We have just entered The Last Week. Joey's summer programs all end a week from today. Then we have two weeks of basically nothing- an abyss- before school begins.
We're not the only family to sign up for eight weeks of speech camp this summer. Or summer school. While maintaining our regular therapies. And then add a social skills camp to these last two weeks. Andy has patiently sat in the therapists office from 1 o'clock on, sometimes to 6 o'clock... all summer long. He has also not been alone.
There is a little girl who has sat in the office most of the summer while her brother is in speech camp. Is she seven? Eight? Old enough to like to do cartwheels across the waiting room and spruce up her pretty little face with Hello Kitty lipgloss. There are two preteen girls who come less often, but armed with DVDs and drawing pads, also waiting for speech camp siblings. There are two little girls and their baby brother awaiting a child in OT, who like to play with the plastic dolls' house in the speech room. The baby likes to climb the stairs and look down at his Dad through the rails. He also happens to have Down's Syndrome. There are some other siblings that come less often, or who I have seen less of at any rate. One is only eleven days old.
Whenever I think its been a long summer, I think of these kids. It's been a long summer for them, too. They didn't go to day camp, or cheerleading camp, or sports camp, or any of the things other non-special-needs kids seem to be doing. They didn't get to do lots of enrichment programs, or spend lots of lazy days by the pool. They didn't go to the beach. They stayed mostly right here, supporting their brothers and sisters as best they could by letting mom or dad or grandma or grandpa drag them to the therapy office day after day, and thus allow their siblings to have their therapies.
Next summer (and yes, I fully expect to be doing this again next summer), I'll probably ask the therapists if they mind if we have a Sibling Camp. Something to offer these kids besides sitting in the waiting room doing... well, not much. It could be free. I've got enough art supplies laying around here to put something together. A sprinkler in the parking lot would be OK for a brief activity when it wasn't absolutely boiling. Singing new songs and maybe even playing some Signing Time or other activity-related DVDs wouldn't cost anything. It would even be easy enough to have stuff that kids could easily walk-in/walk-out from; stations or quickie crafts so that anyone can join in, or opt out, as appointments allow. Just something so these kids don't feel like they spent the summer sitting around a waiting room. Something to get them through these last dog days of the summer, before the Abyss.
Friday, August 10, 2007
Wednesday, August 08, 2007
A World of Delphiniums
The Dormouse and the Doctor
By A. A. Milne
There once was a Dormouse who lived in a bed
Of delphiniums (blue) and geraniums (red),
And all the day long he'd a wonderful view
Of geraniums (red) and delphiniums (blue).
A Doctor came hurrying round, and he said:
"Tut-tut, I am sorry to find you in bed.
Just say 'Ninety-nine' while I look at your chest....
Don't you find that chrysanthemums answer the best?"
The Dormouse looked round at the view and replied
(When he'd said "Ninety-nine") that he'd tried and he'd tried,
And much the most answering things that he knew
Were geraniums (red) and delphiniums (blue).
The Doctor stood frowning and shaking his head,
And he took up his shiny silk hat as he said:
"What the patient requires is a change," and he went
To see some chrysanthemum people in Kent.
The Dormouse lay there, and he gazed at the view
Of geraniums (red) and delphiniums (blue),
And he knew there was nothing he wanted instead
Of delphiniums (blue) and geraniums (red).
The Doctor came back and, to show what he meant,
He had brought some chrysanthemum cuttings from Kent.
"Now these," he remarked, "give a much better view
Than geraniums (red) and delphiniums (blue)."
They took out their spades and they dug up the bed
Of delphiniums (blue) and geraniums (red),
And they planted chrysanthemums (yellow and white).
"And now," said the Doctor, "we'll soon have you right."
The Dormouse looked out, and he said with a sigh:
"I suppose all these people know better than I.
It was silly, perhaps, but I did like the view
Of geraniums (red) and delphiniums (blue)."
The Doctor came round and examined his chest,
And ordered him Nourishment, Tonics, and Rest.
"How very effective," he said, as he shook
The thermometer, "all these chrysanthemums look!"
The Dormouse turned over to shut out the sight
Of the endless chrysanthemums (yellow and white).
"How lovely," he thought, "to be back in a bed
Of delphiniums (blue) and geraniums (red.)"
The Doctor said, "Tut! It's another attack!"
And ordered him Milk and Massage-of-the-back,
And Freedom-from-worry and Drives-in-a-car,
And murmured, "How sweet your chrysanthemums are!"
The Dormouse lay there with his paws to his eyes,
And imagined himself such a pleasant surprise:
"I'll pretend the chrysanthemums turn to a bed
Of delphiniums (blue) and geraniums (red)!"
The Doctor next morning was rubbing his hands,
And saying, "There's nobody quite understands
These cases as I do! The cure has begun!
How fresh the chrysanthemums look in the sun!"
The Dormouse lay happy, his eyes were so tight
He could see no chrysanthemums, yellow or white.
And all that he felt at the back of his head
Were delphiniums (blue) and geraniums (red).
And that is the reason (Aunt Emily said)
If a Dormouse gets in a chrysanthemum bed,
You will find (so Aunt Emily says) that he lies
Fast asleep on his front with his paws to his eyes.
I worry that Joey will grow up in a world full of Doctors. Right now, he is such a happy little dormouse, in a world bright with red and blue. May he never let them dig up his geraniums.
Tuesday, August 07, 2007
Ask Before You Touch
There was a new mom at therapy today. Not new as in "new to autism"- new as in "baby is nine days old." Her older child was in therapy, but she had teh brand-new baby with her. Andy likes babies. Joey LOVES babies. And this was a teeny-tiny, brand-new baby with big eyes and headfuzz, and mom still very round and new-mom looking.
The boys were very good. They washed their hands, and only touched the baby on her head to feel the soft babyhair. They smiled and giggled and made faces at the baby, and didn't get in her face. Joey talked about the baby being little, the baby was awake, the baby was soft, and said he liked babies. He turned to Mom, and talked to her about the baby. Very nice social moment.
Then he reached out with one finger an proclaimed, "I want to touch the booby!" and gave her very round breast a stroke with his finger. Then he was off to another point of interest in the room, leaving me, the Mom, the office manager, and a couple other moms in a moment of speechless awe.
I must say, the Mom was an absolute sport about it, very gracefully not saying anything. The office manager just abotu died on the spot trying not to laugh. I initially thought he intended to say "baby" and only touched the Mom because he remember he wasn't supposed to touch the baby, but apparently everybody else thought it was quite clear.
I wonder where he's picked that up. He often likes to touch peole, especially on exposed lower arms, but I've never had him do this before. I've been trying to teach him to ask before touching someone, and I honestly think he was trying to do just that by making the announcement that split second before acting. Now we just need to go back to just arms, please. Thanks.
The boys were very good. They washed their hands, and only touched the baby on her head to feel the soft babyhair. They smiled and giggled and made faces at the baby, and didn't get in her face. Joey talked about the baby being little, the baby was awake, the baby was soft, and said he liked babies. He turned to Mom, and talked to her about the baby. Very nice social moment.
Then he reached out with one finger an proclaimed, "I want to touch the booby!" and gave her very round breast a stroke with his finger. Then he was off to another point of interest in the room, leaving me, the Mom, the office manager, and a couple other moms in a moment of speechless awe.
I must say, the Mom was an absolute sport about it, very gracefully not saying anything. The office manager just abotu died on the spot trying not to laugh. I initially thought he intended to say "baby" and only touched the Mom because he remember he wasn't supposed to touch the baby, but apparently everybody else thought it was quite clear.
I wonder where he's picked that up. He often likes to touch peole, especially on exposed lower arms, but I've never had him do this before. I've been trying to teach him to ask before touching someone, and I honestly think he was trying to do just that by making the announcement that split second before acting. Now we just need to go back to just arms, please. Thanks.
Monday, August 06, 2007
No quacks
New t-shirt design. Thought it might be a good thing to spread around.
That ducky place in C-ville is calling. I guess they need some more business. Not enough suckers going in and giving them their life savings to fix their kid. Caller ID is my friend.
Sunday, August 05, 2007
New Shoes
Joey isn't feeling very well. I got the hint this afternoon after church, when we went to buy shoes.
This weekend is Virginia's "tax-free weekend." That means we instantly save 5% on everything we buy for school- supplies, clothes, shoes, etc. That may not seem like a lot of money, but around here, every little bit helps. And when shoes cost $50 a pair (holy frijoles!), and you've got two of them who are going to need shoes, that's a quick $5, before we start on anything else they need. So off to the shoe store we go.
Both boys have extra-wide feet, so the selection is limited where-ever we go. Walmart shoes don't fit them at all. Nope. We have to go to the $50 shoe store to get shoes on these feet. Great. And we still have all of two pairs to choose from. Fortunately, both are velcro. Joey picks out a pair that have those flashy lights in the heels. Good- those are the cheaper of the two pairs. Andy picks dark ones over light ones. Fine- we won't see them get dirty as quickly. Done. Let's get out of this madhouse of running, screeching children before I have two meltdowns on my hands.
Then Joey decides he wants to wear his new shoes out of the store. Nevermind that they are for regular school- a month away- and have already been boxed back up and bagged. He wants those shoes. Now.
Of course, it's really a problem of the noise, the heat, the change of schedule, the heat, the unfamiliar store, the heat, being tired, and of course, the heat. This is not about shoes at all. The store folks are very nice, and they know Joey, and they know about the autism, so as he begins the spiral into meltdown, they do their best to hurry things along to get me out the door... but it's too late. In his frustration, Joey bit me.
The biting is new- at least the biting of other people. He's picked it up from Andy, and I have no clue where Andy got it. Andy will do it if he feels in immediate danger or extreme annoyance, such as another child trying to snatch something from him. Joey does it with deliberation and thought. You can see the wheels turn and the decision being made, that half a beat of deliberate-ness that makes the whole mess seem that much more not a failure on his part, but a failure on mine. Somehow, I have permitted, and reinforced, this as an appropriate tool to get what he wants, or make himself "feel better" (I doubt he actually feels better for doing this, but before the action is done, it seems like a good idea to try it, if you know what I mean. Kind of like on a sunny day, it may seem like a great idea to go to the beach, until you realize the sand is burning your feet, the sun is burning your skin, and you forgot to bring sunglasses.) What's worse is I feel I have never tolerated this behavior. This is an instant-reprocussion situation. The full shop of parents glare at me as I pick up my 70-odd pound screaming child, toss him over my shoulder like a sack of potatoes, take his smaller brother by the hand, and march out of the store to the van.
I'm sure I'll get lots of wonderful critiques about that. Did picking him up and/or removing him reinforce the behavior? Should I have allowed him to melt down right there in front of the door? Is a time-out in a van really going to help? How does one correct such behavior, and what behavior can one expect of an overwhelmed 5-year-old?
And here is how I saw it: I made the mistake of trying to get the shoes on a day the store was crowded, the five bucks be damned. Once the mistake was made and the consequence in full swing, the appropriate course of action was to remove the child so that he could regain control and calm. Strapped into a car seat with the A/C going was the only option I really had available. There was no way, once Joey realized he had actually bitten me, that he was going to walk out of that store on his own two feet- the next action was going to be complete puddle of child, because meltdown was complete- about a level 4, if you leave the bite out of the calculation. But definitely meltdown- he was no longer functional. All my fault. I'm the stupid person who tried to take him into the crowded store to buy shoes, remember. On the hottest day of the year, no less.
I'd go into what one should expect from an overwhelmed five-year-old, but I didn't like the hate mail I got last time, so I won't. (I got the gambit from "How dare you think/wish this child should behave any differently than he does?" to "How dare you let him behave that way?") I will say that these are the realities here. Five dollars may not seem a lot, but it is a week's worth of breakfasts. Five dollars is an extra t-shirt for school. Five dollars is 10 minutes of speech therapy (thank you, insurance, for finally kicking in!) Five dollars is a trip to the pumpkin patch. Five dollars is milk for the week. How many crowded stores have we been in, and out of, and not had a single whine from Joey? Hindsight is 20/20- better, when you find yourself constantly judged and found wanting.
Which brings me back to the beginning of this ramble, which is that Joey is not feeling well, and I know this because our trip to the shoe store ended in meltdown. We've been having more of those than usual, but not more than usual for summer, does that make sense? Anyway, they still can be those first little inklings of trouble. I wouldn't say he was grumpy the rest of the day, no more than usual on long car rides (we went to pet goats in Madison), but he wasn't right. Sure enough, we put him to bed early with a little fever. Poor little guy.
This weekend is Virginia's "tax-free weekend." That means we instantly save 5% on everything we buy for school- supplies, clothes, shoes, etc. That may not seem like a lot of money, but around here, every little bit helps. And when shoes cost $50 a pair (holy frijoles!), and you've got two of them who are going to need shoes, that's a quick $5, before we start on anything else they need. So off to the shoe store we go.
Both boys have extra-wide feet, so the selection is limited where-ever we go. Walmart shoes don't fit them at all. Nope. We have to go to the $50 shoe store to get shoes on these feet. Great. And we still have all of two pairs to choose from. Fortunately, both are velcro. Joey picks out a pair that have those flashy lights in the heels. Good- those are the cheaper of the two pairs. Andy picks dark ones over light ones. Fine- we won't see them get dirty as quickly. Done. Let's get out of this madhouse of running, screeching children before I have two meltdowns on my hands.
Then Joey decides he wants to wear his new shoes out of the store. Nevermind that they are for regular school- a month away- and have already been boxed back up and bagged. He wants those shoes. Now.
Of course, it's really a problem of the noise, the heat, the change of schedule, the heat, the unfamiliar store, the heat, being tired, and of course, the heat. This is not about shoes at all. The store folks are very nice, and they know Joey, and they know about the autism, so as he begins the spiral into meltdown, they do their best to hurry things along to get me out the door... but it's too late. In his frustration, Joey bit me.
The biting is new- at least the biting of other people. He's picked it up from Andy, and I have no clue where Andy got it. Andy will do it if he feels in immediate danger or extreme annoyance, such as another child trying to snatch something from him. Joey does it with deliberation and thought. You can see the wheels turn and the decision being made, that half a beat of deliberate-ness that makes the whole mess seem that much more not a failure on his part, but a failure on mine. Somehow, I have permitted, and reinforced, this as an appropriate tool to get what he wants, or make himself "feel better" (I doubt he actually feels better for doing this, but before the action is done, it seems like a good idea to try it, if you know what I mean. Kind of like on a sunny day, it may seem like a great idea to go to the beach, until you realize the sand is burning your feet, the sun is burning your skin, and you forgot to bring sunglasses.) What's worse is I feel I have never tolerated this behavior. This is an instant-reprocussion situation. The full shop of parents glare at me as I pick up my 70-odd pound screaming child, toss him over my shoulder like a sack of potatoes, take his smaller brother by the hand, and march out of the store to the van.
I'm sure I'll get lots of wonderful critiques about that. Did picking him up and/or removing him reinforce the behavior? Should I have allowed him to melt down right there in front of the door? Is a time-out in a van really going to help? How does one correct such behavior, and what behavior can one expect of an overwhelmed 5-year-old?
And here is how I saw it: I made the mistake of trying to get the shoes on a day the store was crowded, the five bucks be damned. Once the mistake was made and the consequence in full swing, the appropriate course of action was to remove the child so that he could regain control and calm. Strapped into a car seat with the A/C going was the only option I really had available. There was no way, once Joey realized he had actually bitten me, that he was going to walk out of that store on his own two feet- the next action was going to be complete puddle of child, because meltdown was complete- about a level 4, if you leave the bite out of the calculation. But definitely meltdown- he was no longer functional. All my fault. I'm the stupid person who tried to take him into the crowded store to buy shoes, remember. On the hottest day of the year, no less.
I'd go into what one should expect from an overwhelmed five-year-old, but I didn't like the hate mail I got last time, so I won't. (I got the gambit from "How dare you think/wish this child should behave any differently than he does?" to "How dare you let him behave that way?") I will say that these are the realities here. Five dollars may not seem a lot, but it is a week's worth of breakfasts. Five dollars is an extra t-shirt for school. Five dollars is 10 minutes of speech therapy (thank you, insurance, for finally kicking in!) Five dollars is a trip to the pumpkin patch. Five dollars is milk for the week. How many crowded stores have we been in, and out of, and not had a single whine from Joey? Hindsight is 20/20- better, when you find yourself constantly judged and found wanting.
Which brings me back to the beginning of this ramble, which is that Joey is not feeling well, and I know this because our trip to the shoe store ended in meltdown. We've been having more of those than usual, but not more than usual for summer, does that make sense? Anyway, they still can be those first little inklings of trouble. I wouldn't say he was grumpy the rest of the day, no more than usual on long car rides (we went to pet goats in Madison), but he wasn't right. Sure enough, we put him to bed early with a little fever. Poor little guy.
Saturday, August 04, 2007
Hair cut
This week, I cut off my hair.
This may not seem like a big deal to most folks. After all, it's hair. Hair grows. Hair gets cut. It is the way of things.
But here, my hair cutting is an event worthy of blogging. For one, the last time it happened, Andy was a babe in arms. Three years ago- my life was so completely different, the only thing I can say is, way back in that other life, there was time to get a hair cut.
For two, my boys accepted the change without a hitch. There was a time when cutting my hair- a sudden change in appearance- would have been very upsetting to Joey. He still gets excited if he catches me with my hair down, like when I brush it in the morning, or if I need to fix and replait it during the day. It's different, Mommy looks funny with all that hair everywhere. Andy thinks its funny, too- especially playing peek-a-boo with Cousin It.
And finally, there's something odd about going from hair to your butt to hair only to your shoulder. It now only takes me three minutes to shampoo my hair. Weird.
It has to be done occasionally, mind you. Otherwise the weight pulls it out, and at my age, hair loss can be permanent. Also, it tends to get a little frayed, since I don't have time to take care of butt-length hair properly.
And hey, even with trimming up the ends, I have twelve inches to send to Locks of Love!
This may not seem like a big deal to most folks. After all, it's hair. Hair grows. Hair gets cut. It is the way of things.
But here, my hair cutting is an event worthy of blogging. For one, the last time it happened, Andy was a babe in arms. Three years ago- my life was so completely different, the only thing I can say is, way back in that other life, there was time to get a hair cut.
For two, my boys accepted the change without a hitch. There was a time when cutting my hair- a sudden change in appearance- would have been very upsetting to Joey. He still gets excited if he catches me with my hair down, like when I brush it in the morning, or if I need to fix and replait it during the day. It's different, Mommy looks funny with all that hair everywhere. Andy thinks its funny, too- especially playing peek-a-boo with Cousin It.
And finally, there's something odd about going from hair to your butt to hair only to your shoulder. It now only takes me three minutes to shampoo my hair. Weird.
It has to be done occasionally, mind you. Otherwise the weight pulls it out, and at my age, hair loss can be permanent. Also, it tends to get a little frayed, since I don't have time to take care of butt-length hair properly.
And hey, even with trimming up the ends, I have twelve inches to send to Locks of Love!
Thursday, August 02, 2007
Small Bites
We have more new foods this week! Joey ate a ham and cheese sandwich- with proper bites- for his OT this week, and he will also eat fresh peppers, sliced up! We are SO excited! Perhaps we have turned a corner with oral sensory issues? Could we be seeing real progress for healthy eating?
Joey's new "thing" is sharks. He saw some prehistoric ones at the museum, and then the prizes this week at OT have been sharks, and he's hooked. Add a new love of Finding Nemo, and bingo! Boy finds new obsession. With plenty of teeth.
On the other hand, we've also added a new biting issue- the boys have decided to bite each other when angry. Joey already bites his hands and clothes if he gets frustrated, but this biting other people thing- not good. We'll keep you posted.
Joey's new "thing" is sharks. He saw some prehistoric ones at the museum, and then the prizes this week at OT have been sharks, and he's hooked. Add a new love of Finding Nemo, and bingo! Boy finds new obsession. With plenty of teeth.
On the other hand, we've also added a new biting issue- the boys have decided to bite each other when angry. Joey already bites his hands and clothes if he gets frustrated, but this biting other people thing- not good. We'll keep you posted.
Tuesday, July 31, 2007
Random Moments
It's three am. There is a low noise down the hall that threatens to turn into a scream, so I roll out of bed to intervene. It's Andy. It's almost always Andy these days. Apparently the bad dream involves something with Joey, and he wants brother. I left brother fast asleep in my room, sprawled on Allan's big recliner (unreclined). I manage to diffuse the problem. I return to find my half of the bed filled with boy. I give him a kiss, then waddle over to the other side, where I do the same for the handsome man I married, who is also fast asleep, cuddled with said boy. I get in the recliner, recline it, and try to go back to sleep.
It's mid-afternoon, another day in the waiting rooms of the therapy clinic. Our speech therapist has taken pity on Andy. He likes to play with one of those plastic dollhouses they use for teaching social skills and household words and stuff to kids. She isn't using it today, so she's put it out on the lobby floor for Andy. He's stretched out on his tummy, in the middle of the carpet, playing his littleheart out, sucking on a lollipop he "won" by having dry pants and going potty like a big boy. The house is inhabited by two "baby" dinosaurs. The peace is broken by a crunching noise, and the stick emerges from his mouth, devoid of candy, so that he can say: "Mommy! Need the potty!!!"
The lull in activities before dinner. Two boys are clomping through the house in my shoes, round and round from kitchen to diningroom to livingroom to hall to kitchen, around and around. One has them on the wrong feet. They are also screeching, and hanging their arms, reminiscent of gorillas in Danskos. I realize they are actually both T. Rexes in Danskos.
Morning again. I've managed to retain my space in bed. A soft little hand touches my face. Then little lips find mine. Yes, the boy is up. Suddenly, a small body crashes atop mine with a wild giggle. Yep, the other one is up, too. Now four sets of little fingers are poking, wiggling, trying to tickle me. Get up, Mom! It's time to PLAY!!!
The big yellow bus chugs up the street, sighs and squeaks to a halt in front of the house. I head down the porch steps, admiring the way Joey can now step off the bus and come to me, instead of me having to go fetch him from the bus door. He turns and waves as the bus pulls away, with likely the last words I will hear from him for the next hour: "Bye, bus! See you tomorrow!"
Sometimes, one must stop and admire the normalcy.
It's mid-afternoon, another day in the waiting rooms of the therapy clinic. Our speech therapist has taken pity on Andy. He likes to play with one of those plastic dollhouses they use for teaching social skills and household words and stuff to kids. She isn't using it today, so she's put it out on the lobby floor for Andy. He's stretched out on his tummy, in the middle of the carpet, playing his littleheart out, sucking on a lollipop he "won" by having dry pants and going potty like a big boy. The house is inhabited by two "baby" dinosaurs. The peace is broken by a crunching noise, and the stick emerges from his mouth, devoid of candy, so that he can say: "Mommy! Need the potty!!!"
The lull in activities before dinner. Two boys are clomping through the house in my shoes, round and round from kitchen to diningroom to livingroom to hall to kitchen, around and around. One has them on the wrong feet. They are also screeching, and hanging their arms, reminiscent of gorillas in Danskos. I realize they are actually both T. Rexes in Danskos.
Morning again. I've managed to retain my space in bed. A soft little hand touches my face. Then little lips find mine. Yes, the boy is up. Suddenly, a small body crashes atop mine with a wild giggle. Yep, the other one is up, too. Now four sets of little fingers are poking, wiggling, trying to tickle me. Get up, Mom! It's time to PLAY!!!
The big yellow bus chugs up the street, sighs and squeaks to a halt in front of the house. I head down the porch steps, admiring the way Joey can now step off the bus and come to me, instead of me having to go fetch him from the bus door. He turns and waves as the bus pulls away, with likely the last words I will hear from him for the next hour: "Bye, bus! See you tomorrow!"
Sometimes, one must stop and admire the normalcy.
Sunday, July 29, 2007
Dinosaurs (Act II)
We headed north again today, and spent the afternoon with the dinosaurs in the Museum of Natural History. I was kind of expecting them to hot-foot it in to the big dinosaur hall and spend most of the time there. I was surprised by side halls.
If you have never been to DC, and never seen the dinosaur exhibit (or not recently), then you're probably saying "Wha?" so let me take a little detour for you. The Museum of Natural History has changed dramatically from when I was young and wandering along the halls. For one, most of the exhibits have been scrubbed to unmerciful and character-less sterility, or tossed altogether. All of the exhibits my great-uncle Watson set up are gone, so that none of the animals in the mammal hall have any sense of habitat or context, the stuffed examples are stuck on glass shelves in glass cases. Being in the art business, this is exactly what most art and cultural museums are trying NOT to do. Why it has become fashionable in the curating of natural history, I haven't the slightest clue. Anyway, the dinosaurs have been partly spared this catastrophe, and whomever was in charge of scrubbing at least, for the most part, understood the idea of context and why it is important. The old hall retains interest. It is split into four main sections, three halls backed by a fourth. The three halls have ancient oceans and ancient forests flanking the main dinosaur hall, and then in teh back are the ancient mammals. A new cafe has been set at the far end of the dinosaur hall. The big fossil bone collection- things like brachiosaurs, tyrannosaurus rex, triceratops, stegasaurus, etc.- are in that middle main hall, will a very high ceiling (and a loft area for pterosaurs). The Oceans and Forests halls flank this main exihibit, but are seperated by walls, and have lower ceilings; so you can sometimes glimpse into the great dinosaurs from the side halls, but mostly, they are seperate exihibits with more carpetting and fewer echoes.
Another difference from when I was a kid is the sheer crush of people. When I was young, you could walk into the museum on a Sunday afternoon and have the place almost to yourself. Just not a popular day to go museum-hopping. Now, there is never a dull moment there. The crush of humanity is incredible. With the crush of human life comes the noise. Now add the echoes. It is enough to make me frantic. You can imagine what this is like for my guys.
The side halls, however, do not have the echo, or the draw. It still is crowded, but not the great, noisy, echo-y crush of the main dinosaur hall. To my surprise, despite the draw of t-rex and allosaurs, the boys made for the side halls. Quieter. Softer surroundings. Movies about fish mouths being made for sucking in worms. This is where they chose to spend the majority of their visit.
Yes, we did go out and say hello to the bones I consider old friends. My brother used to love the pteradactyls, hovering overhead, running up the stairs and reaching to as if we could touch them. Brachosaurus arching over the walkway, so it towered over you, the empty sockets gazing into space as if back to its flesh, long lost to time. But we spent most of the time exploring the world of the ammonites, the mosasaurs, and ancient mudpuppies.
These boys have a talent for finding what makes them comfortable. This is a good thing.
If you have never been to DC, and never seen the dinosaur exhibit (or not recently), then you're probably saying "Wha?" so let me take a little detour for you. The Museum of Natural History has changed dramatically from when I was young and wandering along the halls. For one, most of the exhibits have been scrubbed to unmerciful and character-less sterility, or tossed altogether. All of the exhibits my great-uncle Watson set up are gone, so that none of the animals in the mammal hall have any sense of habitat or context, the stuffed examples are stuck on glass shelves in glass cases. Being in the art business, this is exactly what most art and cultural museums are trying NOT to do. Why it has become fashionable in the curating of natural history, I haven't the slightest clue. Anyway, the dinosaurs have been partly spared this catastrophe, and whomever was in charge of scrubbing at least, for the most part, understood the idea of context and why it is important. The old hall retains interest. It is split into four main sections, three halls backed by a fourth. The three halls have ancient oceans and ancient forests flanking the main dinosaur hall, and then in teh back are the ancient mammals. A new cafe has been set at the far end of the dinosaur hall. The big fossil bone collection- things like brachiosaurs, tyrannosaurus rex, triceratops, stegasaurus, etc.- are in that middle main hall, will a very high ceiling (and a loft area for pterosaurs). The Oceans and Forests halls flank this main exihibit, but are seperated by walls, and have lower ceilings; so you can sometimes glimpse into the great dinosaurs from the side halls, but mostly, they are seperate exihibits with more carpetting and fewer echoes.
Another difference from when I was a kid is the sheer crush of people. When I was young, you could walk into the museum on a Sunday afternoon and have the place almost to yourself. Just not a popular day to go museum-hopping. Now, there is never a dull moment there. The crush of humanity is incredible. With the crush of human life comes the noise. Now add the echoes. It is enough to make me frantic. You can imagine what this is like for my guys.
The side halls, however, do not have the echo, or the draw. It still is crowded, but not the great, noisy, echo-y crush of the main dinosaur hall. To my surprise, despite the draw of t-rex and allosaurs, the boys made for the side halls. Quieter. Softer surroundings. Movies about fish mouths being made for sucking in worms. This is where they chose to spend the majority of their visit.
Yes, we did go out and say hello to the bones I consider old friends. My brother used to love the pteradactyls, hovering overhead, running up the stairs and reaching to as if we could touch them. Brachosaurus arching over the walkway, so it towered over you, the empty sockets gazing into space as if back to its flesh, long lost to time. But we spent most of the time exploring the world of the ammonites, the mosasaurs, and ancient mudpuppies.
These boys have a talent for finding what makes them comfortable. This is a good thing.
Initiating
Every Saturday, Joey and I head over to the church to listen to the music. There is a little band that plays contemporary Christian music for the Saturday service, and Joey likes to watch the drums and the guitars and whatnot. We practice some signs and some social skills and that sort of thing, but we usually scoot out before the sermon- sitting still through someone else talking is not Joey's forté.
There is a lady who has taken a liking to Joey. She's an older lady with not the best health, but plenty of smiles. She is very tolerant of Joey pleying with her jewelry, and one week she even brought in a puppet to play with him.
Before the muic starts, Joey usually spents the time running up and down the aisles, tracking the pews. Since this is what he does to make himself comfortable, no one is really there yet, and it isn't hurting anybody, I don't curtail this much. What five-year-old doesn't relish his first little tastes of freedom from Mom? He also hands out hugs to church members who ask for them as they wander in, like the pastor, and his friend, and the Sunday School director. When the first note strikes, he settles next to me for the music.
Yesterday, we were doin our usual wandering, when he saw his friend in the vestibule. We were at the front, and he caught sight of her- and made a beeline to her, said, "Hi!" and gave her a big hug! Then he stayed to say things like, "How are you?" Scripted, but appropriate, and self-initiated!
She hadn't called him over to her. She didn't ask the questions first. This was all on his own!
Yes, we're coming right along here in our little corner of the world.
There is a lady who has taken a liking to Joey. She's an older lady with not the best health, but plenty of smiles. She is very tolerant of Joey pleying with her jewelry, and one week she even brought in a puppet to play with him.
Before the muic starts, Joey usually spents the time running up and down the aisles, tracking the pews. Since this is what he does to make himself comfortable, no one is really there yet, and it isn't hurting anybody, I don't curtail this much. What five-year-old doesn't relish his first little tastes of freedom from Mom? He also hands out hugs to church members who ask for them as they wander in, like the pastor, and his friend, and the Sunday School director. When the first note strikes, he settles next to me for the music.
Yesterday, we were doin our usual wandering, when he saw his friend in the vestibule. We were at the front, and he caught sight of her- and made a beeline to her, said, "Hi!" and gave her a big hug! Then he stayed to say things like, "How are you?" Scripted, but appropriate, and self-initiated!
She hadn't called him over to her. She didn't ask the questions first. This was all on his own!
Yes, we're coming right along here in our little corner of the world.
Friday, July 27, 2007
Life is Good.
More reminders that Life Is Good:
I have a quilt on my bed that has sealife on it. The boys have decided it is a "pool" and they are "whales"- and dive on.
Signing the entire alphabet with Joey singing the ABC song.
Andy's eyes when he gets a new dinosaur- even though he has more than I can readily count.
The squeals of joy when you hit I-95 and announce, "Let's go on an adventure!" They just know they are going someplace good.
Listening to Allan singing the goodnight song he made up himself, just for his boys.
Andy chasing kitties.
Baking cookies- Andy and Joey like to take turns putting the cookies on the sheets and squishing them flat. (Next step: getting them to roll the balls!)
Joey reading the clock and then saying, "what comes next?" And when you answer, he says, with all enthusiasm, "You're RIGHT! Good job!"
Asking Joey what comes next at 12:59, and he says, "One o'clock!"
Swimming with boys as they run through sprinklers.
Andy asking for one more hug. One more kiss. One more story?
I have a quilt on my bed that has sealife on it. The boys have decided it is a "pool" and they are "whales"- and dive on.
Signing the entire alphabet with Joey singing the ABC song.
Andy's eyes when he gets a new dinosaur- even though he has more than I can readily count.
The squeals of joy when you hit I-95 and announce, "Let's go on an adventure!" They just know they are going someplace good.
Listening to Allan singing the goodnight song he made up himself, just for his boys.
Andy chasing kitties.
Baking cookies- Andy and Joey like to take turns putting the cookies on the sheets and squishing them flat. (Next step: getting them to roll the balls!)
Joey reading the clock and then saying, "what comes next?" And when you answer, he says, with all enthusiasm, "You're RIGHT! Good job!"
Asking Joey what comes next at 12:59, and he says, "One o'clock!"
Swimming with boys as they run through sprinklers.
Andy asking for one more hug. One more kiss. One more story?
Thursday, July 26, 2007
Big Ten
Taking up the thread from Mom-NOS, here are ten ways Joey and I are alike:
1. Neither of us like hot water on our hands or feet. Water than my mom thought cold used to send me screaming when I was a kid. Joey hates hot stuff, too.
2. Neither of us like to wear shoes. Bare feet are best.
3. We both love numbers. Onceupon a time, I was the top math student in my high school. Counting is comforting.
4. We both collapse when tickled. As in, lose all motor control, heap on the floor.
5. We both love Christmas, and sparkly Christmas ornaments. We both love nothing better than to spend an afternoon at Valley View.
6. We both love to cuddle. Even when Joey was teeny tiny, he loved nothing better than to be in bed with Mom and Dad, getting squished. :)
7. We both love the ocean. We could just stand at the surf and watch the undulation of the sea forever.
8. When in doubt, we both smile. Joey excudes positiveness. I have often been asked, "do you always smile?" I wish I could honestly reply "yes."
9. We both have little patience for eating. It takes me a lot of effort and energy to sit until everyone at the dinner table is finished- as soon as I have eaten, I'm ready to move on. Ditto for him. Sitting still is not something either of us do well.
10. We both have scattered interests. I know the common idea of autistics is a hyper-focus on a narrow range of topics, but for us, we tend to scatter and not hold too much interest in a single topic for too long. I'll watch one movie over and over for a few days straight, but then my brain moves on to hyper-focus on the next topic. Joey does this- he hones in for a few days, then moves on.
Ten ways I am like Andy:
1. We both love strawberry stuff. Yum!
2. We both like to look at packages in the graocery store. Some labels are really interesting!
3. We both like animals. I wanted to be a vet once upon a time and another life ago. Andy just adores anything furry. Or scaly. Or breathing.
4. We both have the devil in us. And that's a good thing.
5. We both like to look at books in bed. Usually together. :)
6. We both like flowers. I like looking at them and smelling them. He likes pulling them apart and finding out how they grow.
7. We both find car rides relaxing. He still gets to take a nap.
8. Neither of us like cacophony. We both find it highly disorienting and irritating. Andy will actually scream, then pace and track like Joey after being exposed to sudden loud noise, like when the band starts up at church.
9. Neither of us like cheese goldfish. I prefer plain. He likes pretzel.
10. We both like to make things. Andy loves little art projects, even if he likes keeping his fingers clean.
Anyone else want to play?
1. Neither of us like hot water on our hands or feet. Water than my mom thought cold used to send me screaming when I was a kid. Joey hates hot stuff, too.
2. Neither of us like to wear shoes. Bare feet are best.
3. We both love numbers. Onceupon a time, I was the top math student in my high school. Counting is comforting.
4. We both collapse when tickled. As in, lose all motor control, heap on the floor.
5. We both love Christmas, and sparkly Christmas ornaments. We both love nothing better than to spend an afternoon at Valley View.
6. We both love to cuddle. Even when Joey was teeny tiny, he loved nothing better than to be in bed with Mom and Dad, getting squished. :)
7. We both love the ocean. We could just stand at the surf and watch the undulation of the sea forever.
8. When in doubt, we both smile. Joey excudes positiveness. I have often been asked, "do you always smile?" I wish I could honestly reply "yes."
9. We both have little patience for eating. It takes me a lot of effort and energy to sit until everyone at the dinner table is finished- as soon as I have eaten, I'm ready to move on. Ditto for him. Sitting still is not something either of us do well.
10. We both have scattered interests. I know the common idea of autistics is a hyper-focus on a narrow range of topics, but for us, we tend to scatter and not hold too much interest in a single topic for too long. I'll watch one movie over and over for a few days straight, but then my brain moves on to hyper-focus on the next topic. Joey does this- he hones in for a few days, then moves on.
Ten ways I am like Andy:
1. We both love strawberry stuff. Yum!
2. We both like to look at packages in the graocery store. Some labels are really interesting!
3. We both like animals. I wanted to be a vet once upon a time and another life ago. Andy just adores anything furry. Or scaly. Or breathing.
4. We both have the devil in us. And that's a good thing.
5. We both like to look at books in bed. Usually together. :)
6. We both like flowers. I like looking at them and smelling them. He likes pulling them apart and finding out how they grow.
7. We both find car rides relaxing. He still gets to take a nap.
8. Neither of us like cacophony. We both find it highly disorienting and irritating. Andy will actually scream, then pace and track like Joey after being exposed to sudden loud noise, like when the band starts up at church.
9. Neither of us like cheese goldfish. I prefer plain. He likes pretzel.
10. We both like to make things. Andy loves little art projects, even if he likes keeping his fingers clean.
Anyone else want to play?
Communicating
As an art historian, part of what I am studying and analyzing is how people communicate. You have an idea (or your patron has an idea) and it must be communicated. How will you acheive this? What will need to be shown? How much of that message should be overt, and how much covert? What images and techniques will be used to convey meaning?
One thing I have notived is that when communicating a new idea to a culture, it is often communicated using images and ideas the culture is already familiar with to get the new idea across. For example, in early Christian art, much of the early imagery is taken from pre-Christian art. These images had meaning for early Christians because before they were Christians, they had been non-Christians; their culrue had been non-Christian.
Images of Apollo, with the connotations of light, power, and protection made excellent early Christ figures. The bearded Zeus, with the connotations of kingship, power, and maturity became a later favorite, particularly the image of Zeus at Olympia, where he sits enthroned (the image of Lincoln at teh Lincoln Memorial is also based on the Olympia Zeus). The Good Shepherd, with its roots in images of sacrificers and devotees combined with teh idea of the shepherd who protects his flock was another great favorite (usually in the youthful Apollo guise). Early Christians quickly and clearly got the idea of who Christ was and what Christianity was about by viewing these images.
This is a useful strategy for speaking to people about things they don't understand: put it into terms and ideas that they do understand, and go from there. Images and words are metaphors and analogies; re-presentations of ideas and experiences that another person may not have. How close can you come to the original, when the original is beyond reach of the viewer? 
From this idea, we get the use of rainbow spectrums for autism. Puzzle peices. Trips to Holland. Are these analogies, symbols, metaphors good ones, or not? It depends on how they are used, really; but no analogy is perfect, and some of them are downright off-base; but can they still be used to communicate? I don't care for the way the puzzle peice has been used, but it is very useful in starting a conversation about autism, because it is so recognizable. The spectrum thing, taken from the diagnosis "Autism Spectrum Disorder" has its usefulness, but also its difficulties. Even the trip to Holland has its problems as an analogy, but when trying to explain the experience of parenting to a clueless person with no special needs kids, it can be really useful. Trying to explain parenting generally? Probably not. The image has its limitations, and those must be recognized; but don't toss the baby with the bathwater. Trying to find new ways to discussing autism and being human with people who have more ignorance than sense is a great challenge.
How does one communicate to people who have no idea what you are talking about? Have never experienced what you are talking about? And do so in a way that makes not only the experiecne itself a little clearer, but also communicates what you want to say about that experience? What should we emphasize?
I've been putting together a variety of t-shirt designs as alternatives to the ubiqitous puzzle peice, because I think the puzzle peice misses some of the point. The way it is used implies that only autistic children are "puzzles"- but any parent can tell you that isn't true. All children have that mystery, all children have needs, we are learning about all of them. We are all puzzles.
The misuse of the symbol has lead to it being used not to refer to kids, but to autism itself, as a puzzle that needs to be solved (and thus reradicated) rather than as a symbol of unacheived understanding. Bleah.
During the Renaissance, a person's uniqueness was valued. Genius was something to pay an artist extra for. Being in control of your own destiny, educating yourself, creating your own life was valued. Today this individuality seems to be more of a subculture, an alternative lifestyle, rather than the mainstream. The lessons of the Renaissance may need to be re-taught.
Tuesday, July 24, 2007
Sometimes We Let Him Sleep
Oh, dear. This morning, Joey woke up grumpy. Mommy woke up grumpy. Not good. Most of you can see what's coming.
I have been, as you may suspect from my absence, using every spare moment of any point of my day to read Harry Potter. That is now complete. I refuse to give anything away. However, this has also cut into that most valuable commodity, sleep. No sleep=grumpy mommy. Silly mommy, she needs to go to bed, but she's readignHary Poter instead. Silly,silly mommy. Sleep is a waste of time.
So naturally with me grumping about the house this morning, and Joey grumping about the house this morning, when the milk got spilled, all hell broke loose. Level 8. Just what mommy wanted this morning. Worse, he was still in the middle of it when the bus arrived. The bus aide actually came into the house and got him- the idea being that the bus is very calming for him, so we wanted to get him on it. But I felt really, really bad, because I'm sure he was picking up on my grumpiness, which was my own fault in teh first place, because I didn't go to bed, because I was reading...
Meanwhile, someone bit Andy. I took him to the gym, and then took him swimming, and there are nasty bite marks on his shoulder- too small to be Joey, but Joey doesn't bite anyway. So we made sure to reort that to the gym people, so they can be on the lookout for a biter. Andy didn't complain about it until the gym people started fussing over it. I didn't intervene on that point, because I want him to understand he needs to tell somebody if he's bitten.
So when the boy camehome from school, I scooped everybody up an took them to Arby's for lunch. Spiced, curly french fries were a far bigger hit than I expected them to be, and I got to have a reuben for lunch. ;)
I think everybody's feeling better now. The power of food...
I have been, as you may suspect from my absence, using every spare moment of any point of my day to read Harry Potter. That is now complete. I refuse to give anything away. However, this has also cut into that most valuable commodity, sleep. No sleep=grumpy mommy. Silly mommy, she needs to go to bed, but she's readignHary Poter instead. Silly,silly mommy. Sleep is a waste of time.
So naturally with me grumping about the house this morning, and Joey grumping about the house this morning, when the milk got spilled, all hell broke loose. Level 8. Just what mommy wanted this morning. Worse, he was still in the middle of it when the bus arrived. The bus aide actually came into the house and got him- the idea being that the bus is very calming for him, so we wanted to get him on it. But I felt really, really bad, because I'm sure he was picking up on my grumpiness, which was my own fault in teh first place, because I didn't go to bed, because I was reading...
Meanwhile, someone bit Andy. I took him to the gym, and then took him swimming, and there are nasty bite marks on his shoulder- too small to be Joey, but Joey doesn't bite anyway. So we made sure to reort that to the gym people, so they can be on the lookout for a biter. Andy didn't complain about it until the gym people started fussing over it. I didn't intervene on that point, because I want him to understand he needs to tell somebody if he's bitten.
So when the boy camehome from school, I scooped everybody up an took them to Arby's for lunch. Spiced, curly french fries were a far bigger hit than I expected them to be, and I got to have a reuben for lunch. ;)
I think everybody's feeling better now. The power of food...
Saturday, July 21, 2007
It's here! It's here!
Harry Potter and the Deathly Hallows is here! Woo-hoo!
I ran downtown and got one of the last copies available for the midnight madness. Very exciting. But I haven't gotten a chance to crack it open yet- working today. So here are ten things I hope are in this book:
1. I want a real nagini to come kick Nagini's butt. I know it won't happen. But I can dream. I still fume that Nagini is not a cobra.
2. I want Snape to turn out to be a complicated good guy. He's such a delicious character, I'll be really disappointed if she flattens him out and makes him evil.
3. More centaurs, giants, and house-elfs. I want to see the magical world filled with more than just us, and have them have their own struggles with good and evil.
4. I want Ron, Hermione, and Harry to live.
5. I want to know more about the curse that killed Dumbledore's hand. Was he turning into something really bad? Or was it just killing him?
6. I want Molly Weasley to go medieval on somebody's butt. She must be a pretty powerful witch, but we haven't really seen any of it. Ditto for McGonagal.
7. I want to know what Dudley was sweating bullets about when he was attacked by the dementor. What was his worst memory?
8. I want lots and lots more about Lily Potter, and when James learns not to be a little twit.
9. I want to know what happened to Ollivander.
10. I'd like more about Slughorn and the Slytherins. I'd like those shades of grey clarified- being a Slytherin is not being evil, but ambitious and self-serving.
Here's to J.K. Rowling, and the world of Hogwarts!
I ran downtown and got one of the last copies available for the midnight madness. Very exciting. But I haven't gotten a chance to crack it open yet- working today. So here are ten things I hope are in this book:
1. I want a real nagini to come kick Nagini's butt. I know it won't happen. But I can dream. I still fume that Nagini is not a cobra.
2. I want Snape to turn out to be a complicated good guy. He's such a delicious character, I'll be really disappointed if she flattens him out and makes him evil.
3. More centaurs, giants, and house-elfs. I want to see the magical world filled with more than just us, and have them have their own struggles with good and evil.
4. I want Ron, Hermione, and Harry to live.
5. I want to know more about the curse that killed Dumbledore's hand. Was he turning into something really bad? Or was it just killing him?
6. I want Molly Weasley to go medieval on somebody's butt. She must be a pretty powerful witch, but we haven't really seen any of it. Ditto for McGonagal.
7. I want to know what Dudley was sweating bullets about when he was attacked by the dementor. What was his worst memory?
8. I want lots and lots more about Lily Potter, and when James learns not to be a little twit.
9. I want to know what happened to Ollivander.
10. I'd like more about Slughorn and the Slytherins. I'd like those shades of grey clarified- being a Slytherin is not being evil, but ambitious and self-serving.
Here's to J.K. Rowling, and the world of Hogwarts!
Friday, July 20, 2007
Strolling down Memory Lane (without a ding-dong thing on my mind)
There was something I was going to blog about. I've beenthinking about it since Wednesday. I thought about it on the way home from therapy. It was really, really good, important, pertinent to other conversations floating around the blogosphere. Now I have a minute at the computer.
I cannot remember what I was going to blog about.
I'm fairly new at the joys of memory loss and brain hiccups. When I was young, "steel trap" was an understatement. According to teh new ABLLS report we have for Joey, he can repeat back a series of four numbers. At his age, they never figured out how many I could do, because no matter how many they gave me, I could recite them back. I could recite exact conversations I had with people years before, and in my head could even see the faces of participants and the setting around us, and sometimes even the exact floor layout of where=ever we were. I would have made a fabulous witness, but fortunately, I didn't witness much that was that important. I have retained snatches of these memories, but like most people, the majority of my life is now lost to the sands of time. Sand on the brain.
This began in earnest when I became pregnant wih Joey; and then the pregnancy with Andy excelerated it alarmingly. I understand this is normal, especially for women- the hormones of pregnancy actually cause brain damage. I just find it incredibly annoying to walk into a room and have no idea why I am there- or even how I got there. I've taken to hooking my keys on the curtain rod on the door, otherwise I'd take an hour every morning to find them. This time of year I stock up on 10-cent spiral notebooks, because I use them everywhere- whenever I have a thought, if I don't write it down, I risk losing it forever to the sand in the brain. I started using the engagment calendar in my computer. If changes don't make it long enough to be recorded there, I get into trouble- miss appointments, show up for one that were cancelled or moved, etc.
Growing up really sucks.
I cannot remember what I was going to blog about.
I'm fairly new at the joys of memory loss and brain hiccups. When I was young, "steel trap" was an understatement. According to teh new ABLLS report we have for Joey, he can repeat back a series of four numbers. At his age, they never figured out how many I could do, because no matter how many they gave me, I could recite them back. I could recite exact conversations I had with people years before, and in my head could even see the faces of participants and the setting around us, and sometimes even the exact floor layout of where=ever we were. I would have made a fabulous witness, but fortunately, I didn't witness much that was that important. I have retained snatches of these memories, but like most people, the majority of my life is now lost to the sands of time. Sand on the brain.
This began in earnest when I became pregnant wih Joey; and then the pregnancy with Andy excelerated it alarmingly. I understand this is normal, especially for women- the hormones of pregnancy actually cause brain damage. I just find it incredibly annoying to walk into a room and have no idea why I am there- or even how I got there. I've taken to hooking my keys on the curtain rod on the door, otherwise I'd take an hour every morning to find them. This time of year I stock up on 10-cent spiral notebooks, because I use them everywhere- whenever I have a thought, if I don't write it down, I risk losing it forever to the sand in the brain. I started using the engagment calendar in my computer. If changes don't make it long enough to be recorded there, I get into trouble- miss appointments, show up for one that were cancelled or moved, etc.
Growing up really sucks.
Wednesday, July 18, 2007
Don't Be Afraid
Abfh has put up a really funny and thoughtful response to one of my favorite essays I use to try to knock a clue into the clueless, Welcome to Holland. If you're one of my friends without special needs kids, I recommend reading both essays. They are both wonderful gazes into coping with a life that isn't going as expected.
One thing I mentioned in my comment to abfh is that there is a basic attitude and ignorance problem in the "normal" world regarding not only autism, but special needs generally. The example that goes in context here are the parenting and childbirth classes I took when I was pregnant with Joey.
The textbook that came with the class does have a chapter on special needs children. It mostly focuses on problems with premies, but it also mentions things like Down's Syndrome. Autism isn't mentioned at all. The information is mostly about testing, and "talk to your doctor." Thre is very little useful information. The possibility of having a special needs child was only mentioned in passing in the class itself- mostly Down's Syndrome, and a mention that some kids might need some time in the NICU, especially if they are premature.
Why omit this very real and natural possibility? Why not bring it into the discussion, and let expecting parents think about preparing for the possibility? It's like being on a plane to Italy (you knew this part was coming, didn't you) without even having the suggestion that landing in Holland would be a possibility- and in fact, many excited holiday-goers have no clue that a plane routed for Italy could possibly land anywhere but Italy, or even that other countries exist. I mean, what if the plane lands in Lichtenstein (a country of which I am also fond)? I know a lot of people who have never even heard of Lichtenstein.
Wouldn't it be far better to note the possibility, so that we can at least take a peek at a tourguide of Holland before getting on the plane, or have an idea of where the embassy might be? But this is not the prevailing attitude "out there" in the "normal" world. Instead, instructors are concerned about frightening new parents "unnecessarily." Frightening them?
Standing in front of new and expecting parents, I think the first thing to say is "don't be afraid." The second is, "expect the unexpected." Even "normal" kids have "special needs." Some people just need more support than others to be able to survive and thrive. A child with special needs- born with them or otherwise- simply needs some extra support. How much depends on the need. What we should be providing is some basic resource information. OK, your kid has special needs... now what?
Parents who themselves have special needs seem to have a firmer grasp on the concept, because the possibility is so very present to them. For people who have never really dealt with special needs and disability, the whole idea is foreign. These are people who have no idea what an "IEP" is, have never heard of taking a kid to a neurologist, a gastrologist, an endocrinologist, or may even not know what a perinatologist is. These things are not part of their world. When I spoke, once upon and a long time- over a year- ago, about the day the word "autism" came into my life, that is really how it felt. I had no idea. And folks, I'm a very educated person. I know why people think of Rainman when the word autism drifts in- its the only exposure people had, if they had that much. Nowthere's a couple other pop culture references, but no more real education out there for the general, run-of-the-mill Nellie or Nathan Neurotypical.
People with "special needs" and disabilities are different. Different is unknown. Different is scary. But why? Take the fear out of the possibility of having a special needs child. Special needs kids are kids, like all other kids, with their own talents and gifts to offer, and their own lives to live. Don't be afraid. All kids come with challenges.
One thing I mentioned in my comment to abfh is that there is a basic attitude and ignorance problem in the "normal" world regarding not only autism, but special needs generally. The example that goes in context here are the parenting and childbirth classes I took when I was pregnant with Joey.
The textbook that came with the class does have a chapter on special needs children. It mostly focuses on problems with premies, but it also mentions things like Down's Syndrome. Autism isn't mentioned at all. The information is mostly about testing, and "talk to your doctor." Thre is very little useful information. The possibility of having a special needs child was only mentioned in passing in the class itself- mostly Down's Syndrome, and a mention that some kids might need some time in the NICU, especially if they are premature. Why omit this very real and natural possibility? Why not bring it into the discussion, and let expecting parents think about preparing for the possibility? It's like being on a plane to Italy (you knew this part was coming, didn't you) without even having the suggestion that landing in Holland would be a possibility- and in fact, many excited holiday-goers have no clue that a plane routed for Italy could possibly land anywhere but Italy, or even that other countries exist. I mean, what if the plane lands in Lichtenstein (a country of which I am also fond)? I know a lot of people who have never even heard of Lichtenstein.
Wouldn't it be far better to note the possibility, so that we can at least take a peek at a tourguide of Holland before getting on the plane, or have an idea of where the embassy might be? But this is not the prevailing attitude "out there" in the "normal" world. Instead, instructors are concerned about frightening new parents "unnecessarily." Frightening them?
Standing in front of new and expecting parents, I think the first thing to say is "don't be afraid." The second is, "expect the unexpected." Even "normal" kids have "special needs." Some people just need more support than others to be able to survive and thrive. A child with special needs- born with them or otherwise- simply needs some extra support. How much depends on the need. What we should be providing is some basic resource information. OK, your kid has special needs... now what?
Parents who themselves have special needs seem to have a firmer grasp on the concept, because the possibility is so very present to them. For people who have never really dealt with special needs and disability, the whole idea is foreign. These are people who have no idea what an "IEP" is, have never heard of taking a kid to a neurologist, a gastrologist, an endocrinologist, or may even not know what a perinatologist is. These things are not part of their world. When I spoke, once upon and a long time- over a year- ago, about the day the word "autism" came into my life, that is really how it felt. I had no idea. And folks, I'm a very educated person. I know why people think of Rainman when the word autism drifts in- its the only exposure people had, if they had that much. Nowthere's a couple other pop culture references, but no more real education out there for the general, run-of-the-mill Nellie or Nathan Neurotypical.
People with "special needs" and disabilities are different. Different is unknown. Different is scary. But why? Take the fear out of the possibility of having a special needs child. Special needs kids are kids, like all other kids, with their own talents and gifts to offer, and their own lives to live. Don't be afraid. All kids come with challenges.
Tuesday, July 17, 2007
What happened at school today?
Joey has been picking up on questions about his day. He's at least starting to understand that we expect him to make some kind of answer, and that saying something to the effect of "I had fun!" means the activity is likely to be repeated. He will answer yes and no questions with more or less accuracy, depending on how tired he is and how much of his attention you have.
However, he will not talk about school. Trying to get him to talk at all immediately after school is a lost cause. I am going with the working assumption that he is tired, trying to regain his bearings, and perhaps is simply unable to access language after a lot of hard work. I'll keep you posted as I test this theory, as he gains more ability to communicate with us. Anyway, no point in grilling him immediately after school. I'm lucky to get any words at all.
However, asking him questions about school is generally problematic. If he's really with me and I have his attention, he'll give me scripted responses (What did you do at school today? "I had fun, Mrs. Huff was at school today, Went to school" etc.) and will answer all yes/no questions with "yes" (Did you sing a song today? Yes. Did you read a story today? Yes. Did you play outside today? Yes. Did you turn your teacher into a frog today? Yes.) For other activities, I get some spontaneous answers. (Did you sing a song in Speech Camp today? Yes- Wheels on the Bus! Did you enjoy swimming today? Yes- sprinklers! Fun!) For school... nada. i have no idea what he's doing this week. The teacher sent me home a note on the first day, but since then, nothing.
I find this a little odd, and a little worrying. I could do some more peculation as to why school seems to be a taboo subject for question-answering, but it wouldbe just that- speculation. It's also worrying that I have no way to really supporting the school program at home. If I don't know what songs are being sung or what stories are being read, I can't keep up the theme at home. For example, if they are doing, say, Three Billy Goats Gruff, I can play the Leah's Farm Signing Time more, maybe plan to take him down to Maymount to feed goats this weekend, and read him fairytales with trolls, and talk about fairies and things with him. Or if they are singing "Wheels on the Bus" every morning, I can get out his buses and we can sit outside and watch the Fred Bus and the trolley go by, and talk about how people get where they need to go. But I have to wing it.
I'm starting to think he really did turn the teacher into a frog.
However, he will not talk about school. Trying to get him to talk at all immediately after school is a lost cause. I am going with the working assumption that he is tired, trying to regain his bearings, and perhaps is simply unable to access language after a lot of hard work. I'll keep you posted as I test this theory, as he gains more ability to communicate with us. Anyway, no point in grilling him immediately after school. I'm lucky to get any words at all.
However, asking him questions about school is generally problematic. If he's really with me and I have his attention, he'll give me scripted responses (What did you do at school today? "I had fun, Mrs. Huff was at school today, Went to school" etc.) and will answer all yes/no questions with "yes" (Did you sing a song today? Yes. Did you read a story today? Yes. Did you play outside today? Yes. Did you turn your teacher into a frog today? Yes.) For other activities, I get some spontaneous answers. (Did you sing a song in Speech Camp today? Yes- Wheels on the Bus! Did you enjoy swimming today? Yes- sprinklers! Fun!) For school... nada. i have no idea what he's doing this week. The teacher sent me home a note on the first day, but since then, nothing.
I find this a little odd, and a little worrying. I could do some more peculation as to why school seems to be a taboo subject for question-answering, but it wouldbe just that- speculation. It's also worrying that I have no way to really supporting the school program at home. If I don't know what songs are being sung or what stories are being read, I can't keep up the theme at home. For example, if they are doing, say, Three Billy Goats Gruff, I can play the Leah's Farm Signing Time more, maybe plan to take him down to Maymount to feed goats this weekend, and read him fairytales with trolls, and talk about fairies and things with him. Or if they are singing "Wheels on the Bus" every morning, I can get out his buses and we can sit outside and watch the Fred Bus and the trolley go by, and talk about how people get where they need to go. But I have to wing it.
I'm starting to think he really did turn the teacher into a frog.
Non-listening
You know it's time to stop trying to discuss and just smile and nod when these words escape the lips of your conversation partner:
1. Yeah, normal kids do that, too. Or it's variant, "Yeah, my [normal] kid does that, too." Perhaps to a far lesser degree than my kid does whatever we were talking about. Usually I get this about meltdowns. "Yeah, my kid melts down in the grocery line, too. She hates to wait. She always wants a candy bar."
What I want to reply: "Really? Can she still speak well enough to press for that candybar she wanted? Yes? You have no clue what a meltdown is."
What I usually say instead: "Really? Must be tough to get her through the candy line. They need to keep that 'no candy/no tabloids' line open more."
2. You know, I'm a little autistic myself. This line is usually followed by some minor problem that vaguely suggests a desire for order, or habit. Such as "I don't like florescent lights" or "I like having my coffee with two and a quarter creamers." Small sensory issues are not autism, people. What really gets me is this usually forebodes some comment about autistic adults not needing services (see #3).
What I want to say: "Grow up."
What I usually say instead: "I have my foiables, too. If we didn't, life would be really, really dull."
3. S/he doesn't need {insert service here}, s/he just needs to grow up and learn to do things for him/herself. I wish I had someone to {provide specific service} for me!" OK, folks, I have mild executive dysfunction, some sensory issues, and an occasional stutter. These things don't get int eh way of functioning for me. As an adult, I am expected to clean my own house, keep my own records, shop for my own needs, etc. and I am able to do so, even if I need a little extra push with systems, ideas, and tools. It may not always happen, but I an able to make those compensations. Some people require extra people or extra equipment to make those kinds of compensations- such as an aide, or a communication board.
What I want to say: "So, you're saying a paraplegic shouldn't use a wheelchair, because he's got legs?"
What I usually say instead: "If you're having trouble with {specific service mentioned above}, maybe you should {hire someone to provide that service/buy equipment to help complete task.} [Since the most common one is about having an aide to do things like help with grocery shopping or household tasks, I am usually recommending a maid service or a good mop.]
4. Your child isn't autistic. He just needs a little discipline! This is usually followed by suggestions of violence.
What I want to say: "And where di you get your degree in child development or neurology? With a specialization in autism? And on what basis are you making your diagnosis? How would you like it if someone smacked you for wanting coffee in the morning?"
What I usually say instead: "Yes, we're really lucky, Joey's a good kid, working hard. However, his doctors all agree, he's definitely ASD. I see he's bothering you with his {unusual behavior- usually tracking}, so I'll let you get on with whatever you're doing- we need to go home."
5. Oh, he'll be fine. My cousin's friend's great-aunt's brother twice removed didn't talk 'til they were four! I got this a lot more when Joey was non-verbal, but it still pops up when people notice he's not speaking the way other five-year-olds speak.
What I want to say: "Did they say "momma" and "daddy"? Did they point to objects? Yes? Joey didn't."
What I usually say instead: "How interesting. Speech delays are fascinating. Anyone else in your family have speech delays?"
6. All children have eccentricities. This is another one of those red-flag phrases that means the conversation is about to bend in the direction of "Your kid's not really autistic" or the person has little experience with sensory dysfunction, ritualistic behavior, perseveration, or echolalia. Yes, some little kids like to repeat words. Few repeat entire episodes of television shows. Yes, some little kids like to jump around and crash into things. Few will want to do this for hours on end, and to the point of bruising themselves. Lots of little kids don't like sudden, loud noises. Some will even scream in response. Few will have hour-long meltdowns or have to track lines in the carpet for the next half-hour. And few would think the closing of a car door qualified as a "sudden, loud noise."
What I want to say: "Stuff it in your ear."
What I usually say: "Yes, that's how personalities are made. My guys sure are characters- didn't have much of a chance not to be, with me as their mother."
Sometimes trying to explain the difference between raising a normal kid and raising an autistic one is just not worth the effort There slittle point in trying to talk to someone who is telling you they have no intention of listening to a word you say. Tiem is at a premium here; I have better things to do. When you get that cue of "shut up- I don't want to talk about you or your kid" with the further implication of "I just want to talk about myself" sometimes the best thing to do is to oblige, and get out of the conversation pronto.
1. Yeah, normal kids do that, too. Or it's variant, "Yeah, my [normal] kid does that, too." Perhaps to a far lesser degree than my kid does whatever we were talking about. Usually I get this about meltdowns. "Yeah, my kid melts down in the grocery line, too. She hates to wait. She always wants a candy bar."
What I want to reply: "Really? Can she still speak well enough to press for that candybar she wanted? Yes? You have no clue what a meltdown is."
What I usually say instead: "Really? Must be tough to get her through the candy line. They need to keep that 'no candy/no tabloids' line open more."
2. You know, I'm a little autistic myself. This line is usually followed by some minor problem that vaguely suggests a desire for order, or habit. Such as "I don't like florescent lights" or "I like having my coffee with two and a quarter creamers." Small sensory issues are not autism, people. What really gets me is this usually forebodes some comment about autistic adults not needing services (see #3).
What I want to say: "Grow up."
What I usually say instead: "I have my foiables, too. If we didn't, life would be really, really dull."
3. S/he doesn't need {insert service here}, s/he just needs to grow up and learn to do things for him/herself. I wish I had someone to {provide specific service} for me!" OK, folks, I have mild executive dysfunction, some sensory issues, and an occasional stutter. These things don't get int eh way of functioning for me. As an adult, I am expected to clean my own house, keep my own records, shop for my own needs, etc. and I am able to do so, even if I need a little extra push with systems, ideas, and tools. It may not always happen, but I an able to make those compensations. Some people require extra people or extra equipment to make those kinds of compensations- such as an aide, or a communication board.
What I want to say: "So, you're saying a paraplegic shouldn't use a wheelchair, because he's got legs?"
What I usually say instead: "If you're having trouble with {specific service mentioned above}, maybe you should {hire someone to provide that service/buy equipment to help complete task.} [Since the most common one is about having an aide to do things like help with grocery shopping or household tasks, I am usually recommending a maid service or a good mop.]
4. Your child isn't autistic. He just needs a little discipline! This is usually followed by suggestions of violence.
What I want to say: "And where di you get your degree in child development or neurology? With a specialization in autism? And on what basis are you making your diagnosis? How would you like it if someone smacked you for wanting coffee in the morning?"
What I usually say instead: "Yes, we're really lucky, Joey's a good kid, working hard. However, his doctors all agree, he's definitely ASD. I see he's bothering you with his {unusual behavior- usually tracking}, so I'll let you get on with whatever you're doing- we need to go home."
5. Oh, he'll be fine. My cousin's friend's great-aunt's brother twice removed didn't talk 'til they were four! I got this a lot more when Joey was non-verbal, but it still pops up when people notice he's not speaking the way other five-year-olds speak.
What I want to say: "Did they say "momma" and "daddy"? Did they point to objects? Yes? Joey didn't."
What I usually say instead: "How interesting. Speech delays are fascinating. Anyone else in your family have speech delays?"
6. All children have eccentricities. This is another one of those red-flag phrases that means the conversation is about to bend in the direction of "Your kid's not really autistic" or the person has little experience with sensory dysfunction, ritualistic behavior, perseveration, or echolalia. Yes, some little kids like to repeat words. Few repeat entire episodes of television shows. Yes, some little kids like to jump around and crash into things. Few will want to do this for hours on end, and to the point of bruising themselves. Lots of little kids don't like sudden, loud noises. Some will even scream in response. Few will have hour-long meltdowns or have to track lines in the carpet for the next half-hour. And few would think the closing of a car door qualified as a "sudden, loud noise."
What I want to say: "Stuff it in your ear."
What I usually say: "Yes, that's how personalities are made. My guys sure are characters- didn't have much of a chance not to be, with me as their mother."
Sometimes trying to explain the difference between raising a normal kid and raising an autistic one is just not worth the effort There slittle point in trying to talk to someone who is telling you they have no intention of listening to a word you say. Tiem is at a premium here; I have better things to do. When you get that cue of "shut up- I don't want to talk about you or your kid" with the further implication of "I just want to talk about myself" sometimes the best thing to do is to oblige, and get out of the conversation pronto.
Sunday, July 15, 2007
The Bright Side
Sometimes when things happen, it's better to look on the bright side.
Problem: Your kids are bored in the store and start smacking each other for fun.
Cons: Screaming children in the middle of a crowded Walmart is never a plus.
Bright Side: You aren't going to be in the store very long, so you won't spend as much money.
Problem: Your kid knocks his head against your $3000 LCD HDTV, cracking the glass.
Cons: No TV. You think we can afford to replace a $3000 TV? And we checked- it costs even more than that to fix it.
Bright Side: The Oobi theme will no longer be piped at top volume through the house, and you may get "Sesame Street" out of your head at last.
Problem: Your kid gets hold of a sharpie pen, and loves to write on anything that is NOT paper.
Cons: You now have black scribbles on every surface imaginable, and some you thought were inaccessible. The furniture, the floor, the walls, the computer screen...
Bright side: You have a blossoming artist. You discover what will take sharpie ink off of surfaces. There are no more sharpie pens in your house.
Problem: Your kid gets carsick unless you stop every 30-40 minutes, and you have a four-hour (or more) drive ahead of you, and you can't cancel the trip.
Cons: The four-hour trip is going to take a LOT more than four hours, and you are going to need to take a LOT of extra clothing, and you're going to have a LOT of cleaning to do until you figure out today's pattern of warning of signs (did I forget to mention that they change?)
Bright Side: You will know where every fast-food resteraunt is between home and where-ever you are headed. You are about to have a very clean car.
Problem: Your kids have just figured out the trigger on your Wetjet, and the entire bottle of cleaner is now in a pool on the floor.
Con: You have little wet footprints through the house, cleaner on the floor, and you're going to have to clean it up, because you don't want little hands in floor cleaner.
Bright side: You are about to have a very, very clean floor.
Problem: Your kids are bored in the store and start smacking each other for fun.
Cons: Screaming children in the middle of a crowded Walmart is never a plus.
Bright Side: You aren't going to be in the store very long, so you won't spend as much money.
Problem: Your kid knocks his head against your $3000 LCD HDTV, cracking the glass.
Cons: No TV. You think we can afford to replace a $3000 TV? And we checked- it costs even more than that to fix it.
Bright Side: The Oobi theme will no longer be piped at top volume through the house, and you may get "Sesame Street" out of your head at last.
Problem: Your kid gets hold of a sharpie pen, and loves to write on anything that is NOT paper.
Cons: You now have black scribbles on every surface imaginable, and some you thought were inaccessible. The furniture, the floor, the walls, the computer screen...
Bright side: You have a blossoming artist. You discover what will take sharpie ink off of surfaces. There are no more sharpie pens in your house.
Problem: Your kid gets carsick unless you stop every 30-40 minutes, and you have a four-hour (or more) drive ahead of you, and you can't cancel the trip.
Cons: The four-hour trip is going to take a LOT more than four hours, and you are going to need to take a LOT of extra clothing, and you're going to have a LOT of cleaning to do until you figure out today's pattern of warning of signs (did I forget to mention that they change?)
Bright Side: You will know where every fast-food resteraunt is between home and where-ever you are headed. You are about to have a very clean car.
Problem: Your kids have just figured out the trigger on your Wetjet, and the entire bottle of cleaner is now in a pool on the floor.
Con: You have little wet footprints through the house, cleaner on the floor, and you're going to have to clean it up, because you don't want little hands in floor cleaner.
Bright side: You are about to have a very, very clean floor.
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