been smeared on.
I know I haven't been in there for two weeks, which is bad of me. I rely over-much on bleach tankcakes, lysol spray, and the fact that the floor is mopped daily after baths by necessity. So I am partly to blame for the disaster. But seriously? I thought we had left smearing in the dusts of fears.
What it tells me is that Joey is having trouble getting clean properly. Downstairs, I have trouble with each of them using a whole roll of paper every time they use the toilet. With the sink so close at hand upstairs, I was assuming they had the sense to wash their hands instead of wiping them on the wall. I was so, so wrong.
The question now becomes, why is he having this problem? And what can we do to fix it, and fast? For one, how uncomfy to not get the job done, then have to go out in summer heat. Poor buddy. For two, what has happened to decrease his abilities? How can that be addressed? And third, the social stigma would be incredible if we can't move fast.
My current thoughts are to return to wipes- you can get kid wipes that are even flushable, and may help get him cleaner than paper in the first place. Second, you can wipe the wall clean with them fast. And its one of those things that, if he spends the rest of his life using wipes- well, so what?
I am about to take a sander to them. Not because I'm ready to, but because I have to. You can't clean texture. Especially texture that has been smeared on.
I know I haven't been in there for two weeks, which is bad of me. I rely over-much on bleach tankcakes, lysol spray, and the fact that the floor is mopped daily after baths by necessity. So I am partly to blame for the disaster. But seriously? I thought we had left smearing in the dusts of fears.
What it tells me is that Joey is having trouble getting clean properly. Downstairs, I have trouble with each of them using a whole roll of paper every time they use the toilet. With the sink so close at hand upstairs, I was assuming they had the sense to wash their hands instead of wiping them on the wall. I was so, so wrong.
The question now becomes, why is he having this problem? And what can we do to fix it, and fast? For one, how uncomfy to not get the job done, then have to go out in summer heat. Poor buddy. For two, what has happened to decrease his abilities? How can that be addressed? And third, the social stigma would be incredible if we can't move fast.
My current thoughts are to return to wipes- you can get kid wipes that are even flushable, and may help get him cleaner than paper in the first place. Second, you can wipe the wall clean with them fast. And its one of those things that, if he spends the rest of his life using wipes- well, so what?
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