Wednesday, July 23, 2008
Tuesday, July 22, 2008
Been there. Done that. (A Note on Alyssa Martin)
Now we have a police chief picking on a 4-year-old autistic girl.
I've had people in restaurants complain about Joey, and he wasn't even making noise. The irritation? He ate standing up. The people near us weren't the problem. People would cross the restaurant and tell me how rude it was and disruptive it was that my child wouldn't sit down to eat. Like it was any of their business.
We did have a disruptive period, between one with autism and one with SPD. We had a period when we didn't go out to eat much. We were afraid of people like Chief Rushton. People in authority who are ignorant, insensitive, and able to act on that. If you owned a restaurant and the police chief asked for someone to be removed from your establishment, what would you do? That is called "abuse of power." And it is a very, very real threat.
So Alyssa Martin, we are thinking of you and your family. You have the same human rights as everyone else. We're sorry you have to fight harder to defend and exercise them.
I've had people in restaurants complain about Joey, and he wasn't even making noise. The irritation? He ate standing up. The people near us weren't the problem. People would cross the restaurant and tell me how rude it was and disruptive it was that my child wouldn't sit down to eat. Like it was any of their business.
We did have a disruptive period, between one with autism and one with SPD. We had a period when we didn't go out to eat much. We were afraid of people like Chief Rushton. People in authority who are ignorant, insensitive, and able to act on that. If you owned a restaurant and the police chief asked for someone to be removed from your establishment, what would you do? That is called "abuse of power." And it is a very, very real threat.
So Alyssa Martin, we are thinking of you and your family. You have the same human rights as everyone else. We're sorry you have to fight harder to defend and exercise them.
Who is Michael Savage?
I was sitting in the speech therapist's waiting room, playing blocks with Andy, when a friend (who has an ASD child), came in with the words, "Did you hear what Michael Savage said???"
And honestly, my first response was, "Who?"
Since then, I've done some poking around. Listened to some sound bites. Now my question is, "what is he talking about?"
I'm in an odd position here. Since I am active in the special ed community, the local autism community, and am the chair of parent sped advisory committee, I have a fair grasp of the kids who have diagnoses of autism, and even a few who are probably autistic, but haven't been diagnosed. I spend a lot of time sitting around OT and SLP offices, and see a lot of kids with ASD diagnoses go through. I haven't met a single child with an autism diagnosis (including PDD-NOS and Asperger's Syndrome) who are not ASD. Not one.
And what money? Most of these kids are trying get through with what they can. The school tells them its a medical problem. The medical folks, especially insurance, say its an educational problem. There is no magic "autism pill" out there. Most of these kids muddle through attempts to gain skills with whatever the schools begrudgingly dole out to them, and I assure Mr. Savage, that ain't much.
You know, I have a lot of people who tell me Joey isn’t “truly” autistic. He can talk. He can display emotion and form relationships. He can do a whole myriad of things I am told autistic children don’t do. But guess what? He’s still autistic. Spend a whole day with him. Watch him in a room of non-autistic children. If he never screamed in frustration again, he'd still be autistic. Clearly, demonstrably autistic.
How many times have I seen him next to non-disabled peers and have it really hit me in the face, in the stomach, in the heart how disabled he really is? And it hits so hard because most time, I don't really think about it. I'm too busy enjoying and praising and seeing all the wonderful things he can and does do, all the ways he is beautiful and wonderful and able. Joey is smart, funny, loving, adorable, sweet, thoughtful, joyful, silly, talented... and autistic.
And honestly, my first response was, "Who?"
Since then, I've done some poking around. Listened to some sound bites. Now my question is, "what is he talking about?"
I'm in an odd position here. Since I am active in the special ed community, the local autism community, and am the chair of parent sped advisory committee, I have a fair grasp of the kids who have diagnoses of autism, and even a few who are probably autistic, but haven't been diagnosed. I spend a lot of time sitting around OT and SLP offices, and see a lot of kids with ASD diagnoses go through. I haven't met a single child with an autism diagnosis (including PDD-NOS and Asperger's Syndrome) who are not ASD. Not one.
And what money? Most of these kids are trying get through with what they can. The school tells them its a medical problem. The medical folks, especially insurance, say its an educational problem. There is no magic "autism pill" out there. Most of these kids muddle through attempts to gain skills with whatever the schools begrudgingly dole out to them, and I assure Mr. Savage, that ain't much.
You know, I have a lot of people who tell me Joey isn’t “truly” autistic. He can talk. He can display emotion and form relationships. He can do a whole myriad of things I am told autistic children don’t do. But guess what? He’s still autistic. Spend a whole day with him. Watch him in a room of non-autistic children. If he never screamed in frustration again, he'd still be autistic. Clearly, demonstrably autistic.
How many times have I seen him next to non-disabled peers and have it really hit me in the face, in the stomach, in the heart how disabled he really is? And it hits so hard because most time, I don't really think about it. I'm too busy enjoying and praising and seeing all the wonderful things he can and does do, all the ways he is beautiful and wonderful and able. Joey is smart, funny, loving, adorable, sweet, thoughtful, joyful, silly, talented... and autistic.
Happy Birthday, Katie
Today is Katie McCarron's birthday. She would have been six years old. Our best wishes to her family, and know we are thinking of you. We are working hard to let people know that autism is not an excuse for murder, it is not a sentence of doom, and that people with disabilities are just as valuable and alive as anyone else.
Monday, July 21, 2008
Secret Hiding Place
The boys are on a Blue's Clues kick, so I got them "notebooks" at Walmart, and they are running around finding clues to draw in their "notebooks." Somehow, instead of crayons, they found pens.
Andy came up the stairs, his pen in pieces, in tears. I took all the remains of pen and assured him I could re-assemble it, and then attempted to do so. I got it all together, but it wouldn't "click."
Confused, I tried again. No click.
I took it all apart, examined the pieces, and tried again. No click.
Joey comes bouncing into the room. "Look, Mom! I have a person in my nose!" He proudly displays his nose, where all I can see is mucus membrane.
"Do you need a tissue?" I ask absently, setting each piece of pen in a little line on the counter. I hear a snort. Something small hits the floor. I whisk around to see a small bit of plastic being retrieved and displayed proudly.
"See? A person in my nose!" Joey chimes, pleased as punch.
Yes, it was the small missing bit of pen. Yes, I had to clean it. Yes, we had a discussion of not putting things up our nose.
Andy came up the stairs, his pen in pieces, in tears. I took all the remains of pen and assured him I could re-assemble it, and then attempted to do so. I got it all together, but it wouldn't "click."
Confused, I tried again. No click.
I took it all apart, examined the pieces, and tried again. No click.
Joey comes bouncing into the room. "Look, Mom! I have a person in my nose!" He proudly displays his nose, where all I can see is mucus membrane.
"Do you need a tissue?" I ask absently, setting each piece of pen in a little line on the counter. I hear a snort. Something small hits the floor. I whisk around to see a small bit of plastic being retrieved and displayed proudly.
"See? A person in my nose!" Joey chimes, pleased as punch.
Yes, it was the small missing bit of pen. Yes, I had to clean it. Yes, we had a discussion of not putting things up our nose.
Sunday, July 20, 2008
Sleepover at Grandma's: First Try
We're thinking in case of an emergency, it might be a good idea if the boys got used to possibly sleeping at Grandmas house. Since Andy has been a Grandma Boy lately, and didn't want to go home the last couple of visits, Grandma thought it might be time to start letting them have Grandma Sleepovers, where they spend a night at Grandma's house, one at a time.
For our first attempt, we asked which boy would like to stay with Grandma, and the volunteer was Joey. That was a surprise, but we went with it, because after all, he's the one that is going to have the harder time. We called Grandma, and it was settled. Joey was going for his first sleepover!
i helped Joey pack his bag, and talk about his trip. We talked about things he might do with Grandma, how this would be special time with Grandma, and how he would be staying there, and Mommy and Daddy and Andy would go home, while he stayed at Grandma's house. We made sure we had LittleBear and fresh pajamas and his good toothbrush.
We drove out to Grandma's, talking about what was happening. Andy started getting antsy and saying he wanted to stay with Grandma, so we had to assure him he would have a turn. The assurances were not altogether successful.
Once at Grandma's, we had a little visit, then it was time to go. Boys were hungry. Joey started saying he didn't want to stay today. We assured Joey we would see him in the morning. Grandma offered pizza for dinner, something Joey is starting to like to eat because of the new infatuation with Chuck E. Cheese. We hugged him and kissed him and let Andy say goodbye, and we were off.
We drove out of sight, waited a few minutes, then called Grandma.
All was not well.
Apparently he returned to Grandma, shaking, and talking about "the machine has left me" and "going to the beach!" Grandma asked us to come back. He was holding together- barely. He was unhappy. This wasn't fun.
When I returned, I tried to act casual. Joey was hugging Grandma, and she was assuring him that we wouldn't go to the beach without him. He was pretty red. As Grandma pointed out that I was back, he looked at me and said, "Mommy! Why did you come back?" All the sudden, he wanted to stay at Grandma's. Only he didn't want Mom to leave. Or "the machine" (which is a new name for the car, apparently). He was especially upset about the car leaving. Mom and Dad and Andy could go, but not the car.
It was decided that Joey needed to go home instead of having his sleepover tonight. We'll go back and have an adventure tomorrow, and then try another sleepover another day.
I'm thinking there were a few of mistakes on my part.
1. Not enough warning. Joey may need several days' notice, at least for the first couple of times. Of course, in an emergency, there would be no notice, but I think he held it together enough that if we really had an emergency, he would be OK. Not happy, but OK.
2. Not enough prep. We needed to think about exactly what Joey would be doing, so he could get right to it, and distract him from us leaving.
3. Too big a leap. We might need to do this in small steps. Have a "campout" at Grandma's that is a long evening instead of an all-nighter. Work up to a family slumber party, first just a late night, then all night together. Maybe have a few "afternoons with Grandma" where he spends a couple hours alone at Grandma's, but we come back for him. Then have our sleepover.
When Joey was a baby, we used to leave him with Grandma a lot. I was working at a couple of distant campuses, and so Grandma would take the baby for a while. He even spent the night with her once. But that was a long time ago- he probably doesn't even remember it. As he got older and needed more routine (plus having a second boy), we just had Grandma come over here to watch boys. It would be nice to have an option for them to stay there, and enjoy the wonders of being with Grandma. Besides, Grandma's house is surrounded by woods- boy heaven.
For our first attempt, we asked which boy would like to stay with Grandma, and the volunteer was Joey. That was a surprise, but we went with it, because after all, he's the one that is going to have the harder time. We called Grandma, and it was settled. Joey was going for his first sleepover!
i helped Joey pack his bag, and talk about his trip. We talked about things he might do with Grandma, how this would be special time with Grandma, and how he would be staying there, and Mommy and Daddy and Andy would go home, while he stayed at Grandma's house. We made sure we had LittleBear and fresh pajamas and his good toothbrush.
We drove out to Grandma's, talking about what was happening. Andy started getting antsy and saying he wanted to stay with Grandma, so we had to assure him he would have a turn. The assurances were not altogether successful.
Once at Grandma's, we had a little visit, then it was time to go. Boys were hungry. Joey started saying he didn't want to stay today. We assured Joey we would see him in the morning. Grandma offered pizza for dinner, something Joey is starting to like to eat because of the new infatuation with Chuck E. Cheese. We hugged him and kissed him and let Andy say goodbye, and we were off.
We drove out of sight, waited a few minutes, then called Grandma.
All was not well.
Apparently he returned to Grandma, shaking, and talking about "the machine has left me" and "going to the beach!" Grandma asked us to come back. He was holding together- barely. He was unhappy. This wasn't fun.
When I returned, I tried to act casual. Joey was hugging Grandma, and she was assuring him that we wouldn't go to the beach without him. He was pretty red. As Grandma pointed out that I was back, he looked at me and said, "Mommy! Why did you come back?" All the sudden, he wanted to stay at Grandma's. Only he didn't want Mom to leave. Or "the machine" (which is a new name for the car, apparently). He was especially upset about the car leaving. Mom and Dad and Andy could go, but not the car.
It was decided that Joey needed to go home instead of having his sleepover tonight. We'll go back and have an adventure tomorrow, and then try another sleepover another day.
I'm thinking there were a few of mistakes on my part.
1. Not enough warning. Joey may need several days' notice, at least for the first couple of times. Of course, in an emergency, there would be no notice, but I think he held it together enough that if we really had an emergency, he would be OK. Not happy, but OK.
2. Not enough prep. We needed to think about exactly what Joey would be doing, so he could get right to it, and distract him from us leaving.
3. Too big a leap. We might need to do this in small steps. Have a "campout" at Grandma's that is a long evening instead of an all-nighter. Work up to a family slumber party, first just a late night, then all night together. Maybe have a few "afternoons with Grandma" where he spends a couple hours alone at Grandma's, but we come back for him. Then have our sleepover.
When Joey was a baby, we used to leave him with Grandma a lot. I was working at a couple of distant campuses, and so Grandma would take the baby for a while. He even spent the night with her once. But that was a long time ago- he probably doesn't even remember it. As he got older and needed more routine (plus having a second boy), we just had Grandma come over here to watch boys. It would be nice to have an option for them to stay there, and enjoy the wonders of being with Grandma. Besides, Grandma's house is surrounded by woods- boy heaven.
Friday, July 18, 2008
Visit on Demand
This was my first morning with Joey; the first week of ESY 2008 has come to a close. We were thinking of going swimming, but my trainer kicked my patookas yesterday, and walking, rising, or sitting sets my thighs on fire. Four ibuprofens haven't touched it. Tylenol? A joke. I have a high pain tolerance. I'm a lady who got through her first c-section on Advil, not Percocet. Swimming was out.
However, I had some things to mail, so I thought a trip to the post office would be good. Joey's been talking about post offices lately, and his new re-interest in Blue's Clues includes Mailbox. So off we went, to chat about the post office.
Most of the short trip was a barage of questions from me ("What do you do at a post office? See what Mommy has? What are these? We're going to send these thing to other people- mail them. We pay to have them taken to the other people. See the postman print out the stamp?") with only grunts, deliberate silence, or sullen "I don't know" in response. This was not going well. So I decided to switch to letters instead. Mailbox gives letters to Steve. People write letters. They tell other people all the news and all about themselves. Would you like to write a letter? Who would you write a letter to? Dexter? Andy? Max and Charlie?
Joey perked up. "Want Max and Charlie." I finished up my business and persued this interest.
"You want to write to Max and Charlie?"
"Want to see Max and Charlie."
"You want to see them? You want to visit?"
"Yes."
Alrighty, then. Into the car, we're off to see Max and Charlie. I'm worried he might be thinking of his cousins, one of whom is also called Charlie, but when we get to Aunt Christina's, he goes over and says hi to Max and Charlie. He wanted to see them. Then he plays with Jack, their younger brother (Jack and Joey were in the same class at one point).
Why is this amazing? For one, Joey doesn't often communicate what he wants. He tends to go with the flow and take what comes. This is especially true in activities. For two, we haven't actually gone to play with Max and Charlie in months. We haven't even played with Jack in a long time. It was probably around Christmas when joey saw them last. Finally, having a playdate with Max and Charlie is a little different than having one with other children. Their mobility is highly limited. Their communication is highly limited. Its not like he could play his favorite game, duck-duck-goose, easily with these children. Even Jack is a different matter. Joey does make them laugh, especially if he is running about or acting very silly. Perhaps he enjoys making them happy. I don't know. Joey has always liked them- now I know he has missed them. We need to get over there more often.
And yes, he had them all in stitches. He played with Jack, too. I got to talk to Aunt Christina. A good time was had by all.
However, I had some things to mail, so I thought a trip to the post office would be good. Joey's been talking about post offices lately, and his new re-interest in Blue's Clues includes Mailbox. So off we went, to chat about the post office.
Most of the short trip was a barage of questions from me ("What do you do at a post office? See what Mommy has? What are these? We're going to send these thing to other people- mail them. We pay to have them taken to the other people. See the postman print out the stamp?") with only grunts, deliberate silence, or sullen "I don't know" in response. This was not going well. So I decided to switch to letters instead. Mailbox gives letters to Steve. People write letters. They tell other people all the news and all about themselves. Would you like to write a letter? Who would you write a letter to? Dexter? Andy? Max and Charlie?
Joey perked up. "Want Max and Charlie." I finished up my business and persued this interest.
"You want to write to Max and Charlie?"
"Want to see Max and Charlie."
"You want to see them? You want to visit?"
"Yes."
Alrighty, then. Into the car, we're off to see Max and Charlie. I'm worried he might be thinking of his cousins, one of whom is also called Charlie, but when we get to Aunt Christina's, he goes over and says hi to Max and Charlie. He wanted to see them. Then he plays with Jack, their younger brother (Jack and Joey were in the same class at one point).
Why is this amazing? For one, Joey doesn't often communicate what he wants. He tends to go with the flow and take what comes. This is especially true in activities. For two, we haven't actually gone to play with Max and Charlie in months. We haven't even played with Jack in a long time. It was probably around Christmas when joey saw them last. Finally, having a playdate with Max and Charlie is a little different than having one with other children. Their mobility is highly limited. Their communication is highly limited. Its not like he could play his favorite game, duck-duck-goose, easily with these children. Even Jack is a different matter. Joey does make them laugh, especially if he is running about or acting very silly. Perhaps he enjoys making them happy. I don't know. Joey has always liked them- now I know he has missed them. We need to get over there more often.
And yes, he had them all in stitches. He played with Jack, too. I got to talk to Aunt Christina. A good time was had by all.
A thought on life
When I drop off Andy at school, there is a van with one of those "in loving memory" decals on the back window. The loving memory is of a child who lived just shy of six months.
I know a lot of kids that some people think would be better off not being here. In fact, there are people in this world who think Joey is one of those kids. They make it clear with their attitudes towards prenatal testing, their attitudes towards disabilities, and even the way they act when they discover Joey is autistic.
I just want those people to know a few things.
I love Joey and Andy. I wouldn't trade them and who they are for all the tea in China.
Just because autism is part of who Joey is, and I love Joey as he is, doesn't mean I don't want to help him, support him, and raise him. I want him to grow and be happy and enjoy life. He's doing a good job of that.
Let me make that really clear: Joey loves living. He enjoys life. He wants to be here, too.
I know several children who are more disabled than Joey with various conditions. I assure you that they all enjoy being here, too.
There are things far worse than having a disabled child. I cannot imagine the pain of the parent at Andy's school. And I hope I never know what that is like. I am absolutely sure it is far worse than anything I have ever experienced. Ever. And to that parent- I am thinking of you and your family.
I know a lot of kids that some people think would be better off not being here. In fact, there are people in this world who think Joey is one of those kids. They make it clear with their attitudes towards prenatal testing, their attitudes towards disabilities, and even the way they act when they discover Joey is autistic.
I just want those people to know a few things.
I love Joey and Andy. I wouldn't trade them and who they are for all the tea in China.
Just because autism is part of who Joey is, and I love Joey as he is, doesn't mean I don't want to help him, support him, and raise him. I want him to grow and be happy and enjoy life. He's doing a good job of that.
Let me make that really clear: Joey loves living. He enjoys life. He wants to be here, too.
I know several children who are more disabled than Joey with various conditions. I assure you that they all enjoy being here, too.
There are things far worse than having a disabled child. I cannot imagine the pain of the parent at Andy's school. And I hope I never know what that is like. I am absolutely sure it is far worse than anything I have ever experienced. Ever. And to that parent- I am thinking of you and your family.
Thursday, July 17, 2008
No sales in July.
And its even free shipping this week.
But I did get a nice check from Cafepress for the Christmas sales. Thank you!
But I did get a nice check from Cafepress for the Christmas sales. Thank you!
Wednesday, July 16, 2008
Phrases of the week
Imagine these repeated over and over within a single "conversation":
"Mommy? A Dragonfly has strong jaws."
"Mommy! No Dogs! Say 'No dogs', Mommy!"
"Mommy, dogs can bited me."
"Duck... duck... goose!"
"I love you." (especially if he knows he just did something wrong or inappropriate.)
"Mommy, I have fun."
"My school at the farm!" (It isn't. Andy's school is a farm.)
"Where my school go?"
"Mommy? Mommy? MOMMY?... I'm being quiet!"
"No Mr. Shelby today. We stopped that."
"Mommy, we don't talk to wolves."
"Where's Grandma, Mommy?"
"Mommy? Mommy, it says WAAAAAh-Waaaaaah." (Andy: "No, Joey! Wa-wa!")
And for the sound-only phrases (see if you can figure out what words they come from):
"Iwanthaoneiwanthaoneiwanthaone..."
"Ahgopaaaaak"
"AnseeDAdee."
"Maskoo-a-th'faaaaaaaaaam."
"Ahgopaaaaatee."
"AhseeANdee."
And it beats the silence by a long shot.
"Mommy? A Dragonfly has strong jaws."
"Mommy! No Dogs! Say 'No dogs', Mommy!"
"Mommy, dogs can bited me."
"Duck... duck... goose!"
"I love you." (especially if he knows he just did something wrong or inappropriate.)
"Mommy, I have fun."
"My school at the farm!" (It isn't. Andy's school is a farm.)
"Where my school go?"
"Mommy? Mommy? MOMMY?... I'm being quiet!"
"No Mr. Shelby today. We stopped that."
"Mommy, we don't talk to wolves."
"Where's Grandma, Mommy?"
"Mommy? Mommy, it says WAAAAAh-Waaaaaah." (Andy: "No, Joey! Wa-wa!")
And for the sound-only phrases (see if you can figure out what words they come from):
"Iwanthaoneiwanthaoneiwanthaone..."
"Ahgopaaaaak"
"AnseeDAdee."
"Maskoo-a-th'faaaaaaaaaam."
"Ahgopaaaaatee."
"AhseeANdee."
And it beats the silence by a long shot.
Monday, July 14, 2008
Alex Barton Update 5
Well, now that some publicity has been given to Alex Barton, other parents want to chime in about their own frustrating experiences- and the Attorney General of Florida is saying he wants to hear all about it. If you are in Florida and have a story to tell, now's the time.
Oh, and unless you want your blood pressure to shoot through the roof, skip the comments to the linked article.
Oh, and unless you want your blood pressure to shoot through the roof, skip the comments to the linked article.
Sunday, July 13, 2008
Back to School
Joey and Andy go back to school tomorrow*.
So you know what I'm doing tonight.
Yes, yes, labeling clothes, putting together snacks, checking off supply lists, and packing backpacks. Sure. I also had to run out to my mom's, because her basement flooded and I'm helping her clean it out (we spent most of the day today out there- JoeyAndyDad heroically took two loads of trash to the dump so I wouldn't have to lift bags full of sodden clothes and cardboard.) And I cried all the way home.
Yes, its only half-days. And I'll get Friday mornings with just Joey, which is a rare treat. It will only be four weeks for Andy, six for Joey. And then I will have one week, most of which JoeyAndyDad has also taken off work and we hope to be at the beach for, before they go back to school for real. And we have had an amazing few weeks, with trips all over the place, which I can't afford to do for another seven weeks. And I am an utter failure at providing Joey with the structure he needs to get through his day with any sort of normalcy (and before you post, "Yes you can!", be aware that I know it is a failing on my part, and really would rather not feel worse about it). I'll still have afternoons- well, when we aren't running to therapy. Or the gym. Or running errands. Maybe some afternoons we'll do some of these craft projects I was planning. Or visit some folks on the weekends.
But its just not the same as having my buddies here with me.
I'm not saying all day, every day is sunshine and roses and easy living. But that's life, and I wouldn't miss my babies even in those moments when everything seems to be in melt-down. Every moment is part of who we are.
I know they both do better in school, they learn a lot, they have a lot of fun, they learn to be independent and confident and themselves, without Mommy's shadow. All children need some freedom to breathe and be themselves, and learn who they are, and process what I am teaching, just as time with me permits them to process what school is teaching.
But I feel I am missing out. And I miss them. And life is just very different when there aren't two little guys giggling in the back seat. Even when its just one, its not the same. They're my little buddies.
*I wrote this last night, but we lost our internet connection- so here it is this morning, as we await the bus!
So you know what I'm doing tonight.
Yes, yes, labeling clothes, putting together snacks, checking off supply lists, and packing backpacks. Sure. I also had to run out to my mom's, because her basement flooded and I'm helping her clean it out (we spent most of the day today out there- JoeyAndyDad heroically took two loads of trash to the dump so I wouldn't have to lift bags full of sodden clothes and cardboard.) And I cried all the way home.
Yes, its only half-days. And I'll get Friday mornings with just Joey, which is a rare treat. It will only be four weeks for Andy, six for Joey. And then I will have one week, most of which JoeyAndyDad has also taken off work and we hope to be at the beach for, before they go back to school for real. And we have had an amazing few weeks, with trips all over the place, which I can't afford to do for another seven weeks. And I am an utter failure at providing Joey with the structure he needs to get through his day with any sort of normalcy (and before you post, "Yes you can!", be aware that I know it is a failing on my part, and really would rather not feel worse about it). I'll still have afternoons- well, when we aren't running to therapy. Or the gym. Or running errands. Maybe some afternoons we'll do some of these craft projects I was planning. Or visit some folks on the weekends.
But its just not the same as having my buddies here with me.
I'm not saying all day, every day is sunshine and roses and easy living. But that's life, and I wouldn't miss my babies even in those moments when everything seems to be in melt-down. Every moment is part of who we are.
I know they both do better in school, they learn a lot, they have a lot of fun, they learn to be independent and confident and themselves, without Mommy's shadow. All children need some freedom to breathe and be themselves, and learn who they are, and process what I am teaching, just as time with me permits them to process what school is teaching.
But I feel I am missing out. And I miss them. And life is just very different when there aren't two little guys giggling in the back seat. Even when its just one, its not the same. They're my little buddies.
*I wrote this last night, but we lost our internet connection- so here it is this morning, as we await the bus!
Painting for Grandma
We decided to make some pretty pictures for Grandma. These are actually from a couple days back.
Andy working on his masterpiece, "Dinosaur Paths."
Andy was wearing this dog hat after Joey spent the day in his Little Bear hat.
Joey prefers making calendars and writing. He did make a lovely portrait of Chuck E. Cheese.
I have to say, the boys worked on their pictures for a good half hour. I need to have Art Time more often.
Andy working on his masterpiece, "Dinosaur Paths."
Andy was wearing this dog hat after Joey spent the day in his Little Bear hat.
Joey prefers making calendars and writing. He did make a lovely portrait of Chuck E. Cheese.
I have to say, the boys worked on their pictures for a good half hour. I need to have Art Time more often.
Friday, July 11, 2008
In the Rainforest Cafe
As a great end-of-summer jaunt (the boys go back to school on Monday here, Joey for ESY, Andy for camp at his school), we drove two and a half hours one-way to go to lunch.
But this wasn't just any lunch. This was lunch at the Rainforest Cafe!
Folks, you know you've done good with sensory regulation when your kid can actually eat a lunch at the Rainforest Cafe. And if you have one near you (remember, we consider a 2 1/2 hour drive to be "near you"), go. It is amazing.
Andy actually spent a good time under the table. Every, oh, 20-30 minutes, Rainforest Cafe has a thunderstorm, and it scares the bejeebus out of Andy. He takes a few minutes to calm down and regulate, but once he settles, only the storm returns him to diving for cover under the table. Joey just loves it, all the moving stuff, especially the butterflies. They also have tropical fish tanks, and the guys could of course spend most of the day there. Also, the one in Towson has a crocodile at the entrance that fascinates them. Also, they get to order a volcano!
As an added bonus, the food is good and different, and we've been happy with our service in Towson. We're sorry they closed the one in Tyson's Corner, though. That's only about a 50 minute drive.
But this wasn't just any lunch. This was lunch at the Rainforest Cafe!
Folks, you know you've done good with sensory regulation when your kid can actually eat a lunch at the Rainforest Cafe. And if you have one near you (remember, we consider a 2 1/2 hour drive to be "near you"), go. It is amazing.
Andy actually spent a good time under the table. Every, oh, 20-30 minutes, Rainforest Cafe has a thunderstorm, and it scares the bejeebus out of Andy. He takes a few minutes to calm down and regulate, but once he settles, only the storm returns him to diving for cover under the table. Joey just loves it, all the moving stuff, especially the butterflies. They also have tropical fish tanks, and the guys could of course spend most of the day there. Also, the one in Towson has a crocodile at the entrance that fascinates them. Also, they get to order a volcano!
As an added bonus, the food is good and different, and we've been happy with our service in Towson. We're sorry they closed the one in Tyson's Corner, though. That's only about a 50 minute drive.
Thursday, July 10, 2008
Pride and Joy
So there we were, in the garden of the King's Arms Tavern, ordering lunch.
I am very proud of my boys (did you notice?). They say 'please' and 'thank you.' They can order their own food, and they eat what they order. They stay mostly in their seats, and when they do get up, they aren't disturbing other folks, they are looking at the birds and the plants in the garden. Joey tells the waitress how good his lunch is. Andy shows off his crayons.
It is one of those moments when, at the time, the idea of Joey being "disabled" is left aside, not even considered. That he is autistic is always present, but not really thought about, either. Joey is being Joey, Andy is being Andy, and we are having a lovely lunch together under the grapevines of the garden trellis. It is only now, two days gone, that it occurs to me:
Wow.
Joey is one of the hardest working people I know, and look at how far his work has taken him! Like other children, he learns to read and write and do math and that sort of thing. History and social studies is a weak point for him, hence the trips to Williamsburg and other living history exhibits and museums. But he has also had to learn how to speak. He has had to learn how to self-regulate in sensory-rich environments. He has had to learn to interact appropriately with strangers. Things that other kids pick up on as they grow up and experience the world, Joey has had to be taught, has had to learn just as other kids learn reading, math, or science- with lessons, with experiments, with carefully constructed experiences and situations and controlled responses. He's had to practice skills that other kids seem to "just know" (which means they were taught at a younger age, or could use and synthesize models of behavior they observed on their own).
And the results of all that work? A lovely lunch in the garden of the King's Arms Tavern.
Most people I would say this to would reply, "well, sure" and give it no more thought. Or they would look at me funny, because don't all kids have to learn this stuff? Shouldn't good behavior be normal? What's so special about eating lunch? And how do you explain to these people the work that went into Joey learning to eat that lunch? The work and support that was invested in helping Joey be able to walk over to that restaurant, sit in the garden, and be able to focus on his food, bite it, eat it? How do you explain what a huge accomplishment this was?
Well, I've found you don't. You folks- well, the folks I know and who kindly comment on this blog- understand what this meant to us- to Joey, to Andy, to me. But for other people, who "just don't get it"? I've found the best thing to just let them know what a gorgeous day we had, and leave it at that. Leave out the hiccups, the small moments of impending trouble that were thwarted and salvaged, and just say, "What an amazing lunch we had. I really love taking my guys on trips." After all, this is perfect truth- and all the information they need or can handle.
But to you guys... look at how far my little buddies have come! I am so proud of them.
I am very proud of my boys (did you notice?). They say 'please' and 'thank you.' They can order their own food, and they eat what they order. They stay mostly in their seats, and when they do get up, they aren't disturbing other folks, they are looking at the birds and the plants in the garden. Joey tells the waitress how good his lunch is. Andy shows off his crayons.
It is one of those moments when, at the time, the idea of Joey being "disabled" is left aside, not even considered. That he is autistic is always present, but not really thought about, either. Joey is being Joey, Andy is being Andy, and we are having a lovely lunch together under the grapevines of the garden trellis. It is only now, two days gone, that it occurs to me:
Wow.
Joey is one of the hardest working people I know, and look at how far his work has taken him! Like other children, he learns to read and write and do math and that sort of thing. History and social studies is a weak point for him, hence the trips to Williamsburg and other living history exhibits and museums. But he has also had to learn how to speak. He has had to learn how to self-regulate in sensory-rich environments. He has had to learn to interact appropriately with strangers. Things that other kids pick up on as they grow up and experience the world, Joey has had to be taught, has had to learn just as other kids learn reading, math, or science- with lessons, with experiments, with carefully constructed experiences and situations and controlled responses. He's had to practice skills that other kids seem to "just know" (which means they were taught at a younger age, or could use and synthesize models of behavior they observed on their own).
And the results of all that work? A lovely lunch in the garden of the King's Arms Tavern.
Most people I would say this to would reply, "well, sure" and give it no more thought. Or they would look at me funny, because don't all kids have to learn this stuff? Shouldn't good behavior be normal? What's so special about eating lunch? And how do you explain to these people the work that went into Joey learning to eat that lunch? The work and support that was invested in helping Joey be able to walk over to that restaurant, sit in the garden, and be able to focus on his food, bite it, eat it? How do you explain what a huge accomplishment this was?
Well, I've found you don't. You folks- well, the folks I know and who kindly comment on this blog- understand what this meant to us- to Joey, to Andy, to me. But for other people, who "just don't get it"? I've found the best thing to just let them know what a gorgeous day we had, and leave it at that. Leave out the hiccups, the small moments of impending trouble that were thwarted and salvaged, and just say, "What an amazing lunch we had. I really love taking my guys on trips." After all, this is perfect truth- and all the information they need or can handle.
But to you guys... look at how far my little buddies have come! I am so proud of them.
Wednesday, July 09, 2008
Tuesday, July 08, 2008
Jamestown Rocks
So we went for a big adventure today: Williamsburg. And I decided to spice things up by adding Jamestown to the trip.
We did great. We got down to Williamsburg and found the reinactment in full swing, which meant all the main ways into Duke of Gloucester Street were closed (you're supposed to buy a ticket to watch the programs). However, you can still slip through some of the back gardens and get there, so we did get gingerbread cakes. It was still a bit early to go to lunch (the taverns open at 11:30), and the guys were hot and tired, so I decided to run them over to McD's instead, then head down to Jamestown.
I got so lost, we ended up back where we started, 20 minutes later. So I parked the car (in the exact same parking space) and we had lunch at the King's Arms. Much yummier than McD's.
Then off to Jamestowne! The Jamestown Settlement is the new museum down there, and it kicks ass and takes names. You walk in and its like you're in the forest with the Powatan. They have reconstructed a 17th century English street, a Native American village, and early American homes. They have short films throughout on things like sailing to the Americas, trade and shipping, slavery and the gold trade, etc. etc. etc. It totally rocks. Then you go outside.
Outside they have full re-creation of a Powatan village, Fort James, and three period ships to go on and explore, all with folks in costume doing things and talking about it. they also have a boardwalk about the marshland and why the colonists decided to stay there (in case you didn't know, Jamestown is in a swamp. Williamsburg is a little farther inland, but still surrounded by swamp.) We didn't get to see all of it, partly because we were dying of the heat, and partly because they had to shut down the outside because of a huge thunderstorm. It was done very professionally, and they got everyone into the building before the storm hit. All the living history people then set up inside, and continued to do their thing! How cool is that?
We did get to climb all over one of the boats, which the boys just thought was great because it was obviously Captain Hook's pirate ship. They had the costumed guys in hysterics, racing around saying "I'm Peter Pan!" "I'm Captain Hook!" and pretending to be dancing, singing pirates. Yes, indeed. Them's my boys.
We did great. We got down to Williamsburg and found the reinactment in full swing, which meant all the main ways into Duke of Gloucester Street were closed (you're supposed to buy a ticket to watch the programs). However, you can still slip through some of the back gardens and get there, so we did get gingerbread cakes. It was still a bit early to go to lunch (the taverns open at 11:30), and the guys were hot and tired, so I decided to run them over to McD's instead, then head down to Jamestown.
I got so lost, we ended up back where we started, 20 minutes later. So I parked the car (in the exact same parking space) and we had lunch at the King's Arms. Much yummier than McD's.
Then off to Jamestowne! The Jamestown Settlement is the new museum down there, and it kicks ass and takes names. You walk in and its like you're in the forest with the Powatan. They have reconstructed a 17th century English street, a Native American village, and early American homes. They have short films throughout on things like sailing to the Americas, trade and shipping, slavery and the gold trade, etc. etc. etc. It totally rocks. Then you go outside.
Outside they have full re-creation of a Powatan village, Fort James, and three period ships to go on and explore, all with folks in costume doing things and talking about it. they also have a boardwalk about the marshland and why the colonists decided to stay there (in case you didn't know, Jamestown is in a swamp. Williamsburg is a little farther inland, but still surrounded by swamp.) We didn't get to see all of it, partly because we were dying of the heat, and partly because they had to shut down the outside because of a huge thunderstorm. It was done very professionally, and they got everyone into the building before the storm hit. All the living history people then set up inside, and continued to do their thing! How cool is that?
We did get to climb all over one of the boats, which the boys just thought was great because it was obviously Captain Hook's pirate ship. They had the costumed guys in hysterics, racing around saying "I'm Peter Pan!" "I'm Captain Hook!" and pretending to be dancing, singing pirates. Yes, indeed. Them's my boys.
Monday, July 07, 2008
Bugs bugs bugs
I am constantly in search of activities in our area. JoeyAndyDad and I have decided we could make a mint with about twenty acres anywhere in a 10 mile radius of Fredericksburg, because there is actually little within that striking distance. There is no petting zoo, no DinosaurLand-esque parks, no child-friendly museums. I put in some fiberglass models, a few goats with a feeding machine, a small child-friendly museum, charge two bucks, and call it income.
So I was delighted to find The Bug Box. This is a small insect museum/nature center right at Four Mile Fork, which means within our beaten path. We haven't been before because it is only open on weekdays, and up to now, weekdays have been very, very full. It costs $2 per person, and inside is a nice, small collection of interesting live insects, turtles, lizards, frogs, and even a snake. Additionally, the walls are covered in beautiful collections of insects and butterflies mounted for display. In the back is a small discovery room, which though doesn't offer that much in materials, does offer a place for everybody to sit and some bug-related things to look at. There's even a small restroom. Perfecto.
The boys loved it. There were two red-eared turtles they could have watched all afternoon. They both raced around with magnifying glasses, looking at the bugs and lizards and laughing and pointing (well, Andy did the pointing- Joey still doesn't do the joint attention thing that well) and generally enjoying themselves.
Stimey: I recommend the next time you want ants, just get a small fish tank for them. It seemed to be working beautifully for the Bug Box.
So we now have a new rainy-day haven, right here in town, for long afternoons. Now I just need somewhere to go on weekends...
As an aside, this is my Five Hundredth Post. Happy BlogDay to Life With Joey! Oh, and there's new pics of the garden.
So I was delighted to find The Bug Box. This is a small insect museum/nature center right at Four Mile Fork, which means within our beaten path. We haven't been before because it is only open on weekdays, and up to now, weekdays have been very, very full. It costs $2 per person, and inside is a nice, small collection of interesting live insects, turtles, lizards, frogs, and even a snake. Additionally, the walls are covered in beautiful collections of insects and butterflies mounted for display. In the back is a small discovery room, which though doesn't offer that much in materials, does offer a place for everybody to sit and some bug-related things to look at. There's even a small restroom. Perfecto.
The boys loved it. There were two red-eared turtles they could have watched all afternoon. They both raced around with magnifying glasses, looking at the bugs and lizards and laughing and pointing (well, Andy did the pointing- Joey still doesn't do the joint attention thing that well) and generally enjoying themselves.
Stimey: I recommend the next time you want ants, just get a small fish tank for them. It seemed to be working beautifully for the Bug Box.
So we now have a new rainy-day haven, right here in town, for long afternoons. Now I just need somewhere to go on weekends...
As an aside, this is my Five Hundredth Post. Happy BlogDay to Life With Joey! Oh, and there's new pics of the garden.
Sunday, July 06, 2008
Are We There Yet?
We have begun a new campaign- if the guys are good the whole day, they get a sticker; if they collect 21 stickers in a month, they get to go to Chuck E. Cheese. I'll let you know how it goes, as it started today. We had the grand start by showing them they got a sticker for each day this week already, and talked about what we did each day and the good things they did to earn their sticker. I will be refining this program this week to give them a specific task to work on, such as "no whining", "no hitting" and "more sharing" (translate the "no" to "less"). They are given three warnings through the day. Like I said- I'll keep you informed.
Most kids, when bored with a trip, begin the chorus of "Are we there yet? Are we there yet? Are we there yet?" Joey has discovered a fun variation: "Where are we going? Where are we going? Where are we going?" This is a question, so he would get praise for asking, reinforcing the behavior. It is a question he can handle better, because it begins with a "cue word" (Where?) Besides, the question apparently sounds cool, so perseveration kicks in. He knows perfectly well where we are going, just as other kids know perfectly well that you are not there yet.
"Where are we going?" he pipes up behind me. We have just left the driveway. The car has been on all of thirty seconds.
"We are going to church," I answer with my I'm-Being-Patient Mommy Voice. We could probably walk, but the clammy day and Joey's cough speak against the plan; driving the six blocks it is. There is no backing out. Our Sunday school teacher is on vacation, and I volunteered to teach this week, and I'm by myself. I put the car in drive.
"Where are we going?" he asks again and sighs.
"Church," I repeat. "We have Sunday School today, remember?"
"Where are we going, Mommy?" the other little voice chimes in.
"Chuck E. Cheese!" Joey replies joyfully. They both cheer.
"You haven't earned enough stickers to go to Chuck E. Cheese yet, guys," I remind them. "Let's work hard and earn our stickers..."
"Then go to Chuck E. Cheese!" they cheer together.
This may be a long day.
I've never taught Sunday School before, but it seems OK. I have six kids (summer is here), used to running a bit wild for the hour. We do some singing, then look at the little books we're supposed to read, ad do some coloring. I get some of them to make a paper-plate fish. Time is winding down, and Joey turns to me with a big grin.
"Going to Chuck E. Cheese now?" No, dear. Not today.
The church parking lot is a madhouse, coming and going. The folks from the pervious service are trying to get out, and the folks from the next service are vying for those parking spots. I plead for quiet while I try to concentrate on driving and not hitting anyone- while not being made into a bumper car ourselves. Joey is chanting one of his usual perserveration phrases, "anseeDAdeeanseeDAdeeanseeDAdee..."
"Please be quiet so I can focus on the road," I plead again.
"AnseeDAdeeanseeDAdee..." I need to take a lesson from Maddy and get some earplugs. We narrowly miss being hit by a LandRover.
"Mommy! MOMMY! MOOOOOOMMMMEEEEEEEEE!!!!!!" Andy squeals suddenly.
"Yes, dear?" I try to hold on to my temper as we avoid a silver Cadillac.
"I'm bein' quiet! I get sticker! I go Chuck E. Cheese!"
Yes. And we haven't even eaten lunch yet.
Most kids, when bored with a trip, begin the chorus of "Are we there yet? Are we there yet? Are we there yet?" Joey has discovered a fun variation: "Where are we going? Where are we going? Where are we going?" This is a question, so he would get praise for asking, reinforcing the behavior. It is a question he can handle better, because it begins with a "cue word" (Where?) Besides, the question apparently sounds cool, so perseveration kicks in. He knows perfectly well where we are going, just as other kids know perfectly well that you are not there yet.
"Where are we going?" he pipes up behind me. We have just left the driveway. The car has been on all of thirty seconds.
"We are going to church," I answer with my I'm-Being-Patient Mommy Voice. We could probably walk, but the clammy day and Joey's cough speak against the plan; driving the six blocks it is. There is no backing out. Our Sunday school teacher is on vacation, and I volunteered to teach this week, and I'm by myself. I put the car in drive.
"Where are we going?" he asks again and sighs.
"Church," I repeat. "We have Sunday School today, remember?"
"Where are we going, Mommy?" the other little voice chimes in.
"Chuck E. Cheese!" Joey replies joyfully. They both cheer.
"You haven't earned enough stickers to go to Chuck E. Cheese yet, guys," I remind them. "Let's work hard and earn our stickers..."
"Then go to Chuck E. Cheese!" they cheer together.
This may be a long day.
I've never taught Sunday School before, but it seems OK. I have six kids (summer is here), used to running a bit wild for the hour. We do some singing, then look at the little books we're supposed to read, ad do some coloring. I get some of them to make a paper-plate fish. Time is winding down, and Joey turns to me with a big grin.
"Going to Chuck E. Cheese now?" No, dear. Not today.
The church parking lot is a madhouse, coming and going. The folks from the pervious service are trying to get out, and the folks from the next service are vying for those parking spots. I plead for quiet while I try to concentrate on driving and not hitting anyone- while not being made into a bumper car ourselves. Joey is chanting one of his usual perserveration phrases, "anseeDAdeeanseeDAdeeanseeDAdee..."
"Please be quiet so I can focus on the road," I plead again.
"AnseeDAdeeanseeDAdee..." I need to take a lesson from Maddy and get some earplugs. We narrowly miss being hit by a LandRover.
"Mommy! MOMMY! MOOOOOOMMMMEEEEEEEEE!!!!!!" Andy squeals suddenly.
"Yes, dear?" I try to hold on to my temper as we avoid a silver Cadillac.
"I'm bein' quiet! I get sticker! I go Chuck E. Cheese!"
Yes. And we haven't even eaten lunch yet.
Saturday, July 05, 2008
Annual Boy Torture
Yes, we have lived through another Fourth, and we've done it with style.
We ran over to Ferry Farm for their celebrations, and it was really well done. George Washington spent his childhood on Ferry Farm, which is just across the river here. I was very pleased. The had a tent with a little band going, talking about music history of the area. They had lots of folks in costume to see and talk to. They had weavers, a tent setup to use quills with lemon juice (then go get your "invisible ink" ironed and see what you wrote!), a cooking area, a juggler, and a native American tradesman showing pelts. They had some other tents with costumed people, but we didn't get to them- some were out by where they think they've found the house, and there were cannon demonstrations out there- not a chance of us headed out there. They also had a pavilion with crafts for kids, and facepainting (Joey had himself done as a clown; Andy wasn't interested). Behind that they had all sorts of games set up, and a parachute, and some folks teaching kids how to juggle. They had a couple of food stands, and an ice cream stand. All in all, very nice, and plenty of shade, so a good time had by all. The only problem we had was the dogs- dogs are allowed at Ferry Farm, and folks brought them. Joey is terrified of dogs. We did have a few minutes of "perfect storm" sensory issues (broken comfort toy, just as the cannon went off, just as a big dog walked by) and subsequent meltdown, but we found a quiet spot to calm down, and cheered up when we saw a friend from church.
Andy charmed the juggling lady, Joey learned to bowl, and so we had a fun-filled day at Ferry Farm.
Then we headed out to Grandma's for continued festivities- including the much-anticipated fireworks. The boys had picked out fireworks when we were buying them. We always get them from the Knights of Columbus, who do a lot of good stuff around here. Most anticipated was the new jack-o-lantern firework, which did not disappoint.
There was a huge thunderstorm first. We had the slide up and running when it blew up, but since the boys were pretty tired, having them sit down instead of running about and sliding was probably a good thing. So after a relaxing evening of Boy Videos, duck-duck-goose, and fruit salad, we settled in for the display.
Joey loves fireworks. Yes, he holds his ears, but then, so do I- I hate those whistles. The sparkles and glitter of the sparks really gets him excited, and he cheered and clapped and had a great time. Poor Andy, however... Fourth of July is our annual Torture the Boy Event. He had forgotten how loud fireworks are, so he was all excited, only to have the second firework start popping and whistling, much to his terror. He managed to make it through the show only because Mommy promised to clamp her hands over his ears and sides of his head, while he sat in her lap. The bad news was I didn't get many pictures- its hard to work a camera and hold a child's ears at the same time. The good news is I got to actually watch the fireworks. We only had two we wouldn't buy again- Earthquake The Big One and Laser Dragon. Unicorn Fountain was really nice, and the jack-o-lanterns were the stars of the show.
It was nearly eleven before we got the boys in bed. Naturally, we got some extra minutes to sleep this morning. But not many.
Happy Fourth of July.
We ran over to Ferry Farm for their celebrations, and it was really well done. George Washington spent his childhood on Ferry Farm, which is just across the river here. I was very pleased. The had a tent with a little band going, talking about music history of the area. They had lots of folks in costume to see and talk to. They had weavers, a tent setup to use quills with lemon juice (then go get your "invisible ink" ironed and see what you wrote!), a cooking area, a juggler, and a native American tradesman showing pelts. They had some other tents with costumed people, but we didn't get to them- some were out by where they think they've found the house, and there were cannon demonstrations out there- not a chance of us headed out there. They also had a pavilion with crafts for kids, and facepainting (Joey had himself done as a clown; Andy wasn't interested). Behind that they had all sorts of games set up, and a parachute, and some folks teaching kids how to juggle. They had a couple of food stands, and an ice cream stand. All in all, very nice, and plenty of shade, so a good time had by all. The only problem we had was the dogs- dogs are allowed at Ferry Farm, and folks brought them. Joey is terrified of dogs. We did have a few minutes of "perfect storm" sensory issues (broken comfort toy, just as the cannon went off, just as a big dog walked by) and subsequent meltdown, but we found a quiet spot to calm down, and cheered up when we saw a friend from church.
Andy charmed the juggling lady, Joey learned to bowl, and so we had a fun-filled day at Ferry Farm.
Then we headed out to Grandma's for continued festivities- including the much-anticipated fireworks. The boys had picked out fireworks when we were buying them. We always get them from the Knights of Columbus, who do a lot of good stuff around here. Most anticipated was the new jack-o-lantern firework, which did not disappoint.
There was a huge thunderstorm first. We had the slide up and running when it blew up, but since the boys were pretty tired, having them sit down instead of running about and sliding was probably a good thing. So after a relaxing evening of Boy Videos, duck-duck-goose, and fruit salad, we settled in for the display.
Joey loves fireworks. Yes, he holds his ears, but then, so do I- I hate those whistles. The sparkles and glitter of the sparks really gets him excited, and he cheered and clapped and had a great time. Poor Andy, however... Fourth of July is our annual Torture the Boy Event. He had forgotten how loud fireworks are, so he was all excited, only to have the second firework start popping and whistling, much to his terror. He managed to make it through the show only because Mommy promised to clamp her hands over his ears and sides of his head, while he sat in her lap. The bad news was I didn't get many pictures- its hard to work a camera and hold a child's ears at the same time. The good news is I got to actually watch the fireworks. We only had two we wouldn't buy again- Earthquake The Big One and Laser Dragon. Unicorn Fountain was really nice, and the jack-o-lanterns were the stars of the show.
It was nearly eleven before we got the boys in bed. Naturally, we got some extra minutes to sleep this morning. But not many.
Happy Fourth of July.
Thursday, July 03, 2008
Toys I wish were still made
I've been wandering through the toy aisles again. We live in a sea of toys, but as the boys are getting older, it is starting to be time to start combing through the ocean and sorting out seashells we just don't need or play with anymore. The point is to thin the tide, so that we can be awash with a whole new wave of toys.
Most toys out there don't look like much fun to me. I mean, there are lots of the toys that you thought were cool for ten minutes at a friend's house, but not really, super fun, hours of playing kinds of toys. Toys seemed designed to play with one way, and that's how you play with them, no imagination required. The whole world is expected to simply memorize episodes of TV shows designed to sell toys. Except that the shows Joey like to repeat like that, they aren't marketing right now (such as Magic School Bus, Franklin or Little Bear), or never did (ie, Oobi).
Another problem is inappropriate themes and designs. My kid doesn't need to be playing with stuff covered in Harley-Davidson tattoo themes. The attitudes in the designs seem meaner, harsher, harder. Pirates and dinosaurs and jungle animals aren't enough to just be these things, they have to look tough and mean. Why? My kid is six. A lion should look majestic, powerful, noble... but why make it look mean?
If I had my druthers, I would bring back toys that I played with, hours and hours on end, so my boys could really enjoy them and get those ever-needed creative playskills. Here are a few:
Fisher Price Little People, Old Style. The new style are so specific, they're no fun. Also, they are all little kids. The old style stiff was a little more abstract, and included lots of grown-ups, so you could play lots of different things with them. The new figures hold things like tools, frogs, books, etc; the old style ones didn't even have arms, o you could pretend they were holding whatever you needed them to. What's with the move to less abstraction in toys? Abstraction allows the mind to fill in the details.
Fisher Price Adventure People. I have been looking at action figures, and I find them totally inappropriate for children. They muscle-bound hulk-bodies are not just stupid-looking and ugly, they aren't any fun. Besides, I think making the world seem like it is full of pro wrestlers is not appropriate for children. Adventure people looked like people. Normal people. People you saw around you. That made them fabulous for everything from dollhouse families to jungle-rescue make-believe to... anything. Get those old molds out, Fisher Price, and bring us toys that are actually appropriate for kids!
Old-Style Star Wars Figures. See Adventure People. The new figures have the same problem. Crack out those old molds, those older designs were great for really playing. Luke and Leia aren't body-builders.
The Ginghams. As a kid, I just loved paper dolls. I had several sets. I also loved Sugar And Spice paper dolls, and had a great set of international costumes. paper dolls made today don't seem to be made to be played with, just looked at. 
But the Ginghams were the best. They had playsets you could get, and furniture, and they were pretty easy to cut out. I just adored them. They were simple enough to make up your own play. Of course, i also adored Holly Hobbie, which was certainly part of the attraction. Still, they weren't wildly funny-looking, and were not over-elegant. They were playable paper dolls.
Fashion plates. They have some similar products out now, but the original plates were by far the best. You mixed and matched the figures to make the outfits, then did the rubbings, then turned the plates over and they had patterns on the back for rubbing over the pictures. I spent hours creating "magazines." Days, even.
Color forms playsets. No, I mean lots of them. Lots of selection to charm your kid. We need Little Bear ones, Franklin ones, not just Dora and the Bacjyardigans (shows that don't charm my kids at all... but if they charm yours, go get the colorforms sets!)... ones with lots of small pieces and stuff, like the old Holly Hobbie sets had, or the old Snoopy sets. I even recommend those older sets. Bring them back. They'll sell. Why? Because they were fun. They were quiet. They were something you could take with you in the car or to grandma's, without taking any batteries. The new sets don't have the little detail pieces, the freer settings.
I know it is hard to find simple, big buckets of legos these days, but they are still made. Its harder and harder to find large, plain wood blocks, but hey are out there. So let's bring back some of these old classics. They were fun... enough so that I still remember them, and miss not being able to give new sets to the kids in my life. I know they'd just love them as much as I did.
Most toys out there don't look like much fun to me. I mean, there are lots of the toys that you thought were cool for ten minutes at a friend's house, but not really, super fun, hours of playing kinds of toys. Toys seemed designed to play with one way, and that's how you play with them, no imagination required. The whole world is expected to simply memorize episodes of TV shows designed to sell toys. Except that the shows Joey like to repeat like that, they aren't marketing right now (such as Magic School Bus, Franklin or Little Bear), or never did (ie, Oobi).
Another problem is inappropriate themes and designs. My kid doesn't need to be playing with stuff covered in Harley-Davidson tattoo themes. The attitudes in the designs seem meaner, harsher, harder. Pirates and dinosaurs and jungle animals aren't enough to just be these things, they have to look tough and mean. Why? My kid is six. A lion should look majestic, powerful, noble... but why make it look mean?
If I had my druthers, I would bring back toys that I played with, hours and hours on end, so my boys could really enjoy them and get those ever-needed creative playskills. Here are a few:
Fisher Price Little People, Old Style. The new style are so specific, they're no fun. Also, they are all little kids. The old style stiff was a little more abstract, and included lots of grown-ups, so you could play lots of different things with them. The new figures hold things like tools, frogs, books, etc; the old style ones didn't even have arms, o you could pretend they were holding whatever you needed them to. What's with the move to less abstraction in toys? Abstraction allows the mind to fill in the details. 
Fisher Price Adventure People. I have been looking at action figures, and I find them totally inappropriate for children. They muscle-bound hulk-bodies are not just stupid-looking and ugly, they aren't any fun. Besides, I think making the world seem like it is full of pro wrestlers is not appropriate for children. Adventure people looked like people. Normal people. People you saw around you. That made them fabulous for everything from dollhouse families to jungle-rescue make-believe to... anything. Get those old molds out, Fisher Price, and bring us toys that are actually appropriate for kids! 
Old-Style Star Wars Figures. See Adventure People. The new figures have the same problem. Crack out those old molds, those older designs were great for really playing. Luke and Leia aren't body-builders. 
The Ginghams. As a kid, I just loved paper dolls. I had several sets. I also loved Sugar And Spice paper dolls, and had a great set of international costumes. paper dolls made today don't seem to be made to be played with, just looked at. 
But the Ginghams were the best. They had playsets you could get, and furniture, and they were pretty easy to cut out. I just adored them. They were simple enough to make up your own play. Of course, i also adored Holly Hobbie, which was certainly part of the attraction. Still, they weren't wildly funny-looking, and were not over-elegant. They were playable paper dolls. 
Fashion plates. They have some similar products out now, but the original plates were by far the best. You mixed and matched the figures to make the outfits, then did the rubbings, then turned the plates over and they had patterns on the back for rubbing over the pictures. I spent hours creating "magazines." Days, even. 
Color forms playsets. No, I mean lots of them. Lots of selection to charm your kid. We need Little Bear ones, Franklin ones, not just Dora and the Bacjyardigans (shows that don't charm my kids at all... but if they charm yours, go get the colorforms sets!)... ones with lots of small pieces and stuff, like the old Holly Hobbie sets had, or the old Snoopy sets. I even recommend those older sets. Bring them back. They'll sell. Why? Because they were fun. They were quiet. They were something you could take with you in the car or to grandma's, without taking any batteries. The new sets don't have the little detail pieces, the freer settings. I know it is hard to find simple, big buckets of legos these days, but they are still made. Its harder and harder to find large, plain wood blocks, but hey are out there. So let's bring back some of these old classics. They were fun... enough so that I still remember them, and miss not being able to give new sets to the kids in my life. I know they'd just love them as much as I did.
Wednesday, July 02, 2008
Sunday, June 29, 2008
Vacation Bible School: All Done
So overall, I would call VBS a success. The boys learned some new songs, and new dances, and got to play with lots of crafts and art stuff, and they seemed really happy about going. The folks who organized and ran the program did a great job. The Marketplace was gorgeous, and there was plenty for everybody to do, and try, and discover!Our last day included a visit from a real goat, and we could try goat milk and goat cheese. Joey really loved that. Andy talked about meeting the goat, too. Joey finished his basket, and he was so proud of himself. He also made another necklace, and got to go fishing with a big bamboo pole (the fishing guy was sticking aluminum fish on clothespins on the ends. The kids were thrilled.)
We wrapped up today by singing some of the songs we learned- with signs- for the whole congregation. Joey was so excited to be able to show off. Andy wasn't so excited, but did a good job. They were both cute as buttons.
Saturday, June 28, 2008
Boys at the Movies
So it's summertime, and that means Hollywood owes us some family fare. Blockbuster, kid-friendly, crowd-pleasing popcorn movies. I took the boys, sans Joeymom, to Kung Fu Panda a couple of weeks ago, and Wall-E today.
I guess it's worth mentioning three summers ago, when Joey was between his first and second years of preschool, one of the few summer activities the school did was to host a movie event in the school auditorium. I forget the movie now, and while it was decidedly low-tech, it was a nice test to see if Joey could sit still and pay attention to something for more than a few minutes. Well, Joey being three and autistic, he failed miserably. It was dark. The movie didn't interest him. He and his brother ran wild throughout the non-crowded auditorium. We had to bail after only a few minutes. Joey has come a long way in dark, crowded settings.
So with that in mind, we ventured to Kung Fu Panda. I was a bit concerned with its PG rating. In the ads, Dreamworks' animation looked gorgeous, and it was. But the guys watch the dino documentaries, what with T-Rexes eating their bloody prey and all, so how bad could it be?
Well, Andy lasted about 10 minutes into Kung Fu Panda before crying. Great sobbing wails of 'That's scary.' So we came home. For the record, while there was really no violence at the point where Andy lost it, it was an intense scene of non-violent conflict.
So with reviews read, a G rating in tow, and two boys excited to see it, we trekked off to Wall-E. Well, this time, Andy did much better. It was still 'scary', but he was able to cope by sitting on me. We lasted an hour. The impulse for leaving wasn't any great crying fit, it was a combination of Andy's periodic 'I wanna go home' and a movie, apart from the endearing title character, that was more or less unlikeable.
This ain't your father's Pixar film. Like Ratatouille before it, Wall-E is a grown-up movie that's appropriate for children. Unlike immortal classics like the two Toy Story movies- with their themes of friendship, growing up, and staying true to one's self- and Finding Nemo with its examination of disability, parenthood, and fear, Wall-E is a less-than-subtle dig against consumerism and current environmental practices. Oh goodie. However you feel about those issues, they do not lend themselves to a fun, entertaining film. I eagerly await the 2009 blockbuster from Pixar, 'Capital Punishment, Abortion, and Child Abuse'.
Yes, the company that branded everything imaginable with Cars characters just two years ago, has taken a stand against consumerism. Indeed.
The good news is that Joey liked the movie. He sat in his seat or bounced on it the whole time. Andy lasted longer than before. But unfortunately, I was not sorry to bail on Wall-E early.
How does everyone else do at the movies?
Thursday, June 26, 2008
Myths of autism
Having Joey in Vacation Bible School is a bit of a challenge for my nerves. Not Joey himself; Challenges for ME. You know, my own issues. We all have them. I can see how different Joey is from kids his own age. That can be hard- not because it is a problem, but because I'm a human parent who wants my kid to be happy and have friends. It is also hard because so many folks come up to me, knowing Joey is autistic, and say weird things, like, "You've done great work! He's doing so well!" All I did was drive. Joey did the work part. "Are you sure he's autistic? He seems so normal!" Yes. Yes I am. Um... thanks? "Oh, normal kids do that, too." This is in response to things like having a small tantrum over losing a turn or signs of frustration from not understanding the rules of a game, or something like that. Yes, normal kids have tantrums; excuse me while I intervene before this becomes a meltdown.
They mean well. But they have preconceptions of what autistic people can and cannot do, and Joey isn't fitting those parameters. some of these preconceptions are spread by parents, therapists, and caregivers of autistic kids- and I have even seen some of them on sites written by autistic people.
1. Autistic people cannot lie. They need to stop by my house. Joey's IEP includes taking responsibility for his own actions, instead of trying to foist his misdeeds on someone else. ("Joey, did you just take that toy from Sally?" "No. Andy took it." Andy is no where to be found, and the toy is in Joey's hand, and I watched him take it from Sally...)
2. Autistic people are "uncompetitive." Oh, haha. Joey's latest perseveration is, "I win! I win first!" and "I'm a loser! I cannot win. I lost." Joey likes being good at things, and being better at things than other people- just like other kids.
3. Autistic people cannot be spiteful. Sure they can. Joey sometimes hides toys just so Andy won't have it. He picked this behavior up from Andy.
4. Autistic people cannot be social/they don't like people. There are still doctors in the world who will not diagnose a child as autistic because they are "too social." This is a bunch of baloney. Joey loves people, loves to participate, and is highly social. He may not have the skills to be successfully social, but he gives it the old college try every time.
5. Classically autistic people do not speak. If your child speaks, s/he actually has Asperger's Syndrome. People actually will change a child's diagnosis when they start speaking to Asperger's, as if that is the sole difference between "classic" autism and Asperger's Syndrome. Joey is verbal, but is "classically" autistic, not Asperger's. He remains severely communication-challenged. He has a lot of trouble answering questions or following a conversation. "Verbal" does not mean "not communication-disabled." I think parents don't fight the change because Asperger's is seen as a sort of "autism lite" that is more manageable; there is some psychological thing of "my kid is improving! He's no longer Autistic; he's Autistic Lite!" There are more success stories out there about people with Asperger's, as opposed to people with "classic" autism. The change in diagnosis is seen as a glimmer of hope for people who do not want to be "stuck" caring for their child for the rest of their lives.
As others of these myths rear their ugly heads en masse, I'll let you know. In the meantime, I'm still fighting the "autism is caused by bad parenting" myth and the "I shouldn't have to deal with your disabled kid in public" attitude. Don't like my kid learning to relate to public places? Don't like it that he needs to chew some gum in order to calm himself and navigate the store? Well, guess what: I hate the smell of coffee. I don't go about telling people with coffee breath to get out of my space, even though I find it disruptive and disgusting. Get a clue.
They mean well. But they have preconceptions of what autistic people can and cannot do, and Joey isn't fitting those parameters. some of these preconceptions are spread by parents, therapists, and caregivers of autistic kids- and I have even seen some of them on sites written by autistic people.
1. Autistic people cannot lie. They need to stop by my house. Joey's IEP includes taking responsibility for his own actions, instead of trying to foist his misdeeds on someone else. ("Joey, did you just take that toy from Sally?" "No. Andy took it." Andy is no where to be found, and the toy is in Joey's hand, and I watched him take it from Sally...)
2. Autistic people are "uncompetitive." Oh, haha. Joey's latest perseveration is, "I win! I win first!" and "I'm a loser! I cannot win. I lost." Joey likes being good at things, and being better at things than other people- just like other kids.
3. Autistic people cannot be spiteful. Sure they can. Joey sometimes hides toys just so Andy won't have it. He picked this behavior up from Andy.
4. Autistic people cannot be social/they don't like people. There are still doctors in the world who will not diagnose a child as autistic because they are "too social." This is a bunch of baloney. Joey loves people, loves to participate, and is highly social. He may not have the skills to be successfully social, but he gives it the old college try every time.
5. Classically autistic people do not speak. If your child speaks, s/he actually has Asperger's Syndrome. People actually will change a child's diagnosis when they start speaking to Asperger's, as if that is the sole difference between "classic" autism and Asperger's Syndrome. Joey is verbal, but is "classically" autistic, not Asperger's. He remains severely communication-challenged. He has a lot of trouble answering questions or following a conversation. "Verbal" does not mean "not communication-disabled." I think parents don't fight the change because Asperger's is seen as a sort of "autism lite" that is more manageable; there is some psychological thing of "my kid is improving! He's no longer Autistic; he's Autistic Lite!" There are more success stories out there about people with Asperger's, as opposed to people with "classic" autism. The change in diagnosis is seen as a glimmer of hope for people who do not want to be "stuck" caring for their child for the rest of their lives.
As others of these myths rear their ugly heads en masse, I'll let you know. In the meantime, I'm still fighting the "autism is caused by bad parenting" myth and the "I shouldn't have to deal with your disabled kid in public" attitude. Don't like my kid learning to relate to public places? Don't like it that he needs to chew some gum in order to calm himself and navigate the store? Well, guess what: I hate the smell of coffee. I don't go about telling people with coffee breath to get out of my space, even though I find it disruptive and disgusting. Get a clue.
Vacation Bible School: Day Four
This was an up-and-down day. I'm not feeling so good, and I think the boys are a bit titchy as well. Joey was very sensitive, and did a lot of "I'm not worthy." The re-emergence of "I'm not worthy" has been an interesting phenomenon. When Joey is very tired, and is just being peevish, instead of having a total meltdown, he now reverts to I'm Not Worthy. It actually has made life a little better- less total meltdowns, because I have this extra clue that one is impending and can intervene. Also, the I'm Not Worthy is not as dramatic as it used to be- the howling that comes with the head on the floor is less intense, and he doesn't smack his forehead on the floor, he just touches it and stays there. It only counts as a Level One if the howling is loud. It is more like a pre-tantrum.
The other thing is Joey has a lot more words to use to explain what the trigger is. He may not be able to tell us all the little irritations feeding into the problem- who can?- but he can give me clues to the current trigger. "I want another turn." "He's in my space." "I need help!" this is such a vast improvement from where we began! I am grateful to be able to intervene, and give Joey those much-needed calming hugs. It also reminded me why it was such a good idea for me to be in the tribe with him. Other mom wouldn't understand the need for fast intervention and deep pressure. More likely, he would have been put into time out or punished as being spoiled. Instead, I could step in, calm him, assure him that he would have another turn soon and talk about how other children need to play, have their turn, and have fun, too; that if another child is in his space or too close, it is OK for him to move; that he was doing great with his basket, and I'd be happy to tie on the next yarn color for him.
But I think we're all just off today. Something in the air I guess. Or just the long week. Or maybe we ate something yesterday not so good? Or the heat? I think a quiet afternoon is in order.
The other thing is Joey has a lot more words to use to explain what the trigger is. He may not be able to tell us all the little irritations feeding into the problem- who can?- but he can give me clues to the current trigger. "I want another turn." "He's in my space." "I need help!" this is such a vast improvement from where we began! I am grateful to be able to intervene, and give Joey those much-needed calming hugs. It also reminded me why it was such a good idea for me to be in the tribe with him. Other mom wouldn't understand the need for fast intervention and deep pressure. More likely, he would have been put into time out or punished as being spoiled. Instead, I could step in, calm him, assure him that he would have another turn soon and talk about how other children need to play, have their turn, and have fun, too; that if another child is in his space or too close, it is OK for him to move; that he was doing great with his basket, and I'd be happy to tie on the next yarn color for him.
But I think we're all just off today. Something in the air I guess. Or just the long week. Or maybe we ate something yesterday not so good? Or the heat? I think a quiet afternoon is in order.
Alex Barton: The District Investigation
The District investigation into the incident with Alex Barton now includes a statement from Alex Barton.
Why am I keeping up on this case? Isn't it cut-and-dry? What's the big deal? Aren't there other, more important, stories about people with autism to follow?
Although I said last time that I had stopped reading the editorial letters in the TCPalm because they made my blood pressure go up, that I couldn't stand the bald-faced ignorance and unadulterated hatred being revealed through the letters being written about the case, that they struck fear into my heart for Joey, there is also one thing more.
There but for the Grace of God go we.
Several of the letters and comments say the case has raised awareness, but then go on to say that Alex Barton was misbehaving, or that the situation was somehow the fault of Alex or his mother. That tells me that awareness hasn't been raised at all. Only shackles.
Several of the letters and comments say that Wendy Portillo and the school are not at fault because Alex should have been in a special class. This ignores the fact that children like Alex have a legal right to be in the least restrictive environment, that Wendy Portillo was left for months without appropriate training or support, and that Wendy Portillo could have gained valuable strategies for dealing with and understanding Alex with a simple Google search. A lot of information has become easily available via the internet in the last few years- even in just the little while I've been blogging. I'm adding valuable websites to my list for parents all the time (have a favorite info site? do send it along!). No effort was put forth to support Alex Barton in any way, by any of the school personnel who should have been supporting and protecting him.
The prevalence of these views is horrifying. We're not getting the word out. We're not getting that awareness raised. We have got to get out there and get in the faces of these people. Whatever you believe about autism, about its causes, about the strategies for dealing with autism, raising a child with autism, providing services for autistic people- folks, this case is just plain ugly. Get out there and tell people: this is not about bad parenting, and it is not about spoiled children, or children lacking obedience or respect.
Punishing a child does not take the autism away.
Why am I keeping up on this case? Isn't it cut-and-dry? What's the big deal? Aren't there other, more important, stories about people with autism to follow?
Although I said last time that I had stopped reading the editorial letters in the TCPalm because they made my blood pressure go up, that I couldn't stand the bald-faced ignorance and unadulterated hatred being revealed through the letters being written about the case, that they struck fear into my heart for Joey, there is also one thing more.
There but for the Grace of God go we.
Several of the letters and comments say the case has raised awareness, but then go on to say that Alex Barton was misbehaving, or that the situation was somehow the fault of Alex or his mother. That tells me that awareness hasn't been raised at all. Only shackles.
Several of the letters and comments say that Wendy Portillo and the school are not at fault because Alex should have been in a special class. This ignores the fact that children like Alex have a legal right to be in the least restrictive environment, that Wendy Portillo was left for months without appropriate training or support, and that Wendy Portillo could have gained valuable strategies for dealing with and understanding Alex with a simple Google search. A lot of information has become easily available via the internet in the last few years- even in just the little while I've been blogging. I'm adding valuable websites to my list for parents all the time (have a favorite info site? do send it along!). No effort was put forth to support Alex Barton in any way, by any of the school personnel who should have been supporting and protecting him.
The prevalence of these views is horrifying. We're not getting the word out. We're not getting that awareness raised. We have got to get out there and get in the faces of these people. Whatever you believe about autism, about its causes, about the strategies for dealing with autism, raising a child with autism, providing services for autistic people- folks, this case is just plain ugly. Get out there and tell people: this is not about bad parenting, and it is not about spoiled children, or children lacking obedience or respect.
Punishing a child does not take the autism away.
Wednesday, June 25, 2008
Vacation Bible School: Day Three
today was smoother than yesterday. I kept Joey's hands busy with making a clay lantern, then a basket. He is really into working on the yarn basket, which I found surprising. usually complicated fine motor tasks are very frustrating for him. We brought it home with some extra yarn, though I may have him work on it on Friday, when we might run out of crafts. Andy's class has given up on the Synagogue School part, the person running it just wasn't willing to alter her presentations to accommodate preschoolers. She let me know she's taking them outside instead, but since tomorrow will be so hot, she's planning on having them coloring and singing songs in small groups in the tribe room tomorrow.
So a deep breath. We're over halfway through.
So a deep breath. We're over halfway through.
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