After the success of Sunday, we again turned our faces to my Aunt and Uncle's house, and the glories of the pool and the cousins. (Sorry about no pics yet, my hard drive is running short of space, to soon be remedied). It was to be a fine day of fall gardening, relaxing in the pool, and playing with cousins. The perfect adventure.
We tool down the road in good time, stop for breakfast, then stop for gas at the 1/3-way point. We have to cross the Potomac on 301, and I want to be sure we have a nice potty break before crossing into the world of Southern Maryland- it will be a good half-hour before we reach more civilization after leaving the little corner and the safety of its WaWa. We pull out, and toodle down the road. All is good.
Now, there are two ways to get to my Uncle's house. There is a rather straightforward way up I-95, then cut over to 301 from there, but it requires a ride over the Wilson Bridge, a total nightmare, and not a lot of places to stop quickly if Joey feels unwell, which he has been doing more of lately. The longer but pleasanter way is down 301 over the Nice Bridge, with plenty of place to pull over, even the shoulder of the road is reasonably safe if need arises. It's also much prettier, with more to point out to the boys, and plenty of family history to talk about along the way.
Toodle, toodle, toodle. What are all those cars doing up there? Why are they stopped?
Oh, no. Accident on the bridge.
301 might be great if you have to pull over, but turning around? Not so great. Now, better than if there was a problem on 95; but there are other ways to get up the 95 corridor, such as route 1. But once on 301, getting back to 95 is an hour venture, plus we'd be back to the start of our journey. Yeeps. Eeps. Erk. Once on 301, you are stuck on 301. There are not parallel roads to turn on to and skirt the disaster. besides, the disaster is the Bridge. On either road, no "alternate route" in the world will help if the bridge is down. There isn't a close alternate bridge.
So we are stuck. For an hour and a half.
Also, 301 at this point sits right next to Dahlgren. For my non-locals, Dahlgren is a military installation that works on missiles and other fun technologies of destruction. Hence, the area is a cell phone dead zone. I can't even call to tell my Uncle what has happened, and why we are running late.
And I have my poor mom with me. Now, this Uncle is my father's brother, but they've been so insistent in asking about her that she decided to join me for the visit. Also, I have two small boys in the car.
And one of them has decided he needs the potty. Now.
One of the good things about having small boys is their keen ability to pee in a cup. A large-sized McDonald's cup, specifically.
Twice.
I hopped out of the car at one point and fetched our crayons and coloring sheets form the back of the van. That bought us some time. We sang songs. We read books. I did some needlepoint. We finally got across the bridge.
First item up for bids was getting a potty for Mommy, who had to drink a very large McDonald's soda in order to provide a cup for other necessities. Then we had to pull over and let the boys run for a minute, as they were going INSANE. Then we still had another hour to drive. Oh, and now it was after noon, and lunch awaited us at the end of that further hour- an hour and half late eating does not make for happy boys.
Yes, it was a joyful ride. One babbling away, the other demanding silence and any toy Joey put his hand to. Mom didn't say much. It was hard to hear one's self think, which is required to form conversation.
But at long last, we arrived, and there was much rejoicing. And much swimming in the pool, despite it being C O L D. And much running of the cousins. Not much gardening. And a smooth ride home, with Andy sleeping most of the way.
But oh, the adventure!
Friday, August 22, 2008
Thursday, August 21, 2008
A Jump In Measles
Looks like there has been a jump in measles outbreaks this year- up from the normal one per yea, to seven already. The majority of the cases are in unvaccinated children.
I especially "liked" the part about doctors being frustrated about people questioning vaccination due to info from television shows. If you don't vaccinate your kid because of something you heard on a tv show, please keep your kid away from my kid. Even vaccines aren't 100% effective, and your kid getting a disease vastly increases the chances of my kid- even with vaccinations- getting sick.
I especially "liked" the part about doctors being frustrated about people questioning vaccination due to info from television shows. If you don't vaccinate your kid because of something you heard on a tv show, please keep your kid away from my kid. Even vaccines aren't 100% effective, and your kid getting a disease vastly increases the chances of my kid- even with vaccinations- getting sick.
Last Day: ESY
Today is my son's last day as a kindergardener. In one week, he will be a first grader.
Wow. I'm the mom of a first-grader.
How did that happen?
I sent him off with his backpack and his snack, in the shirt he picked out himself this morning. He put on all his clothes himself. He got his own water from the fridge this morning, after he was done with his juice.
My baby is getting all growed up!
Wow. I'm the mom of a first-grader.
How did that happen?
I sent him off with his backpack and his snack, in the shirt he picked out himself this morning. He put on all his clothes himself. He got his own water from the fridge this morning, after he was done with his juice.
My baby is getting all growed up!
Tuesday, August 19, 2008
When life gets you down...
Just tell it all to Steve.
Or post a comment. I'm happy to listen, too. :)
Or post a comment. I'm happy to listen, too. :)
Monday, August 18, 2008
New Designs
The holiday season will soon be upon us. By special request, especially by my aunt, I have a new series of designs for the shop. I have Family, Mom, Dad, Grandma, Grandpa, Aunt, and Uncle up. If you guys want something else, just let me know and I'll tweak it and get it up for you!
Sunday, August 17, 2008
Issues of Food
Joey is getting a little round. There is no getting around it: I suck as a nutritionist. Trying to take control of what Joey eats has been elusive. His love of mac and cheese does not help.
Joey normally eats both breakfast and lunch at school. The teachers use these meals to help Joey with important skills. He must ask for a tray. He must stand in line. He must communicate with the lunch ladies. He must offer his card to pay for his lunch. He must learn to eat different foods. I could go on.
So I looked up the rules about food programs in Virginia, and what is supposed to be served, because to be honest, it all looks like junk food to me: poptarts, chicken nuggets, spaghetti, potatoes, muffins. How many carbs are they supposed to be pushing on my kid?
The school lunch program is required to provide 1/3 of my child’s daily recommended intake of protein, certain vitamins and minerals, and calories. No more of 30% of the calories can be from fat, and no more that 10% of saturated fat.
The school breakfast program is to provide ¼ of these things (INCLUDING PROTEIN… how do muffins provide protein, exactly?), including calories.
All of this is based on the federal dietary guidelines. According to those guidelines (2005), Joey should be eating 1400 calories if sedentary, 1400-1600 calories is “moderately active” and as much as 2000 calories if “active.” So my first question is: how are they defining school children? Are they feeding them as “sedentary” or “active”? Because folks, it only takes 100 extra calories each day to gain 10 pounds in a year. A 600-calorie difference is huge. It is the difference between him being able to eat dinner and not.
To complicate matters, it isn't calculated daily; it is calculated as an average over the course of a week. One day that lunch could be 1000 calories, as long as over the course of the week there is a lunch with, say, 300 calories.
Let's look at a week of food from my child's school. Finding specific nutritional information about these meals has been elusive, so the calorie and carb count you see is my best guess based on nutrition information I found about similar foods available to the general public. The only information I have about the food being served is all it is listed here, so I cannot assume any of the foods are "diet" (ie, sugar-free, fat-free, etc.) unless it specifically lists the food as such on the menu. Also, I noticed they allow Joey to have chocolate milk, and he usually chooses that, so the "milk" is for chocolate milk.
The Menu: (Calories) [Carbs]
Monday:
BREAKFAST
Breakfast Pizza (420) [41.5] {** “School” pizza can be as high as 530 calories!}
Chilled Juice (90) [23]
Milk (160) [25]
Total: (670) [89.5]
LUNCH
Chicken Patty on Bun (380) [44]
Lettuce & Tomato Cup (4) [1]
Steamed Broccoli (30) [6]
Vanilla Cream Cookie (250) [37]
Milk (160) [25]
Total: (824) [113]
Daily Total: (1494) [202.5]
Tuesday:
BREAKFAST
Blueberry Pancake (240) [46]
w/Sausage (85) [0] {**Some sausages can be 270 calories per serving!}
Orange Wedges (62) [15] {**Assuming this means fresh oranges}
Milk (160) [25]
Total: (547) [86]
LUNCH
Hot Turkey/Bacon Sub (400) [47] {**This could be as low as 300 calories, as high as 600 calories!}
Seasoned Corn (67) [16]
Fresh Fruit (65) [20] {Bananas are much higher}
Apple Turnover (260) [34]
Milk (160) [25]
Total: (952) [142]
Daily Total: (1499) [228]
Wednesday:
BREAKFAST
Ham & Cheese Croissant (280) [29]
Fresh Fruit Cup (65) [16]
Milk (160) [25]
Total: (505) [70]
LUNCH
Hot Dog (240) [18] {**many brands are higher, depending on the filler used}
on Bun (110) [20]
Potato Wedges (147) [31]
Chilled Peaches (80) [10]
Sherbet (120) [28]
Milk (160) [25]
Total: (857) [132]
Daily Total: (1362) [192]
Thursday:
BREAKFAST
Bacon & Egg (184) [0]
on English Muffin (189) [30]
Chilled Juice (90) [23]
Milk (160) [25]
Total: (623) [78]
LUNCH
Deep Dish Pizza (478) [57] {**Assuming it is cheese only.}
Tossed Salad (15) [2]
Green Beans (7) [1]
Choice of Pudding (130) [21]
Milk (160) [25]
Total: (790) [106]
Daily Total: (1413) [184]
Friday:
BREAKFAST
Chicken Biscuit (170) [18]
Apple Juice (90) [23]
Milk (160) [25]
Total: (420) [66]
LUNCH
Grilled Cheese (200) [40]
Smiley Fries (160) [24]
Fruit Jell-O (70) [17]
Choice of Muffin (180) [22]
Milk (160) [25]
Total: (770) [128]
Daily Total: (1190) [194]
*********************
As you can see, my guesstimates seem to be OK, as we are consistently getting around 1400 calories per day, and about 170-200 carbs per day. Friday was the only exception; perhaps they are using a more caloric brand of chicken biscuit or cheese sandwich than I used.
Therefore, the school is assuming ALL of their children are 1. male (girls need about 200-400 fewer calories per day) and 2. active, otherwise I would have no room to feed Joey snack or dinner. We are supposed to send in a snack of a juice-box and food item every day. Normal choices would put this snack at about 100-200 calories; I have chosen more in the 30-calorie range, due to the joys of diet drinks and diet jell-o.
But wait. Is my child really active? He gets PE three days per week, and recess every day. So about an hour of his school day, maybe an hour and a half, is active, assuming he is actively participating- which, I noted in my visits, he spend a good deal of his recess time rambling about the perimeters, not running, climbing, swings, or other "active" activities. Many afternoons are taken up with therapies, not running. Let's say Joey is "moderate." He is allowed 1400-1600 calories per day.
So on many days, he may have consumed all the calories he needs before he ever reaches my door; at best, he needs no more than 200 calories at dinner. Yikes.
If I feed him a peanut butter and jelly sandwich for dinner- and nothing else- that is 300-350 calories. I could skimp it to about 250 calories. Double yikes. Skinless chicken breast with broccoli? There's 200 calories. If there is no butter on the broccoli. And he gets only one serving. And nothing else.
No wonder we're having a problem.
Hint to folks screaming about obese kids: try feeding them less at school! Just because there are kids who don't get food at home doesn't give you the right to stuff my kid full of sugar and calories. Have a kid on the free lunch program? Then provide their snack, too. And give them the extra calories there. Not at breakfast and lunch. For breakfast and lunch, assume "sedentary." Its also a good idea to assume there will be food awaiting those sedentary kids at home. Assume mom would like to make cookies once in a while. Or serve mashed potatoes with dinner. Or even peas.
So I think we're going to talk to the teachers about packed lunches, where I can control the calorie count. PB&J with carrot sticks and a sugar-free dessert, eaten with his beloved chocolate milk, is only 500 calories. A hard-boiled egg, piece of fruit, and his beloved chocolate milk is only 300 calories. Plus his 30 calorie snack- that's 850 calories. Even at "sedentary" I can feed him a nice 550-calorie dinner (still light!), and be all good!
Joey normally eats both breakfast and lunch at school. The teachers use these meals to help Joey with important skills. He must ask for a tray. He must stand in line. He must communicate with the lunch ladies. He must offer his card to pay for his lunch. He must learn to eat different foods. I could go on.
So I looked up the rules about food programs in Virginia, and what is supposed to be served, because to be honest, it all looks like junk food to me: poptarts, chicken nuggets, spaghetti, potatoes, muffins. How many carbs are they supposed to be pushing on my kid?
The school lunch program is required to provide 1/3 of my child’s daily recommended intake of protein, certain vitamins and minerals, and calories. No more of 30% of the calories can be from fat, and no more that 10% of saturated fat.
The school breakfast program is to provide ¼ of these things (INCLUDING PROTEIN… how do muffins provide protein, exactly?), including calories.
All of this is based on the federal dietary guidelines. According to those guidelines (2005), Joey should be eating 1400 calories if sedentary, 1400-1600 calories is “moderately active” and as much as 2000 calories if “active.” So my first question is: how are they defining school children? Are they feeding them as “sedentary” or “active”? Because folks, it only takes 100 extra calories each day to gain 10 pounds in a year. A 600-calorie difference is huge. It is the difference between him being able to eat dinner and not.
To complicate matters, it isn't calculated daily; it is calculated as an average over the course of a week. One day that lunch could be 1000 calories, as long as over the course of the week there is a lunch with, say, 300 calories.
Let's look at a week of food from my child's school. Finding specific nutritional information about these meals has been elusive, so the calorie and carb count you see is my best guess based on nutrition information I found about similar foods available to the general public. The only information I have about the food being served is all it is listed here, so I cannot assume any of the foods are "diet" (ie, sugar-free, fat-free, etc.) unless it specifically lists the food as such on the menu. Also, I noticed they allow Joey to have chocolate milk, and he usually chooses that, so the "milk" is for chocolate milk.
The Menu: (Calories) [Carbs]
Monday:
BREAKFAST
Breakfast Pizza (420) [41.5] {** “School” pizza can be as high as 530 calories!}
Chilled Juice (90) [23]
Milk (160) [25]
Total: (670) [89.5]
LUNCH
Chicken Patty on Bun (380) [44]
Lettuce & Tomato Cup (4) [1]
Steamed Broccoli (30) [6]
Vanilla Cream Cookie (250) [37]
Milk (160) [25]
Total: (824) [113]
Daily Total: (1494) [202.5]
Tuesday:
BREAKFAST
Blueberry Pancake (240) [46]
w/Sausage (85) [0] {**Some sausages can be 270 calories per serving!}
Orange Wedges (62) [15] {**Assuming this means fresh oranges}
Milk (160) [25]
Total: (547) [86]
LUNCH
Hot Turkey/Bacon Sub (400) [47] {**This could be as low as 300 calories, as high as 600 calories!}
Seasoned Corn (67) [16]
Fresh Fruit (65) [20] {Bananas are much higher}
Apple Turnover (260) [34]
Milk (160) [25]
Total: (952) [142]
Daily Total: (1499) [228]
Wednesday:
BREAKFAST
Ham & Cheese Croissant (280) [29]
Fresh Fruit Cup (65) [16]
Milk (160) [25]
Total: (505) [70]
LUNCH
Hot Dog (240) [18] {**many brands are higher, depending on the filler used}
on Bun (110) [20]
Potato Wedges (147) [31]
Chilled Peaches (80) [10]
Sherbet (120) [28]
Milk (160) [25]
Total: (857) [132]
Daily Total: (1362) [192]
Thursday:
BREAKFAST
Bacon & Egg (184) [0]
on English Muffin (189) [30]
Chilled Juice (90) [23]
Milk (160) [25]
Total: (623) [78]
LUNCH
Deep Dish Pizza (478) [57] {**Assuming it is cheese only.}
Tossed Salad (15) [2]
Green Beans (7) [1]
Choice of Pudding (130) [21]
Milk (160) [25]
Total: (790) [106]
Daily Total: (1413) [184]
Friday:
BREAKFAST
Chicken Biscuit (170) [18]
Apple Juice (90) [23]
Milk (160) [25]
Total: (420) [66]
LUNCH
Grilled Cheese (200) [40]
Smiley Fries (160) [24]
Fruit Jell-O (70) [17]
Choice of Muffin (180) [22]
Milk (160) [25]
Total: (770) [128]
Daily Total: (1190) [194]
*********************
As you can see, my guesstimates seem to be OK, as we are consistently getting around 1400 calories per day, and about 170-200 carbs per day. Friday was the only exception; perhaps they are using a more caloric brand of chicken biscuit or cheese sandwich than I used.
Therefore, the school is assuming ALL of their children are 1. male (girls need about 200-400 fewer calories per day) and 2. active, otherwise I would have no room to feed Joey snack or dinner. We are supposed to send in a snack of a juice-box and food item every day. Normal choices would put this snack at about 100-200 calories; I have chosen more in the 30-calorie range, due to the joys of diet drinks and diet jell-o.
But wait. Is my child really active? He gets PE three days per week, and recess every day. So about an hour of his school day, maybe an hour and a half, is active, assuming he is actively participating- which, I noted in my visits, he spend a good deal of his recess time rambling about the perimeters, not running, climbing, swings, or other "active" activities. Many afternoons are taken up with therapies, not running. Let's say Joey is "moderate." He is allowed 1400-1600 calories per day.
So on many days, he may have consumed all the calories he needs before he ever reaches my door; at best, he needs no more than 200 calories at dinner. Yikes.
If I feed him a peanut butter and jelly sandwich for dinner- and nothing else- that is 300-350 calories. I could skimp it to about 250 calories. Double yikes. Skinless chicken breast with broccoli? There's 200 calories. If there is no butter on the broccoli. And he gets only one serving. And nothing else.
No wonder we're having a problem.
Hint to folks screaming about obese kids: try feeding them less at school! Just because there are kids who don't get food at home doesn't give you the right to stuff my kid full of sugar and calories. Have a kid on the free lunch program? Then provide their snack, too. And give them the extra calories there. Not at breakfast and lunch. For breakfast and lunch, assume "sedentary." Its also a good idea to assume there will be food awaiting those sedentary kids at home. Assume mom would like to make cookies once in a while. Or serve mashed potatoes with dinner. Or even peas.
So I think we're going to talk to the teachers about packed lunches, where I can control the calorie count. PB&J with carrot sticks and a sugar-free dessert, eaten with his beloved chocolate milk, is only 500 calories. A hard-boiled egg, piece of fruit, and his beloved chocolate milk is only 300 calories. Plus his 30 calorie snack- that's 850 calories. Even at "sedentary" I can feed him a nice 550-calorie dinner (still light!), and be all good!
The Prompt Meme
I picked this up from, of course, Maddy.
You write the reaction you have to each prompt- don't change it. I think it is cheating to read mine first, so here are the prompts:
1. My ‘ex’ is still…..
2. I am listening to….
3. Maybe I should….
4. I love………..
5. My best friend(s)……….
6. I don’t understand………..
7. I’ve lost my respect for………..
8. I last ate………….
9. The meaning of my display name is……..
11. Someday………….
12. I will always…………..
13. Love seems to be……….
14. I never ever want to lose………….
15. My mobile phone is………..
16. When I woke up this morning……..
17. I get annoyed at/with……….
18. Parties………..
19. My pets………...
20. Kisses………..
And here are my answers:
1. My ‘ex’ is still….chasing bears.
2. I am listening to…Joey giggling. He’s chasing the cats.
3. Maybe I should… save the cat. Or get Andy up.
4. I love……….Allan.
5. My best friend(s)……… is stuck in the house today .
6. I don’t understand……….why Beau doesn’t call.
7. I’ve lost my respect for……….Cheetos. [You wanted my first response…].
8. I last ate…………last night.
9. The meaning of my display name is…. I’m Joey’s mom. It was chosen before Andy was born.
11. Someday…………I’ll mulch the garden.
12. I will always………….be chubby.
13. Love seems to be……….a squishy boy. Any age.
14. I never ever want to lose…………. my keys. [My sanity is long gone.]
15. My mobile phone is……….lost.
16. When I woke up this morning……..I was thinking of buying a present for the daughter for a high-school friend who just recently tracked me down. [She’s probably the only person from my actual high school that I ever really cared to hear from again.]
17. I get annoyed at/with………stupid people in stores.
18. Parties……….are a vague memory.
19. My pets………..are cats. One of them is diabetic like the rest of us.
20. Kisses……….are awfully sweet when they come from a boy (any age) first thing in the morning.
Give it a go. It's fun.
My husband is gonna laugh his butt off when he sees this. He thinks daisies are daffy.
You write the reaction you have to each prompt- don't change it. I think it is cheating to read mine first, so here are the prompts:
1. My ‘ex’ is still…..
2. I am listening to….
3. Maybe I should….
4. I love………..
5. My best friend(s)……….
6. I don’t understand………..
7. I’ve lost my respect for………..
8. I last ate………….
9. The meaning of my display name is……..
11. Someday………….
12. I will always…………..
13. Love seems to be……….
14. I never ever want to lose………….
15. My mobile phone is………..
16. When I woke up this morning……..
17. I get annoyed at/with……….
18. Parties………..
19. My pets………...
20. Kisses………..
And here are my answers:
1. My ‘ex’ is still….chasing bears.
2. I am listening to…Joey giggling. He’s chasing the cats.
3. Maybe I should… save the cat. Or get Andy up.
4. I love……….Allan.
5. My best friend(s)……… is stuck in the house today .
6. I don’t understand……….why Beau doesn’t call.
7. I’ve lost my respect for……….Cheetos. [You wanted my first response…].
8. I last ate…………last night.
9. The meaning of my display name is…. I’m Joey’s mom. It was chosen before Andy was born.
11. Someday…………I’ll mulch the garden.
12. I will always………….be chubby.
13. Love seems to be……….a squishy boy. Any age.
14. I never ever want to lose…………. my keys. [My sanity is long gone.]
15. My mobile phone is……….lost.
16. When I woke up this morning……..I was thinking of buying a present for the daughter for a high-school friend who just recently tracked me down. [She’s probably the only person from my actual high school that I ever really cared to hear from again.]
17. I get annoyed at/with………stupid people in stores.
18. Parties……….are a vague memory.
19. My pets………..are cats. One of them is diabetic like the rest of us.
20. Kisses……….are awfully sweet when they come from a boy (any age) first thing in the morning.
Give it a go. It's fun.
|
|
My husband is gonna laugh his butt off when he sees this. He thinks daisies are daffy.
Saturday, August 16, 2008
Out of sorts
What does one do when one child likes to repeat sounds to calm down, and the other needs absolute silence?
My mom is thinking about buying them both headphones. Joey's will be connected to a CD player, so he can play his favorite songs and chatter and sing to his heart's content.
Andy will get noise-canceling phones so he doesn't have to hear any of it.
Yes, the boys are out of sorts. Friday afternoon, I tried to get the boys outside- something that is usually a very popular idea- and we had a drip of rain. They both ran into the house at the first drop. That is really odd. They retreated to the basement. Any time either of them appeared upstairs, I had him bounce on the trampoline for a minute. Trying to get them calm. It worked a little.
Allan kept them moving a good bit today, in the basement, outside. We went to see Dexter, and that was a good time had by all. BUt I think the wild schedule takes its toll. Tomorrow we'll go see the cousins, and so that will be another tiring, unscheduled day. Then he will go to school, but not usual school, because its only a half-day, with no breakfast or lunch there. Joey finds that really odd. Everything is chaos.
Three months of chaos. The result? Out of sorts. It's only natural. At least we have enough structure to pull him through. The summers before, those preschool summers we failed to get ESY for him, he would be a wild ball of stimming by now. I know some folks don't see anything wrong with stimming, but for Joey, it does become problematic if he only stims.
Right now, it is a matter of management. Joey needs to chatter. It is a sort of stim, but not a distracting, drift-away kind, so I don't really want to stifle it (it would kind of be like taking a kid's teddy bear away- perfectly harmless for a kid to hug a teddy bear to calm himself, right?) Andy needs quiet. having them both stressed out in the same car can be... interesting.
How much are those phones, again?
My mom is thinking about buying them both headphones. Joey's will be connected to a CD player, so he can play his favorite songs and chatter and sing to his heart's content.
Andy will get noise-canceling phones so he doesn't have to hear any of it.
Yes, the boys are out of sorts. Friday afternoon, I tried to get the boys outside- something that is usually a very popular idea- and we had a drip of rain. They both ran into the house at the first drop. That is really odd. They retreated to the basement. Any time either of them appeared upstairs, I had him bounce on the trampoline for a minute. Trying to get them calm. It worked a little.
Allan kept them moving a good bit today, in the basement, outside. We went to see Dexter, and that was a good time had by all. BUt I think the wild schedule takes its toll. Tomorrow we'll go see the cousins, and so that will be another tiring, unscheduled day. Then he will go to school, but not usual school, because its only a half-day, with no breakfast or lunch there. Joey finds that really odd. Everything is chaos.
Three months of chaos. The result? Out of sorts. It's only natural. At least we have enough structure to pull him through. The summers before, those preschool summers we failed to get ESY for him, he would be a wild ball of stimming by now. I know some folks don't see anything wrong with stimming, but for Joey, it does become problematic if he only stims.
Right now, it is a matter of management. Joey needs to chatter. It is a sort of stim, but not a distracting, drift-away kind, so I don't really want to stifle it (it would kind of be like taking a kid's teddy bear away- perfectly harmless for a kid to hug a teddy bear to calm himself, right?) Andy needs quiet. having them both stressed out in the same car can be... interesting.
How much are those phones, again?
Thursday, August 14, 2008
Disappointment
You know, I was really looking forward to seeing this for my birthday:
But now, it looks like I will be stuck seeing this:
Yes, that is how my week is going. Thanks.
But now, it looks like I will be stuck seeing this:
Yes, that is how my week is going. Thanks.
Life is Good.
Things that make life good here:
"My tummy hungy."
Boys on red bikes at the park.
Morning tickle-fests. In my bed. With both boys. Added bonus if Daddy is home.
"I'm a clue! I'm a clue!"
A cat going by at 100 miles an hour- because you know a giggling boy isn't far behind.
An hour at the Bug Box. Especially if the snake moves.
Red cherry tomatoes that mysteriously disappear, even though tomatoes are currently "yucky."
Wimoweh. We get most of the parts in between the three of us.
Very wet boys coming to give me a hug for taking them to the beach.
Shoes on feet, and I never touched the shoes or the feet.
Answers to questions. Any answer to any question.
"I love you, Mommy." Even when it comes after just doing something naughty.
Yep. Life is good.
"My tummy hungy."
Boys on red bikes at the park.
Morning tickle-fests. In my bed. With both boys. Added bonus if Daddy is home.
"I'm a clue! I'm a clue!"
A cat going by at 100 miles an hour- because you know a giggling boy isn't far behind.
An hour at the Bug Box. Especially if the snake moves.
Red cherry tomatoes that mysteriously disappear, even though tomatoes are currently "yucky."
Wimoweh. We get most of the parts in between the three of us.
Very wet boys coming to give me a hug for taking them to the beach.
Shoes on feet, and I never touched the shoes or the feet.
Answers to questions. Any answer to any question.
"I love you, Mommy." Even when it comes after just doing something naughty.
Yep. Life is good.
Language Matters III: Things I Usually Avoid
There are some things I usually don't talk about here on my blog. I sometimes allude to them, but rarely discuss them, such as specific encounters with idiotic people and negative experiences with other people. I would far rather talk about positives. It sets an example. Teaching by positive model is far more effective around here than saying, "Don't do that!"
The issue of Tropic Thunder has caught my attention because I have had negative experiences. After all, what do I care, it isn't a movie I would have gone to see, even without the offensive language; and offensive language never stopped me from seeing South Park. In reading over the remarks made on my iReport and other surrounding reports on CNN and other news sites, I have caught the pulse of something disturbing. People seem to be ignorant of the use of "retard" towards disabled people.
We have all worked hard here to help and support Joey, and Joey has done a ton of work to be able to function in everyday situations that most people take for granted. We can go to a store. We can eat in a restaurant. Most people don't know he's autistic unless something is said, or something goes really wrong. However, there is no missing that he is unusual. Eccentric. He sometimes comes off looking spoiled, because he gets antsy and needs to move, or doesn't return immediately when I call. He sometimes dashes off and has to be called back. He sometimes needs to be contained in a shopping cart, even at six years old (and big enough to look 8 or 9). He sometimes babbles nonsense. For some reason, people think any of this is any of their business.
Which is fine, we're in public, we're not invisible. It is how the questions are sometimes asked.
"Why is he acting so retarded?"
"Why don't you tell him to sit down and stop acting like a 'tard?"
"That is so retarded! Why is he saying that?"
Excuse me? And it isn't even the question itself; it is the tone of voice when it is asked. They are not asking me if my son is intellectually challenged, and if they can help or get more information about his challenges. It is a judgment against him, against me, said with a broiling distaste and hate that results in just one response from me: we walk away. I don't even dignify such questions with a response.
Yes, this word is directed at people with disabilities. Yes, it has been directed towards us. Yes, it hurts.
I'm not out to ban movies like Tropic Thunder, or Something About Mary, or anything like that. People have a right to make movies. People have a right to ask me these questions. This is a country with free speech, and no-one will go to jail for coming up to me in a Wal-mart and asking, "Why is he acting so retarded?" That's wonderful. I like knowing who the bigots are. I also have the right to write this blog. I have the right to tell those people they are bigots, jerks, and even... well, fill in the colorful metaphor of your choice. That is free speech.
I find it disturbing that people don't realize this term is used to disparage disabled people. It is. We have the right to free speech, but with rights comes responsibility.
Just because you can say something, doesn't mean you should.
Just walk away.
The issue of Tropic Thunder has caught my attention because I have had negative experiences. After all, what do I care, it isn't a movie I would have gone to see, even without the offensive language; and offensive language never stopped me from seeing South Park. In reading over the remarks made on my iReport and other surrounding reports on CNN and other news sites, I have caught the pulse of something disturbing. People seem to be ignorant of the use of "retard" towards disabled people.
We have all worked hard here to help and support Joey, and Joey has done a ton of work to be able to function in everyday situations that most people take for granted. We can go to a store. We can eat in a restaurant. Most people don't know he's autistic unless something is said, or something goes really wrong. However, there is no missing that he is unusual. Eccentric. He sometimes comes off looking spoiled, because he gets antsy and needs to move, or doesn't return immediately when I call. He sometimes dashes off and has to be called back. He sometimes needs to be contained in a shopping cart, even at six years old (and big enough to look 8 or 9). He sometimes babbles nonsense. For some reason, people think any of this is any of their business.
Which is fine, we're in public, we're not invisible. It is how the questions are sometimes asked.
"Why is he acting so retarded?"
"Why don't you tell him to sit down and stop acting like a 'tard?"
"That is so retarded! Why is he saying that?"
Excuse me? And it isn't even the question itself; it is the tone of voice when it is asked. They are not asking me if my son is intellectually challenged, and if they can help or get more information about his challenges. It is a judgment against him, against me, said with a broiling distaste and hate that results in just one response from me: we walk away. I don't even dignify such questions with a response.
Yes, this word is directed at people with disabilities. Yes, it has been directed towards us. Yes, it hurts.
I'm not out to ban movies like Tropic Thunder, or Something About Mary, or anything like that. People have a right to make movies. People have a right to ask me these questions. This is a country with free speech, and no-one will go to jail for coming up to me in a Wal-mart and asking, "Why is he acting so retarded?" That's wonderful. I like knowing who the bigots are. I also have the right to write this blog. I have the right to tell those people they are bigots, jerks, and even... well, fill in the colorful metaphor of your choice. That is free speech.
I find it disturbing that people don't realize this term is used to disparage disabled people. It is. We have the right to free speech, but with rights comes responsibility.
Just because you can say something, doesn't mean you should.
Just walk away.
Wednesday, August 13, 2008
Tuesday, August 12, 2008
Language Matters II
As Joey learned to talk, my husband decided to teach him to say "let go, please" when he was done with being hugged. We would catch him, hug him tight, and then just hold on until he said (usually through his giggles), "Let go, please!"
Now he uses this phrase whenever he is done playing with us, and is ready to move on. Andy does, too. And we always let go, even if we aren't really done hugging yet (is one ever done hugging a boy?)
The purpose of this exercise was multi-fold. It provided Joey with words to end a situation and control his environment. It encouraged him to talk and use words. It provided the lesson that words have meaning. Words are tools, and used correctly, have results.
In some ways, self-advocates are just now starting to garner words and expect results. This is partly a "Horton Hears A Who" effect- you need enough people using words at once for people to hear you. And it is partly because improvements in interventions, supports, and communication skills among persons with disabilities- particularly communication disorders- is improving at a rate that many new voices are being added to the chorus.
It is a sad comment on society that people are not protected unless they yell loud enough to be heard. But there it is. We add our voices to the cry: "We are all unique! We are all human! We all have rights!"
That is really what the din over Tropic Thunder is all about. A tip over the top of the volume to, "Being mean is not funny!"
Now he uses this phrase whenever he is done playing with us, and is ready to move on. Andy does, too. And we always let go, even if we aren't really done hugging yet (is one ever done hugging a boy?)
The purpose of this exercise was multi-fold. It provided Joey with words to end a situation and control his environment. It encouraged him to talk and use words. It provided the lesson that words have meaning. Words are tools, and used correctly, have results.
In some ways, self-advocates are just now starting to garner words and expect results. This is partly a "Horton Hears A Who" effect- you need enough people using words at once for people to hear you. And it is partly because improvements in interventions, supports, and communication skills among persons with disabilities- particularly communication disorders- is improving at a rate that many new voices are being added to the chorus.
It is a sad comment on society that people are not protected unless they yell loud enough to be heard. But there it is. We add our voices to the cry: "We are all unique! We are all human! We all have rights!"
That is really what the din over Tropic Thunder is all about. A tip over the top of the volume to, "Being mean is not funny!"
Monday, August 11, 2008
Language Matters
Battles over what is a semantics problem, and what is a real language problem, rattle about the blogosphere all the time. What is a meltdown? Autistic or person with autism? What do our words really say?
One thing I am telling Joey a lot is "words have meaning." It is important to use words carefully, and think before you speak. Words have meaning. Why is that so hard to remember?
One thing I am telling Joey a lot is "words have meaning." It is important to use words carefully, and think before you speak. Words have meaning. Why is that so hard to remember?
Farewells: A New Year Turns
As summer draws to its close and a new school year dawns, it is time for Andy to say goodbye to old friends. First, a goodbye to his first successful preschool teacher, who has also run his summer camp classes, Andy's Mrs. S (not to be confused with Joey's Mrs. S). We brought Andy to her class with some trepidation, as he had a lot of sensory issues and an unsuccessful preschool experience. Fortunately, Mrs. S runs a tight ship, and Andy learned what was expected of him double-quick. She was sensitive enough to his sensory needs that together, they were able to negotiate a successful preschool experience! Andy loves his school, he loves Mrs. S, and we will miss her. At least he will see her around and about next year!
However, we will not be seeing MIss Cindy any more. Sadly, she is moving to Texas. We said goodbye to Miss Cindy on our final visit on Friday. I don't think Andy really understands, but we're going to handle it just like another new teacher, because he will get a new therapist. We don't know who just yet. The difference Miss CIndy has made in our lives is earth-shattering. Without other serious issues to address, sensory integration OT really does work wonders with sensory integration disorder. We have gone from a child we thought would be going into special ed, to an excellent shot of him entering a "regular" kindergarten class (though I'm personally shooting for the inclusion class- I know those teachers ROCK!) Goodbye, Miss Cindy. Thank you. We miss you already.
Sunday, August 10, 2008
Mysteries of Life
First, two boxes appeared on my front step, one for Joey and one from Andy, from Alivan's. We have no idea who they are from. Apparently, the person has specifically requested Alivan's to keep their identity secret. So if they are from you, thank you. The boys- and their mom- was surprised and it really made our day!
Then there is the Mystery of the Tomato. We finally have a tomato from our garden- a real one, from a plant we actually planted. I put it on the counter to ripen, and take with us to Grandma's today. We were having a "campout", which was more of a cookout with a tent on the porch. Anyway, I picked it up to pack it, and noticed these odd marks on it...
Hmmm. I wonder where those came from.
Meanwhile, Andy's new favorite phrase is, "I'm hungry!" He's still picky about what goes in his mouth, but at least food is now being eaten. In fact, I think if I let him, he would do nothing but eat. I am trying to take advantage of the new interest in eating to introduce new foods, but unfortunately, I think he would also spend this entire time eating Poptarts.
Then there is the Mystery of the Tomato. We finally have a tomato from our garden- a real one, from a plant we actually planted. I put it on the counter to ripen, and take with us to Grandma's today. We were having a "campout", which was more of a cookout with a tent on the porch. Anyway, I picked it up to pack it, and noticed these odd marks on it... Hmmm. I wonder where those came from.
Meanwhile, Andy's new favorite phrase is, "I'm hungry!" He's still picky about what goes in his mouth, but at least food is now being eaten. In fact, I think if I let him, he would do nothing but eat. I am trying to take advantage of the new interest in eating to introduce new foods, but unfortunately, I think he would also spend this entire time eating Poptarts.
Saturday, August 09, 2008
Friday, August 08, 2008
Lessons at the Bug Box
It was Andy's last day of camp, and Joey has no ESY on Fridays, so I took advantage of opportunity knocking and took him for some 1:1 at the Bug Box. I printed out some worksheets from Enchanted Learning to help focus the visit- one on insects, and a book about spiders. We showed up with worksheets, crayons, and four bucks. We were ready for action.
The lady who runs the place took one look at my worksheets, one look at Joey, and said, "no charge." If you're doing homework, you get in free. How cool is that? She was expecting a school group, so we got right to business to squeeze in as much focus as I could before the group showed up, or Joey wore out.
I have a very difficult time getting Joey to focus. Half of that is that Joey has difficulty focusing, because after all, I'm mom, and home isn't school, and all that. Getting him to sit and do an activity in a sea of distraction and home is nearly impossible. However, he took focusing while at the Bug Box right in stride. We used the first sheets as a sort of scavenger hunt, so that he had to read the sheet, look for the bug, then her could write the word. Then we moved to the next bug. That had him wandering around looking for bugs, small objects in a vast visual field- he did very well, all things considered. We did get through the whole little workbook.
Then we sat ourselves in front of real, live tarantulas and talked about spiders. We read the little mini-book, looked at the spiders, talked about the spiders, and then he had to answer questions about the book and the spiders. He had to know what spinnerets were, what an exoskeleton was, and the difference between an arachnid and an insect. That last was a little sketchy for him, but we got it. He answered the questions. He finished the little worksheet.
Holy crap, I got the boy to do two assignments, focus for a whole frickin' hour, and answer questions!!! Where am I, and what has happened to my child??? I am deliriously happy. What a difference a year makes!
The lady who runs the place took one look at my worksheets, one look at Joey, and said, "no charge." If you're doing homework, you get in free. How cool is that? She was expecting a school group, so we got right to business to squeeze in as much focus as I could before the group showed up, or Joey wore out.
I have a very difficult time getting Joey to focus. Half of that is that Joey has difficulty focusing, because after all, I'm mom, and home isn't school, and all that. Getting him to sit and do an activity in a sea of distraction and home is nearly impossible. However, he took focusing while at the Bug Box right in stride. We used the first sheets as a sort of scavenger hunt, so that he had to read the sheet, look for the bug, then her could write the word. Then we moved to the next bug. That had him wandering around looking for bugs, small objects in a vast visual field- he did very well, all things considered. We did get through the whole little workbook.
Then we sat ourselves in front of real, live tarantulas and talked about spiders. We read the little mini-book, looked at the spiders, talked about the spiders, and then he had to answer questions about the book and the spiders. He had to know what spinnerets were, what an exoskeleton was, and the difference between an arachnid and an insect. That last was a little sketchy for him, but we got it. He answered the questions. He finished the little worksheet. Holy crap, I got the boy to do two assignments, focus for a whole frickin' hour, and answer questions!!! Where am I, and what has happened to my child??? I am deliriously happy. What a difference a year makes!
Thursday, August 07, 2008
Doors
When moving through life, pushing forward to bigger, better, and more progress, sometimes we see things creep back in- thing we thought were gone and left to the dust. Things we thought were better off in the dust.
One thing that is making a slow comeback here is Joey's door fetish. He loves to open and close doors. As soon as he could open and close doors, he would. He loves my buffet, with the big square doors on either end, opening and closing, opening and closing, opening and closing. We haven't gotten that bad yet, but I can see it creeping in, creeping in. He has been finding doors to open and close. He discovered at door at the OT office. Open, close. Open, close. I caught him messing with the bathroom door. Open, close. Open, close. He was waiting to get in the car and discovered the driver door was unlocked already. Open, close. Open, close.
This is not a good sign.
But also, 'tis the season. The dog days are upon us. Our schedule has been a wild mess of summer activity. Even with the morning school routines, he knows it is different- breakfast is at home, lunch is with Grandma, not at school. His other teachers and classmates aren't there. The days are shorter, there is only four of them a week. It is a breath of routine in a swirl of unpredictability. The days are hot, which exacerbates everything- Joey hates being hot. The streams are starting to cross. Joey is hot, tired, and confused. He's stressing out.
We managed to get through Shoe Day without a meltdown. The lady at the shoe store was ready, braced for the usual. She handled it very well, talking him through putting the new shoes back in the box, letting him do it himself, so that the shoes "would be all clean and white for your new teachers and new friends!" Really, she did it very well. I think she did some research in preparation for us this year.
But now we have the doors. He is starting to throw toys when frustrated with them again. He is back on Blue's Clues and Little Bear.
Tomorrow, I am taking him tot eh Bug Box, just the two of us, while Andy is at camp. I'll see if I can get him to focus on the lizards, snakes, and bugs, maybe the frogs and turtles. Maybe get him to relax a bit in a place he finds positive and fun. Maybe I'll get some extra hugs and kisses in while I'm at it.
Three more weeks until school.
One thing that is making a slow comeback here is Joey's door fetish. He loves to open and close doors. As soon as he could open and close doors, he would. He loves my buffet, with the big square doors on either end, opening and closing, opening and closing, opening and closing. We haven't gotten that bad yet, but I can see it creeping in, creeping in. He has been finding doors to open and close. He discovered at door at the OT office. Open, close. Open, close. I caught him messing with the bathroom door. Open, close. Open, close. He was waiting to get in the car and discovered the driver door was unlocked already. Open, close. Open, close.
This is not a good sign.
But also, 'tis the season. The dog days are upon us. Our schedule has been a wild mess of summer activity. Even with the morning school routines, he knows it is different- breakfast is at home, lunch is with Grandma, not at school. His other teachers and classmates aren't there. The days are shorter, there is only four of them a week. It is a breath of routine in a swirl of unpredictability. The days are hot, which exacerbates everything- Joey hates being hot. The streams are starting to cross. Joey is hot, tired, and confused. He's stressing out.
We managed to get through Shoe Day without a meltdown. The lady at the shoe store was ready, braced for the usual. She handled it very well, talking him through putting the new shoes back in the box, letting him do it himself, so that the shoes "would be all clean and white for your new teachers and new friends!" Really, she did it very well. I think she did some research in preparation for us this year.
But now we have the doors. He is starting to throw toys when frustrated with them again. He is back on Blue's Clues and Little Bear.
Tomorrow, I am taking him tot eh Bug Box, just the two of us, while Andy is at camp. I'll see if I can get him to focus on the lizards, snakes, and bugs, maybe the frogs and turtles. Maybe get him to relax a bit in a place he finds positive and fun. Maybe I'll get some extra hugs and kisses in while I'm at it.
Three more weeks until school.
Alex Barton Update 6
The latest TC Palm story mentioning Alex Barton. Are teachers really the only ones who have to keep up with their field on their own time?
Wednesday, August 06, 2008
Disability Parking in Virginia: Did You Know?
There have been a lot of comments swirling around disability parking. Here in Virginia, autism is specifically mentioned as a condition which impairs judgment while walking, and therefore have a right to disability parking. However, there is an attitude that handicapped/disability parking is only for people with visible problems walking.
Which is, of course, absurd. Here in Virginia:
People with heart conditions are permitted disability placards and plates. Can you tell a person has a heart condition by looking at them?
Did you know that deaf people are also permitted disability placards and plates? Can you tell a person is deaf by looking at them?
Did you know dementia (including Alzheimer's Disease) qualifies for a disability placard or plate? Can you tell if someone has Alzheimer's or other dementia by looking at them?
Not only autism, but any developmental disability or amentia which impairs judgment qualifies a person for a disability placard or plate. Can you tell if a person has a developmental disability or amentia by looking at them?
We have a placard for Joey. He doesn't bolt often, but when he does, it is dangerous. It has made a huge difference in our lives, when disability parking is appropriately placed next to a building, close to the entrance (as opposed to across the street or halfway down the block. Why do people do that? Those spaces help hardly anyone!) Offering disability parking that requires my child to be bused elsewhere (such as, say Williamsburg, or some of the local functions here) is also useless for us. (fortunately, Williamsburg has a lot for the taverns with a disability space, right behind the taverns we like to use. It's across a street, but at least doesn't require the shuttling- it's a real shame they shut down the other closer parking lots. If not for those tavern spots, we probably wouldn't be able to visit Williamsburg at all!) So even with the placard, life isn't all accessible and peaches and cream, but it does help a lot.
And for those folks who think you need to or should have a visible disability to have a placard and use those spots, I can only say, I hope you never need one. Seriously.
Which is, of course, absurd. Here in Virginia:
People with heart conditions are permitted disability placards and plates. Can you tell a person has a heart condition by looking at them?
Did you know that deaf people are also permitted disability placards and plates? Can you tell a person is deaf by looking at them?
Did you know dementia (including Alzheimer's Disease) qualifies for a disability placard or plate? Can you tell if someone has Alzheimer's or other dementia by looking at them?
Not only autism, but any developmental disability or amentia which impairs judgment qualifies a person for a disability placard or plate. Can you tell if a person has a developmental disability or amentia by looking at them?
We have a placard for Joey. He doesn't bolt often, but when he does, it is dangerous. It has made a huge difference in our lives, when disability parking is appropriately placed next to a building, close to the entrance (as opposed to across the street or halfway down the block. Why do people do that? Those spaces help hardly anyone!) Offering disability parking that requires my child to be bused elsewhere (such as, say Williamsburg, or some of the local functions here) is also useless for us. (fortunately, Williamsburg has a lot for the taverns with a disability space, right behind the taverns we like to use. It's across a street, but at least doesn't require the shuttling- it's a real shame they shut down the other closer parking lots. If not for those tavern spots, we probably wouldn't be able to visit Williamsburg at all!) So even with the placard, life isn't all accessible and peaches and cream, but it does help a lot.
And for those folks who think you need to or should have a visible disability to have a placard and use those spots, I can only say, I hope you never need one. Seriously.
Tuesday, August 05, 2008
Space Lobsters
"nobody else is stronger than I am
yesterday I moved a mountain
I bet I could be your hero
I am a mighty little man"
We've been on a Steve Burns kick here. The boys are in a Blue's Clues mood, and it is hilarious to watch them shout at the TV and hear them sing the songs. If you're not up to date, Steve is 1. not dead and 2. now a rock godlet. We await his next CD, due out "soon", with bated breath.
Mommy has been checking out what Steve is doing at college- and the interviews he's been giving, and the other coolness he's been up to (gotta love a guy who randomly stopped by a kids' Blue's Clues birthday party because he saw the signs while driving by- just for fun, and because, well, he's Steve!). One thing that struck me was he said people are surprised when his real self doesn't match his TV persona- he isn't confused by colors and numbers, doesn't speak to condiments, and isn't "yokey-dopey."
But I disagree. In a way, he still is that TV Steve, in a gone-to-college kind of way. He has an excellent grasp of the absurd. This is a skill absolutely vital to raising and working with children, and perhaps more so with special needs kids (who can get through an IEP without a firm grasp of the absurd, and remain sane?)
So do check out our links to Steve Burns stuff. He's presenting himself the way children's TV folks ought to- maintaining an adult, but still wonderful and witty, persona that you would be proud to into your kids to when they get ready for grown-up stuff themselves. He's our hero. Like our Joey and our Andy, he's a mighty little man.
yesterday I moved a mountain
I bet I could be your hero
I am a mighty little man"
We've been on a Steve Burns kick here. The boys are in a Blue's Clues mood, and it is hilarious to watch them shout at the TV and hear them sing the songs. If you're not up to date, Steve is 1. not dead and 2. now a rock godlet. We await his next CD, due out "soon", with bated breath.
Mommy has been checking out what Steve is doing at college- and the interviews he's been giving, and the other coolness he's been up to (gotta love a guy who randomly stopped by a kids' Blue's Clues birthday party because he saw the signs while driving by- just for fun, and because, well, he's Steve!). One thing that struck me was he said people are surprised when his real self doesn't match his TV persona- he isn't confused by colors and numbers, doesn't speak to condiments, and isn't "yokey-dopey."
But I disagree. In a way, he still is that TV Steve, in a gone-to-college kind of way. He has an excellent grasp of the absurd. This is a skill absolutely vital to raising and working with children, and perhaps more so with special needs kids (who can get through an IEP without a firm grasp of the absurd, and remain sane?)
So do check out our links to Steve Burns stuff. He's presenting himself the way children's TV folks ought to- maintaining an adult, but still wonderful and witty, persona that you would be proud to into your kids to when they get ready for grown-up stuff themselves. He's our hero. Like our Joey and our Andy, he's a mighty little man.
Monday, August 04, 2008
Bath Time
I handle the nighttime routine in the house. For the last couple years, it has been Dad washing two boys. Said boys splashing in the tub, splashing, having a good old time, while Dad struggles to wash and dry them while keeping at least half the water in the tub, before dressing Joey and Andy.
Lately, there have been a lot of complaints- about the water (too hot, too cold, sometimes simultaneously), the drying ("I don't like that, that hurts"), and the dressing ("I don't want to", meaning they want to either be naked or wear their day clothes).
Enough, I said. So, with only one night's notice, the boys are now responsible for actually undressing, bathing, drying, and dressing. Are you cringing yet?
Joey was my first victim. I explain what he's going to do, and he begins stripping down. He gets into the tub as asked and turns the water on. Then he looks at me. This is where I usually step in and do it all. I say 'Is the water the right temperature?' It isn't, so I explain how to adjust the temperature, which he then does. 'Are you ready to wash your hair?', I ask. He is, so I explain how to get the sprayer turned on (shower head attachment). I talk him through wetting his hair, hand him the shampoo bottle, and talk him through the rest of the process. No fingers were lifted in the washing of this child. He decided when he was done- about five minutes later, got out, and I handed him the towel and told him to pick out his pajamas. He dried himself off, then took his pjs to his room and got dressed.
Joeymom was still working with Andy- something about counting to 10. He was struggling to do it in order, I think just being persnickety. So, having discussed Joey's summer reading list (which has heretofore gone unread) last night with Joeymom, I hunt down an eligible book and hand it to my big boy and have him start reading. It was Strega Nona. He got about a third of the way through tonight.
Andy did very well, too. He needed some help with the spray attachment- the bathroom walls are still dripping, I think. But overall, it was a smashing success. The real trick will be making this last, and then we can move on to brushing teeth, which should be a snap after all this.
School Funding
So last night I printed out Joey's school list and hopped over to the local Wal-mart to get Joey's supplies for the year. He needs to provide his own glue, pencils, scissors, dry erase markers, dry erase eraser, notebooks, folders, crayons, soap, ziplock bags, highlighters, tissues, paper towels, wipes, and sanitizer. This weekend was tax-free weekend here, so we also bought shoes, underwear, and socks.
The school list for Joey alone was $45, and only because Walmart does cool stuff like sell glue for $.22. Normally, these supplies would be two or three times what I paid, plus tax.
When I was in school, I think my mom bought loose-leaf paper, a binder, and pencils. Oh, and I needed a lot of erasers. Things like scissors, chalk (we didn't have dry-erase), crayons, paper towels, and soap were provided by the school. Funding for schools has been so devalued that these things now are provided by the students. I always toss in some extra, because I know several families in our classes can't afford $45 for school supplies. There are also some things not on the list that I put in, because I know they are used, like magic markers and construction paper. Teachers shouldn't be having to buy these things. But then, I don't think I should have to, either. I kinda feel like because I buy these things, the schools get less funding- because why should the general taxpayer pay for what individual families will provide?
We get stuck with that sword with therapy, too. Joey needs OT and speech to progress. The school offers minimal amounts of these services, so we supplement, paying for private therapy ourselves. Because we provide the private therapy, Joey progresses, so the school will not give us any more service. Instead of helping the school provide adequate service, I feel like I am enabling an irresponsible teenager.
The school list for Joey alone was $45, and only because Walmart does cool stuff like sell glue for $.22. Normally, these supplies would be two or three times what I paid, plus tax.
When I was in school, I think my mom bought loose-leaf paper, a binder, and pencils. Oh, and I needed a lot of erasers. Things like scissors, chalk (we didn't have dry-erase), crayons, paper towels, and soap were provided by the school. Funding for schools has been so devalued that these things now are provided by the students. I always toss in some extra, because I know several families in our classes can't afford $45 for school supplies. There are also some things not on the list that I put in, because I know they are used, like magic markers and construction paper. Teachers shouldn't be having to buy these things. But then, I don't think I should have to, either. I kinda feel like because I buy these things, the schools get less funding- because why should the general taxpayer pay for what individual families will provide?
We get stuck with that sword with therapy, too. Joey needs OT and speech to progress. The school offers minimal amounts of these services, so we supplement, paying for private therapy ourselves. Because we provide the private therapy, Joey progresses, so the school will not give us any more service. Instead of helping the school provide adequate service, I feel like I am enabling an irresponsible teenager.
You Might Be A Parent of a Special Needs Child When...
You Might Be A Parent of a Special Needs Child When...
1. Showering and sleep time are valuable, tradable commodities in your house.
2. Taking your kid(s) to the grocery store is an all-day adventure requiring all-hands-on-deck, and is referred to as an "educational opportunity."
3. You have to pay ababysitter respite worker $40 an hour, and a minimum of 4 hours, to attend a fifteen-minute meeting at school.
4. That fifteen-minute meeting ends up taking the entire four hours.
5. You have to buy a three-inch binder to hold all the necessary paperwork for any meeting or appointment about your child.
6. You have to buy a new binder every year, just for that year's paperwork.
7. You find yourself evaluating toys based on developmental and therapeutic value.
8. You have forgotten what it was like to be out of the house after 10 pm. Either you are already asleep by then, or you have to use the after-kids-are-asleep time to do things like go to the grocery store, wash clothes, clean the house, and blog.
1. Showering and sleep time are valuable, tradable commodities in your house.
2. Taking your kid(s) to the grocery store is an all-day adventure requiring all-hands-on-deck, and is referred to as an "educational opportunity."
3. You have to pay a
4. That fifteen-minute meeting ends up taking the entire four hours.
5. You have to buy a three-inch binder to hold all the necessary paperwork for any meeting or appointment about your child.
6. You have to buy a new binder every year, just for that year's paperwork.
7. You find yourself evaluating toys based on developmental and therapeutic value.
8. You have forgotten what it was like to be out of the house after 10 pm. Either you are already asleep by then, or you have to use the after-kids-are-asleep time to do things like go to the grocery store, wash clothes, clean the house, and blog.
Sunday, August 03, 2008
Fifteen Years Ago
Maddy has put us to the challenge: what are ten things you would tell someone you hadn't seen in 15 years?
Fifteen years ago would be... 1993. So, I had just graduated from college. What would I want in the Alumnae Quarterly?
1. I have three more degrees now. Two Master's and a PhD. No, I'm not fully employed, thanks.
2. I did get married. You don't know him, unless you were MUDding with me. In that case, it is Tilton/Dunstable. Yes, he's beautiful, thanks. We had a lovely honeymoon in Europe.
3. I have two little boys. One is autistic. Yes, they are gorgeous, too, thanks.
4. Yes, I got to India, twice. I did get to see the Sri Laksmi at Ellora. I saw the Taj Mahal. I saw the Didarganj Yaksi. I have not gotten to Madurai yet, but I am working on it.
5. I moved back to Fredericksburg in the end. We have a lovely little house right downtown.
6. Yes, I do teach. I have taught at Germanna Community College, Mary Washington College/University of Mary Washington, University of Virginia, University of Richmond, Shenandoah University, and St. Mary's College of Maryland. No, I have no permanent full-time gig anywhere. Adjuncting sucks in pay, but is great for teaching.
7. I did a cross-country trip with my now-husband a couple years after graduation. It was fabulous. We especially liked Yellowstone.
8. I am currently learning to be a genealogist. If any of my regulars want me to practice using their family, I'll take your contact info.
9. I am getting ready to start a number of small research projects, including a project about the restoration of the Thomas Stone Historic Site, the use of Hindu images at ancient Buddhist sites, and Baltimore Realist painting. All projects are contingent on having some actual time to work on them.
10. Life is good. No, it isn't what I imagined it would be fifteen years ago, but I have my family to hug, kitties to pet, a lovely home, plenty of food in the cupboards, and plenty of clothes to wear. I enjoy my family, my garden, and friends, though I often wish I could spend more time with all of the above.
If you decide to hop into the game, feel free, and let me know!
Fifteen years ago would be... 1993. So, I had just graduated from college. What would I want in the Alumnae Quarterly?
1. I have three more degrees now. Two Master's and a PhD. No, I'm not fully employed, thanks.
2. I did get married. You don't know him, unless you were MUDding with me. In that case, it is Tilton/Dunstable. Yes, he's beautiful, thanks. We had a lovely honeymoon in Europe.
3. I have two little boys. One is autistic. Yes, they are gorgeous, too, thanks.
4. Yes, I got to India, twice. I did get to see the Sri Laksmi at Ellora. I saw the Taj Mahal. I saw the Didarganj Yaksi. I have not gotten to Madurai yet, but I am working on it. 5. I moved back to Fredericksburg in the end. We have a lovely little house right downtown.
6. Yes, I do teach. I have taught at Germanna Community College, Mary Washington College/University of Mary Washington, University of Virginia, University of Richmond, Shenandoah University, and St. Mary's College of Maryland. No, I have no permanent full-time gig anywhere. Adjuncting sucks in pay, but is great for teaching.
7. I did a cross-country trip with my now-husband a couple years after graduation. It was fabulous. We especially liked Yellowstone.
8. I am currently learning to be a genealogist. If any of my regulars want me to practice using their family, I'll take your contact info.
9. I am getting ready to start a number of small research projects, including a project about the restoration of the Thomas Stone Historic Site, the use of Hindu images at ancient Buddhist sites, and Baltimore Realist painting. All projects are contingent on having some actual time to work on them.
10. Life is good. No, it isn't what I imagined it would be fifteen years ago, but I have my family to hug, kitties to pet, a lovely home, plenty of food in the cupboards, and plenty of clothes to wear. I enjoy my family, my garden, and friends, though I often wish I could spend more time with all of the above.
If you decide to hop into the game, feel free, and let me know!
Saturday, August 02, 2008
Friday, August 01, 2008
Tensions: What is A Meltdown? (A ramble)
Good ol' abfh. She gives me so much to blog about.
There is a sort of tension that runs through the "autism community" between autistic people and parents who are raising autistic people. Often this tension is constructive in its way. Most "autism parents" don't have autism, and they are working hard to understand how to best support and work with their children. Hearing from people who actually have autism is a huge help in trying to consider the way autistic people see and experience the world, the consequences of decisions made on a child's behalf. How does one advocate effectively and respectfully?
In our latest episode, abfh takes on the term "meltdown." It is, indeed, a term that causes consternation, because it is, in its essence, a negative term for a negative situation. In the comments, I noticed that commenters were concerned about the definition of the term. Abfh is concerned that a normal child's whining or tantrum is viewed differently than one had by an autistic child. These are very valid concerns, and ones that can very well feed into a stereotype of autism causing violence. However, I found abfh's example to be way off- feeding into the idea that parents of autistic kids are "faking it", that their lives are no different from other parents, if they would just suck it up and see their autistic kids in the same light as their non-autistic children.
In other words, if we're tired and drained and feeling depressed and having trouble raising our disabled kids, it is... see it coming?... our own damn fault.
Now, this ain't no pity party. This isn't about oh poor me I have an autistic child and life sucks. Because I don't feel that way. Life is great. My boys are beautiful. Unique and beautiful.
Joey is not a violent person. He's very laid back, easy going. Andy is my loose cannon. I would have to say, anecdotally, that non-autistic people, especially those with sensory issues, are more likely to be violent than non-autistic people, even when both persons are generally described as peaceful, well-behaved kids. When I hear that all-too-familiar "crack" sound in the back seat, I can lay my money on who hit whom with a better than 50/50 odds.
However, situations are very different. Joey tends to be unexpectedly explosive. He got frustrated with a task last week and struck his aide. If a non-autistic child struck a teacher, they would be suspended. Why wasn't Joey? By understanding his frustration and his problems with impulse control, focus, language, and frustration tolerance, are we contributing to a stereotype of violence?
How about we take another look at the mom in the grocery store? I know this scenario quite well. One child is autistic, the other one isn't. If Joey gets overwhelmed, we have a meltdown (or used to). If Andy whines about wanting a toy, we call that a whinefest. What is the difference?
Any child who is hitting (themselves or others), biting (themselves or others), flailing, tossing their bodies into walls (or floors, or furniture, or people), and/or smacking their heads against surfaces (or people), usually while screaming (but not always) is having a meltdown. I don't care what triggered the behavior. I don't care if the person is autistic, not, or from another planet. The complete loss of functionality and control is, for us, the very mark and essence of a meltdown. All sensory systems go into overload. Communication systems often shut down partially or completely. Self-regulation shuts down. Yes, folks- welcome to Chernobyl.
When Andy wants a toy, it may be loud, inconvenient, and annoying. I understand there are children who then escalate to meltdown over toys, but I have never seen it. If Andy started smacking me over a toy, biting himself, or flailing, I would leave the store immediately in order to contain the situation. If I knew he did this regularly, I would not bring him to the store- in other words, I would do for him as I would do for Joey: recognize triggers as best I could, and work to either manage them or avoid them. But he doesn't.
When Joey gets truly overwhelmed, he descends quickly into meltdown. Joey has never had severe issues in the store, but he often has difficulty with motor tasks such as dressing- a task that often lead to meltdowns when I began this blog. HE would get overwhelmed with the frustration, put his face as close as he could to mine and scream his lungs out. Unless I acted quickly, he would then proceed to bite his wrists. This is a level 3 meltdown. For us, unless it is dramatic and involves the possibility of injury, it isn't a meltdown. The screaming and loss of function is level one. Flailing is level 2. Biting is our proceeding to level 3.
When I say Joey has had a level 10 meltdown, I am talking about a dangerous situation. Our level 10s are not the worst I have heard of, but they are our worst- and they are very violent and physical situations. Yes, Joey has had level 10s in public. It has, thankfully, been a long time.
Do non-autistic kids have meltdowns? Yes. Yes they do. Do autistic kids have more? In my experience, yes, they do. Non-autistic kids do not face the kind of constant frustrations that autistic kids do, so non-autistic kids do not have the impetus to meltdown as much. Does that make autistic kids more violent? No, but it can mean more effort is needed to support these kids, to manage triggers and provide self-regulation skills, so that their frustration and anxiety levels are more comparable to non-autistic kids.
One thing I have learned- and yes, I mean that I didn't know it before- is that no person melts down without a reason. I may not know the reason, but there is one. As I am the adult, it is my job to figure out the puzzle and discover what is feeding into the child's frustration (not just the trigger). It may not be a single reason- a build up of frustrations can cause a person to act out, tantrum, or melt down. That is important information to disseminate.
The stereotype of the violent autistic is not because autistic people melt down, but because people not familiar with autism do not understand the triggers and frustrations. It looks random. Because those reasons and triggers look random, they are not managed, and so autistic people can seem to be melting down more than a non-autistic person would. I think if a non-autistic person had the same level of frustration, stress, and anxiety that many autistic people face every day, they would melt down just as much, just as often, and just as violently.
When mom goes home from the grocery store to blog about that meltdown, it is partly to gain assurance that other people's kids do this- after all, it is dramatic and often requires energetic intervention to prevent harm- to gain insights and advice about how to manage issues that may have fed into the melt down, and often to vent their own frustration about not being able to manage effectively, act quickly, or support their child enough. I know when Joey melts down, I am sure it is because I have failed as a parent. If only I had understood the signals, the warning signs, the triggers, the frustrations, then Joey wouldn't be sporting a pattern of tooth-sized bruises on his wrist. Meltdowns are scary, not just for the person melting down, but for everyone around them. It is a volcano of frustration venting the pressure.
Blogging means fewer parents melting down. After all, if we do, it really is our own fault. We have the skills and language to vent, right?
P.S.- It is, once again, School Tax Holiday. The Annual Torture he Children At The Shoe Store is tomorrow. I will keep you posted.
There is a sort of tension that runs through the "autism community" between autistic people and parents who are raising autistic people. Often this tension is constructive in its way. Most "autism parents" don't have autism, and they are working hard to understand how to best support and work with their children. Hearing from people who actually have autism is a huge help in trying to consider the way autistic people see and experience the world, the consequences of decisions made on a child's behalf. How does one advocate effectively and respectfully?
In our latest episode, abfh takes on the term "meltdown." It is, indeed, a term that causes consternation, because it is, in its essence, a negative term for a negative situation. In the comments, I noticed that commenters were concerned about the definition of the term. Abfh is concerned that a normal child's whining or tantrum is viewed differently than one had by an autistic child. These are very valid concerns, and ones that can very well feed into a stereotype of autism causing violence. However, I found abfh's example to be way off- feeding into the idea that parents of autistic kids are "faking it", that their lives are no different from other parents, if they would just suck it up and see their autistic kids in the same light as their non-autistic children.
In other words, if we're tired and drained and feeling depressed and having trouble raising our disabled kids, it is... see it coming?... our own damn fault.
Now, this ain't no pity party. This isn't about oh poor me I have an autistic child and life sucks. Because I don't feel that way. Life is great. My boys are beautiful. Unique and beautiful.
Joey is not a violent person. He's very laid back, easy going. Andy is my loose cannon. I would have to say, anecdotally, that non-autistic people, especially those with sensory issues, are more likely to be violent than non-autistic people, even when both persons are generally described as peaceful, well-behaved kids. When I hear that all-too-familiar "crack" sound in the back seat, I can lay my money on who hit whom with a better than 50/50 odds.
However, situations are very different. Joey tends to be unexpectedly explosive. He got frustrated with a task last week and struck his aide. If a non-autistic child struck a teacher, they would be suspended. Why wasn't Joey? By understanding his frustration and his problems with impulse control, focus, language, and frustration tolerance, are we contributing to a stereotype of violence?
How about we take another look at the mom in the grocery store? I know this scenario quite well. One child is autistic, the other one isn't. If Joey gets overwhelmed, we have a meltdown (or used to). If Andy whines about wanting a toy, we call that a whinefest. What is the difference?
Any child who is hitting (themselves or others), biting (themselves or others), flailing, tossing their bodies into walls (or floors, or furniture, or people), and/or smacking their heads against surfaces (or people), usually while screaming (but not always) is having a meltdown. I don't care what triggered the behavior. I don't care if the person is autistic, not, or from another planet. The complete loss of functionality and control is, for us, the very mark and essence of a meltdown. All sensory systems go into overload. Communication systems often shut down partially or completely. Self-regulation shuts down. Yes, folks- welcome to Chernobyl.
When Andy wants a toy, it may be loud, inconvenient, and annoying. I understand there are children who then escalate to meltdown over toys, but I have never seen it. If Andy started smacking me over a toy, biting himself, or flailing, I would leave the store immediately in order to contain the situation. If I knew he did this regularly, I would not bring him to the store- in other words, I would do for him as I would do for Joey: recognize triggers as best I could, and work to either manage them or avoid them. But he doesn't.
When Joey gets truly overwhelmed, he descends quickly into meltdown. Joey has never had severe issues in the store, but he often has difficulty with motor tasks such as dressing- a task that often lead to meltdowns when I began this blog. HE would get overwhelmed with the frustration, put his face as close as he could to mine and scream his lungs out. Unless I acted quickly, he would then proceed to bite his wrists. This is a level 3 meltdown. For us, unless it is dramatic and involves the possibility of injury, it isn't a meltdown. The screaming and loss of function is level one. Flailing is level 2. Biting is our proceeding to level 3.
When I say Joey has had a level 10 meltdown, I am talking about a dangerous situation. Our level 10s are not the worst I have heard of, but they are our worst- and they are very violent and physical situations. Yes, Joey has had level 10s in public. It has, thankfully, been a long time.
Do non-autistic kids have meltdowns? Yes. Yes they do. Do autistic kids have more? In my experience, yes, they do. Non-autistic kids do not face the kind of constant frustrations that autistic kids do, so non-autistic kids do not have the impetus to meltdown as much. Does that make autistic kids more violent? No, but it can mean more effort is needed to support these kids, to manage triggers and provide self-regulation skills, so that their frustration and anxiety levels are more comparable to non-autistic kids.
One thing I have learned- and yes, I mean that I didn't know it before- is that no person melts down without a reason. I may not know the reason, but there is one. As I am the adult, it is my job to figure out the puzzle and discover what is feeding into the child's frustration (not just the trigger). It may not be a single reason- a build up of frustrations can cause a person to act out, tantrum, or melt down. That is important information to disseminate.
The stereotype of the violent autistic is not because autistic people melt down, but because people not familiar with autism do not understand the triggers and frustrations. It looks random. Because those reasons and triggers look random, they are not managed, and so autistic people can seem to be melting down more than a non-autistic person would. I think if a non-autistic person had the same level of frustration, stress, and anxiety that many autistic people face every day, they would melt down just as much, just as often, and just as violently.
When mom goes home from the grocery store to blog about that meltdown, it is partly to gain assurance that other people's kids do this- after all, it is dramatic and often requires energetic intervention to prevent harm- to gain insights and advice about how to manage issues that may have fed into the melt down, and often to vent their own frustration about not being able to manage effectively, act quickly, or support their child enough. I know when Joey melts down, I am sure it is because I have failed as a parent. If only I had understood the signals, the warning signs, the triggers, the frustrations, then Joey wouldn't be sporting a pattern of tooth-sized bruises on his wrist. Meltdowns are scary, not just for the person melting down, but for everyone around them. It is a volcano of frustration venting the pressure.
Blogging means fewer parents melting down. After all, if we do, it really is our own fault. We have the skills and language to vent, right?
P.S.- It is, once again, School Tax Holiday. The Annual Torture he Children At The Shoe Store is tomorrow. I will keep you posted.
Thursday, July 31, 2008
Vignettes: How Far We Have Come
We sit in one of our regular venues, but not on our regular day.
"No mac and cheese today," Joey repeats for the fifteenth time as we are shown a table. "Mac and cheese on Monday."
"Yes, love," I hug him to help calm him. "They only have mac and cheese on Mondays." (this is actually true; this place has a food bar with daily "specials." Mac and cheese is Mondays.) "Let's see what else you can have."
Andy presses against Grandma, placing his feet on the wall and his back against Grandma's shoulder. No part of him actually touches the seat.
"No Mac and cheese today. No mac-a-roni and cheese."
"No, love. Here, look, read here. You can have chicken strips, or a cheeseburger..."
"CHEEEEEESEburger?" Andy croons with faux surprise.
"... or a grilled cheese sandwich. What would you like to eat?"
"Mac and cheese." He points to one of the games on teh kid menu, a word-find... with mac and cheese as one of the words to find.
"They don't have that on Thursday, honey. Would you like chicken strips?"
"Chicken strips! I want chicken strips!" Andy claps and gives Grandma's shoulder a break by flopping suddenly onto his bottom.
Joey sadly orders a grilled cheese sandwich. Andy, who usually just gets the food bar so he can have all-you-can-stuff-in-your-mouth-bacon-buffet, orders chicken strips. We get some jello and green beans from the bar to try to calm Joey while he waits for the food he doesn't really want.
It arrives, and Joey wolfs down the sandwich, though he continues to look depressed while doing it, and does it by first picking off some cheese, then nibbling the bread, then digging off more cheese...
"I want chicken," Joey announces, eyeing Andy's plate.
"You just had your lunch. That is Andys lunch," I remind him. "Do you want some salad?" Joey looks dejected.
"You want chicken?" Andy chimes. "Here, I cut you a piece." With that Andy carefully cuts a chicken strip in half, and gives the piece to Joey, who is ecstatic.
I think my mom could have cried.
********
There is a brightly-colored restaurant called "Joe's Crab Shack" next to one of our regular haunts. My apologies to fans of the chain, but ours really sucks. The food is bad, the service terrible, and we don't bother to go back. However, the exterior is extremely interesting and attractive to children. Adding to this charm is the fact it sports Joey's name in big, red letters all over it.
"Why don't we go there?" Joey demands, indicating the place with eyes and turned head rather than pointing.
"Yucky food!" Andy replies matter-of-factly, and without missing a beat. Yes, indeed.
********
We wait for Andy to come out of OT. I get on the floor and play block-building with Joey, but he can't focus all that long. He gets up and starts pretending to be a dinosaur, a t-rex, and knocks over my building. I rebuild, and he roars and knocks everything down again.
"I'm a dinosaur!" he roars, and wreaks more havoc upon my quickly-constructed village. He stomps out into the hall, roars, stomps back to repeat the catastrophe. He roars more and stomps out into the hall.
"And people keep saying autistic kids have no imagination," my mom chortles.
Rooooooaaaaaaaar stomp stomp stomp.
*********
"What did you do in school today?" I press Joey for some conversation. He flashes me "the look", but attempts to create words, anyway. You know "the look." The "I can't believe you're going to make me work" look.
"I had fun." Ah, the canned answer.
"What did you do to have fun?" I press.
"Igisee {snork snork hiss hiss}"* he flops back, tosses his head to one side and chants to avoid the task.
"Silly boy. Tell me one thing you did today."
"I play with Mrs. Huff."
"Did you play a game?"
"Igisee {snork snork hiss hiss}!"
"Did you play a game?"
"I got a prize!" Well, he must have done something good. They don't always get prizes.
"Good job! Wow!"
"No prize today! SAAAAAWY!Sumday!**"
"No prize?"
"Igisee {snork snork hiss hiss}!"
"Did you win a prize today, Joey?"
(Suddenly with focus) "Yes! I won a prize! I win a sticker!"
"Did you win a sticker at school?"
"No. I get a sticker and Andy doesn't." Ah, He is referring to our sticker campaign.
"Yes, you are well on your way to earning a sticker. What was your prize today?"
"I played with Mrs. Huff and Mrs. Macy." This is a scripted answer. To a different question.
"Tell me one thing you did today, Joey."
"I ride bus 30!"
"Yes, you did! All the way to school! What did you do at school?"
"I had fun."
"What did you do to have fun?"
"I did bubble machine!"
Ah, the trickles of gold that fall from those lips.
*Joey often takes phrases he likes and "soundifies" them- the words themselves melt into approximation sounds, and thus lose meaning in favor of perserveration on the sounds, tones, and inflections. Reduced to nonsense sound, he then uses them to "fill" voids of sound, as oral stim, as avoidance strategies, or uses them for sensory processing or language processing stall. This particular set of sounds is from "I go to sleep!" and then the sounds of pretend snoring. My response, "silly boy", is often demanded by him ("Say, 'Silly boy!', Mommy!"), and seems to be a self-imposed cue for continuing conversation.
** "Sorry! Someday!" This is apparently a pat answer from school when he can't have something or do something, especially things he isn't old enough to have or do.
"No mac and cheese today," Joey repeats for the fifteenth time as we are shown a table. "Mac and cheese on Monday."
"Yes, love," I hug him to help calm him. "They only have mac and cheese on Mondays." (this is actually true; this place has a food bar with daily "specials." Mac and cheese is Mondays.) "Let's see what else you can have."
Andy presses against Grandma, placing his feet on the wall and his back against Grandma's shoulder. No part of him actually touches the seat.
"No Mac and cheese today. No mac-a-roni and cheese."
"No, love. Here, look, read here. You can have chicken strips, or a cheeseburger..."
"CHEEEEEESEburger?" Andy croons with faux surprise.
"... or a grilled cheese sandwich. What would you like to eat?"
"Mac and cheese." He points to one of the games on teh kid menu, a word-find... with mac and cheese as one of the words to find.
"They don't have that on Thursday, honey. Would you like chicken strips?"
"Chicken strips! I want chicken strips!" Andy claps and gives Grandma's shoulder a break by flopping suddenly onto his bottom.
Joey sadly orders a grilled cheese sandwich. Andy, who usually just gets the food bar so he can have all-you-can-stuff-in-your-mouth-bacon-buffet, orders chicken strips. We get some jello and green beans from the bar to try to calm Joey while he waits for the food he doesn't really want.
It arrives, and Joey wolfs down the sandwich, though he continues to look depressed while doing it, and does it by first picking off some cheese, then nibbling the bread, then digging off more cheese...
"I want chicken," Joey announces, eyeing Andy's plate.
"You just had your lunch. That is Andys lunch," I remind him. "Do you want some salad?" Joey looks dejected.
"You want chicken?" Andy chimes. "Here, I cut you a piece." With that Andy carefully cuts a chicken strip in half, and gives the piece to Joey, who is ecstatic.
I think my mom could have cried.
********
There is a brightly-colored restaurant called "Joe's Crab Shack" next to one of our regular haunts. My apologies to fans of the chain, but ours really sucks. The food is bad, the service terrible, and we don't bother to go back. However, the exterior is extremely interesting and attractive to children. Adding to this charm is the fact it sports Joey's name in big, red letters all over it.
"Why don't we go there?" Joey demands, indicating the place with eyes and turned head rather than pointing.
"Yucky food!" Andy replies matter-of-factly, and without missing a beat. Yes, indeed.
********
We wait for Andy to come out of OT. I get on the floor and play block-building with Joey, but he can't focus all that long. He gets up and starts pretending to be a dinosaur, a t-rex, and knocks over my building. I rebuild, and he roars and knocks everything down again.
"I'm a dinosaur!" he roars, and wreaks more havoc upon my quickly-constructed village. He stomps out into the hall, roars, stomps back to repeat the catastrophe. He roars more and stomps out into the hall.
"And people keep saying autistic kids have no imagination," my mom chortles.
Rooooooaaaaaaaar stomp stomp stomp.
*********
"What did you do in school today?" I press Joey for some conversation. He flashes me "the look", but attempts to create words, anyway. You know "the look." The "I can't believe you're going to make me work" look.
"I had fun." Ah, the canned answer.
"What did you do to have fun?" I press.
"Igisee {snork snork hiss hiss}"* he flops back, tosses his head to one side and chants to avoid the task.
"Silly boy. Tell me one thing you did today."
"I play with Mrs. Huff."
"Did you play a game?"
"Igisee {snork snork hiss hiss}!"
"Did you play a game?"
"I got a prize!" Well, he must have done something good. They don't always get prizes.
"Good job! Wow!"
"No prize today! SAAAAAWY!Sumday!**"
"No prize?"
"Igisee {snork snork hiss hiss}!"
"Did you win a prize today, Joey?"
(Suddenly with focus) "Yes! I won a prize! I win a sticker!"
"Did you win a sticker at school?"
"No. I get a sticker and Andy doesn't." Ah, He is referring to our sticker campaign.
"Yes, you are well on your way to earning a sticker. What was your prize today?"
"I played with Mrs. Huff and Mrs. Macy." This is a scripted answer. To a different question.
"Tell me one thing you did today, Joey."
"I ride bus 30!"
"Yes, you did! All the way to school! What did you do at school?"
"I had fun."
"What did you do to have fun?"
"I did bubble machine!"
Ah, the trickles of gold that fall from those lips.
*Joey often takes phrases he likes and "soundifies" them- the words themselves melt into approximation sounds, and thus lose meaning in favor of perserveration on the sounds, tones, and inflections. Reduced to nonsense sound, he then uses them to "fill" voids of sound, as oral stim, as avoidance strategies, or uses them for sensory processing or language processing stall. This particular set of sounds is from "I go to sleep!" and then the sounds of pretend snoring. My response, "silly boy", is often demanded by him ("Say, 'Silly boy!', Mommy!"), and seems to be a self-imposed cue for continuing conversation.
** "Sorry! Someday!" This is apparently a pat answer from school when he can't have something or do something, especially things he isn't old enough to have or do.
The Vaccination Question
One of the consequences of wandering all over town with a bumper sticker that says "Yes! You Can Ask Me About Autism!" is that people stop you and ask you about autism. I got another mom asking me the #1 question today: "I'm supposed to get my kids vaccinated today... what do you think? Should I do it?"
I took some time to talk with this mom, because we had some time, and she has kids in the same camp as Andy. Besides, she had chased me down from the parking lot, and the fear behind the question is one that one must take care and investigate before answering. What is she really asking?
Some are honestly asking, "Do you think vaccinations cause autism?" That is a very simple question to answer. No.
Some are asking, "Which do you fear more- these shot-prevented diseases, or autism?" That's an easy one, too. I am far more afraid of measles, mumps, rubella, meningitis, whooping cough, polio, chicken pox, hepatitis, tetanus, typhoid, pneumonia, diphtheria, and rotavirus than I am of autism. All of those diseases can kill you. I do not find autism to be frightening, other than the whole mystery of the unknown, since education about special needs in the general population is practically non-existent. Having to fight the school district? terrifying. Then I refer them back to question 1, and the fact that there is no this-or-that question here. If you are really really concerned, talk to your pediatrician about an altered schedule so you can spread out the shots and watch for side effects more effectively. High fevers can do strange things to a child's brain, and you need to watch for them. I would be more worried about seizures, though.
Some are asking, "Is autism worse than death?" This is really a slightly different question from #2. The absolute terror behind this question is something I find rattling. This is a parent paralyzed. They do not want to be blamed for their child being disabled. They don't want to roll the dice and take a chance of harming the child. They have never seen measles, mumps, or whooping cough. Polio is, to them, a distant legend. Pneumonia is a cough. Diphtheria is something they get in third-world countries. But autism... that has been very much to the fore, and the images they see in the media are not images they want projected on themselves and their children. Autism is not worse than death. It is a different way of thinking, feeling, and experiencing the world. It can result in severe disabilities, such as communication disorders (including social skill issues), sensory disorders, fine motor skill problems, and even gross motor skill issues. Not all of these issues are disabling, and there are therapies available to address these issues, if you can lay hands on therapists, time, and money. It is easier to support your autistic child than it used to be- there are more people out here like me, willing to help, there have been more trails blazed before us, there is more understanding in the educational and medical communities (though there is a lot more work to do), there are law offices who specialize in advocating for and representing autistic people and their families, than there was even ten years ago. I often invite these kinds of parents, asking this question, to come meet Joey, if he is on hand. I give them the address to this blog. I give them my handy-dandy sheet of websites to research autism and special needs issues.
And then there are some who are really asking, "What is autism?" The word is a vague shadow on the edges of information. They have no thought of not vaccinating their kids, because the vague shadows of the diseases they are protecting their kids from is still clearer than that of autism. There is curiosity, intrigue. They have heard fuzzy rumors, maybe caught a glimpse of Jenny McCarthy or seen a few minutes of Rainman, maybe they watch Eureka. This is another case of come-meet-my-kid and and a nice handout to take with them after you've talked a bit and introduced Joey. They don't want too much information- just enough to take the edge off mild curiosity.
Then there the parents asking, "Is my child autistic?" Now, I am not a developmental pediatrician. I can't diagnose kids. I do recommend that anyone worried about their kid should have that child independently screened (not by the school- by a developmental pediatrician or someone else with the credentials and ability to diagnose a child with an ASD or discount ASD.) There are kids out there who are eccentric without being autistic. Sensory integration issues can easily be SPD and not autism. There are disorders that "look like" autism, especially in young children, such as Tourette Syndrome. I always want to take some time with these parents. They are usually scared, worried, and feeling desperate and guilty. What they usually need is reassurance, a kind I don't really feel I can give (I can't give them that resounding, "No!"). A kid that looks normal to me might not be; a kid who looks really in need of service may be normal. I have no idea, I'm not trained for that. All I can say is, get the child screened, and if it comes back an ASD diagnosis, here I am to help you.
Don't be afraid. Vaccinate your children.
I took some time to talk with this mom, because we had some time, and she has kids in the same camp as Andy. Besides, she had chased me down from the parking lot, and the fear behind the question is one that one must take care and investigate before answering. What is she really asking?
Some are honestly asking, "Do you think vaccinations cause autism?" That is a very simple question to answer. No.
Some are asking, "Which do you fear more- these shot-prevented diseases, or autism?" That's an easy one, too. I am far more afraid of measles, mumps, rubella, meningitis, whooping cough, polio, chicken pox, hepatitis, tetanus, typhoid, pneumonia, diphtheria, and rotavirus than I am of autism. All of those diseases can kill you. I do not find autism to be frightening, other than the whole mystery of the unknown, since education about special needs in the general population is practically non-existent. Having to fight the school district? terrifying. Then I refer them back to question 1, and the fact that there is no this-or-that question here. If you are really really concerned, talk to your pediatrician about an altered schedule so you can spread out the shots and watch for side effects more effectively. High fevers can do strange things to a child's brain, and you need to watch for them. I would be more worried about seizures, though.
Some are asking, "Is autism worse than death?" This is really a slightly different question from #2. The absolute terror behind this question is something I find rattling. This is a parent paralyzed. They do not want to be blamed for their child being disabled. They don't want to roll the dice and take a chance of harming the child. They have never seen measles, mumps, or whooping cough. Polio is, to them, a distant legend. Pneumonia is a cough. Diphtheria is something they get in third-world countries. But autism... that has been very much to the fore, and the images they see in the media are not images they want projected on themselves and their children. Autism is not worse than death. It is a different way of thinking, feeling, and experiencing the world. It can result in severe disabilities, such as communication disorders (including social skill issues), sensory disorders, fine motor skill problems, and even gross motor skill issues. Not all of these issues are disabling, and there are therapies available to address these issues, if you can lay hands on therapists, time, and money. It is easier to support your autistic child than it used to be- there are more people out here like me, willing to help, there have been more trails blazed before us, there is more understanding in the educational and medical communities (though there is a lot more work to do), there are law offices who specialize in advocating for and representing autistic people and their families, than there was even ten years ago. I often invite these kinds of parents, asking this question, to come meet Joey, if he is on hand. I give them the address to this blog. I give them my handy-dandy sheet of websites to research autism and special needs issues.
And then there are some who are really asking, "What is autism?" The word is a vague shadow on the edges of information. They have no thought of not vaccinating their kids, because the vague shadows of the diseases they are protecting their kids from is still clearer than that of autism. There is curiosity, intrigue. They have heard fuzzy rumors, maybe caught a glimpse of Jenny McCarthy or seen a few minutes of Rainman, maybe they watch Eureka. This is another case of come-meet-my-kid and and a nice handout to take with them after you've talked a bit and introduced Joey. They don't want too much information- just enough to take the edge off mild curiosity.
Then there the parents asking, "Is my child autistic?" Now, I am not a developmental pediatrician. I can't diagnose kids. I do recommend that anyone worried about their kid should have that child independently screened (not by the school- by a developmental pediatrician or someone else with the credentials and ability to diagnose a child with an ASD or discount ASD.) There are kids out there who are eccentric without being autistic. Sensory integration issues can easily be SPD and not autism. There are disorders that "look like" autism, especially in young children, such as Tourette Syndrome. I always want to take some time with these parents. They are usually scared, worried, and feeling desperate and guilty. What they usually need is reassurance, a kind I don't really feel I can give (I can't give them that resounding, "No!"). A kid that looks normal to me might not be; a kid who looks really in need of service may be normal. I have no idea, I'm not trained for that. All I can say is, get the child screened, and if it comes back an ASD diagnosis, here I am to help you.
Don't be afraid. Vaccinate your children.
Tuesday, July 29, 2008
Fear Mongering
I often have a hard time sleeping at night. Sometimes I lay awake, wondering. Or I wander about the yard, worrying. Or I just freeze in those moments after the boys are in bed, pondering. I don't have time during the day, when I have boys and life is hurrying along. But in the pauses... I think about it.
What is this world I am trying to prepare Joey and Andy for?
The stories stream in from all quarters. Autistic people threatened with isolation, arrest, death. Some threatening to burn down the home of an autistic child. People who insist autism is 99% a discipline problem. Families with autistic people being tossed out of stores, planes, restaurants, schools, churches. Labels attached to autistic kids: trainwrecks. Idiots. Weirdos. Freaks.
I see it. Kids who tell Joey to go away on the playground, or who avoid him altogether. Adults who recoil from him when I explain he is autistic. This is the world I am preparing him for. How do you prepare a child from that kind of discrimination? How do you help a person grow and understand how beautiful and wonderful and special they are, when you know people all around them are going to be sending a different message?
I carefully cut the zinnias, because I know it will still be a couple of days before the boys get into the back yard now. Our afternoons are already booked with speech and OT, the mornings with camp and school. By Friday, there will be new blooms, and it's better for the plants to cut them. I place them carefully in the vase with a few roses, just to fill the vase really. I'll put them on the mantle and tell them that these are their zinnias, from their garden. Andy will get it. I don't know whether Joey will understand or not, but perhaps when we wander out Friday, he'll see the new ones. The sunflowers have their head buds on them, so we can talk about that, I can show them the sunflower buds in our book about sunflowers growing. The tomato vines are finally setting tomatoes (who ever heard of not having any tomatoes at the end of July???). I ponder a brief lesson on tomatoes and seeds, but store it away as a "just in case". It isn't likely that Joey will be able to focus on the garden long enough for a lesson. Maybe I'll do that when they start to ripen. Maybe they'll be going pink by Friday, and that will hold his attention. Focus and attention are real issues for us. We were hoping when he learned to read, he'd get interested in books, but that hasn't really happened. It's all just words to him.
The zinnias are all different colors. there is a sunny orange one, a sparkling white one, a bold red one. One is a purply pink, another a creamy cross between ivory and lemon yellow. The soft pink of the roses makes the more brash colors pop out.
Is this world going to be such a terrible, tough place for Joey? The world certainly has its violent crimsons, but isn't it mostly soft pinks, butter yellows, warm oranges? What about the ladies and the older men who see Joey in the store, and crinkle up their faces in delighted smiles, a response to his giggles and grins? What about the ladies in church who tell his classmates that God made us all as we are, and loves us all as we are, and we should love all our fellows the same way, as they are? What about the folks who, realizing Joey is different, slow down their speech and try to engage him a little more? What about the family in front of us in the awards ceremony who, seeing Joey going across the stage for his reading award, clapped enthusiastically and noted, "he must be smart, he's the only one in his class to get the award!" even though they had never laid eyes on him before? Do we notice the fear stories all the more, because they pop out of a world that is, for the most part, trying to be supportive of my child and my family?
Perhaps that is a lesson for my Joey and my Andy: always be kind. Help and kindness unlooked-for is a treasure that makes the world a better place.
What is this world I am trying to prepare Joey and Andy for?
The stories stream in from all quarters. Autistic people threatened with isolation, arrest, death. Some threatening to burn down the home of an autistic child. People who insist autism is 99% a discipline problem. Families with autistic people being tossed out of stores, planes, restaurants, schools, churches. Labels attached to autistic kids: trainwrecks. Idiots. Weirdos. Freaks.
I see it. Kids who tell Joey to go away on the playground, or who avoid him altogether. Adults who recoil from him when I explain he is autistic. This is the world I am preparing him for. How do you prepare a child from that kind of discrimination? How do you help a person grow and understand how beautiful and wonderful and special they are, when you know people all around them are going to be sending a different message?
I carefully cut the zinnias, because I know it will still be a couple of days before the boys get into the back yard now. Our afternoons are already booked with speech and OT, the mornings with camp and school. By Friday, there will be new blooms, and it's better for the plants to cut them. I place them carefully in the vase with a few roses, just to fill the vase really. I'll put them on the mantle and tell them that these are their zinnias, from their garden. Andy will get it. I don't know whether Joey will understand or not, but perhaps when we wander out Friday, he'll see the new ones. The sunflowers have their head buds on them, so we can talk about that, I can show them the sunflower buds in our book about sunflowers growing. The tomato vines are finally setting tomatoes (who ever heard of not having any tomatoes at the end of July???). I ponder a brief lesson on tomatoes and seeds, but store it away as a "just in case". It isn't likely that Joey will be able to focus on the garden long enough for a lesson. Maybe I'll do that when they start to ripen. Maybe they'll be going pink by Friday, and that will hold his attention. Focus and attention are real issues for us. We were hoping when he learned to read, he'd get interested in books, but that hasn't really happened. It's all just words to him.
The zinnias are all different colors. there is a sunny orange one, a sparkling white one, a bold red one. One is a purply pink, another a creamy cross between ivory and lemon yellow. The soft pink of the roses makes the more brash colors pop out.
Is this world going to be such a terrible, tough place for Joey? The world certainly has its violent crimsons, but isn't it mostly soft pinks, butter yellows, warm oranges? What about the ladies and the older men who see Joey in the store, and crinkle up their faces in delighted smiles, a response to his giggles and grins? What about the ladies in church who tell his classmates that God made us all as we are, and loves us all as we are, and we should love all our fellows the same way, as they are? What about the folks who, realizing Joey is different, slow down their speech and try to engage him a little more? What about the family in front of us in the awards ceremony who, seeing Joey going across the stage for his reading award, clapped enthusiastically and noted, "he must be smart, he's the only one in his class to get the award!" even though they had never laid eyes on him before? Do we notice the fear stories all the more, because they pop out of a world that is, for the most part, trying to be supportive of my child and my family?
Perhaps that is a lesson for my Joey and my Andy: always be kind. Help and kindness unlooked-for is a treasure that makes the world a better place.
Monday, July 28, 2008
Talking About Joey
One thing that happens when I go out into the world is I end up talking a lot about Joey. I think it is partly because I have a fresh set of captive-audience ears at hand, but somehow autism and Joey fall into the conversation. Sometimes people ask. Sometimes it just seems to appear in the conversation, I suspect because my brain just leans that way.
Several of my New Jersey crowd have special needs kids at various levels. How they cope it something very interesting to me. Whether therapy is left off a an inconvenience, their kids are relabeled to fit them into certain classrooms or situations, or they are out there fighting and placing their kids in various activities and placements, they all have ideas of how to cope, how to help their kids cope, how to pay the bills and have a life. They are all apparently better at this last item than I am, because they're all published and working on projects and going on with their life plans.
OK, that go off track. Back to the point. I talk a lot about Joey. I talk to people in the park. I talk to my New Jersey crowd. I talk to folks in the train station. I talk to people in McDonald's. I talk with people in the grocery store. The questions folks ask, the observations they make, the advice they want to offer, it has its ups and downs, pros and cons.
It always amazes me how many people still think autism is caused by vaccines. This idea is so entrenched in the popular imagination that when you speak against the idea, people start to argue with you. People who have no clue what they are talking about, who ten minutes before when the conversation started didn't even know autistic people can speak, relate, and show emotion, are suddenly experts at vaccines and how they cause autism. Weird.
It always amazes me how many folks are surprised when I say Joey was autistic from birth. One person this weekend even replied with a shocked, "isn't that really rare?" Well, no. Most of the studies I have seen seem to indicated it is about half-and-half based on parent observation. I have seen numbers as wide as 80% congenital and 20% regressive, which would make "from birth" far more common than regressive autism.
It always amazes me how many folks say, "wow, he doesn't look autistic!" I refrain from asking what they expected an autistic person to look like. I think the fact that Joey is happy, healthy, and affectionate really takes people off-guard. The idea of an "invisible disability" is confusing to people. It is the same attitude as the people who give us dirty looks (and the occasional rude comment) when they see us using our disability hangtag. Joey doesn't look disabled, so why should we get to use the close-in parking spots? They don't see Joey trying to dart into the street or wandering around the car, and even if they did, would that pass their personal test for who deserves a handicap tag?
But what really amazes me ifs people ask questions, listen to answers, and then ask more questions. They want to know about Joey, they want to know about autism, or they are at least polite enough not to fall asleep. There is hope out there, ready for the asking.
Several of my New Jersey crowd have special needs kids at various levels. How they cope it something very interesting to me. Whether therapy is left off a an inconvenience, their kids are relabeled to fit them into certain classrooms or situations, or they are out there fighting and placing their kids in various activities and placements, they all have ideas of how to cope, how to help their kids cope, how to pay the bills and have a life. They are all apparently better at this last item than I am, because they're all published and working on projects and going on with their life plans.
OK, that go off track. Back to the point. I talk a lot about Joey. I talk to people in the park. I talk to my New Jersey crowd. I talk to folks in the train station. I talk to people in McDonald's. I talk with people in the grocery store. The questions folks ask, the observations they make, the advice they want to offer, it has its ups and downs, pros and cons.
It always amazes me how many people still think autism is caused by vaccines. This idea is so entrenched in the popular imagination that when you speak against the idea, people start to argue with you. People who have no clue what they are talking about, who ten minutes before when the conversation started didn't even know autistic people can speak, relate, and show emotion, are suddenly experts at vaccines and how they cause autism. Weird.
It always amazes me how many folks are surprised when I say Joey was autistic from birth. One person this weekend even replied with a shocked, "isn't that really rare?" Well, no. Most of the studies I have seen seem to indicated it is about half-and-half based on parent observation. I have seen numbers as wide as 80% congenital and 20% regressive, which would make "from birth" far more common than regressive autism.
It always amazes me how many folks say, "wow, he doesn't look autistic!" I refrain from asking what they expected an autistic person to look like. I think the fact that Joey is happy, healthy, and affectionate really takes people off-guard. The idea of an "invisible disability" is confusing to people. It is the same attitude as the people who give us dirty looks (and the occasional rude comment) when they see us using our disability hangtag. Joey doesn't look disabled, so why should we get to use the close-in parking spots? They don't see Joey trying to dart into the street or wandering around the car, and even if they did, would that pass their personal test for who deserves a handicap tag?
But what really amazes me ifs people ask questions, listen to answers, and then ask more questions. They want to know about Joey, they want to know about autism, or they are at least polite enough not to fall asleep. There is hope out there, ready for the asking.
Sunday, July 27, 2008
Not well-read
There is a storm here in our little corner of blogland. We have lost one dear to our circle.
To be honest, I have a pretty tight little circle of blogs I read regularly. I see other peoples' blogrolls of daily reading, and I boggle at how they have the time to do all that reading. I think folks have picked up on my little circle, because whenever awards go around, I tend to bring up the same dozen blogs. I hunt and peck at other blogs, but when it comes down to it, I have my comfy dozen, those familiar comfy couches in virtual livingrooms, and there I take up my residence. I follow along those stories, think about those children, those parents, those families. Other blogs drift through, other faces, names, tales; but the focus remains on this one small circle.
Sometimes things reverberate through that little circle from those drifting names and faces. The reverberations of loss of one little boy is one of those. I wasn't particularly following Evan's story and life. I peeked in now and again, popped by when something caught the interest in some of the autism headlines sites I sometimes peruse. When I got the news from Niksmom that Evan was sick, I had to ask which blog he belonged to, I couldn't remember, I just had some connect that I had read some of his adventures.
But many of my little dozen were regular readers, followers of this family, profoundly impacted by the sudden loss. We may have never met each other, but we are friends and family all the same. I am terribly sorry that Vicki is going through this loss, I cannot imagine losing a child, but the pain must be... even the thought of it is overwhelming. What can I do from my little virtual corner than to send what hugs I can, do what I can to honor a child and a family who mean so much to so many? To put out that reminder, in my own way, that we are all precious, even people I don't really know, know only from glimpses of glimpses?
I also want to hug my little circle, who feel so much pain and very real grief in this loss.
We're thinking of all you guys: Vicki and her family, and our other blog families and friends who are hurting. Keep us informed of how we can help.
To be honest, I have a pretty tight little circle of blogs I read regularly. I see other peoples' blogrolls of daily reading, and I boggle at how they have the time to do all that reading. I think folks have picked up on my little circle, because whenever awards go around, I tend to bring up the same dozen blogs. I hunt and peck at other blogs, but when it comes down to it, I have my comfy dozen, those familiar comfy couches in virtual livingrooms, and there I take up my residence. I follow along those stories, think about those children, those parents, those families. Other blogs drift through, other faces, names, tales; but the focus remains on this one small circle.
Sometimes things reverberate through that little circle from those drifting names and faces. The reverberations of loss of one little boy is one of those. I wasn't particularly following Evan's story and life. I peeked in now and again, popped by when something caught the interest in some of the autism headlines sites I sometimes peruse. When I got the news from Niksmom that Evan was sick, I had to ask which blog he belonged to, I couldn't remember, I just had some connect that I had read some of his adventures.
But many of my little dozen were regular readers, followers of this family, profoundly impacted by the sudden loss. We may have never met each other, but we are friends and family all the same. I am terribly sorry that Vicki is going through this loss, I cannot imagine losing a child, but the pain must be... even the thought of it is overwhelming. What can I do from my little virtual corner than to send what hugs I can, do what I can to honor a child and a family who mean so much to so many? To put out that reminder, in my own way, that we are all precious, even people I don't really know, know only from glimpses of glimpses?
I also want to hug my little circle, who feel so much pain and very real grief in this loss.
We're thinking of all you guys: Vicki and her family, and our other blog families and friends who are hurting. Keep us informed of how we can help.
What I Learned In New Jersey
1. Going 30 hours without boys to squish really, really sucks. Well, I knew that already...
2. At least one of my colleagues has an adult sister in an institution. She's there because she's considered severely mentally retarded. Then she described her sister to me. I've never heard a more exact description of classic autism.
3. People do not understand that once a person is in an institution with a label, you might have to ask to have your loved one screened for something else if you suspect something else- they won't "just do that" or "watch for it" automatically. (If you are in the hospital with a diagnosis, and you suspect another diagnosis or problem, it is a good idea to ask the doctor about checking it out).
4. If you are the only sober person playing pool, you are probably going to win the most games. Even if you suck at pool and haven't played in years.
5. No matter what, people will complain that they aren't being paid enough and want more money. Even for a job you can work in your pajamas. And that pays you a good bit of money by the hour to work in your pajamas.
6. In Heidi by Johanna Spyri, Heidi has black hair.
7. Sam Adams costs five bucks on the train. It doubles the cost of lunch.
8. If you work a great job where all you have to do is read and keep track of others reading, and they pay you good money to do it, people will still do the stupidest crap to get fired. Such as to announce to an entire group of people doing the job, including your supervisors, that reading isn't really necessary.
9. I am not in the rumor loop. Everybody seems to know everything about everybody, and who got fired and why, and all that kind of lovely stuff, and I find out about it when I go to New Jersey. (I am not yet decided if this is a good thing or a bad thing.)
10. When you are not in the rumor loop, and you ask after the whereabouts of someone who has been fired for months, people laugh at you.
11. When you are staying at a hotel that is too cheap to keep drinks available until the end of your meeting, you don't feel as bad about keeping the pens and pads they leave in the conference rooms.
12. There is nothing better after 30 hours of boy-less-ness than being able to come home, give them a kiss, and hear the little voice say, "Mommy! You're back!"
2. At least one of my colleagues has an adult sister in an institution. She's there because she's considered severely mentally retarded. Then she described her sister to me. I've never heard a more exact description of classic autism.
3. People do not understand that once a person is in an institution with a label, you might have to ask to have your loved one screened for something else if you suspect something else- they won't "just do that" or "watch for it" automatically. (If you are in the hospital with a diagnosis, and you suspect another diagnosis or problem, it is a good idea to ask the doctor about checking it out).
4. If you are the only sober person playing pool, you are probably going to win the most games. Even if you suck at pool and haven't played in years.
5. No matter what, people will complain that they aren't being paid enough and want more money. Even for a job you can work in your pajamas. And that pays you a good bit of money by the hour to work in your pajamas.
6. In Heidi by Johanna Spyri, Heidi has black hair.
7. Sam Adams costs five bucks on the train. It doubles the cost of lunch.
8. If you work a great job where all you have to do is read and keep track of others reading, and they pay you good money to do it, people will still do the stupidest crap to get fired. Such as to announce to an entire group of people doing the job, including your supervisors, that reading isn't really necessary.
9. I am not in the rumor loop. Everybody seems to know everything about everybody, and who got fired and why, and all that kind of lovely stuff, and I find out about it when I go to New Jersey. (I am not yet decided if this is a good thing or a bad thing.)
10. When you are not in the rumor loop, and you ask after the whereabouts of someone who has been fired for months, people laugh at you.
11. When you are staying at a hotel that is too cheap to keep drinks available until the end of your meeting, you don't feel as bad about keeping the pens and pads they leave in the conference rooms.
12. There is nothing better after 30 hours of boy-less-ness than being able to come home, give them a kiss, and hear the little voice say, "Mommy! You're back!"
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