Wow, I got tagged! I get to do a meme! You know, someday, I may not be excited about this... but today, woo-hoo!
The rules:
1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.
I was tagged by McEwen, the Goldfish Queen.
Now, for some random facts:
8 things that most people don’t know about me:
1. My grandmother was a pretty popular wildlife ("Duck Art") painter in the 1960's-1980's, Marie Conway. I have her paintings all over the house. The random fact is actually that I wish I could paint.
2. I have an ushnisha. An ushnisha is a cranial pertrubance on a Buddha. Originally in art, Buddhas were shown with their hair in a bun or tied up, to reference his life as prince. However, it later became simply an enlargement of his head. I have a very small one. I was born with it. My mom was told it was an "old wound." No, she did not have an amnio. I expect to be a Buddha in about 15 lifetimes. See you then!
3. My favorite beverage is Fresca. I really liked the fancy cherry Fresca, too, but they don't sell it around here anymore. My other favorite drink is Almond Smash. I don't think they make that anymore, either.
4. I can snap my toes.
5. I do not like dogs. I do not know why.
6. I like to do ballroom dancing. I was pretty good at it when I was in grad school. My brother taught me to waltz when we were young, and I was fascinated ever since, then finally took classes. The problem is, the only guy I really want to dance with doesn't like ballroom dancing.
7. I have a PhD in South Asian art history. Even I forget sometimes. One of the school admin people calls me "Dr." and I always turn and look around to see who else he is talking to. I think he finds this amusing. I actually have two master's degrees. I do some adjuncting, but I've been doing it for so long, that's not much of a reminder (you don't need a PhD to adjunct). I prefer teaching in person to online, but most of my classes are online because of the therapy schedule.
8. I am a Tolkien affectionada. Yes, we have the full set of the books Christopher Tolkien put out of Tolkien's notes and unfinished work. I like the Silmarillon better than the Lord of the Rings proper, though I usually just think of all of the books as a single narrative cycle. I like the movies, but hate what they did with Faramir, and the part where Frodo sends Sam away- both completely miss the point of the storylines. I could go on... and on... and on... I'd start a blog, but I'm sure there are plenty of Tolkien blogs out there already, and I already blog too much.
Who would I like to have 8 random facts about? Hmmmm...
abfh is a fascinating person who always comes up with observations about her own life and experience that give me some insights into possibilities for Joey's view of the world. I'd like to know more about her.
Club166. I know he's busy, but I'm sure he'll get to it when he gets a minute.
Evan. I always want to know more things about Evan. Besides, he'll come up with super-fascinating facts, even if he doesn't think they are.
Zoomy needs more to do while we mourn for the Bridge. Besides, he's such a sweetie!
Niksmom is a very interesting lady, and she has such a wonderful blog. I could just hug the stuffing out of Nik, he is so cute! (Edited because I just realized I mis-spelled "Nik". :P )
Stimey leaves lots of nice comments, so I want to know more about her, too.
Vab (Autista) also leaves lots of nice comments that have piqued my interest. Another nice blog, too.
Kristina (Autism Vox), as if she doesn't have enough to do and doesn't blog constantly (gotta love a blog that often has several posts every day to read! Thank you!).
I didn't hit up MonkeyGirl because she just did this one not that long ago. But I always find her interesting, too. ;)
And I should mention that I don't mind if people I tagged don't feel like doing this and don't. But do know you're being thought of. :)
Tuesday, July 10, 2007
Monday, July 09, 2007
Clams
In another big banner, get out the prize box, chocolates all-round, where's the champagne day (We're on a streak! Look out, world!) we have added a new food to the diet. I would not say that Joey is a complete neophobe like Whitterer's guys, but food is something of an issue. Let's just say I never intended to raise my kid on mac and cheese, chicken nuggets, and hot dogs, but we seem to eat an awful lot of them around here. And I should have bought stock in Pepperidge Farm. At any rate, adding a new food is big news around here.
The food is fried clams.
No idea why. I mean, I like fried clams. I like steamers, too, come to think of it. But of all the strange-texture, weirdo-foods to suddenly decide to eat... fried clams? What gives? But I'll take it. New food!!! Schwan's makes lovely fried clams that you actually can bake in the oven. WE also invest in Schwan's hot dogs, they are better than ANYTHING you can get in a grocery (a LOT less greasy). We don't have a Schwan delivery person in town, but they do stop at Mom's, so every other week I'm on the phone now... "Yes, Mom, we need a box of hot dogs, a box of quesadillas, a bag of potstickers..." and now I can add "and a box of clams!" (The quesadillas and the potstickers are for me. We haven't gotten the boys to brave those, yet).
Woo-hoo!!! What a week I'm having! May everyone have weeks like this!!!
The food is fried clams.
No idea why. I mean, I like fried clams. I like steamers, too, come to think of it. But of all the strange-texture, weirdo-foods to suddenly decide to eat... fried clams? What gives? But I'll take it. New food!!! Schwan's makes lovely fried clams that you actually can bake in the oven. WE also invest in Schwan's hot dogs, they are better than ANYTHING you can get in a grocery (a LOT less greasy). We don't have a Schwan delivery person in town, but they do stop at Mom's, so every other week I'm on the phone now... "Yes, Mom, we need a box of hot dogs, a box of quesadillas, a bag of potstickers..." and now I can add "and a box of clams!" (The quesadillas and the potstickers are for me. We haven't gotten the boys to brave those, yet).
Woo-hoo!!! What a week I'm having! May everyone have weeks like this!!!
Sunday, July 08, 2007
What Joey Did Today
We had a teaching moment today. Joey has been running out of doors, and today he managed to unlock Grandma's door and run outside. Fortunately, Grandma lives in the middle of nowhere, but in the house I grew up in, so he couldn't get too lost, even if he ran REALLY FAST- but he just wanted to go open and close the car doors. While he was wandering about, though, he managed to pull on Grandma's calla lily, and break it off. I found him slamming a car door with the stalk in his hand.
I managed to remain calm. After all, its just a plant, not a disaster, but I expressed my displeasure and dismay in the situation, and explained that he would have to go inside and explain to Grandma what he had done. Grandma made an excellent show of displeasure and disappointment, and we explained to him that breaking plants and touching other people's things and whatnot was wrong. We talked about the fact that Grandma had planted the plant, and was waiting all summer to see th eflower, and now she never would see it, because the plant was broken. We discussed the fact that when you break a plant, it dies, and can't flower or be green and pretty, but will instead get yellow and go away. We explained that saying sorry wasn't going to bring the plant back, and wasn't going to fix it, and that sorry meant that you wish you had not done something wrong. He seemed to get it- at least that we were upset, and he said he was "sorry about the plants." This was a pretty big jump, for him to at least connect the words to teh apology- he didn't just say "I'm sorry, Grandma" but "I'm sorry about the plants."
So, trying to pretend we weren't celebrating the advance in language use, we went home. There was more discussion about responsibility, and not switching to "Andy broke the plant", and how important it was for him to tell the truth and say that he broke the plant, and that sort of thing. He kept perseverating on the subject, so we kept working through it. Finally I got the music on (its also good not to dwell too long on such things, so that he will learn we still love him, and that no one is angry or upset forever), and we got home. Allan came down the stairs.
"Joey, tell Daddy what you did today," I said. I kept my tone even, because I didn't want to give him a huge prompt for what to say; we are tryign to teach him to self-narrate, and so far, we've washed out. Joey's usual response to this request, put in any fashion (What did you do today? How was school today? Where have you been this morning? Did you do anything fun today? etc) is to pretend we don't exist. Other requests, he'll at least turn his head or try to answer (even if the words that come out have nothing to do with what you asked), but this idea of constructing his own narrative completely shuts him down. Lately we've started to get some attempts at response, but mostly echoes and responses that have nothing to do with the past, with actions or activities, or anything vaguely resembling a response to the actual request. The closest we've been getting is "Joey's in the white car!" which is true, and kind of on topic, so we've been praising it.
"I went to see Grandma... " Joy! Jubiliation! Get out the champagne! Call the neighbors! Call Grandma! Chocolate and prize box for all! "...and I broke the plant. I'm sorry about the plant."
My son just told his father what he did today. He answered an open-ended question requesting narrative about past activities. He remembered he broke the plant, and told his father.
Holy frijoles!
I managed to remain calm. After all, its just a plant, not a disaster, but I expressed my displeasure and dismay in the situation, and explained that he would have to go inside and explain to Grandma what he had done. Grandma made an excellent show of displeasure and disappointment, and we explained to him that breaking plants and touching other people's things and whatnot was wrong. We talked about the fact that Grandma had planted the plant, and was waiting all summer to see th eflower, and now she never would see it, because the plant was broken. We discussed the fact that when you break a plant, it dies, and can't flower or be green and pretty, but will instead get yellow and go away. We explained that saying sorry wasn't going to bring the plant back, and wasn't going to fix it, and that sorry meant that you wish you had not done something wrong. He seemed to get it- at least that we were upset, and he said he was "sorry about the plants." This was a pretty big jump, for him to at least connect the words to teh apology- he didn't just say "I'm sorry, Grandma" but "I'm sorry about the plants."
So, trying to pretend we weren't celebrating the advance in language use, we went home. There was more discussion about responsibility, and not switching to "Andy broke the plant", and how important it was for him to tell the truth and say that he broke the plant, and that sort of thing. He kept perseverating on the subject, so we kept working through it. Finally I got the music on (its also good not to dwell too long on such things, so that he will learn we still love him, and that no one is angry or upset forever), and we got home. Allan came down the stairs.
"Joey, tell Daddy what you did today," I said. I kept my tone even, because I didn't want to give him a huge prompt for what to say; we are tryign to teach him to self-narrate, and so far, we've washed out. Joey's usual response to this request, put in any fashion (What did you do today? How was school today? Where have you been this morning? Did you do anything fun today? etc) is to pretend we don't exist. Other requests, he'll at least turn his head or try to answer (even if the words that come out have nothing to do with what you asked), but this idea of constructing his own narrative completely shuts him down. Lately we've started to get some attempts at response, but mostly echoes and responses that have nothing to do with the past, with actions or activities, or anything vaguely resembling a response to the actual request. The closest we've been getting is "Joey's in the white car!" which is true, and kind of on topic, so we've been praising it.
"I went to see Grandma... " Joy! Jubiliation! Get out the champagne! Call the neighbors! Call Grandma! Chocolate and prize box for all! "...and I broke the plant. I'm sorry about the plant."
My son just told his father what he did today. He answered an open-ended question requesting narrative about past activities. He remembered he broke the plant, and told his father.
Holy frijoles!
Friday, July 06, 2007
The Money Wars
Another article for your consideration: Who Pays for Special Ed?
Don't forget to peruse the comments. Unless you have high blood pressure, in which case I suggest you avoid them.
My thoughts: hurrah for this family, getting the services that is their child's right. No, let me say that again. They are his RIGHT. Just as my lovely little Andy has a right to a free, appropriate public education, so does my Joey. And so does Luke. Until people understand that letting a child rot is NOT appropriate in ANY circumstance, our entire society suffers. Until people who do not have special needs kids really understand what "special needs" means, and what education is about, there will be ignorant idiots who declare that paying for children such as Luke and Joey are a waste of money. And those ignorant idiots will continue to put up my blood pressure.
Don't forget to peruse the comments. Unless you have high blood pressure, in which case I suggest you avoid them.
My thoughts: hurrah for this family, getting the services that is their child's right. No, let me say that again. They are his RIGHT. Just as my lovely little Andy has a right to a free, appropriate public education, so does my Joey. And so does Luke. Until people understand that letting a child rot is NOT appropriate in ANY circumstance, our entire society suffers. Until people who do not have special needs kids really understand what "special needs" means, and what education is about, there will be ignorant idiots who declare that paying for children such as Luke and Joey are a waste of money. And those ignorant idiots will continue to put up my blood pressure.
Charms
I got a call from Joey's new summer teacher today. I was pleased to find her proactive enough to call and want to talk about Joey. I had made a powerpoint to use at his IEP meeting, and she had a copy of that, but wanted to be sure there was nothing else she should know. I mentioned a few things, like the ASL and that if he's having trouble, I need to know, and I was happy to answer questions or help. She seems like a very nice lady. She's training to be the future autism teacher in the lower elementary.
I joined a gym. Partly because for the price of preschool, I get the opportunity to hae 2 hours of childcare twice per day. That's four hours, whenever i want (and can use it). They also have a nice kid's pool with sprinklers and stuff. And Mom is buying it for me, because she's a cool Grandma like that. It's been a big hit. Joey and Andy have been having a ball while I get some exercise in, and then splashing the pool together. Since I go in the morning, and they have lots of adults to help with the kids, the kid room has kind of "assigned" a staff member to stick with and shadow Joey, and that has worked out beautifully- and wthout me really requesting it (I just warned them that he is autistic.) He's been loving it there. But I had to tel them that he was going back to school, and they at least acted very sad.
That is one of Joey's great strengths- he charms the people who work with him. As my Mom always says, "Joey loves the world and the world loves Joey!" I have rarely met children who exude that whole outlook the way Joey does. Joey loves living, being with people, doing and being and laughing. Everyone is his friend, and it is hard to prove otherwise. I know that eventually this may be a problem, but right now, it is a whole way of being that makes people want to help him, want to know him, want to listen to what he has to say and share and be. I will be very, very sad when he discovers he can't go through life that way. He should be able to, it should be the way the world is... but it isn't.
People remember Joey. They ask abotu Joey. They want to know Joey and see Joey and be with Joey. I've seen him charm the governor of Virginia. I'm seen him charm his teachers, his therapists, even the grumpy Sunday school teacher. He has charmed the entire Saturday church service. I think it must be because people do wish the world was like this. It is so much more pleasant when the world is full of friendly faces.
I joined a gym. Partly because for the price of preschool, I get the opportunity to hae 2 hours of childcare twice per day. That's four hours, whenever i want (and can use it). They also have a nice kid's pool with sprinklers and stuff. And Mom is buying it for me, because she's a cool Grandma like that. It's been a big hit. Joey and Andy have been having a ball while I get some exercise in, and then splashing the pool together. Since I go in the morning, and they have lots of adults to help with the kids, the kid room has kind of "assigned" a staff member to stick with and shadow Joey, and that has worked out beautifully- and wthout me really requesting it (I just warned them that he is autistic.) He's been loving it there. But I had to tel them that he was going back to school, and they at least acted very sad.
That is one of Joey's great strengths- he charms the people who work with him. As my Mom always says, "Joey loves the world and the world loves Joey!" I have rarely met children who exude that whole outlook the way Joey does. Joey loves living, being with people, doing and being and laughing. Everyone is his friend, and it is hard to prove otherwise. I know that eventually this may be a problem, but right now, it is a whole way of being that makes people want to help him, want to know him, want to listen to what he has to say and share and be. I will be very, very sad when he discovers he can't go through life that way. He should be able to, it should be the way the world is... but it isn't.
People remember Joey. They ask abotu Joey. They want to know Joey and see Joey and be with Joey. I've seen him charm the governor of Virginia. I'm seen him charm his teachers, his therapists, even the grumpy Sunday school teacher. He has charmed the entire Saturday church service. I think it must be because people do wish the world was like this. It is so much more pleasant when the world is full of friendly faces.
Wednesday, July 04, 2007
Happy July Fourth. Part 2
It is Fourth of July- and that means FIREWORKS! My boys love to watch fireworks, and talk abotu fireworks- but not listen to fireworks. Whistles and pops are not their friends. Joey spent mostof teh display with his fingers on his ears. Andy started with fingers, then tried jamming green cherry tomatoes in them, and finally hid under Grandma's chair. But would he go inside or sit on Mom's lap? NosireeBob, he wanted to see his fireworks!
Although Andy is considered "NT"- he is not autistic- he does have sensory integration dysfunction. This is not considered a disabling condition, but it seems to me that many of the "problems" we see in Joey we also see in Andy, because the cause is a problem with sensory issues. So though I don't have two autistic children, it sure can sometimes look like I do. When both kids are telling me "too loud, Mommy!" and the NT one is the one under the chair... well, it makes for an interesting Fourth of July.
Happy July Fourth
Just some thoughts on freedom...
I am free to take my autistic child into public. I can teach him hands-on how to deal with social situations, different lighting, and public spaces.
I am free to hug my boys tight. And smooch them. And poke their tummies. And tell them I love them.
I am free to get my children medical treatment wherever I want. I might have to pay for it, but I am free to do it.
I am free to drink a beer in front of my kids in my own back yard.
I am free to feed my kids healthy food and clean water.
I am free to speak and educate people who come up to me and complain about my child's behavior. I am free to discuss autism. I am free to discuss sesnory integration disorder. I am free to tell them to shut up and leave me alone.
I am free to take my children to Church. I can even go twice a week and let Joey listen to the music on Saturdays. I am free choose the church, temple, spiritual circle, or other religion and religious area or group in which my child will be raised to understand God. Or no religion at all, if I so wish. I am even free to visit religious structures and groups other than the one I belong to.
I am free to blog about my children, my life, autism, sensory integration disorder, or anything else that is on my mind.
I am free to buy milk, or anything else I need, on Sunday.
I am free to telephone my friends, from my own livingroom.
I am free to spend evenings soaking in a bathtub with lots of bubbles and a glass of wine, and any book I want to read.
I am free to drive my kids to therapy, the store, the toy store, the farm, the mountains, the beach, or anywhere else I want.
I am free to refuse to allow a gun in my home.
I am free to walk across the street and talk to my neighbors, and let my kids play with their kids, no matter who they are.
I am free to kiss my husband. Whenever I feel like it.
I am free to wear my hair any way I like, and color it bright pink if I so desire.
I am free to write emails to my representatives in government and educate them about autism and special education.
I am free to wear comfy t-shirts and jeans.
I am free to let the dishes sit in the sink, let the grass go to seed, or let the laundry pile up on the floor. I am also free to clean the dishes, cut my own grass, and fold my laundry, even if it is a day or two later than planned.
I am free to teach my kids song lyrics such as For What It's Worth, To Everything There is a Season (Turn, Turn, Turn), or even England Swings.
I am free to be me.
Not everyone on this planet is so lucky, folks.
I am free to take my autistic child into public. I can teach him hands-on how to deal with social situations, different lighting, and public spaces.
I am free to hug my boys tight. And smooch them. And poke their tummies. And tell them I love them.
I am free to get my children medical treatment wherever I want. I might have to pay for it, but I am free to do it.
I am free to drink a beer in front of my kids in my own back yard.
I am free to feed my kids healthy food and clean water.
I am free to speak and educate people who come up to me and complain about my child's behavior. I am free to discuss autism. I am free to discuss sesnory integration disorder. I am free to tell them to shut up and leave me alone.
I am free to take my children to Church. I can even go twice a week and let Joey listen to the music on Saturdays. I am free choose the church, temple, spiritual circle, or other religion and religious area or group in which my child will be raised to understand God. Or no religion at all, if I so wish. I am even free to visit religious structures and groups other than the one I belong to.
I am free to blog about my children, my life, autism, sensory integration disorder, or anything else that is on my mind.
I am free to buy milk, or anything else I need, on Sunday.
I am free to telephone my friends, from my own livingroom.
I am free to spend evenings soaking in a bathtub with lots of bubbles and a glass of wine, and any book I want to read.
I am free to drive my kids to therapy, the store, the toy store, the farm, the mountains, the beach, or anywhere else I want.
I am free to refuse to allow a gun in my home.
I am free to walk across the street and talk to my neighbors, and let my kids play with their kids, no matter who they are.
I am free to kiss my husband. Whenever I feel like it.
I am free to wear my hair any way I like, and color it bright pink if I so desire.
I am free to write emails to my representatives in government and educate them about autism and special education.
I am free to wear comfy t-shirts and jeans.
I am free to let the dishes sit in the sink, let the grass go to seed, or let the laundry pile up on the floor. I am also free to clean the dishes, cut my own grass, and fold my laundry, even if it is a day or two later than planned.
I am free to teach my kids song lyrics such as For What It's Worth, To Everything There is a Season (Turn, Turn, Turn), or even England Swings.
I am free to be me.
Not everyone on this planet is so lucky, folks.
Tuesday, July 03, 2007
Four Second Fury
If you have ever played Four Second Fury, you have a concept of my life. I understand that this is normal for people with small children.
The boys are outside. I have exactly four seconds to blog.
Oops, missed the opportunity. Now they are outside again. Now I have four sec
Back outside. My ac unit is hating me right now. So are the cats. But at least I have four seconds to
Sitting on the couches now. Maybe I can
Yes. Four second fury. How much can YOU type in four seconds?
The boys are outside. I have exactly four seconds to blog.
Oops, missed the opportunity. Now they are outside again. Now I have four sec
Back outside. My ac unit is hating me right now. So are the cats. But at least I have four seconds to
Sitting on the couches now. Maybe I can
Yes. Four second fury. How much can YOU type in four seconds?
Sunday, July 01, 2007
Without Compare
Allan's family came by yesterday. We took them out to Wakefield, and the berry farm, and had a lovely afternoon of it. Best of all, there were no other little kids around to compare Joey to. This means that everybody just saw a happy, loving, sweet little guy, rather than the focus being on Joey's weaknesses. He was charming, cute, and adorable, as was his brother, and fun was had by all.
They seemed pretty shocked when they asked about school, and discovered he would be in a self-contained classroom. Most folks are shocked to learn this, but it seemed especially odd to them, seeing how delightful life can be with my guys. Joey was having a "good" day on top of it, so we didn't have a lot of tracking or screaming or anything that would showcase Joey's problems. Why put a happy, darling little sweetheart in a self-contained classroom?
Remember, these people are not special ed folks. They have the same ignorance of special ed, how it works, and what it is about as most people seem to have. To them, a self-contained classroom is a place where kids who are very severely disabled go. Joey is not "very severely disabled." And yes, if he had an aide, he's probably be OK in a regular classroom- but our school would rather be sued than hire a 1:1 aide. The teacher is good. So there you go.
WE went with the teacher angle. Its the easiest to explain to folks who have no clue. People tend to understand "low student" teacher ratio with excellent teacher."
They seemed pretty shocked when they asked about school, and discovered he would be in a self-contained classroom. Most folks are shocked to learn this, but it seemed especially odd to them, seeing how delightful life can be with my guys. Joey was having a "good" day on top of it, so we didn't have a lot of tracking or screaming or anything that would showcase Joey's problems. Why put a happy, darling little sweetheart in a self-contained classroom?
Remember, these people are not special ed folks. They have the same ignorance of special ed, how it works, and what it is about as most people seem to have. To them, a self-contained classroom is a place where kids who are very severely disabled go. Joey is not "very severely disabled." And yes, if he had an aide, he's probably be OK in a regular classroom- but our school would rather be sued than hire a 1:1 aide. The teacher is good. So there you go.
WE went with the teacher angle. Its the easiest to explain to folks who have no clue. People tend to understand "low student" teacher ratio with excellent teacher."
Wednesday, June 27, 2007
A Word To Students
OK, I've been reading some rounds of blogs with mostly complaints about people who do things that sound really, really stupid when you write them out in list-form on a blog. I teach college-level courses. I shall take a break from my usual autism topic to just say; here's some tips on how to really rankle a professor...
How to Really Get Your Professor In A Bad Mood:
1. Don't show up or complete a midterm. Show up afterwards or better yet, email, saying "Oops, I forgot to take the midterm. Will this affect my grade?" Yes. Yes it will.
2. Write a long, whiney email about how much work the class is. Explain that you are working a full-time job, raising kids, and trying to do a full courseload. You'll get bonus grumpiness if the prof is an adjunct, since it is likely that they are doing the euqivalent of all this while trying to hold down three or four jobs to your one- and being paid less.
3. Ask lots and lots of questions that are clearly answered in the syllabus. For example, "When is the midterm due?" or "do we have to participate in discussions this week?" or a perennial favorite, "What chapter are we on?"
4. Write rambling, tangential posts on discussion forums in poor English, then complain when you are asked to clarify the post. Ditto for in-classroom comments. Do this a lot for lots of extra grumpiness. For extra, extra bonus, complain to the Dean about your grade.
5. MIs-spell important terms and/or names in non-timed assignments. Complain when you don't get a perfect score. More extra bonus points for complaining to the Dean.
6. "Forget" to complete the first three weeks' worth of assignments. Complain loudly about how the professor wasted your money when they advise that you withdraw from the course. More bonus points for contacting the Dean.
7. Post unprofessional, "humorous" posts on discussion forums, or make inappropriate, off-topic jokes in class. Complain when the professor points out that the post or joke is inappropriate. Complain more when the professor deletes such posts or stops calling on you. LOTS of bonus points for whining to the Dean. Even the Dean will give you bonus grumpiness.
8. Turn in a paper that is 13 pages when the assignment was 20-25 pages. Or don't cite sources or examples when the directions clearly state you need to do so. Complain that you need the course to graduate- and you need at least a C. Guess what happens if you protest to the Dean (or Department Chair)...
9. Stop coming to class. Comlain about failing same class when you return the next semester. Bonus points for having sent emails about how you needed a certain grade in the same class to transfer/get off academic probation/graduate.
10. Sign up for class with long waiting list. Drop class. Sign up for it again. Drop it. Sign up for it again. Withdraw from it. Sign up for it again. Drop it again. Sign up for it again. Fail it...
11. Complain about other students getting accomodations... when you have no disabilities. Lots and lots of extra ire for complaining to the Dean about "favoritism." More bonus grumpiness for going onto public websites like "ratemyprofessors.com" and making nasty comments about the professor being an unfair grader (and yes, there are ways to know who send those comments, people... especially if you are registered.)
Students who flunk classes because they couldn't be bothered to do the work or follow directions always makes me grumpy. Don't let it happen to you.
How to Really Get Your Professor In A Bad Mood:
1. Don't show up or complete a midterm. Show up afterwards or better yet, email, saying "Oops, I forgot to take the midterm. Will this affect my grade?" Yes. Yes it will.
2. Write a long, whiney email about how much work the class is. Explain that you are working a full-time job, raising kids, and trying to do a full courseload. You'll get bonus grumpiness if the prof is an adjunct, since it is likely that they are doing the euqivalent of all this while trying to hold down three or four jobs to your one- and being paid less.
3. Ask lots and lots of questions that are clearly answered in the syllabus. For example, "When is the midterm due?" or "do we have to participate in discussions this week?" or a perennial favorite, "What chapter are we on?"
4. Write rambling, tangential posts on discussion forums in poor English, then complain when you are asked to clarify the post. Ditto for in-classroom comments. Do this a lot for lots of extra grumpiness. For extra, extra bonus, complain to the Dean about your grade.
5. MIs-spell important terms and/or names in non-timed assignments. Complain when you don't get a perfect score. More extra bonus points for complaining to the Dean.
6. "Forget" to complete the first three weeks' worth of assignments. Complain loudly about how the professor wasted your money when they advise that you withdraw from the course. More bonus points for contacting the Dean.
7. Post unprofessional, "humorous" posts on discussion forums, or make inappropriate, off-topic jokes in class. Complain when the professor points out that the post or joke is inappropriate. Complain more when the professor deletes such posts or stops calling on you. LOTS of bonus points for whining to the Dean. Even the Dean will give you bonus grumpiness.
8. Turn in a paper that is 13 pages when the assignment was 20-25 pages. Or don't cite sources or examples when the directions clearly state you need to do so. Complain that you need the course to graduate- and you need at least a C. Guess what happens if you protest to the Dean (or Department Chair)...
9. Stop coming to class. Comlain about failing same class when you return the next semester. Bonus points for having sent emails about how you needed a certain grade in the same class to transfer/get off academic probation/graduate.
10. Sign up for class with long waiting list. Drop class. Sign up for it again. Drop it. Sign up for it again. Withdraw from it. Sign up for it again. Drop it again. Sign up for it again. Fail it...
11. Complain about other students getting accomodations... when you have no disabilities. Lots and lots of extra ire for complaining to the Dean about "favoritism." More bonus grumpiness for going onto public websites like "ratemyprofessors.com" and making nasty comments about the professor being an unfair grader (and yes, there are ways to know who send those comments, people... especially if you are registered.)
Students who flunk classes because they couldn't be bothered to do the work or follow directions always makes me grumpy. Don't let it happen to you.
Tuesday, June 26, 2007
Inconceivable!
We've been spending a lot of time watching Signing Time around here. Rachel Coleman, whose children are the inspiration for creating the series, also wrote several interesting songs about having disabled children and thoughts about those children, which are often played (and signed) at the ends of the episodes. In one of the songs, Shine, she talks about lists of things she was told her daughter Lucy would never do- and now does. Over the three years we have had a diagnosis for Joey, we have been told by a variety of people that there are things Joey "will never do" because of autism. Mostly, these lists do more to reveal the ignorance other people have of disability generally and autism specifically, than provide any useful advice or information.
Joey may never be able to feel empathy, or recognize emotion. He may never recognize people. He may never generalize skills. He may never talk. He may never read. He may never write. He may never be able to handle change. He may never be toilet trained. He may never point, or have joint attention. He may never make friends. He may never be able to maintain relationships. He may never show emotion. He may never react appropriately to situations or emotions. He may never jump. He may never be able to focus on a task. He may never be able to self-regulate.
All of these things he either does, or is well on his way to mastering.
Sure, there are lots of "nevers" yet to be tested. He may never drive. He may never have a girlfriend. He may never get a job, or keep a job. He may never have the opportunity to go to college. He may never live independently or leave home.
Yet I have the sneaking suspicion that my response should be, as per The Princess Bride: "You keep using that word. I do not think it means what you think it means..."
Joey may never be able to feel empathy, or recognize emotion. He may never recognize people. He may never generalize skills. He may never talk. He may never read. He may never write. He may never be able to handle change. He may never be toilet trained. He may never point, or have joint attention. He may never make friends. He may never be able to maintain relationships. He may never show emotion. He may never react appropriately to situations or emotions. He may never jump. He may never be able to focus on a task. He may never be able to self-regulate.
All of these things he either does, or is well on his way to mastering.
Sure, there are lots of "nevers" yet to be tested. He may never drive. He may never have a girlfriend. He may never get a job, or keep a job. He may never have the opportunity to go to college. He may never live independently or leave home.
Yet I have the sneaking suspicion that my response should be, as per The Princess Bride: "You keep using that word. I do not think it means what you think it means..."
Saturday, June 23, 2007
Swimming in the water
We ran up to my aunt and uncle's today. They have a pool, and Joey loves pools. A big, in-ground pool. Joey was excited the whole way up. We told him he was goign to see his cousins and go swimming, and we had a joyous chorus of "Joey's swimming in the water!" all the way there. It was only an hour and half.
This is one of those days when the idea of Joey being disabled simply isn't in the equation. He simply is who he is. Yes, we had a good bit of tracking today, and that meant he didn't engage with his cousins so much, but he did enjoy seeing them. He loved being in the pool. Andy certainly had a blast hanging out with the "big boys" (the boys are actually my cousin's kids, and they are some 4 years older than Joey). The thing was, even if Joey couldn't focus on a game or fully engage with the other guys, he was having fun. He was trackign because he got worn out from all the excitement, but that is just his way. We only had one screaming fit, and that was because Joey could have stayed in the pool for the rest of life and been happy, but he was exhausted and cold and really needed to get out and get dressed. Like any little kid, he anted to keep doign what was pleasurable, despite falling asleep on his feet.
It didn't matter that he couldn't talk like other 5-year-olds. It didn't matter that he couldn't really socialize like other kids. This was his family, and he could be who he was, just as he was, and that was fine. I wish all my family was like that. Ah, wishes again...
Sometimes you pick your battles. We'll just keep taking him around to the ones who love him, and not inflict the others upon him whenever we can avoid it. He has better things to do. Life is short.
This is one of those days when the idea of Joey being disabled simply isn't in the equation. He simply is who he is. Yes, we had a good bit of tracking today, and that meant he didn't engage with his cousins so much, but he did enjoy seeing them. He loved being in the pool. Andy certainly had a blast hanging out with the "big boys" (the boys are actually my cousin's kids, and they are some 4 years older than Joey). The thing was, even if Joey couldn't focus on a game or fully engage with the other guys, he was having fun. He was trackign because he got worn out from all the excitement, but that is just his way. We only had one screaming fit, and that was because Joey could have stayed in the pool for the rest of life and been happy, but he was exhausted and cold and really needed to get out and get dressed. Like any little kid, he anted to keep doign what was pleasurable, despite falling asleep on his feet.
It didn't matter that he couldn't talk like other 5-year-olds. It didn't matter that he couldn't really socialize like other kids. This was his family, and he could be who he was, just as he was, and that was fine. I wish all my family was like that. Ah, wishes again...
Sometimes you pick your battles. We'll just keep taking him around to the ones who love him, and not inflict the others upon him whenever we can avoid it. He has better things to do. Life is short.
Friday, June 22, 2007
Life is good.
Things that remind you that Life is Good:
Two faces smeared with cupcake frosting- preferably bright, neon colors.
That joyous victory squeal as you pull the vinyl from the shed: "Yes, Mommy! POOL PARTY!!!"
A boy curled up in the crook of your knees.
A good-morning kiss that wakes you up- that you didn't even see coming.
Giggles from down the hall after bedtime stories are all read.
Pretending to make soda in the bath tub.
Getting in the car to the chorus of "An-muls!" knowing you're going to oblige with a trip to the petting zoo.
Tickle fights.
"I...want...soda...please!"
That first trip to see Dinosaurs at the Smithsonian.
A boy with a lollipop in each fist.
Teaching boys to play skeeball.
A big, chocolatey kiss... and you don't know where he got the chocolate.
Waking up to two boys on your bed... playing quietly.
The cheer when those boys discover your eye is open.
Watching a boy chase bumblebees in the clover- all afternoon.
Wednesday, June 20, 2007
Dreams of Joey and Andy
It is amazing that people expect parents to be perfect. Infallible. Paragons of virtue, wisdom, and grace.
Parents are not people. They are... moms and dads.
Joey did not have a name or word for me until he was well into being three years old. Until then, I simply was. And then, I was mom. This is perfectly fine. Joey is only five years old. But it gets old to see adults who still don't get it. You don't stop being a person when you become a parent. In some ways, you become more of one, because you gain so many new social and cultural roles.
The day you realize and understand your parents are real people- with thoughts, dreams, feelings, and and life completely seperate from your own (which existed before you!)- you stop being a child. You become an adult, with new roles.
I have a hard time describing what it is like to be a parent to people who have no children. I was the first of my circle to have children, and most of my friends, upon discovering their own pregnancies, called and asked, "What is it like to be a mom?" These same friends who had been giving me parenting advice for years suddenly looked parenthood in the face and realized they were in alien territory. People who advised me on how to get Joey or Andy to eat, stop wandering about a room during a library reading, go to bed, brush their teeth, or go to the bathroom suddenly got the epiphany that they had no idea what they were talking about. Oops.
All of these people have dreams for their children. Ideas of how to raise their children. Beliefs of how children should behave, what is socially appropriate for them, what skills they need to survive, and how those skills should be taught, practiced, and communicated. That is what parents do.
I love the essay Welcome to Holland. It is a glimpse at what it feels like to have life not go the way you thought it should, the way you were taught it would, the way things are planned, dreamed, hoped for. The best part of the essay is at the end- when you appreciate the wonders of life as it is. And yet the essay acknowledges the pain. It is not swept away in some righteous, virtuous, Stoic ideal of saying "so it is." When life takes unexpected turns, you are effected- as is everyone around you. When Joey was born, life changed. When the words "He is either profoundly deaf, profoundly autistic, or both" fell from the lips of the SLP at Mary Wash, my life was changed. My life. Why do I not have the right to mourn for that life?
My life changed. Joey's life changed. My mother's life changed. Andy's life changed. Allan's life changed. In a single moment, we entered a new world. The plane landed.
Before the plane landed, life looked like everyone else's life- we didn't know we were already on course for somewhere other than Italy. No one on that plane did. We were all busy chatting in Italian. So the shock of the change is when the plane lands.
Personally, I have never really been sad about the "might have been" for Joey. He didn't really change; I did. He is still Joey, just Joey with a lot more help than I would have otherwise known to get for him. I do wish his challenges were not so great. I wish people who are supposed to be helping him would actually do so. I don't remember what dreams I had for Joey before we realized autism was a part of our lives. I hope they were what they are now- a drive to help him develop his talents, enjoy his life, and be happy. Right now, i'm not sure entirely what that will entail, because I have to listen close and watch close to see what he wants for himself, and to see what develops. Same for Andy. Actually, what they want right now is to have cookies for dinner and chocolate on immediate stand-by, 24 hours a day. It is my job to guide them to more appropriate joys and talents. In order to do that, I have to have some idea what those are.
I have been sad for the "where I was going." My life. Remember me? I'm still a human being. I would very much have liked to spend my life with my boys lounging at the Ganges View with lemon Mirindas all-round, pondering the mysteries of ancient India while enjoying the laughter of little boys. But folks, the liklihood of me landing the career path that would have allowed this is now exactly Nil. That is the reality. I have to change course, think up new dreams. But I still think about that one. I'll get these boys to India, but I doubt they'll be very young when I do so. Or that it will happen very often. Economics remains a major factor in reality.
And while I'm here in an insomniac ramble, I want to go back pick up the thread of the word "understand." Knowing something is very different from understanding it. Most kids know that their parents are people. They don't understand that parents are people.
Joey and Andy are learning ASL. We often make a game of quizzing each other on the signs, and they are both pretty good at it. They can tell me the meaning of almost every sign I throw at them (which is admittedly limited to the signs we have covered on our DVDs). Joey's favorite sign is fox. Andy's favorite sign is candy.
Andy knows the sign for candy. He thinks its funny to twist his finger on his cheek It tickles. If I say, "show me 'candy'!" he will make the sign. When I show him teh sign he pipes up, "candy!"
But today he understood the sign. Joey came out of therapy with a lollipop. Andy wanted one. So I asked him to sign what he wanted. He looked at me lie i was a crazy person. I asked him if he wanted candy, and he automatically said yes... and then I held up a lollipop, unwrapped it, held it out to him, and signed and said, "candy." You could see the little lights switch on. He popped it in his mouth. He squealed, pulled it out, signed and squealed "Candy!" and got excited. He got it. He understood. He knew the sign and what it meant before- but now, with the candy in his mouth, he understood. Candy!
Parents are not people. They are... moms and dads.
Joey did not have a name or word for me until he was well into being three years old. Until then, I simply was. And then, I was mom. This is perfectly fine. Joey is only five years old. But it gets old to see adults who still don't get it. You don't stop being a person when you become a parent. In some ways, you become more of one, because you gain so many new social and cultural roles.
The day you realize and understand your parents are real people- with thoughts, dreams, feelings, and and life completely seperate from your own (which existed before you!)- you stop being a child. You become an adult, with new roles.
I have a hard time describing what it is like to be a parent to people who have no children. I was the first of my circle to have children, and most of my friends, upon discovering their own pregnancies, called and asked, "What is it like to be a mom?" These same friends who had been giving me parenting advice for years suddenly looked parenthood in the face and realized they were in alien territory. People who advised me on how to get Joey or Andy to eat, stop wandering about a room during a library reading, go to bed, brush their teeth, or go to the bathroom suddenly got the epiphany that they had no idea what they were talking about. Oops.
All of these people have dreams for their children. Ideas of how to raise their children. Beliefs of how children should behave, what is socially appropriate for them, what skills they need to survive, and how those skills should be taught, practiced, and communicated. That is what parents do.
I love the essay Welcome to Holland. It is a glimpse at what it feels like to have life not go the way you thought it should, the way you were taught it would, the way things are planned, dreamed, hoped for. The best part of the essay is at the end- when you appreciate the wonders of life as it is. And yet the essay acknowledges the pain. It is not swept away in some righteous, virtuous, Stoic ideal of saying "so it is." When life takes unexpected turns, you are effected- as is everyone around you. When Joey was born, life changed. When the words "He is either profoundly deaf, profoundly autistic, or both" fell from the lips of the SLP at Mary Wash, my life was changed. My life. Why do I not have the right to mourn for that life?
My life changed. Joey's life changed. My mother's life changed. Andy's life changed. Allan's life changed. In a single moment, we entered a new world. The plane landed.
Before the plane landed, life looked like everyone else's life- we didn't know we were already on course for somewhere other than Italy. No one on that plane did. We were all busy chatting in Italian. So the shock of the change is when the plane lands.
Personally, I have never really been sad about the "might have been" for Joey. He didn't really change; I did. He is still Joey, just Joey with a lot more help than I would have otherwise known to get for him. I do wish his challenges were not so great. I wish people who are supposed to be helping him would actually do so. I don't remember what dreams I had for Joey before we realized autism was a part of our lives. I hope they were what they are now- a drive to help him develop his talents, enjoy his life, and be happy. Right now, i'm not sure entirely what that will entail, because I have to listen close and watch close to see what he wants for himself, and to see what develops. Same for Andy. Actually, what they want right now is to have cookies for dinner and chocolate on immediate stand-by, 24 hours a day. It is my job to guide them to more appropriate joys and talents. In order to do that, I have to have some idea what those are.
I have been sad for the "where I was going." My life. Remember me? I'm still a human being. I would very much have liked to spend my life with my boys lounging at the Ganges View with lemon Mirindas all-round, pondering the mysteries of ancient India while enjoying the laughter of little boys. But folks, the liklihood of me landing the career path that would have allowed this is now exactly Nil. That is the reality. I have to change course, think up new dreams. But I still think about that one. I'll get these boys to India, but I doubt they'll be very young when I do so. Or that it will happen very often. Economics remains a major factor in reality.
And while I'm here in an insomniac ramble, I want to go back pick up the thread of the word "understand." Knowing something is very different from understanding it. Most kids know that their parents are people. They don't understand that parents are people.
Joey and Andy are learning ASL. We often make a game of quizzing each other on the signs, and they are both pretty good at it. They can tell me the meaning of almost every sign I throw at them (which is admittedly limited to the signs we have covered on our DVDs). Joey's favorite sign is fox. Andy's favorite sign is candy.
Andy knows the sign for candy. He thinks its funny to twist his finger on his cheek It tickles. If I say, "show me 'candy'!" he will make the sign. When I show him teh sign he pipes up, "candy!"
But today he understood the sign. Joey came out of therapy with a lollipop. Andy wanted one. So I asked him to sign what he wanted. He looked at me lie i was a crazy person. I asked him if he wanted candy, and he automatically said yes... and then I held up a lollipop, unwrapped it, held it out to him, and signed and said, "candy." You could see the little lights switch on. He popped it in his mouth. He squealed, pulled it out, signed and squealed "Candy!" and got excited. He got it. He understood. He knew the sign and what it meant before- but now, with the candy in his mouth, he understood. Candy!
Tuesday, June 19, 2007
Surprise problem
This was a morning I was so glad we have the new locks.
White Car (our van) is in the garage being fixed, so we are temporariy in our old red Jeep to get around. Usually Joey is begging to "go in the Red Car" because he loves red, so I didn't worry too much. We also have Green Car, which is the car Allan takes to work.
Yesterday we played a little bit of musical cars because of the drum lesson timing, which is also on a new day (see what is coming yet?) So Joey and I ended up coming home in Green Car.
This morning, I was awakened by a wail... "Green Car gone!!!!" Rememebr, Green Car is the car Allan uses to go to work- and he went to work this morning. So we talked about Daddy going to work, but that made it worse- now he started to wail, "Daddy's gone! Daddy? Where are you?"
Andy was still sleeping, so I got Joey into his clothes, and then went to go put on clothes myself. Andy woke up, so I had to stop and put him together, too.
We came downstairs to find Joey with his shoes on (hey! Look! He put his shoes on all by himself!) pulling on the back door (the lock we just changed) sniffing about "Green Car! I want my Green Car!"
Poor little guy. Start of summer has his schedule all topsy-turvey. So I'm hugging him lots this morning.
White Car (our van) is in the garage being fixed, so we are temporariy in our old red Jeep to get around. Usually Joey is begging to "go in the Red Car" because he loves red, so I didn't worry too much. We also have Green Car, which is the car Allan takes to work.
Yesterday we played a little bit of musical cars because of the drum lesson timing, which is also on a new day (see what is coming yet?) So Joey and I ended up coming home in Green Car.
This morning, I was awakened by a wail... "Green Car gone!!!!" Rememebr, Green Car is the car Allan uses to go to work- and he went to work this morning. So we talked about Daddy going to work, but that made it worse- now he started to wail, "Daddy's gone! Daddy? Where are you?"
Andy was still sleeping, so I got Joey into his clothes, and then went to go put on clothes myself. Andy woke up, so I had to stop and put him together, too.
We came downstairs to find Joey with his shoes on (hey! Look! He put his shoes on all by himself!) pulling on the back door (the lock we just changed) sniffing about "Green Car! I want my Green Car!"
Poor little guy. Start of summer has his schedule all topsy-turvey. So I'm hugging him lots this morning.
Monday, June 18, 2007
Sequencing
Joey is learning sequencing. He has a difficult time with sequencing as a general skill. The idea of something happening first, then the next thing happening, and then there being a result or conclusion is something he finds either uninteresting or challenging. Unless...
I had to go to the big IEP for Kindergarten a bit ago. Grandma watched the boys. Joey has been having a lot of trouble with me leaving the house without him, so this was a Big Deal for Grandma to have to watch them. There was nothing else for it. Off I went, and home I came.
Joey spent the couple of hours plotting. When I left, he screamed his head off for 45 minutes. Grandma explained to Joey that I had gone to school to talk with his teacher about kindergarten, and that I would be home soon. The screaming gave way to the plotting. There was a black truck parked across the street; he could see it through his favorite window.
"We get in the black car. We go to school and see Miss Kaila and Mommy."
There we go. Three-step sequencing.
Joey can escape from the house if the key is in reach, and has done it. This requires going to the door, turning the key, then walking out of the house. Three-step sequencing.
But he cannot tell you what he did yesterday, or what will happen tomorrow. Taking three related pictures and put them in order? Forget it. He can pick up random things in a story, but cannot retell it.
He can recite the entire Silly Pizza Song and gets upset if you get the foods out of order, but has trouble completing simple "obstacle courses" for his OT (though he is improving!)
How does one communicate the concept of first- second- third?
Sequencing may not appear to be a "critical life skill." After all, who cares if you know the order of a story, the teacher can read it to you? But sequencing is about learning conclusions and consequences. I get hungry. I eat food. I am not hungry anymore (or, I have energy to go play.) Doesn't seem like a big deal unless the sequencing is a problem, and then connecting eating to staying alive and having energy gets missed. Or how about, I want something across the road, I run out into the road, I get hit by a car?
At our next IEP meeting, I am again going to have goals flagged as "critical life skills." It makes it easier to get ESY if flagged goals are not mastered, and it lets the school folks know what skills I find important. The sequencing goal is definitely getting flagged.
I had to go to the big IEP for Kindergarten a bit ago. Grandma watched the boys. Joey has been having a lot of trouble with me leaving the house without him, so this was a Big Deal for Grandma to have to watch them. There was nothing else for it. Off I went, and home I came.
Joey spent the couple of hours plotting. When I left, he screamed his head off for 45 minutes. Grandma explained to Joey that I had gone to school to talk with his teacher about kindergarten, and that I would be home soon. The screaming gave way to the plotting. There was a black truck parked across the street; he could see it through his favorite window.
"We get in the black car. We go to school and see Miss Kaila and Mommy."
There we go. Three-step sequencing.
Joey can escape from the house if the key is in reach, and has done it. This requires going to the door, turning the key, then walking out of the house. Three-step sequencing.
But he cannot tell you what he did yesterday, or what will happen tomorrow. Taking three related pictures and put them in order? Forget it. He can pick up random things in a story, but cannot retell it.
He can recite the entire Silly Pizza Song and gets upset if you get the foods out of order, but has trouble completing simple "obstacle courses" for his OT (though he is improving!)
How does one communicate the concept of first- second- third?
Sequencing may not appear to be a "critical life skill." After all, who cares if you know the order of a story, the teacher can read it to you? But sequencing is about learning conclusions and consequences. I get hungry. I eat food. I am not hungry anymore (or, I have energy to go play.) Doesn't seem like a big deal unless the sequencing is a problem, and then connecting eating to staying alive and having energy gets missed. Or how about, I want something across the road, I run out into the road, I get hit by a car?
At our next IEP meeting, I am again going to have goals flagged as "critical life skills." It makes it easier to get ESY if flagged goals are not mastered, and it lets the school folks know what skills I find important. The sequencing goal is definitely getting flagged.
Saturday, June 16, 2007
Just a little update
Busy busy busy here... Andy is potty training. I am running around after him with the paper towels today- we're wearing our underwear!
And they are spending the day watching Signing Time, so we're practicing our signs. Joey only takes a couple of viewings before he has it, or at least the idea of it. Our OT was excited because signing requires bilateral coordination and some motor planning- so it takes him a little longer to be able to do the sing, but he understands it almost right away.
Fun fun fun!
And they are spending the day watching Signing Time, so we're practicing our signs. Joey only takes a couple of viewings before he has it, or at least the idea of it. Our OT was excited because signing requires bilateral coordination and some motor planning- so it takes him a little longer to be able to do the sing, but he understands it almost right away.
Fun fun fun!
Wednesday, June 13, 2007
Theory of Mind: What is this rot?
The topic of "theory of mind' has been popping up in all sorts of odd places for me- particularly the idea that autistic people don't have it. Either I don't get what "theory of mind" is, or the idea that autistics don't have it is a lot of rot.
In a basic simplification, I understood that the "theory of mind" means that one person can understand that another person has a mind. It is being used as a shorthand for the ability to pick up and react to other people's emotions, because you understand that they HAVE emotions, thoughts, feelings, beliefs, etc., and that these emotions, thoughts, etc. might be different from yours.
Setting aside that I know a lot of non-autistic people who have a lot of trouble with the second part of that, I haven't yet met an autistic person who didn't have these abilities. They might not be able to react appropriately to other other people, but that seems to be more a problem of processing and accessing proper response. Kind of like Joey having a hard time accessing words spontaneously, and so he has a great deal of trouble with communication and expressive language. He copes with this by scripting, or quoting like Mrs. Who. Sometimes he accesses something other than what was intended, resulting in words that make no sense; or he can access nothing at all, resulting in either silence or frustrated squealing (or other noise).
In other words, Joey seems to have no trouble understanding that other people are, in fact, people. He is very sensitive to emotional states- especially mine. He certainly understands that other people do not feel and think the same way he does. And he's only 5, and I've had evidence of this for a while.
People who are not autistic seem to come up with the odd ideas when they just can't get the fact that there are people in the world who cannot communicate orally- or even verbally. They seem to have their own problems with "theory of mind" in that they can't understand that there are other ways to communicate. Joey's private speech therapist has been very apologetic since she started Joey on ASL, because it became immediately apparent that Joey understood a lot more of what was being said- and what he wanted to say- than she had been giving him credit for. With teh visual cues, Joey can circumvent some of the auditory processing and instead use his visual processing- and so can better understand what is expected of him and what is being said to him. He can also access his words better and faster.
Before Joey had use of words, even signs, we knew what he wanted and needed much of the time. We could certainly tell if he was happy or unhappy, if he liked anothe person or not, that sort of thing. We had communication with him, and he understood to communicate with us- just not in the "usual" ways.
Theory of Mind seems to be just another way of trying to depict autistic people as something less than human. Of taking away their sense of humanity by taking away their sense of community. It is easier to make an object of a person you believe is making an object of you.
Joey gets the idea of people. When Andy hurts himself, he's quick with that hug and kiss- always was. When Mom is nervous abotu an IEP meeting, he gets upset, too, and lots more cuddly (and clingy). When we're all happy, he's all smiles. He wants to make people around him feel happy. When he laughs inappropriately, he's still reacting, and even usually seems to know that laughter isn't what he intended. He's got the idea that other people have minds.
I have no idea yet if he knows those minds aren't like his.
In a basic simplification, I understood that the "theory of mind" means that one person can understand that another person has a mind. It is being used as a shorthand for the ability to pick up and react to other people's emotions, because you understand that they HAVE emotions, thoughts, feelings, beliefs, etc., and that these emotions, thoughts, etc. might be different from yours.
Setting aside that I know a lot of non-autistic people who have a lot of trouble with the second part of that, I haven't yet met an autistic person who didn't have these abilities. They might not be able to react appropriately to other other people, but that seems to be more a problem of processing and accessing proper response. Kind of like Joey having a hard time accessing words spontaneously, and so he has a great deal of trouble with communication and expressive language. He copes with this by scripting, or quoting like Mrs. Who. Sometimes he accesses something other than what was intended, resulting in words that make no sense; or he can access nothing at all, resulting in either silence or frustrated squealing (or other noise).
In other words, Joey seems to have no trouble understanding that other people are, in fact, people. He is very sensitive to emotional states- especially mine. He certainly understands that other people do not feel and think the same way he does. And he's only 5, and I've had evidence of this for a while.
People who are not autistic seem to come up with the odd ideas when they just can't get the fact that there are people in the world who cannot communicate orally- or even verbally. They seem to have their own problems with "theory of mind" in that they can't understand that there are other ways to communicate. Joey's private speech therapist has been very apologetic since she started Joey on ASL, because it became immediately apparent that Joey understood a lot more of what was being said- and what he wanted to say- than she had been giving him credit for. With teh visual cues, Joey can circumvent some of the auditory processing and instead use his visual processing- and so can better understand what is expected of him and what is being said to him. He can also access his words better and faster.
Before Joey had use of words, even signs, we knew what he wanted and needed much of the time. We could certainly tell if he was happy or unhappy, if he liked anothe person or not, that sort of thing. We had communication with him, and he understood to communicate with us- just not in the "usual" ways.
Theory of Mind seems to be just another way of trying to depict autistic people as something less than human. Of taking away their sense of humanity by taking away their sense of community. It is easier to make an object of a person you believe is making an object of you.
Joey gets the idea of people. When Andy hurts himself, he's quick with that hug and kiss- always was. When Mom is nervous abotu an IEP meeting, he gets upset, too, and lots more cuddly (and clingy). When we're all happy, he's all smiles. He wants to make people around him feel happy. When he laughs inappropriately, he's still reacting, and even usually seems to know that laughter isn't what he intended. He's got the idea that other people have minds.
I have no idea yet if he knows those minds aren't like his.
Sunday, June 10, 2007
Parking
On the advice of our doc, we got a disabled parking placard. This is a little peice of plastic that looks like a do-not-disturb doorknob sign, and it allows us to park in disability parking spots when we have Joey with us. I've been putting off getting it. Joey doesn't have trouble with actual mechanics of walking- at least, not enough to prevent him from crossing a parking lot. With the increase in bolting, the doctor thought we should go ahead and get one, though, because some places around here only have off-street parking for disabled persons. Getting Joey in and out of a car in a lot, instead of on the street, is far, far safer, especially if the place is unknown or not well-known.
We used it for the first time yesterday. We took the bairns to the mountains. It's a nice ride, and Skyline Drive is so pretty. Joey was a little overwhelmed by the views, but Andy liked it, especially if a bird flew out over the valley. We stopped for lunch, and the lot was full- except the disabled spots. We added up our situation: strange place with busy parking lot, lots of people, no other spots available anyway, spot available almost at door. We whipped out our new placard and parked.
It was amazing.
Normally in such a situation, getting out of the car would have been a carefully orchestrated set of events intended to keep Joey tethered to one of us while the other wrestled Andy out of his harness. We then do a careful hand-in-hand dance across the tarmac hoping that wriggling fingers don't break free and suddenly have a boy in front of a moving vehicle, or worse, have a child melt down.
Not this time. We pulled into the spot, and herded the boys almost directly onto the sidewalk, away from cars. Then we went smoothly into the building. Coming out was even better. Out the door and into the car. No tarmac-crossing necessary. No danger of stepping in front of cars. No worries about getting halfway to the car and losing a child to wriggling or melting. No problemo.
Today I took them to Maymont. I used the magic of disabled parking again. The disabled spots are right in front of a little path enclosed by shrubbery right down to the door. No steps to trip on. No crossing in front of traffic. I can't BELIEVE how much safer this is. I'm just flabbergasted.
I won't need it in common places like the grocery store, because I park next to the carts, since Joey prefers to ride safely enclosed in a cart. But in unfamiliar lots... what a lifesaver!
Friday, June 08, 2007
IEP Aftershock
The meeting went pretty smoothly. The school OT kept her mouth shut, but also offered no actual goals. She managed to put her name on something so she can be put down as a consult, but that's probably just because she'll be in teh classroom anyway; I suspect she has to clock her time or something, so the more "consult" she has, the less actual work she has to do. But perhaps I am being ungenerous.
Anyway, we got some goals, mostly social interaction and language stuff, and we've got the good teacher. I'm going to chat with my private OT, who went to the meeting, abotu the OT situation before I sign this thing. I'm not crazy abotu having the school OT messing with my child, but I'm also worried about having direct OT off the books, and maybe he needs some goals that got swept under the rug?
The new administrator is a no-nonsense, get it done kind of lady. This made the meeting go at lightning speed. Another reason to not sign anything- what didn't get discussed, because we were distracted by pre-drafted goals and the march to signatures? We're in no hurry. The teacher I already know is the best our system has, and we seem to communicate OK. The new SLP seemed OK, and friendly enough. So this might be OK. That would be nice. We'll see.
The new team was very interested in a powerpoint I put together about Joey. It's a little too detailed to be posting on a public blog, but mostly I used Kristina's (Autism Vox) suggestions to put it together, so that we could communicate how we view Joey, the role of the school in his education, and highlight his strengths and abilities instead of the deficits- since most of these meetings dwell on goals for thigns he isn't doing so great with. The preschool staff would see my computer and roll their eyes. These new people wanted printouts to distribute to the staff who would be working with Joey- all of it. There's an interesting change in pace.
One thing that kind of bugs me is the whole system made manifest by the meeting was clearly geared to absent parents. It was like a great machine, and you either said yes or no. I wonder how much of the smoothness is because someone has told people to back off, or if they've just figured out ways to keep me at bay, so I have to go home an dthink about what actually happened and whether it is worth hiring a lawyer and checking everything top to bottom. Or maybe they know I'm likely going to do that anyway, and just aren't going to put out more energy than needful. Or are these new people more efficient, being used to having lots of kids show up at kindergarten with no intervention and disinterested (or overbooked) parents? Or did someone put a fire under someone's butt and tell these folks to start at least appearing to obey the law and quit making fusses? We've had so much trouble, I am still inclined to be suspicious. I want to know what is going on for there to be such a dramatic (apparent) attitude shift. But for now, I'm jus going to go over the IEP with the proverbial fine-tooth comb and start from there.
Shame we dont all live closer so we can get together for an IEP party and pull apart each other's IEPs and ask questions and stuff. :P
Anyway, we got some goals, mostly social interaction and language stuff, and we've got the good teacher. I'm going to chat with my private OT, who went to the meeting, abotu the OT situation before I sign this thing. I'm not crazy abotu having the school OT messing with my child, but I'm also worried about having direct OT off the books, and maybe he needs some goals that got swept under the rug?
The new administrator is a no-nonsense, get it done kind of lady. This made the meeting go at lightning speed. Another reason to not sign anything- what didn't get discussed, because we were distracted by pre-drafted goals and the march to signatures? We're in no hurry. The teacher I already know is the best our system has, and we seem to communicate OK. The new SLP seemed OK, and friendly enough. So this might be OK. That would be nice. We'll see.
The new team was very interested in a powerpoint I put together about Joey. It's a little too detailed to be posting on a public blog, but mostly I used Kristina's (Autism Vox) suggestions to put it together, so that we could communicate how we view Joey, the role of the school in his education, and highlight his strengths and abilities instead of the deficits- since most of these meetings dwell on goals for thigns he isn't doing so great with. The preschool staff would see my computer and roll their eyes. These new people wanted printouts to distribute to the staff who would be working with Joey- all of it. There's an interesting change in pace.
One thing that kind of bugs me is the whole system made manifest by the meeting was clearly geared to absent parents. It was like a great machine, and you either said yes or no. I wonder how much of the smoothness is because someone has told people to back off, or if they've just figured out ways to keep me at bay, so I have to go home an dthink about what actually happened and whether it is worth hiring a lawyer and checking everything top to bottom. Or maybe they know I'm likely going to do that anyway, and just aren't going to put out more energy than needful. Or are these new people more efficient, being used to having lots of kids show up at kindergarten with no intervention and disinterested (or overbooked) parents? Or did someone put a fire under someone's butt and tell these folks to start at least appearing to obey the law and quit making fusses? We've had so much trouble, I am still inclined to be suspicious. I want to know what is going on for there to be such a dramatic (apparent) attitude shift. But for now, I'm jus going to go over the IEP with the proverbial fine-tooth comb and start from there.
Shame we dont all live closer so we can get together for an IEP party and pull apart each other's IEPs and ask questions and stuff. :P
Thursday, June 07, 2007
One of Our Fears
We live in fear of this all the time.
As we prepare for our IEP, we also prepare to answer for that most heinous of suggestions: that Joey does not need service and support because he is "high functioning."
Yes, Joey likes to interact with peers. He hasn't a clue how to do it, but he really, really wants to. He doesn't have the language to carry a conversation, or to respond to another child's request within play (he can answer "Do you want to play?" but when asked "Want to play superheros? Want to be Superman?" we are definitely out of Joey's element.) Joey can count, he can name colors, he can write his name and read a few words. But can he ask a question? Can he communicate his needs? Can he engage in social conversation? Can he, in short, function?
And until he can, why call him "high functioning"?
As we prepare for our IEP, we also prepare to answer for that most heinous of suggestions: that Joey does not need service and support because he is "high functioning."
Yes, Joey likes to interact with peers. He hasn't a clue how to do it, but he really, really wants to. He doesn't have the language to carry a conversation, or to respond to another child's request within play (he can answer "Do you want to play?" but when asked "Want to play superheros? Want to be Superman?" we are definitely out of Joey's element.) Joey can count, he can name colors, he can write his name and read a few words. But can he ask a question? Can he communicate his needs? Can he engage in social conversation? Can he, in short, function? And until he can, why call him "high functioning"?
Presents
I got the presents: beautiful faceclothes and shower gels all around. It took me half an hour to pick out the clothes. Some of the other shoppers were laughing at me rummaging through the towels and touching every single cloth- but the point was to find the ones that were thick and lovely. No one needs another cheapo yucky facecloth. I gave out massagers last year, so this should work fine. A little spa treatment over summer vacation.
I was even nice and got one for the school OT.
I was even nice and got one for the school OT.
On the upcoming IEP meeting
This morning I plan to go shopping for end-of-year presents. I'm not sure what I'm going to get. Usually I have something in mind- but this year, I'm a little aimless. It isn't like these people have been wonderfully helpful, friendly, or even polite. They've done little for Joey- he's doing The Very Hungry Caterpillar for the third year running, and is bored to tears, and they wonder why he's being uncompliant and argumentative. When I ask questions, the first response has been "We're professionals; why are you asking questions?" I feel like Harry Potter trying to talk to Aunt Petunia.
I'm not ask stressed as usual about the Friday meeting. Maybe I'll start freaking out tomorrow. There's really no point. I have the OT coming with me, and the kindergarden teacher has said she will also come- I think it is silly that the next teacher wouldn't be automatically included at this meeting, since she is the one who needs to understand the IEP. But I got that fixed, she's coming. I'll do what I can. And if there needs to be more, I'll call another IEP. I may hire a legal advocate for next year, but we'll see how these people deal with it. I'm kind of ooking forward to having a mostly new team- though I get to keep the most problematic member of my current team. Hooray! That's why the OT is coming with me. I'm not the only one unhappy with Joey's OT goals.
Tonight, I'll comb through the reports we have and put together things that need to be addressed. And we shall see what they feel like addressing.
I'm not ask stressed as usual about the Friday meeting. Maybe I'll start freaking out tomorrow. There's really no point. I have the OT coming with me, and the kindergarden teacher has said she will also come- I think it is silly that the next teacher wouldn't be automatically included at this meeting, since she is the one who needs to understand the IEP. But I got that fixed, she's coming. I'll do what I can. And if there needs to be more, I'll call another IEP. I may hire a legal advocate for next year, but we'll see how these people deal with it. I'm kind of ooking forward to having a mostly new team- though I get to keep the most problematic member of my current team. Hooray! That's why the OT is coming with me. I'm not the only one unhappy with Joey's OT goals.
Tonight, I'll comb through the reports we have and put together things that need to be addressed. And we shall see what they feel like addressing.
Wednesday, June 06, 2007
Warm fuzzies all around
Joeymom -- [adjective]: Fuzzy to the touch 'How will you be defined in the dictionary?' at QuizGalaxy.com |
Shhhhh...
I was awakened this morning to two little boys in my bed, bouncing on it. When I opened an eye, I got two little kisses, and a chorus of "Shhhhh... Mommy's sleeping!"
Tuesday, June 05, 2007
Signs
Joey had a good speech session today. He's learning sign language. This will give him visual cues, to use when he cannot find words, or for us to use to better communicate with him. HIs favorite sign is "fox." Today, he and Nikki were doing some other things, including looking at some Richard Scary books. He turned to her and signed about what he saw on the page: "The fox ate and ate until he was full!" When Nikki said these words he said, "Yes! That's right!" and laughed, and then repeated them.
I still think most of Joey's speech is scripted or echoed. I usually use "scripted" to mean that he knows what the words mean, and is trying to use previously-heard strings of words to convey meaning, sometimes quite successfully. "Echoed" means the words are empty, repeated because he has learned they are a proper response, but doesn't know what the exchange means; or he just likes the words and says them, perseverating on the sounds; or he is too upset to be able to recall the words he needs, so he repeats back anything his brain clings to, regardless of meaning. He is clever enough to sometimes mix strings, so that one half of the sentence is pulled from Little Bear while the second half is from Pinky Dinky Doo, but they are still just blocks and strings of words he has heard before.
The signs seem to be doing several things for Joey. They give him a visual cue, so that slow sound and language processing can be slightly bypassed. He understands what you are asking of him or telling him. They are also providing him a way to communicate spontaneously, without having to come up with spoken words. He gets very happy about this, like talking about the fox in the picture. He doesn't have to come up with scripted words for a new situation; he can go with signs, movements that he can apparently access better and faster.
So when Nikki was having a hard time getting him to sit an attend, she finally signed her request: sit please! He saw the signs, suddenly lit up, said, "Oh! Sit, please!" and sat down.
Sign language will probably never be Joey's primary form of communication. He speaks very well, and he's well on his way to reading. However, he seems to like it, and seems to be helping him catch on to concepts, and we;re going to try to focus on giving him signs he can use to talk to us, instead of a bunch of signs for us to boss him around with. He's so funny, sitting in front of a mirror, signing "fox" to himself and giggling. I need to get a mirror put up in his room.
I still think most of Joey's speech is scripted or echoed. I usually use "scripted" to mean that he knows what the words mean, and is trying to use previously-heard strings of words to convey meaning, sometimes quite successfully. "Echoed" means the words are empty, repeated because he has learned they are a proper response, but doesn't know what the exchange means; or he just likes the words and says them, perseverating on the sounds; or he is too upset to be able to recall the words he needs, so he repeats back anything his brain clings to, regardless of meaning. He is clever enough to sometimes mix strings, so that one half of the sentence is pulled from Little Bear while the second half is from Pinky Dinky Doo, but they are still just blocks and strings of words he has heard before.
The signs seem to be doing several things for Joey. They give him a visual cue, so that slow sound and language processing can be slightly bypassed. He understands what you are asking of him or telling him. They are also providing him a way to communicate spontaneously, without having to come up with spoken words. He gets very happy about this, like talking about the fox in the picture. He doesn't have to come up with scripted words for a new situation; he can go with signs, movements that he can apparently access better and faster.
So when Nikki was having a hard time getting him to sit an attend, she finally signed her request: sit please! He saw the signs, suddenly lit up, said, "Oh! Sit, please!" and sat down.
Sign language will probably never be Joey's primary form of communication. He speaks very well, and he's well on his way to reading. However, he seems to like it, and seems to be helping him catch on to concepts, and we;re going to try to focus on giving him signs he can use to talk to us, instead of a bunch of signs for us to boss him around with. He's so funny, sitting in front of a mirror, signing "fox" to himself and giggling. I need to get a mirror put up in his room.
Dinosaur Matching
Andy does not like to nap. Recently, we have decided to just feed him at 5 and put him in bed instead of trying to get a screaming mass into his room for a nap after lunch. He needs this because if he gets grumpy, he tends to hit first and ask questions later. I would work on a 2pm nap, which would work very well, except that I am rarely in the house at 2 o'clock because of Joey's therapies, and will not be in the house at 2 o'clock all summer long.
Taking him up at 5 includes his bath, where he misses his brother, then stories. IF he is still awake at 7 when we bring up Joey, he gets another story. They usually involve dinosaurs or Karma Wilson. I also have some fabric books I've sewn up, which he often uses as pillows.
As part of the dinosaur fascination (infatuation?) I have pinned up some pictures of dinosaurs on Andy's room. A good friend sent them to us a while ago. Andy was absolutely thrilled when he saw them. He likes to point at them and tell me what they all are- and since I have learned what they are, I can decipher his attempts at articulation. Practice makes perfect, right?
Yesterday I put Andy upstairs with some stories, but all was not well. Andy started to really lose it, so back up the stairs I went. What was wrong? All I could decipher was "Edmontonia!"
For those of you who may be dinosaur=challenged, and edmontonia is a type of ankylosaur- a tankish, armoured thing with shoulder spikes and a clubby tail. It happens to be one of Andy's favorites. He held out the fabric book I made, based on postage stamps of dinosaurs, open to the edmontonia page. He was inconsolable.
I went into the room and sat with him as he tried to explain the problem, in sentences that were completely unintelligible despite beautiful and meaningful inflection. Edmontonia... t-rex... allosaurus... diplodocus...
Then I realize he's pointing, not just waving his arm. I look down at the book. Then I look up at the wall, where he is pointing at the pictures. Though the backgrounds are different, the actual dinosaur is the same- the pictures are probably the stamps, and the book takes the dinosaur, and photoshops it into a brighter jungle backdrop. However, not all of the dinosaurs on the wall are in teh book- and vice versa. Edmontonia is in the book, so he is looking for it on the wall- and it isn't there.
Good news: Andy is matching!
Bad news: I have no idea where to get a picture of an edmontonia, much less the exact one in his book, to put on the wall.
Taking him up at 5 includes his bath, where he misses his brother, then stories. IF he is still awake at 7 when we bring up Joey, he gets another story. They usually involve dinosaurs or Karma Wilson. I also have some fabric books I've sewn up, which he often uses as pillows.
As part of the dinosaur fascination (infatuation?) I have pinned up some pictures of dinosaurs on Andy's room. A good friend sent them to us a while ago. Andy was absolutely thrilled when he saw them. He likes to point at them and tell me what they all are- and since I have learned what they are, I can decipher his attempts at articulation. Practice makes perfect, right?
Yesterday I put Andy upstairs with some stories, but all was not well. Andy started to really lose it, so back up the stairs I went. What was wrong? All I could decipher was "Edmontonia!"
For those of you who may be dinosaur=challenged, and edmontonia is a type of ankylosaur- a tankish, armoured thing with shoulder spikes and a clubby tail. It happens to be one of Andy's favorites. He held out the fabric book I made, based on postage stamps of dinosaurs, open to the edmontonia page. He was inconsolable.
I went into the room and sat with him as he tried to explain the problem, in sentences that were completely unintelligible despite beautiful and meaningful inflection. Edmontonia... t-rex... allosaurus... diplodocus...
Then I realize he's pointing, not just waving his arm. I look down at the book. Then I look up at the wall, where he is pointing at the pictures. Though the backgrounds are different, the actual dinosaur is the same- the pictures are probably the stamps, and the book takes the dinosaur, and photoshops it into a brighter jungle backdrop. However, not all of the dinosaurs on the wall are in teh book- and vice versa. Edmontonia is in the book, so he is looking for it on the wall- and it isn't there.
Good news: Andy is matching!
Bad news: I have no idea where to get a picture of an edmontonia, much less the exact one in his book, to put on the wall.
Monday, June 04, 2007
Slumber Party!!!
It is bedtime here. Usually that means time for a fun bubble bath. Joey likes spraying his own hair and shampoos his own head, and will even now brush his own teeth (we do this in the bathtub, because I introduced the new spinning toothbrushes there when I thought sure they would be a flop- but they are a hit, and now toothbrushing is part of a bath. As long as the teeth get brushed, what harm is there?). He usually complains that the water is too hot, but otherwise happily splashes away Joey loves water. The other one screams about any water touching his head, likes the head rub as mommy shampoos the head, then screams again for the rinse. He then does his best to drink as much bathwater as he can before being removed from teh tub to complain about being wet. Andy likes water, as long as he doesn't notice any on him. (Remember, Andy is supposed to be my NT one...)
We then get into pajamas with much help from mom (remember trying to put on pajamas while damp?) and have a story. We managed, barely, to get through Charlotte's Web chapter-by-chapter; usually we just do a picture book. Then a rousing rendition of our favorite bedtime songs, including Old MacDonald's Dinosaur Farm (how may dinosaurs can you name and provide a sound effect for?), and then we separate to our rooms for bed.
Unless we declare Slumber Party.
Slumber party is declared when Joey, who usually insists someone (meaning me) remain seated in the chair in his room until he falls asleep, dismisses said parental unit with a firm "Mommy go away now." Then I am stared down until I get up and leave. Joey then starts his CD player, and the fun begins!
First, Andy must be released from his room. Then there is a jolly time of squealing and flopping into bean-bag chairs and joyous jumping on beds. usualy a tickle-fight is included, a well as occasionally checking on the parental units in their room (to be sure they are still safely installed at their laptops.)
Sometimes we get surprise kisses, or a boy coming in to "scare" us, or other fun games.
When it gets dark, it is finally time to settle in and go to sleep- the slumber party is over.
Sometimes its fun to think you are getting away with something.
We then get into pajamas with much help from mom (remember trying to put on pajamas while damp?) and have a story. We managed, barely, to get through Charlotte's Web chapter-by-chapter; usually we just do a picture book. Then a rousing rendition of our favorite bedtime songs, including Old MacDonald's Dinosaur Farm (how may dinosaurs can you name and provide a sound effect for?), and then we separate to our rooms for bed.
Unless we declare Slumber Party.
Slumber party is declared when Joey, who usually insists someone (meaning me) remain seated in the chair in his room until he falls asleep, dismisses said parental unit with a firm "Mommy go away now." Then I am stared down until I get up and leave. Joey then starts his CD player, and the fun begins!
First, Andy must be released from his room. Then there is a jolly time of squealing and flopping into bean-bag chairs and joyous jumping on beds. usualy a tickle-fight is included, a well as occasionally checking on the parental units in their room (to be sure they are still safely installed at their laptops.)
Sometimes we get surprise kisses, or a boy coming in to "scare" us, or other fun games.
When it gets dark, it is finally time to settle in and go to sleep- the slumber party is over.
Sometimes its fun to think you are getting away with something.
Sunday, June 03, 2007
Invited to play
We have a new, wonderful game here- Playing Cars. Joey gets out the little road/runway thing that came with a Fisher Price airport, finds some of his cars, and then gives one to Mommy saying, "Come play cars, Mommy!"
Intiiating social interaction. Appropriate language, appropriate play. And he's figured out that if he does this, the world stops and Mommy gets onto the floor and plays cars, even if she was cooking or working or doing some other thing Joey prefers I didn't do. Andy grabs a car, and there are the three of us, crashing cars together, or racing them, or just driving them around and getting our arms all tangled.
Sometimes the cars even talk to each other. Joey stops his car in front of my car and says, " Hello car, I'm Joey!" and Joey the Car makes a new friend.
Now that, my friends, is a miracle.
Intiiating social interaction. Appropriate language, appropriate play. And he's figured out that if he does this, the world stops and Mommy gets onto the floor and plays cars, even if she was cooking or working or doing some other thing Joey prefers I didn't do. Andy grabs a car, and there are the three of us, crashing cars together, or racing them, or just driving them around and getting our arms all tangled.
Sometimes the cars even talk to each other. Joey stops his car in front of my car and says, " Hello car, I'm Joey!" and Joey the Car makes a new friend.
Now that, my friends, is a miracle.
When to speak- what to say
I have two very important opportunities to advocate generally for autistics. I am the chair of the Parent Advisory Committee for our local special ed system, and I am also on the committee that is supposed to be training school personnel about autism. No one who is actually autistic is on either of these committees, yet both have a good deal of power over the lives of autistic children, and even some autistic adults (special ed can rule your life until you turn 23).
I have a friend who was appointed the chair of his department. He took it as the huge honor, that everyone must think so much of him. Itried my best to tell him that being chair of a department is not an honor- it often rotates like a hot potato among faculty members- it is an opportunity. You have your chance to do things your own way, to get your own ideas heard, to get things you think are important on the agenda.
Being chair of the advisory committee and being on this autism training committee are similarly opportunities. I can stand in front of the school board, the superintendant, the director of student services, the principals, the teachers, and say anything I want. Here is an opportunity- and a rsponsibility, What do I say? When do I say it?
So far, my message has been "disabled people are, first and foremost, people." When asked about curing autism and what stance the school should take regarding autism, this has been my answer: Autistic people are people. Treat them with the same respect you expect to receive. They have the same right to be educated that any non-autistic child has. They need the same opportunity to be independent and socially responsible that any non-disabled child has. If a normal child had trouble in reading, you'd provide tutoring, right? So what's the problem with providing the support a disabled child needs to succeed?
This message seemed to be supported by autistic people I knew in person, and was certainly supported by the other parents I know in the system (though admittedly, both are not extensive groups of people, and may not be respresentative.) This is the best I could do... until now.
And now I ask you... now that I have readers who are autistic, raising autistic children, been through the special ed system, and have a wide variety of persepctives of the message to send- if you have the ear of of all the powers-that-be of the school system, what would you say? (Politely, that is?)
I have a friend who was appointed the chair of his department. He took it as the huge honor, that everyone must think so much of him. Itried my best to tell him that being chair of a department is not an honor- it often rotates like a hot potato among faculty members- it is an opportunity. You have your chance to do things your own way, to get your own ideas heard, to get things you think are important on the agenda.
Being chair of the advisory committee and being on this autism training committee are similarly opportunities. I can stand in front of the school board, the superintendant, the director of student services, the principals, the teachers, and say anything I want. Here is an opportunity- and a rsponsibility, What do I say? When do I say it?
So far, my message has been "disabled people are, first and foremost, people." When asked about curing autism and what stance the school should take regarding autism, this has been my answer: Autistic people are people. Treat them with the same respect you expect to receive. They have the same right to be educated that any non-autistic child has. They need the same opportunity to be independent and socially responsible that any non-disabled child has. If a normal child had trouble in reading, you'd provide tutoring, right? So what's the problem with providing the support a disabled child needs to succeed?
This message seemed to be supported by autistic people I knew in person, and was certainly supported by the other parents I know in the system (though admittedly, both are not extensive groups of people, and may not be respresentative.) This is the best I could do... until now.
And now I ask you... now that I have readers who are autistic, raising autistic children, been through the special ed system, and have a wide variety of persepctives of the message to send- if you have the ear of of all the powers-that-be of the school system, what would you say? (Politely, that is?)
Another Article to Check Out
Have multiple autistic kids? There's no volume discount for therapy.
I still joke at the office where we get speech and OT for Joey that they need to get me a recliner- or better, a cot. And I only have one...
I still joke at the office where we get speech and OT for Joey that they need to get me a recliner- or better, a cot. And I only have one...
Saturday, June 02, 2007
Depression
This is one of my favorite pictures of my Joey.
The image is one that I draw up when things get especially hard. When we've had a screamy day and the school people are blowing me off and ETS isn't giving me enough work to pay the bills and friends are in troubled waters and the world seems to be spinning a little faster than usual. I've mentioned this picture elsewhere, on occasional comments on other blogs, it seems to be getting mentioned a lot lately. So here it is. The Image.
The large, round one is me. That's me, writing my dissertation. And that's my baby boy, fast asleep on me. He loved to sleep on me. He still likes a good snuggle.
When I was writing that dissertation, my world was very different. I knew where I was going and how I was going to get there, more or less. I had trained hard to be an academic. I would spend lovely jaunts in India looking at wonderful sites and objects, gain an understanding of how people lived, communicated, understood the world around them and expressed that understanding to each other. I would bring back presents that would make my little guy laugh and wonder about people who were different from him, who saw the world differently, who valued diferent things and dreamed different dreams. I would teach my little boy that there was more than one way to think about a problem, a pleasure, an experience; that there was more than one solution, more than one explanation, and these different ways of thinking, feeling, understanding could be tools for making his own sense of the cosmos. I would write wonderful books about people and the objects they made, the survivals of time and weather and cultural storm. I would stand in classrooms and share these visions and ideas with other young minds, and see where they could take thee ideas, what new thoughts could arise just by thinking in a new way, or from a new point of view. Yes, I was going somewhere. I was young. I'm still young for a PhD. I was ready. I had my dream in my pocket, and needed only for time to open out and unfold the events, so they could be savored, shared, and then committed to fond memory.
Academia is a funny place, especially if you're fool enough to take up an obscure field. The whole publish or perish thing is just one facet of the trouble. Children are a big no-no in most departments. Having a family is something reserved for folks in areas more popular with students (and therefore the faculty are in higher demand, and more allowances are made). Teaching experience can actually count against you; it only counts for you if you are also a prolific publisher. What prestige and funds will you bring to the college? That is the question. How many butts will you put into seats? How many donors are at your beck and call? Good teaching be damned, its all about the research. You don't have to be a good writer, you just have to be a published one. Quantity is far more important than quality.
I have a friend who is faculty over at the college while raising an Asperger's child. She's got the full-time gig. Her husband is also a prof. They both do an elaborate juggling act to be sure the children are supervised while they do their research, write their articles, teach their classes. It helps to be in subjects where travel is not a big deal. You can study English quite well without ever setting foot in England. Being full-time gives you more control over the schedule. I often stop to admire how well that family works together as a team to be sure things happen. The flexibility of the schedule is key- there is no way to maneuver through schedules of buses and therapists and hold a full-time, regular-hour job here. Respite and childcare that can handle an ASD child (or even WILL handle one) is practically non-existant without a medicaid waiver. I admire her greatly. She finds time to do her job, expand her work, and advocate for her son. That's a true wonder.
I hadn't secured a full-time gig before I had my guys. I'm an adjunct, when the local schools have money. I grade standardized tests, too, which is the best-paying gig I've got. There's been no time for much research, with running the guys to their appointments. I'm lucky if I get to shower. Trips to India? That's a laugh.
Back to the photo. A dissertation to nowhere. Such is the world I lost when I decided to be an advocate for my son. Not all parents make the choice I made. In fact, I find it disconcerting how few take up the challenge to support and advocate, and instead toss their kid at the school and say "fix it" then disappear. The ones that take up the challenge are always people of strength, fortitude, and often, attitude. Fighting everyone around you all the time is not for the faint-of-heart or weak-of-stomach. All the parents I know who are actually in there pitching are absolutely amazing people. I do my best to be like them. Such is the world I gained.
So this is also an image of what I gained in my life. I have a beautiful son. I hug him close whenever I get the chance. Boys tend to reach a point when they don't want hugs and kisses from Mommy anymore, so I get them in now while I can. Here is an image of the joys of being alive, the comforts of having my baby with me, my little buddy through thick and thin. Even on screamy days, he's my baby.
If I hold really still and think of this image, I can still feel the warm weight of him on my chest and belly, the little hand pulling on my shirt as it clutches at a button, the curve of a diapered bottom in my palm, the soft fuzz of hair, the even breathing sweet with milk. I could tip my head and kiss the top of his, lay my cheek against that little forehead and be instantly in heaven. One little nuzzle and the thoughts would untangle, the words arrange themselves according to thoughts, and sometimes the hand could keep up.
Did I give up my life? I admit there are some moments I wonder if I did. I certainly turned away from the world that was, and entered a whole differnt way of existing, and began to evolve a whole new way of thinking about the world, the cosmos, and my own place in it. Perhaps that is why Welcome to Holland speaks so well to me. I still have moments when I wonder what could-have-been. That old Two Roads in the Wood thing. Don't you ever wonder what was down that well-traveled lane? Even while you appreciate the wonders of the road you have actually taken?
The image is one that I draw up when things get especially hard. When we've had a screamy day and the school people are blowing me off and ETS isn't giving me enough work to pay the bills and friends are in troubled waters and the world seems to be spinning a little faster than usual. I've mentioned this picture elsewhere, on occasional comments on other blogs, it seems to be getting mentioned a lot lately. So here it is. The Image. The large, round one is me. That's me, writing my dissertation. And that's my baby boy, fast asleep on me. He loved to sleep on me. He still likes a good snuggle.
When I was writing that dissertation, my world was very different. I knew where I was going and how I was going to get there, more or less. I had trained hard to be an academic. I would spend lovely jaunts in India looking at wonderful sites and objects, gain an understanding of how people lived, communicated, understood the world around them and expressed that understanding to each other. I would bring back presents that would make my little guy laugh and wonder about people who were different from him, who saw the world differently, who valued diferent things and dreamed different dreams. I would teach my little boy that there was more than one way to think about a problem, a pleasure, an experience; that there was more than one solution, more than one explanation, and these different ways of thinking, feeling, understanding could be tools for making his own sense of the cosmos. I would write wonderful books about people and the objects they made, the survivals of time and weather and cultural storm. I would stand in classrooms and share these visions and ideas with other young minds, and see where they could take thee ideas, what new thoughts could arise just by thinking in a new way, or from a new point of view. Yes, I was going somewhere. I was young. I'm still young for a PhD. I was ready. I had my dream in my pocket, and needed only for time to open out and unfold the events, so they could be savored, shared, and then committed to fond memory.
Academia is a funny place, especially if you're fool enough to take up an obscure field. The whole publish or perish thing is just one facet of the trouble. Children are a big no-no in most departments. Having a family is something reserved for folks in areas more popular with students (and therefore the faculty are in higher demand, and more allowances are made). Teaching experience can actually count against you; it only counts for you if you are also a prolific publisher. What prestige and funds will you bring to the college? That is the question. How many butts will you put into seats? How many donors are at your beck and call? Good teaching be damned, its all about the research. You don't have to be a good writer, you just have to be a published one. Quantity is far more important than quality.
I have a friend who is faculty over at the college while raising an Asperger's child. She's got the full-time gig. Her husband is also a prof. They both do an elaborate juggling act to be sure the children are supervised while they do their research, write their articles, teach their classes. It helps to be in subjects where travel is not a big deal. You can study English quite well without ever setting foot in England. Being full-time gives you more control over the schedule. I often stop to admire how well that family works together as a team to be sure things happen. The flexibility of the schedule is key- there is no way to maneuver through schedules of buses and therapists and hold a full-time, regular-hour job here. Respite and childcare that can handle an ASD child (or even WILL handle one) is practically non-existant without a medicaid waiver. I admire her greatly. She finds time to do her job, expand her work, and advocate for her son. That's a true wonder.
I hadn't secured a full-time gig before I had my guys. I'm an adjunct, when the local schools have money. I grade standardized tests, too, which is the best-paying gig I've got. There's been no time for much research, with running the guys to their appointments. I'm lucky if I get to shower. Trips to India? That's a laugh.
Back to the photo. A dissertation to nowhere. Such is the world I lost when I decided to be an advocate for my son. Not all parents make the choice I made. In fact, I find it disconcerting how few take up the challenge to support and advocate, and instead toss their kid at the school and say "fix it" then disappear. The ones that take up the challenge are always people of strength, fortitude, and often, attitude. Fighting everyone around you all the time is not for the faint-of-heart or weak-of-stomach. All the parents I know who are actually in there pitching are absolutely amazing people. I do my best to be like them. Such is the world I gained.
So this is also an image of what I gained in my life. I have a beautiful son. I hug him close whenever I get the chance. Boys tend to reach a point when they don't want hugs and kisses from Mommy anymore, so I get them in now while I can. Here is an image of the joys of being alive, the comforts of having my baby with me, my little buddy through thick and thin. Even on screamy days, he's my baby.
If I hold really still and think of this image, I can still feel the warm weight of him on my chest and belly, the little hand pulling on my shirt as it clutches at a button, the curve of a diapered bottom in my palm, the soft fuzz of hair, the even breathing sweet with milk. I could tip my head and kiss the top of his, lay my cheek against that little forehead and be instantly in heaven. One little nuzzle and the thoughts would untangle, the words arrange themselves according to thoughts, and sometimes the hand could keep up.
Did I give up my life? I admit there are some moments I wonder if I did. I certainly turned away from the world that was, and entered a whole differnt way of existing, and began to evolve a whole new way of thinking about the world, the cosmos, and my own place in it. Perhaps that is why Welcome to Holland speaks so well to me. I still have moments when I wonder what could-have-been. That old Two Roads in the Wood thing. Don't you ever wonder what was down that well-traveled lane? Even while you appreciate the wonders of the road you have actually taken?
Or, in more direct words...
I always kind of thought that my role in the Hub is not as a leader of a movement, but as a parent. I am learning how to teach my own autistic child- still very, very young- to be able to function and advocate for himself. I can't do that unless I start discussing autism with actual autistic people, so I get a sense of what issues Joey will face, and start thinking about how he might cope with the special needs he has. It is also easier if I have other parents to speak with who understand the concept of acceptance, so that I can prepare for possible problems I will have in teaching Joey, in raising him to be an independent, socially responsible adult.
To what I am doing, it seems I have to fight everyone around me. Now, apparently, that includes autistic adults. That is highly discouraging- even depressing. I was already fighting the ones who clamor for a cure, but also the ones who say they are fighting for rights- including the right to be autistic?
Perhaps it should be considered that the Hub has lots of parents because we are also on that front line of advocating, and we want to get a better idea of what to advocate for. Once Joey turns 23, my rights to help him are greatly curtailed- especially if I am successful in teaching him.
I've got enough people trying to fight me and fight my child. I really didn't need more.
To what I am doing, it seems I have to fight everyone around me. Now, apparently, that includes autistic adults. That is highly discouraging- even depressing. I was already fighting the ones who clamor for a cure, but also the ones who say they are fighting for rights- including the right to be autistic?
Perhaps it should be considered that the Hub has lots of parents because we are also on that front line of advocating, and we want to get a better idea of what to advocate for. Once Joey turns 23, my rights to help him are greatly curtailed- especially if I am successful in teaching him.
I've got enough people trying to fight me and fight my child. I really didn't need more.
Friday, June 01, 2007
Another Day, Another Can of Worms: To the Autism Hub
I write today thinking about the increasingly... spirited?... discussion on other Autism Hub blogs about neurodiversity as a movement. United we stand. Divided... not so much fun.
I was not invited to join the Hub- I tracked down who owned it and asked to join. I am glad to be here, though I doubt I'll be nominated anytime soon for any "thinking awards" or that anyone will track me down to ask me to write a book. Well, not about Autism, at any rate, nor anything based on this blog. I'm not the best writer on the planet. Call me a selfish little piggie if you like, but I joined for me- because the blogs I liked to read all had that noble mark of the Autism Hub. Because I wanted to be part of the community that seems to be centered here.
Perhaps because I "grew up" playing MUDs and connecting through text on a screen, the whole online thing come to me as a sense of spaces, cozy little wizard domains where we set up shop according to our own gifts and use our workroom-blogs to try to share a little of our favorite talents and thoughts with those we have invited in- in this case, everyone. I like visiting you all. I sometimes wish I had some of the wonderful talents you all seem to have. It feels like meandering over to different people's houses to hang out with a cup of something yummy on a very comfy couch, and seeing what everyone is up to today. It's like going down to the Hay when I was college, getting some strawberries with z-cream (or fresh carrot cake! Yum!), finding the best couch by the window (since I was the only one who didn't smoke, I needed a window), maybe flipping through the nearest shelf of used books to see if there wa anything new and interesting, and seeing who showed up today. There was a basic core crowd that usually showed up, and then the drifters who sometimes showed up, and the fringes who you remembered when they did show up, but they usually had other lives that kept them too busy to come much. I was always glad to see everyone. They all had such interesting stories and lives and thoughts and dramas. I still wonder what happened to those people. They don't let people smoke at the Hay anymore. It has a grill now, new premises, a juice bar thing; I don't think they sell books anymore. Gone are the comfy couches that drew us together and gave us a livingroom- or was it a family room? away from home.
Being the mom just starting the adventure of supporting an autistic son, I spend most of my Hub time following the blogs and lives of others with autistic children. There is a comfort in reading the speech patterns of Whitterer's kids, who seem so very verbal to me, and seem so close to Joey's. There is hope for more communication from my own baby when I read about these guys. Besides, who else knows that "goldfish" is a food group? There is also comfort at Club166, who has been there, done that with the IEP nightmare. Kristina is always offering great information and solid advice. Big White Hat provides an air of southern charm and gentility to the whole thing. I could go on. You probably get the picture.
That's right: I am one of those "parents." Ignored and even actively disenfranchised by the school system that is supposed to be helping my child, taunted by many of the parents around me because I don't declare thimerosal to be the Work of the Beast and chelation to be the Salvation of Us All, and bounced between therapists and specialists who can't seem to agree on what exactly Joey may or may not need, the Hub is a place where I can pull myself together on a Screamy Day and remember I'm not the only person doing this. That I'm not crazy thinking my kid is, first and foremost, a kid, and should be treated with respect and dignity- the same treatment other children seem to get from people as a matter of course. Here is a place to access what others are thinking and feeling, especially adults who face the challenges of autism directly, and with courage, strength, and even pride, so that they can enjoy their talents- like everyone else. Here are people, autistic or otherwise, whom I hope my children (both of them) can and will look up to and try to emulate, learn from, and remember all of their lives.
Yep. Plenty of comfy couches here. There's food in the fridge. You know where the drinks are. Make yourself at home.
I was not invited to join the Hub- I tracked down who owned it and asked to join. I am glad to be here, though I doubt I'll be nominated anytime soon for any "thinking awards" or that anyone will track me down to ask me to write a book. Well, not about Autism, at any rate, nor anything based on this blog. I'm not the best writer on the planet. Call me a selfish little piggie if you like, but I joined for me- because the blogs I liked to read all had that noble mark of the Autism Hub. Because I wanted to be part of the community that seems to be centered here.
Perhaps because I "grew up" playing MUDs and connecting through text on a screen, the whole online thing come to me as a sense of spaces, cozy little wizard domains where we set up shop according to our own gifts and use our workroom-blogs to try to share a little of our favorite talents and thoughts with those we have invited in- in this case, everyone. I like visiting you all. I sometimes wish I had some of the wonderful talents you all seem to have. It feels like meandering over to different people's houses to hang out with a cup of something yummy on a very comfy couch, and seeing what everyone is up to today. It's like going down to the Hay when I was college, getting some strawberries with z-cream (or fresh carrot cake! Yum!), finding the best couch by the window (since I was the only one who didn't smoke, I needed a window), maybe flipping through the nearest shelf of used books to see if there wa anything new and interesting, and seeing who showed up today. There was a basic core crowd that usually showed up, and then the drifters who sometimes showed up, and the fringes who you remembered when they did show up, but they usually had other lives that kept them too busy to come much. I was always glad to see everyone. They all had such interesting stories and lives and thoughts and dramas. I still wonder what happened to those people. They don't let people smoke at the Hay anymore. It has a grill now, new premises, a juice bar thing; I don't think they sell books anymore. Gone are the comfy couches that drew us together and gave us a livingroom- or was it a family room? away from home.
Being the mom just starting the adventure of supporting an autistic son, I spend most of my Hub time following the blogs and lives of others with autistic children. There is a comfort in reading the speech patterns of Whitterer's kids, who seem so very verbal to me, and seem so close to Joey's. There is hope for more communication from my own baby when I read about these guys. Besides, who else knows that "goldfish" is a food group? There is also comfort at Club166, who has been there, done that with the IEP nightmare. Kristina is always offering great information and solid advice. Big White Hat provides an air of southern charm and gentility to the whole thing. I could go on. You probably get the picture.
That's right: I am one of those "parents." Ignored and even actively disenfranchised by the school system that is supposed to be helping my child, taunted by many of the parents around me because I don't declare thimerosal to be the Work of the Beast and chelation to be the Salvation of Us All, and bounced between therapists and specialists who can't seem to agree on what exactly Joey may or may not need, the Hub is a place where I can pull myself together on a Screamy Day and remember I'm not the only person doing this. That I'm not crazy thinking my kid is, first and foremost, a kid, and should be treated with respect and dignity- the same treatment other children seem to get from people as a matter of course. Here is a place to access what others are thinking and feeling, especially adults who face the challenges of autism directly, and with courage, strength, and even pride, so that they can enjoy their talents- like everyone else. Here are people, autistic or otherwise, whom I hope my children (both of them) can and will look up to and try to emulate, learn from, and remember all of their lives.
Yep. Plenty of comfy couches here. There's food in the fridge. You know where the drinks are. Make yourself at home.
Thursday, May 31, 2007
Kindergarden Readiness
Next week we do another turn on the IEP dance floor. This is a biggie. We change fromt eh world of preschool to that looming unknown of kindergarden. Real school. SOLs. Full day education.
This was the fall I was supposed to put my little boy on a big yellow school bus for the first time. Instead, it will be our fourth year- old hat. It will just happen earlier in the morning. I actually remember the first time I got on a school bus. The morning was cool and dewy, and I had on a jumper and red checked shirt that I dearly loved, it was really comfortable, and shoes that weren't so much. I can still smell it, the metallic damp of the bus and the plastic seats that were too hard to really get comfortable on. Joey loves riding the bus. It will be a comfort as we send him off into a new world.
It won't be completely new, though. We're probably going to go ahead and put him in the summer program the schol cooked up on the fly; it will give him a chance to get used to the new building, and provide him a very regular schedule or most of the summer. The point is to not have him freak out for months and waste more time at school than absolutely necessary. Maximize the learning, that sort of thing.
We decide the setting Joey will be in. Will we put him in the self-contained classroom, with the spectacular teacher, lower student: faculty ratio, but not as much exposure to non-disabled peers? Or do we try to press for LRE, despite the teacher being lukewarm and no aide available? The school personnel find his "behaviors" disruptive, so they want him in self-contained; but how much of it discrimination against his way of expressing himself, and how much is really of concern? So what if he tracks instead of giggling with his classmates when he's bored? Shouldn't it be the BOREDOM that is addressed, not my son's way of expressing it? Its not like he's hurting anyone.
My private OT is coming to the meeting. She's as unhappy as I am with the OT situation at school. The OT is the only person that holds over from the preschool; she's the only OT in the system. With all the kids they now know need OT services, you'd think that they'd start hiring OTs, just like they now have several SLPs. But no- we're stuck. So I'll bring an actual professional to help us determine goals.
I also have located a few online resources for determining "kindergarden readiness." Why these weren't pulled out when I was asking about what skills he needed for kindergarden back in September, I have no idea- they are right off the VDOE website- but that's all water under the bridge now. I have these tools now, to take with me and ask about. "He can't sit and listen to a story for ten minutes. He can't tell you his first and last name. He can't button his own clothes. These are skills VDOE says are signs of kindergarden readiness. How will you be addressing these issues?"
As usual, they will probably try to fluster everything and say they are being addressed in goals that sound vaguely connected to these skills, while missing the point. Then they'll tell me they know best, since they are professionals, and have been working with him for three years now. And it will all be so that they only provide what they absolutely must, and at their own convenience.
It's going to be a long week.
This was the fall I was supposed to put my little boy on a big yellow school bus for the first time. Instead, it will be our fourth year- old hat. It will just happen earlier in the morning. I actually remember the first time I got on a school bus. The morning was cool and dewy, and I had on a jumper and red checked shirt that I dearly loved, it was really comfortable, and shoes that weren't so much. I can still smell it, the metallic damp of the bus and the plastic seats that were too hard to really get comfortable on. Joey loves riding the bus. It will be a comfort as we send him off into a new world.
It won't be completely new, though. We're probably going to go ahead and put him in the summer program the schol cooked up on the fly; it will give him a chance to get used to the new building, and provide him a very regular schedule or most of the summer. The point is to not have him freak out for months and waste more time at school than absolutely necessary. Maximize the learning, that sort of thing.
We decide the setting Joey will be in. Will we put him in the self-contained classroom, with the spectacular teacher, lower student: faculty ratio, but not as much exposure to non-disabled peers? Or do we try to press for LRE, despite the teacher being lukewarm and no aide available? The school personnel find his "behaviors" disruptive, so they want him in self-contained; but how much of it discrimination against his way of expressing himself, and how much is really of concern? So what if he tracks instead of giggling with his classmates when he's bored? Shouldn't it be the BOREDOM that is addressed, not my son's way of expressing it? Its not like he's hurting anyone.
My private OT is coming to the meeting. She's as unhappy as I am with the OT situation at school. The OT is the only person that holds over from the preschool; she's the only OT in the system. With all the kids they now know need OT services, you'd think that they'd start hiring OTs, just like they now have several SLPs. But no- we're stuck. So I'll bring an actual professional to help us determine goals.
I also have located a few online resources for determining "kindergarden readiness." Why these weren't pulled out when I was asking about what skills he needed for kindergarden back in September, I have no idea- they are right off the VDOE website- but that's all water under the bridge now. I have these tools now, to take with me and ask about. "He can't sit and listen to a story for ten minutes. He can't tell you his first and last name. He can't button his own clothes. These are skills VDOE says are signs of kindergarden readiness. How will you be addressing these issues?"
As usual, they will probably try to fluster everything and say they are being addressed in goals that sound vaguely connected to these skills, while missing the point. Then they'll tell me they know best, since they are professionals, and have been working with him for three years now. And it will all be so that they only provide what they absolutely must, and at their own convenience.
It's going to be a long week.
Wednesday, May 30, 2007
Allergist
For those following along, the allergist says Joey isn't allergic to anything. The improvements we saw with the prednisone are not connected with allergic anything. The rash he's had since the day he was born is "follicular"- it seems to be following his hair follicles- and isn't itchy, so that's not an allergy. According to the allergist. He says to give the kid eggs, and if the rash comes back, pop an anthisthamine into his mouth, and if he gets better in 2-3 hours, then call the doc back; but otherwise, just tell our docs.
I did tell our docs. They told me to make an appointment with the allergist.
And so it goes.
I did tell our docs. They told me to make an appointment with the allergist.
And so it goes.
Tuesday, May 29, 2007
Lockdown
Well, the day came we were hoping wouldn't.
Over the weekend, Joey and I went for a walk. We were sort of heading for the Memorial Day Illumination, but instead we met some of teh kids across the street and had some impromptu social interaction. Joey really enjoyed himself, and the trucks, and the bikes, and the kids, and can't wait until we "go for a walk" again. I also had fun, because I actually got to talk to other moms and dads, some of which have been int eh neighborhood a while, and I've never spoken to. Crossing the street is a big deal with two small kids, and we don't do it very much.
Today, he kept talking about a blue truck. He has lots of trucks and cars, and every time we found one that was blue, it was offered, and turned down. After speech, I took the baby upstairs for a nap, and mom took Joey outside for a ride on the tricycle, where I joined them, and yet another round of "want blue truck." He opened the back door and went into the house. "Are you getting your truck?" I asked casually. "Yes," he replied, and into the house he went.
Mom and I chatted abotu some local news, friends not doing so well, the allergist appointment tomorrow. The doorbell rang.
Not expecting anyone, I looked up. I can se right through the house from where I was sitting, back door to front- it is one of the reasons I habitually sit there. The door was open. A woman was coming into the house, following Joey. It was an odd sight, and about fifteen things raced through my mind- how did Joey get the door open? Who is this? Did we have therapy today and I forgot? No, its Tuesday. And why did they come to the door? Is Joey letting a stranger into the house? Does she need help?
I was to the door when my brain turned on and recognized my across-the-street neighbor, and the words emerging from her mouth. You guessed it, didn't you?
"He was in the middle of the street..."
Heading across the street, to get the blue truck he had played with days ago, which actually belonged to the little boy whose mother was telling me that she asked Joey where his mommy was, and he had said, "outside" but she didn't see me, so she brought him back across the street...
He was in the middle of the street.
My street is not a hustle-bustle big city disaster, but it is a bit of an artery across town, often taken slightly too fast by us townies. He could have very easily have been hit.
We lock our doors out of habit mostly, from living in places liek Charlottesville, where people were known to walk into homes while people were home and steal stuff or attack them. With Joey's new and unpredictable fondness for wandering off, we have taken this habit to heart. Usually we keep the key to the front door on a high hook. He can work keys, but since he can't reach the key, this has been our current compromise of keeping him locked down, while not being a major fire hazard. However, my mom had left her keys in the lock while she watched Andy (while Joey and I went to therapy). Those keys remained in the lock when I came home. Joey wanted to go across the street to get the truck, so he just turned the key and was gone.
The main problem now is that the back door does not have the double-key bolt, and he can work all the locks and latches I added to it now. Worse, he has actual motivation to leave the house, and determination to do so= we'll hear about this truck for days, maybe weeks. He has a reason to go across the street, and no concept of improper hour of night, danger of the street, and despite our best efforts and lectures, no concept of the reasons he can't just go across the street, walk into someone's house, and get what he thinks is his.
The locksmith comes on Friday. Until then, we have barricaded the back door. We're also seriously looking into alarms. At least we'd know if he opened a door.
Over the weekend, Joey and I went for a walk. We were sort of heading for the Memorial Day Illumination, but instead we met some of teh kids across the street and had some impromptu social interaction. Joey really enjoyed himself, and the trucks, and the bikes, and the kids, and can't wait until we "go for a walk" again. I also had fun, because I actually got to talk to other moms and dads, some of which have been int eh neighborhood a while, and I've never spoken to. Crossing the street is a big deal with two small kids, and we don't do it very much.
Today, he kept talking about a blue truck. He has lots of trucks and cars, and every time we found one that was blue, it was offered, and turned down. After speech, I took the baby upstairs for a nap, and mom took Joey outside for a ride on the tricycle, where I joined them, and yet another round of "want blue truck." He opened the back door and went into the house. "Are you getting your truck?" I asked casually. "Yes," he replied, and into the house he went.
Mom and I chatted abotu some local news, friends not doing so well, the allergist appointment tomorrow. The doorbell rang.
Not expecting anyone, I looked up. I can se right through the house from where I was sitting, back door to front- it is one of the reasons I habitually sit there. The door was open. A woman was coming into the house, following Joey. It was an odd sight, and about fifteen things raced through my mind- how did Joey get the door open? Who is this? Did we have therapy today and I forgot? No, its Tuesday. And why did they come to the door? Is Joey letting a stranger into the house? Does she need help?
I was to the door when my brain turned on and recognized my across-the-street neighbor, and the words emerging from her mouth. You guessed it, didn't you?
"He was in the middle of the street..."
Heading across the street, to get the blue truck he had played with days ago, which actually belonged to the little boy whose mother was telling me that she asked Joey where his mommy was, and he had said, "outside" but she didn't see me, so she brought him back across the street...
He was in the middle of the street.
My street is not a hustle-bustle big city disaster, but it is a bit of an artery across town, often taken slightly too fast by us townies. He could have very easily have been hit.
We lock our doors out of habit mostly, from living in places liek Charlottesville, where people were known to walk into homes while people were home and steal stuff or attack them. With Joey's new and unpredictable fondness for wandering off, we have taken this habit to heart. Usually we keep the key to the front door on a high hook. He can work keys, but since he can't reach the key, this has been our current compromise of keeping him locked down, while not being a major fire hazard. However, my mom had left her keys in the lock while she watched Andy (while Joey and I went to therapy). Those keys remained in the lock when I came home. Joey wanted to go across the street to get the truck, so he just turned the key and was gone.
The main problem now is that the back door does not have the double-key bolt, and he can work all the locks and latches I added to it now. Worse, he has actual motivation to leave the house, and determination to do so= we'll hear about this truck for days, maybe weeks. He has a reason to go across the street, and no concept of improper hour of night, danger of the street, and despite our best efforts and lectures, no concept of the reasons he can't just go across the street, walk into someone's house, and get what he thinks is his.
The locksmith comes on Friday. Until then, we have barricaded the back door. We're also seriously looking into alarms. At least we'd know if he opened a door.
Monday, May 28, 2007
Everybody into the pool!
'Tis the season for getting the water out, watching Joey splash about with glee, then simply pick up his feet so his bottom hits the water, sending half the pool to the grass. It is also the season for Andy to jump in, sit in the water, get out, and complain that he's wet.
Saturday, May 26, 2007
IEP Analogy collection: A Plea
As we enter the thick of the IEP season, especially if your kid is transitioning to a new school (why do they put those off to LATER?), I thought it would be fun to have an "IEP Analogy" collection. Let me know the link to your favorite "An IEP meeting is like..." or "An IEP is like..." (or your local equivalent) blog, article, whatever, and we can all have a good laugh. It will keep us all from screaming.
Thursday, May 24, 2007
Views of my garden
Welcome to my garden. We hope you enjoy the scent of spring roses!
When we moved into this house, there was no garden. The people before us had two large dogs, and when you have two large dogs in a fenced yard, there's usually not much left. The garden actually blooms in waves. It starts with crocus and early daffodils, then opens out with forsythia, later daffodils, and tulips that fade into lilacs. The roses are next, with my Sarah Bernhardt peony and the mockorange. The yard is filled with wafting perfumes. I chose most of the roses because they have a mass effect now, but also continue throughout most of the summer with "pops"- that is, a few flowers all the time. The lilacs become a green backdrop to highlight the rose blooms. I have some iris that come out just before now (to fill the gap betwen lilac and rose), but I need more. I lost several across the back of the yard when my fence was damaged in Isabel. I've also put some poppies in, but they don't last long. I used to have blackberries to line the side, but last year I lost them- I think the folks next door used weedkiller (the blackberries are thornless, but the raspberries are not, and they probably got a few vines on their side of the fence.) Next will be a spirea, and the raspberries will be blooming- not as well as usual, because of the strange and suspicious "blight" from last summer, but the raspberries are at least tryign to come up. Considering the price of raspberries, you'd think free ones would be welcome, but... no accounting for tastes. Anyhoo, the bee balm will be out about then, too. then the daylillies should start, and the finally the dahlias and morning glory. Fall should have another round of mass effect from some of the roses, too. For winter, I have the hollies and winterberries. 
The garden is also designed for other scents, textures. I keep thyme and mint throughout, so it will smell good as the boys run about. I have some other shurbs not famous for bloom, but for foliage; my purpe dragon plant, a verigata, sedum. the poppies have added an interesting texture, I wish they bloomed longer.
Lately I haven't been able to get things done in the garden like I would like. I have a lot of mulching to do. More weeding than I could ever do. The virginia creeper is taking over the fence. At least the boys like dandelions and clover!
I used to like to pictures of Joey in the garden. I still like to take pics of the boys in the garden, but when Joey was little, he seemed like a little flower fairy. His little fingers would pluck at the roses and the grasses. He sat up by himself and squealed himself silly while his daddy made faces and funny noises. He loved to crawl through the grass, exploring this new little world full of life and springtime. He never liked to look up. The sky is a big thing- the world is a huge space.
Andy was afraid of the garden itself. He didn't want Mom and Dad to leave him in the grass, The world, even in the garden, was too big. But he soon discovered that outside was someplace full of wonders- especially birds. He looked up at them and pointed to them like Joey never did. He discovered bee-chasing. He discovered ants. The world around him was full of living things!
It always strikes me that they were noth attracted to the life around them, even if different ways and forms.
Once Upon A Time
Ten years ago, on this day, I was getting married to the most wonderful, huggable, laugh-and-enjoy-life guy in the world. Our ceremony took 11 minutes. We wrote it ourselves. The party lasted about five hours before moving to the motel, where it lasted another four hours. My grandfather walked me down the isle. My other grandfather actually had some cake for the occasion. Both are now gone. It was the last time I ever danced with my brother. For our "first dance" as husband and wife, we chose "Touch Me" by the Doors. The shot of us dancing is still my favorite picture of us.
Nine years ago, on this day, I was opening boxes and trying to get the kitchen settled in our new house. This house. Two years later, we could not have been able to buy it. The torn-up mess of a yard is now landscaped and full of roses, and usually happy boys. The kitchen cabinets and counter desperately need replacing. Kitties still twine furry bodies around the spindles in the dining room.
Five years ago today, I was nursing my firstborn, my Joey, often while watching Ground Force or Changing Rooms on BBC America, sitting in my grandfather's chair. My grandfathers never met Joey. Neither has my brother.
Four years ago today, I was at Ocean City with my husband, eating Thrasher's French Fries, Fisher's Popcorn, and Dolle's taffy, while playing so much at Marty's Playland that I actually won a big prize: a Christmas Goose. It was teh only time we have been together overnight, just Allan and I, since Joey was born. He stayed with Mom, and they had a lot of fun having a weekend slumber party.
Three years ago today, I came home from the hospital with my Andy. I was a new PhD, only a week and a half before. Again, we were nursing, but this time with less TV- I had Joey to keep my eyes on. I managed to do a lot of needlepoint.
Two years ago today, Joey had 25 words. Andy had been walking for two days.
One year ago today, Joey was singing "Waltzing Mathilda" (if you could make out the words at all), spelling his name, and dreaming of the Beach. Andy started speaking in sentences.
And they lived happily ever after.
Nine years ago, on this day, I was opening boxes and trying to get the kitchen settled in our new house. This house. Two years later, we could not have been able to buy it. The torn-up mess of a yard is now landscaped and full of roses, and usually happy boys. The kitchen cabinets and counter desperately need replacing. Kitties still twine furry bodies around the spindles in the dining room.
Five years ago today, I was nursing my firstborn, my Joey, often while watching Ground Force or Changing Rooms on BBC America, sitting in my grandfather's chair. My grandfathers never met Joey. Neither has my brother.
Four years ago today, I was at Ocean City with my husband, eating Thrasher's French Fries, Fisher's Popcorn, and Dolle's taffy, while playing so much at Marty's Playland that I actually won a big prize: a Christmas Goose. It was teh only time we have been together overnight, just Allan and I, since Joey was born. He stayed with Mom, and they had a lot of fun having a weekend slumber party.
Three years ago today, I came home from the hospital with my Andy. I was a new PhD, only a week and a half before. Again, we were nursing, but this time with less TV- I had Joey to keep my eyes on. I managed to do a lot of needlepoint.
Two years ago today, Joey had 25 words. Andy had been walking for two days.
One year ago today, Joey was singing "Waltzing Mathilda" (if you could make out the words at all), spelling his name, and dreaming of the Beach. Andy started speaking in sentences.
And they lived happily ever after.
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