Autism & Public School: My Experience

Third Grade So Far

2010-09-15T20:55:00.002-04:00

So far DuckyBoy loves his teachers and third grade. He's being a bit physical but overall holding himself together well. he told me he discovered how to access his "filter," by which I think he means his self-calming mechanism (which enables him to not burst out with an angry yell ... still working on it helping him not use force. apparently).

Only the 4th day and he came home with sheet full of stickers and a prize!

As for whatever happened on the playground, I just want to state right here, before I find out any more details of anybody's side of things, that I am NOT going to blog about it.

What a Difference a Year Makes

2010-01-26T21:55:00.004-05:00

Tonight was the second annual Family Fitness Night at DuckyBoy's school. Last year, we all went, but it was for us a flop. It was overall a great success, but that meant every classroom was crowded and LOUD, as were the gym and the cafeteria.

This year, I marked it on the calendar but didn't mention it to DB. I figured, if he wanted to go, we'd go, but I wasn't even going to bring it up.

When I picked him up tonight, he was very excited about going. So, we came home and ate dinner, worked out the logistics with Dad (who declined to attend this time), and headed back.

Several things were different than last year's experience, but DB is a different kid as well.

The differences in the situation overall were these:

Purely by accidentally running late, we missed the 15-minute sitting-still introduction in the auditorium (which bored him last year), and arrived at an exciting time when everyone was filing out of there and to the various rooms.
The gym and cafeteria both had fewer games so were less chaotic.
DB didn't know who else was going of his friends, so his expectation of hanging out with any of them was low.

Differences in him I saw this year:

He could handle the noise
He waited his turn to run under the parachute (I'm sure it helped that he got to sit on it and get spun first!)
He didn't insist on staying with his friends when we did see them
He tried a wide variety of activities: parachute, Wii (waiting patiently on line), obstacle course (with just a tiny bit of prompting to stay on line and reassurance he only had to do it once), bowling, even hula hoop!
He lasted the whole event, an hour, and was disappointed when it was done.
When we met the gym teacher in the hall, DB thanked him for setting up the event, and told him we were skipping in the hall to get even more fit. A real conversation!

I was skeptical about going tonight, but simply steeled myself to be prepared to leave at any time. Now that it's done, I'm so glad we went.

Why Not Make Him Class Pet?

2010-01-13T09:06:00.005-05:00

Who could resist this face??

This news story about an autistic boy whose dog isn't allowed to come to school with him has me wondering: Is there something the school district isn't, or can't say?

Seems like a no-brainer; if having the dog makes the kid learn better, and it's documented, why not allow the dog? Is the dog not nice, is the principal's kid (or the principal or the teacher) just afraid of dogs? Does the dog make a mess? Is it disruptive? Does he have bad breath? Did the family refuse to join the PTA?

The school district is hiding behind legalese -- that the dog is not officially a "guide dog" -- rather than giving a real reason. Something's not working, or ... someone's just being all by-the-book.

The argument that really got me was that it's equivalent to telling a blind person they can't use their cane beucase they do alright without it. He's being punished for being higher-functioning.

If having a dog with him would help DuckyBoy better suffer through music class, I'd be all over it. If, in kindergarten, a dog would have helped him with meltdowns, with hitting, would have helped control disruptive outbursts, I'd be all ove rit.

The boy in this story, Scooter, "tries to hit" his 3rd-grade classmates every day. Wouldn't the classmates --and classmates' parents -- find the dog preferable to that?

I hope so.

Eww, Lice!

2010-01-07T21:31:00.005-05:00

We escaped the Great Lice Outbreak in DB's class last fall, only to get a call this morning to come get him, he had nits. Three, he said the nurse said, and that it was clearly just starting.

By the time we got home and I psyched myself up to do the thing (and read the directions 4 times), I could actually see a few squirmy buggers on his scalp. Yuck!

The descriptions they give you on the health pages didn't really help. I couldn't see any nits at all, and the bugaboos I saw were yes, as long as sesame seed, but half a s wide, and more blackish than greyish.

Eww.

Amazingly enough, DB did really, really good with the whole process, in more ways than one.

Emotionally: It probably helped that we've been discussing the possibility since the fall, his best friends have had lice already, and we've been over and over how it's not a big deal, they're treatable and doesn't hurt. So his anxiety was minimal. There is also an episode of Arthur that was on in probably September that he watched over and over even before the class outbreak, just because it's an amusing episode, and all the families in Arthur's class deal with the issue in a variety of ways but all matter-of-fact and positive. (Click for a thoughtful review of it; the episode is called "The Lousy Week.")

The nurse was also very low-key about it, saying "just 3 nits," which didn't sound like much at all. That helped me not to freak out too! But I still wasn't surprised to see live squirmy lice later when I combed through it. (None at bedtime, though ... fingers crossed!)

On the way home in the car, the first story we told was about what if the penguins on Club Penguin got lice, and when they went to log in they'd get a message saying, "Your penguin isn't allowed on the site right now, he has lice!"

After a few minutes of talk about how they'd buy special shampoo and solve the problem, he was ready to move on to another topic.

Physically: He has some kind of sensory issue with the top of his head: He HATES having his hair combed, hands run through it, his scalp scrubbed.

So here I am with this scenario: Rub the medicated shampoo into his dry hair; leave 10 minutes; lather and shampoo it out; apply gel section by section and comb through his hair meticulously, pinning up each section as I go; then shampoo again. I had no idea how he'd react.

Thank you, Neopets.com and Club Penguin, for keeping him entirely occupied during the entire process (except the shampooing parts)! It was amazing.

New Year, New Perspective

2010-01-07T21:09:00.004-05:00

I haven't been posting much this school year -- that's for a couple of reasons. The first is that DB has 2 terrific teachers this year for 2nd grade.

The second is that I'm a little cowed by a little chat the principal had with me at the end of last school year, wherein she made sure to mention my freedom of speech and that she had not herself read my blog but she had staff members who were very concerned about it, well, basically, nobody likes a squealer, other parents mind find it, yadda yadda.

If I'd had a day or so to prepare for the topic of the meeting I would have had snappy answers like "Nobody likes a bad school year, either," and "It's nothing different than what we say to one another on the playground."

But of course I was caught completely off guard and said little to nothing.
But, surprising for me, was what I didn't say -- which was anything to the effect that I'd stop writing this blog.

So I've spent the fall thinking about what I can write. The posts I look back and find helpful are the ones where I write down what worked and what didn't in a given situation, so I can pass that knowledge forward for the new year.

I also find it helpful to chronicle DuckyBoy's behavior during certain stressful situations -- like concerts -- so I can see his progress (or lack thereof).

I get the most traffic when I write about things I can't find clear answers for on the web; my most-found post is Handling Autism Aggression, which is exactly the phrase I typed into Google and didn't find much, so when I searched around I aggregated what I found.

I'd like to do more of that but don't always find the time. Plus, when the year is going well and he's maturing so well (albeit a little behind his peers, but certainly following a similar curve) I have less to look up.

I'm sooo happy with DB's teachers. I like the amount of homework, and they send up a red flag as soon as he falls a little behind to make sure we do a little extra in that subject to bring him up to speed. He had trouble at first this eyar with counting coins -- he had trouble telling the coins apart -- but now is fast becoming a whiz.

We weren't sure how Mr. Precise would take to the "estimation" unit, so we laid the groundwork at home the weekend before that math lesson started, and it turned out he picked it up in a flash. (He still corrects me sometimes when I say it's "7:30" and he sees a digital clock say "7:29." Sheesh.)

He still has bad days: The day of his class holiday party he acted out so loudly during the assembly he had to miss 2/3 of his own class's party, sitting in the office as penance for yelling out, more than once, during the program. Yesterday, the after-school director told me he'd yelled at the guy in charge of his group, then loudly cried and claimed he didn't ... then quickly recanted, apologized, and moved on.

But more days than not are good. Which is a wonderful way to start the year.

Good Behavior Is Relative

2009-12-16T20:58:00.002-05:00

The holiday concert is Friday afternoon; so far there has been no drama about getting ready for it, no reports home of needing to promise rewards for good behavior during practice and during the concert.

Maybe DB isn't in the front row this year; maybe he's standing next to girls; maybe he just lieks the songs better (who could be too upset about singing "Frosty the Snowman"?).

At any rate, I've got high hopes. Of a reasonable amount of standing still, no outbursts, and something that looks like singing from time to time (lip synching is acceptable, since I won't know anyway).

Fingers crossed and say a prayer!

Humming Along in Second Grade

2009-12-06T22:24:00.004-05:00

DuckyBoy is doing so well in school this year that I hardly have anything to write here. An update on a variety of areas, in no particular order although I will start with his strongest suit:

Reading: Way above grade level. He's at level N, when the highest they expect at the end of 2nd grade is M. N books are hard for him, though. He's fallen in love with Judy Moody, who's at M level. So that's awesome. I think he also sneaks in some Jigsaw Jones action and doesn't tell me.

Reading Comprehension: A little lower than it oughta be. Especially when it's a topic that doesn't hold his interest. I'm wondering if he doesn't need some support in this area -- am hoping his teachers have or will notice a trend in when he's more or less able to understand, especially things he hears versus reads. (Both are low.)

Consequence reports: He had one Friday, but prior to that it's been weeks. Friday's issue was either a "testing the lmits" issue or a case of distracted listening. Either way I'm glad they follow through and I'm also glad it wasn't a seriously awful offense. (No one got hit or anything, unlike the reports earlier in the year.)

Supergirl: Came home for good! There was a minor snafu the day we got her, the science teacher thought he was good to go, but in the afternoon he'd done something to lose his final sticker. But I'm there Friday, it was easy, we'd already told him, so she came home with the stipulation she wouldn't move into his room until he got that last sticker. I told the teachers to hold out for BOTH Monday stickers instead of just one -- and he did it.

Social studies: They've started social studies this eyar, and he's enjoying it. They're learning about New York City, so that's a good first topic for him. He wants to take my giant photo of the Brooklyn Bridge in tomorrow. I haven't decided yet what to do.

Social skills: He helps at home sometimes without even being asked! Like, he'll hold a door or offer tot ake out the recycling. Other times, when he is asked to help, he still balks, but sometimes asks, "Is that a rhetorical question?" so he knows he has to do it. He's better at greeting people and saying goodbye, but it's still done grudgingly at times.

Math: This one's tough for him. Times (other than even o'clocks), coins, adding and subtracting bigger numbers like 7,8,9,12, are hard. He doesn't seem to know how to figure it out so he tries to guess. I mean, really guess, something totally random. He's better at the story problems ("Singapore math," it's called), and improving with counting by 2s, 10s, telling time on the half-hour, and making change. This is one of the areas where I feel like, "He's only 7." But I do want him to stay with his grade.

Typing/computers: Better this year. Don't know why. Maybe it's less mind-numbing (for him) typing fjfjf jfjfj, and more words to keep his brain engaged, so he can stay on task longer. The other day he said they practiced oputting in and taking out flash drives, which he loved. "It was even better than KidPix!" he said. KidPix is the drawing program that he loved in K and was heartbroken to find out was not the computer class curriculum in 1st grade. This year, it's the reward for getting their main work done. (I think it was last year, too, but he almost never got done in time.)

Music: Still a challenge. Honestly, he doesn't like any voice out of tune, even mine, which, sadly, usually is off-key. Fortunately the cluster teacher knows him, and sympathizes. The winter concert is coming up soon; I've already laid the groundwork that (a) he has to participate since it's during the school day and (b) he is already learning the songs (for some reason he got anxious that he wasn't being taught the songs).

Writing: I don't know what changed, but what a difference. He draws and writes stories in nothing flat. Capitalization? Not so great. It'll get there. Ability to write readable letters and not-so-clipped stories, improved tremendously.

Homework: Since he does it at Afterschool almost every day, it's practically become a no-brainer at home. I hear he's the first one done (because when you're done you can play!), whereas at home, it was torture.

Friends & Girlfriends: He's a bit obsessed with the same classmate he was last year, the one everyone else loves as well. When she was challenged by the teachers one day last week to play with girls, not boys, at recess, he apparently freaked out ... then got it together and found other peopel to play with. It's sucha love/hate thing: She's good at everything, so that bugs him, but it'd also attractive that she's smart. She's also as strong-willed as he is in terms of wanting to play what she wants to play the way she wants to play it (just like he is), so they clash on that front from time to time. On recent playdates it was painful to have him run to me "She won't let me do this!" "She won't play my game!" -- he's so upset he can't think of any way to compromise.

Same "girlfriend" as last year too. She's much more easygoing and great for him. She's in Afterschool, which is why he likes being there so much. It's like they get a playdate every day. One day he told me another girl is his "backup friend" when these 2 aren't around. I'm sure he means it positively, that she is another friend of his; I do try to help him avoid sharing his bluntly honest language with the people involved!

Some of the stories we tell actually involve boys from his class now and then, which is a huge change. Just this weekend our Build-a-Bears were stand-ins for several classmates, and he named enough boys to cover all the bears.

We don't do a lot of playdates; I'm just bad at setting them up. One of his classmates lives close enough that we and his parents get movitated more often to set things up. So I suppose we talk about him more often than about other kids. Which made DB indignantly inform us we make it seem like the 2 boys are "best friends," and "why do we keep saying that." He now knows the term "geographically desirable" as well as the facts that we two families are friends and, surprise, he and this boy get along really well every time they play together! It's so funny to me that he can't see that. But last year they were at odds, so it's nice to see them reconnect this year. (They have Transformers in common, among other things.)

SDI: We get program-wide updates on the curriculum, which is cool. I get no complaints from him, though not much else either. At least the name doesn't annoy him Every.Single.Time they meet, like last year's did. Funapallooza indeed. He was sorry he suggested that one!

Lunch: I'm running out of steam here, oops, it's after 11 PM. But this is big: He eats hot lunch at school every day. Hooray! No more buying Uncrustables at $1 a pop or getting up early enough to cook pasta every morning! If he deosn't like the main choice he has a grilled cheese. I pack him 2 bags of snacks, one for mid-morning and one for Afterschool. I was packing both snacks in one bag and a few sides for lunchtime in another, until one day he told me he always ate all the snacks at mid-morning snack and the lunch-bag snacks at Afterschool. So I shifted what I put where! However that info came out, I was glad it did. He didn't volunteer it out of the blue, but it was a real shift that he was able to articulate it to me, clearly and without anxiety, and that it obviously was something he'd figured out a way to handle on his own.

It's been almost a year since we reintroduced dairy products. It's been a good thing. I am trying to avoid giving him too much of the overprocessed stuff --we did a Goldfish challenge a few weeks ago, he was mainlining the things and I thought they were making him cranky -- but yogurt, cheese sticks, he likes and they help him feel full.

Playground: I'll end this on another strong suit. other than the being-obsessed-with-that-one-friend issue, I hear he's awesome on the playground. Some of the other Nest moms are still concerned that their kdis are using this unsupservised time to zone out, or fixate, but DB is playing games and interacting with other kids like a champ.

Imagination

2009-10-16T10:44:00.002-04:00

This is just too cute, Marni's latest blog post is about her son's developing imagination and includes an audio clip of him pretending to be on the phone with Superman.
As I said in a comment, the transcript alone is adorable, but the audio is too cute for words.

Today's Lesson from After School

2009-09-30T18:25:00.003-04:00

You shouldn't call people's babies ugly.

Nuff said.

(DB is actually doing fine in after-school, and the coordinator is awesome with him. But he is a piece of work!

Dietary Issues and Autism

2009-09-30T07:41:00.005-04:00

This post could also be titled: Rowing Out to Meet the Boat I Missed...

Last week was Autism Awareness Week at DietsinReview.com. I was honored that they asked me to write about my experiences with the GFCF diet, so even though we only did the "CF" part I was happy to oblige. (I don't think I've ever had that many links in one paragraph before!)

It was interesting to choose an angle to talk about, since the posts are limited to 350 words. Would I talk about how, once I shared with other moms at school the improvements I'd seen, 2 of them tried it, and several others said something like, "Oh, yeah, we tried that..." and trail off.

Or would I talk about the fact that of the two moms who tried it simultaneously with me, one found it easier that the other for several reasons: Her Asian background meant that a wider variety of GFCF foods were already in her child's diet, and she was a stay-at-home mom like me. For the other mom, a working mom of 3 kids under age 6, finding the foods and making substitutions was next to impossible.

Part of the diet's success for me was the amount of time I was able, and willing, to devote to preparing things that were not only CF but also would be something DuckyBoy would eat.

It was this past Christmas that we tried going off the diet. Now, he's in love with the grilled cheese sandwiches at the school cafeteria, and some days I find myself wondering what protein he ate on the CF diet now that I pack some combination of cheese sticks, cheese crackers, and Goldfish for his snacks or lunch almost every day.

Another topic I considered for my post was how different eating is from when I was a kid. There just weren't as many processed choices with whey or powdered milk snuck in. But there also weren't as many health food stores that carried alternatives to cow's milk and cheese -- and what available often wasn't so yummy. (I never did find a good vegan cheese. Tofutti cream cheese was as close as we got. Never did make that stuffed jalapenos recipe from their website...)

They even used my photo of Crabby Patties!
Made with dairy-free Tofutti cream cheese, of course.

I could have talked about how much better I felt while on the diet with DuckyBoy. It's all but impossible to avoid cheese now, and I'm back to loving pizza, but I put almond milk in my coffee and find I eat waaaay less cheese than I used to. The less I have, the less bloated and more light I feel.

To check out what I went with, read my guest post. And while you're there, check out the rest of the Diets in Review site. It's a neat idea -- a central place to check out info about all the many diets out there. I'm looking forward to watching the site grow, because for me an important part of evaluating a diet is the success (or lack of it) from people who've tried it.

Anger Management with PDD

2009-09-20T11:47:00.004-04:00

On Friday, DuckyBoy got THREE Consequence Reports. Needless to say Husband and I were NOT happy.

First he tackled his cluster teacher when she got upset that he kept bonking into her while swinging his arms. (I'm gonna guess they were standing in line and, therefore, supposed to be standing relatively still.)

Then he punched her when she gave him a Consequence Report for tackling her!

This was all before noon. Then, after lunch at recess, he hit a classmate over the head with his lunchbox (thank goodness it was a soft one, not one of his metal ones; that's a story for another day) when she said "The girls won!" at pinball, because, he says, the gym teacher had said both sides won. Apparently there's some discrepancy there, but at any rate, there's no reason to hit someone over the head. For that, he's got to stay inside from recess TWO days next week and sit in the principal's office.

Argh!!!

Since I'm at school on Fridays, I heard about all this shortly after it happened and took him straight home at 3 o'clock; no After-School fun for him that day. He eventually did the first Consequence Report that night, and got better at doing the second and third. We let him do one each day, but next time he gets more than one they'll all have to be done at once -- he just takes too much advantage and we can't get any sense of when he'll be done. ("He can't hold us hostage!" Husband complained.)

I'm happy with the Consequence Reports system; DuckyBoy sure hates doing them. I just hope that helps get through to him, and we won't have to do too many more!

The only upside to the report-writing is he has discovered that he likes being in his room. Shouldn't be surprising, I know, that a child likes to be in his own room. But this is new for DB. It was always like torture to be in his room without someone (hint: me) there to entertain and accompany him. But now, when the alternative was to be writing out a Consequence Report? He's discovered that he likes it. Even when the reports are done.

Another upside was that the Discipline Code made some sense, had some relevance. Every year NYC sends home this big-arse booklet with all the possible infractions a child can commit, in order of severity, according to grade level (K-5 are one section and middle/high school is another). K-5 has 5 levels of misdeed, and for each level there are listed the possible consequences, starting with level 'a," admonishment by school personnel, to "i," which is permanent suspension and reassignment to another school.

After reading the booklet the child and a parent are supposed to sign that it's been read and will be followed. The past 2 years, I've simply told DB that it means to follow the rules, and had him sign it. This year, I went through it and highlighted any type of thing he's done and the consequence. Then I read him those parts.

Physical aggression is Level 4, and being sent to the principal's office for recess is Level "e."

Since he really struggles to get the whole sympathy/empathy thing, it really helped to be able to show him where his behavior fell and to see that being sent to the principals office IS a big deal.

I hope it helps. Here I am, la di dah, writing poetry about trying to help him, and he's wailing on people all day long.

Doom-and-Gloom Husband thinks, of course, that the kid has a psychological problem and is manipulative and selfish and possibly ruined for life. (Not quite, but that's how he comes across. Oh, and did I mention, it's my fault?)

I think it's a developmental stage. A TODDLER developmental stage. Not that knowing that should change anything about our response, at home or school; I'm just (since he's my kid) fascinated to see this specific "delay" in his "PDD."

DuckyBoy seems so sophisticated, especially with his vocabulary and his mannerisms. More than one person has commented that he seems more like 70 than 7.

When in fact, part of him is still developmentally only around 3. Less than half his chronological age.

Aggression is a common toddler behavior that's often seen at around the same time as whining, crying and saying "I'll do it myself."

And as I think about it, DuckyBoy is doing all those things now -- having never really embraced them when he was a toddler.

In other words, I had to wait like 5 years for this. I had pretty much closed the book on him ever separating from me or declaring his independence. Yet, here it is.

It's hard to express how it makes me feel to think about this and remember the preschool teachers pushing me out the first day. I knew they didn't get it. Sure, he survived and did OK. But he wasn't anywhere near ready for that separation from me. Not like we could have waited for this, but it could have been handled differently.

And I'd like to think that looking at it this way,as a normal albeit delayed stage rather than a kink in his brain, will help us all to respond firmly, consistently, and appropriately.

I think that means guiding him toward understanding, rather than trying to reason and bargain with him. After all, bargaining with 3-year-olds really isn't recommended. Having clear rules and consequences is.

Once again, DB is lucky to be surrounded by the people he is.

A Little Bit of Teasing

2009-09-16T14:13:00.005-04:00

DuckyBoy is doing great so far in second grade, and he loves the after-school program.

"Mommy, after-school makes school fun!" he said when I picked him up the first day.

The downside of 2 hours of less-structured time with his peers is the chance for situations he doesn't know how to deal with.

Yesterday, he mentioned being teased. It came up recently at the playground by our home, too -- and I just don't know what to tell him to say or do.

At the playground he had a Transformer toy and another kid wanted him to either let him see it or transform it to robot mode from vehicle mode, and DB didn't want to do either. I suppose I should have just made DB hand it over and been done with it. But we just got it, and I have more sympathy for wanting to keep your mitts on your own toy when it's new. (I've got my own "other kids break stuff" anxiety issues.)

So then the other kid was saying "Oh, you don't know how," and similar stuff. Not really trash-talking or bullying him, I think the boy just liked the toy too and wanted to see it change.

And, he wouldn't let it go. I held the toy for a while, but every time DB took it back one of 2 boys would buzz around him. So we finally left after only about 15 minutes.

As for what happened at school, DB he said someone was teasing him about being in love (to which I said, Well, other boys your age don't understand). I think he said it was the same boy who did some similarly, not-that-bad teasing of him last year. Then DB said his little girlfriend joined in, which I think is what really got him.

Now, I never know for sure with him,, right? She might have said something he misinterpreted at that point.

But anyway, I am at a loss for how to help him learn to deal with the other kids in this type of situation.

Sometimes ignoring it or walking away isn't possible.

And sometimes it's not so severe that an adult's intervention is required. (Also, I don't want him to rely on that for every little thing. Right now it's his default: "Mommy, come talk to him.")

There's not that much on the web for little kids; a couple of sites offer some tips, but I'd love to have more tools for little kids like DuckyBoy.

I don't expect the school to solve it, or make all the teasing stop (there is an anti-bullying policy, but the instance so far hardly seems to qualify --at least as far as it was described to me), but I do hope together we can give DB some coping skills.

Pervasive Developmental Delay in Real Life

2009-09-10T22:21:00.005-04:00

When I worked at American Baby, we loved and relied on the month-by-month What to Expect books. What to Expect the Toddler Years puts this behavior in Month 29. Of course they clarify that every child develops differently, and 29 months is likely on the early side of when a typical child would say "I want to do it myself!" in reference to something like putting on his own shirt or pants.

29 months is not-quite-3.

My son finally said it for the first time at not-quite-7. (He turned 7 a week ago today.)

What matters most to me is that he said and felt it.

But it's hard to function in society as a mom and as a young kid when you're that far off from where everyone else is.

It's not so much that he's behind, per se, as that he's somewhere so different than where the others are.

His peers were still into Barney when he was into The Magic School Bus. That's a mental issue and is seen as advanced, not delayed.

But this is an emotional issue, and he's seen as lagging behind.

I can't tell you how thrilled I was to hear, "I want to do it myself!"

You may have even heard my sigh of relief. It's been a long haul.

And fortunately, DuckyBoy's little girlfriends love him for where he's at!

A Super Start

2009-09-09T17:31:00.006-04:00

I'm delighted that DB came home saying his first day was "perfect..." except for one incident. His girlfriend sits next to him, his lunch was delicious, and his teachers are "really nice."

The incident was small but marks a big and positive shift in how it was handled at school and consequently how we handled it at home as well.

He was calling out answers instead of raising his hand, and so they called on him as much as they could when he did raise his hand to reinforce that (good to know!) and then, since he is himself, then when they did not call on him he had a minor tantrum, which they ignored until he started to scrape his desk around, which I can understand was annoying and distracting to everyone else. And, wonderfully, I have this info right from his teachers (via email), how awesome is that!

And so, he did not get a morning sticker, and he got a consequence sheet sent home -- day 1! I'm so glad they're conveying the seriousness of the rules right away. (The rule he broke was "being kind to others" -- the noise hurt their ears.)

It really helped us start the year right, too -- though it made for a painful evening. DB's consequence was worse than anything we could have taken away: he had to write why the incident happened, how it impacted people, and what he could do differently next time.

He did pretty good talking over the answers with me, but got very agitated and distracted when it came time to write. Now, mind you -- I wrote down what he said, and all he had to do was copy it. Maybe that was too dull? But I know he has trouble focusing on what he wants to say, too. Fine line. I think he'd have been too distracted to even remember what he wanted to say. He also gets distracted when he can't spell a word. This way I hoped I was taking all that away.

I was trying the tactic of going in and out of his room to give him time to do it on his own, because I know I distract him. But he wasn't getting anywhere with or without me, and finally he whined one too many times and his father laid down the law: Don't come out until it's done.

He needed help 2 more times, got over halfway done with the first of the 3 questions, and then I think just gave up. He did stay in his room, though!

So, I finished making dinner, Husband and I ate, and then I tried one more approach: magic Chiclets. They help people write. But you have to start writing first and be sitting with pencil in hand when you eat them.

It kept part of his mind just occupied enough with the novelty that he made it most of the way through, about 2 words per piece of gum. (He chews till the crunch is gone, then spits it out.) Then I found some magic Smarties that got him the rest of the way.

This is the first time there's been something that had to go back to school that we could focus on with this type of seriousness.

It was great!

Now, I'm not entirely sure he's telling the complete truth about why he was upset; he claims he was raising his hand because he had to go to the bathroom. But rather than second-guess him, I took him at his word and that's how he wrote it. I'll email the teachers to see if we need to talk with him about "revisionist history." That's another matter entirely. Here at home he definitely does try to spin things so he looks better, though I can't remember him fabricating an outright lie. It'll be a shocker for him, but a good lesson, if we all catch him in the act.

Off to a Good Start (I Hope)

2009-09-09T08:34:00.006-04:00

Wow. What a difference it made that Husband got DuckyBoy out of bed. And set the coffee maker to start automatically.

And -- DB dressed himself! Big props for Husband there, he got that going during summer camp so it wasn't new to DB. Do you have any idea how much mental and emotional energy I have left over? I hardly know what to do with myself!

A bit grumpy when he first woke up, but who isn't the first day at 6 am on the first day of a new school year. But as we'd discussed, this way he had time to watch his show that he's hooked on (Transformers); thank goodness it's on at 6 am weekdays so every morning there's a new episode. And thanks goodness for DVR so he can watch it starting at 6:15.

And -- when it was over, he was OK with turning the TV off, at 6:45; he was already dressed, so we could take our time going downstairs and had time to "tell a story," which he loves as a special transition time from me to the bus. Speaking of the bus, it helped reduce his anxiety and mine to know we have the same bus driver from the summer session. "Oh, he was nice!" DB said when we told him.

New backpack, special lunch (a Lunchables Pizza Treatza --he's been looking forward to it for a week now), even some laughter as we all shared some time together.

Oh, and one more new thing -- I got him some of the new Colgate Wisp mini toothbrushes that are single-use disposables. I'm sure they're really meant for keeping in your purse or desk drawer, a supplement instead of a replacement for brushing twice a day, but compared to DB not brushing at all in the morning, which was our usual happening last year, these are 100% better!

Plus, he likes the strong minty flavor. Who knew! I wonder ... that mint flavor may have a beneficial "calming" impact on him as well. Which is good right before he gets on the bus, since story or no story, that transition is a hard part of his day.

Looking Forward to 2nd Grade

2009-09-04T13:08:00.003-04:00

I'm very excited, I'm 99.9 percent sure that DB will have the teachers I was hoping for next year. One of his classmates' moms confirmed it, and she flat-out asked them directly.

We've done so little this summer that he's actually looking forward to school, a little bit -- seeing his friends, at least. And being back in the routine, I think.

Though he'll miss staying in his pjs half the day.

He's definitely more mature than a year ago, I can see a huge difference in his anxiety level as school approaches. Last year he was in a panic for most of August, and this year it's much milder.

It probably helped that the start is late for us -- next Tuesday -- so he got to enjoy his birthday separate from the start of school.

Why I Worry

2009-08-21T07:36:00.004-04:00

Just read a fascinating article about creativity versus group norms. Apropos of Nest program struggles I have, it flat-out states that the norms of a group stifle creativity. It seems that the mere fact of being in a group changes people's responses, and of course the outcome.

I also recently read a quote from Albert Einstein to the effect that "Imagination is more important than knowledge." (BTW, he was a high-school dropout who eventually got his GED 'cause otherwise he couldn't get into the college he wanted. Learned that from a cool book, a bio of his early years, called Odd Boy Out.)

Which is why I'm so concerned that school NOT drum the creativity out of DB. Yes, I want him to have friends, get married even, and be able to function in society. I just want his unique view of the world preserved. Who knows what his 10,000 hours will lead to? (That reminds me, though, I'd better go unstick his eyeballs from the TV. Unless he's destined to be the next Aaron Spelling?! No offense to Mr S but I have higher hopes.)

One last quote I discovered via Eben Pagan's Twitter feed (which is how I found the group norms article also):

"One should respect public opinion
in so far as is necessary to avoid starvation and to keep out of prison,
but anything that goes beyond this
is voluntary submission to an unnecessary tyranny
and is likely to interfere with happiness in all kinds of ways."

-Bertrand Russell

Interestingly, Russell's childhood guardian's favorite Bible verse was: "Thou shalt not follow a multitude to do evil" (Exodus 23:2). (Source: Wikipedia)

Last Day of Camp

2009-08-06T14:15:00.002-04:00

DuckyBoy had, overall, a great time at camp. The teachers did a wonderful job engaging the kids with interesting topics -- the ocean, transportation, dinosaurs, the future (with an environmental focus), and -- get this! -- ancient Greece.

Not bad for early elementary, right? Clearly they get this crowd, get their intelligence and need for sophisticated topics made understandable.

Also I think the fact that the themes were concrete and factual -- as opposed to an overall theme like "the circus," which was cute last summer and enabled those teachers to squeeze in a lot of nice projects, but is less about finding out something new (God forbid I call it "learning"!) and more of a backdrop.

Unfortunately the note I wrote to the teachers this morning didn't come out of DB's backpack -- the paper was orange and so is the backpack -- so, THANK YOU, Teachers!

We had a good bus driver and matron this summer, too. Planets in alignment or something??

And, guess what? DB says the summer teachers have told him they'll be his 2nd grade teachers. That's what I've been hoping for, from hearing about them from another Nest mom and from the brief chance I had to see them at work on Dr. Seuss Day when I read in their classroom. But I'd heard rumors that classrooms and teachers might shift around for this fall --

fingers crossed!

We {Heart} Camp

2009-07-23T22:00:00.004-04:00

Summer camp (at school) is going great for DB. We're 3 weeks in out of 4, and today of all things a note came home from the teachers saying what a great day he had, and how he earned computer time. Wow!

In the car he told us all about dinosaurs, what he learned from a movie today.

Each week has had a theme, and this was expected to be his least favorite: dinosaurs, which followed spae which followed the ocean. But lo and behold, it was sciency enough that he liked it!

I wish regular school could be more like this -- more in-depth about scientific, interesting topics. That's more his speed than "pick something to read, then write about it."

Last Full Day of First Grade

2009-06-25T09:34:00.003-04:00

DuckyBoy is doing great handling the transition from first to second grade. Last year at this time he was a basket case, aggressive and sad and scared.

This year, he's been a little "off" but overall no big slip like we saw last spring.

And, he has a new friend to ease the transition: We're the summer home for Supergirl, the mommy Chinese dwarf hamster from his classroom. We got her yesterday afternoon. He wanted to have her sleep in his room last night, but since the critters are nocturla, she kept running in her wheel so he reluctantly asked me to move her back to the playroom.

When he got up this morning, he immediately moved her habitat from the cabinet to the small table in front of the couch where he sits to watch TV.

And a bit later he said, "A live hamster is more fun to watch than the TV."

And for him, that's saying something!

We --mostly he, with minor assitance from me -- changed her water and had to be stopped from cleaning and misting her habitat! (I had to explain that the mister is for cleaning, not misting her daily like we had to do for the Madagascar hissing cockroaches.)

First Grade: Little Things That Have Helped

2009-06-22T14:41:00.003-04:00

These are some non-IEP things that I'd like to keep track of for next school year. It's the kind of thing that's easily forgotten.

* Having a 1:1 with one of the adults on his team early Monday morning. For a while he met with the social worker, now he has an OT session. While the social work sessions aren't his favorite, since he has to talk about his feelings before he gets to play with the toys, it helped him get emotionally organized for the week. And he loves his OT this year, so having their session to look forward to -- and spending that time with someone really focusing on him and his ideas -- helped him get his week off to a good start.

* At his desk, a written schedule of his pullout sessions. This was a huge help in reducing his outbursts in the classroom when a therapist would come in to take another child and DB would be disappointed that it was not his turn.

* At home, a written list of the "specials" for each day of the week. These were everything from his social-skills pullout and therapy sessions to art, music, and gym. He doesn't look at it every day but on those days when he wants to know, it's really helpful.

* Rubber-bandy thing across the front legs of his chair. I don't know anything about this but have noticed it on his chair. I imagine he fidgets with it and also gets some leg-muscle movement while sitting at his desk. (Hmm, maybe if I do it at home he'll stop rocking back in the chair?)

* Since this year's matron did not allow eating on the bus (which is entirely in her right to do), having the option to eat breakfast in the classroom.

* His "Get Out of Breakfast Free" card so that on the days he eats breakfast at home, he controls whether he eats again.

* Water at his desk all day. Actually I think this IS on his IEP.

* Written directions for how to clean his desk. Plus his "condo" -- a box next to his desk -- that holds all the various flotsam like toys and prizes and important rocks from the playground.

Once second grade begins, I'd like to ask the teachers if a laminated list of how to unpack/pack his backpack might be in order. Most everything gets done most of the time, but I figure each year the teachers do less and less of the packing-up of folders (and less prompting), right? And already this year, I've seen the same 4-6 books come home night after night; he knows he's supposed to bring books from his "book baggie" home, he simply doesn't do that extra thought-step of replacing or removing the ones he's already read.

Vacation vs. Practice: Vacation Wins!

2009-06-11T10:29:00.001-04:00

Monday was a last-minute concert by the first grade. (Whose bright idea was that? Is there no end to the torture?) The idea was to celebrate the end of the year, so there was the short concert and then families and first graders could adjourn to the cafeteria (was supposed to be outside but rain threatened) for snacks.

It was not optional like the evening concert was for DB.

But. We were gone last week. So DB missed the practice. The previous week, when his school team found out we'd be gone, they tried valiantly to convince us he really, really should come to school on Wednesday for the practice, if Grandma and BonePa would bring him, partly for the practice and partly just so he wouldn't miss a whole week of school. We didn't think it seemed so swell to make him come to school for his most-hated thing of all -- concert practice -- even if he was going to be able to stay for the part of the day he likes most, which is recess.

We left it in the hands of the grands. They seemed interested in driving him in, but when the day came, Grandma said, "He cried! I can't take him somewhere that makes him cry!" So they stayed home.

And you know what? He had a great week, and he did great at the concert! He stood as still as any 6-year-old, for all 4 songs. He didn't yell at the camera flashes like he did at the winter concert. He walked offstage once (he was front row, side) but came right back. Turns out the social worker was in the wings in case he needed her; seems as though he tried it out, then was able to return.

Did he sing? Nope. Lip synch? Nope. Do I care? Nope! I'm thrilled he was able to do what he did.

I'm also thrilled that he's taller than the 4 little front-row girls he was standing next to. Next year the team might need a Plan B; for this event, having him stand on the floor (not the riser) worked, but next year he may be too tall. Maybe they can put more kids on that floor-row with him...

Whatever. For now, a big success, hooray!

Playing With Other Kids

2009-06-10T21:24:00.003-04:00

DuckyBoy spent last week at Grandma's on Long Island, visiting lots of playgrounds. While we were on vacation in Cozumel, he was playing with a new kid, or two or three, almost every day.

When we picked him up on Sunday, Grandma proudly told us story after story about how nicely he asked to play with, then played with, the other kids he met. He asked politely, he shared (after day 1, when Grandma had to send him to his room because he wouldn't share... after that, he got it!), he took turns, it was a string of great social successes. With similar-age peers.

That made us feel good!

By contrast:

Today when I picked him up from school, we left the playground almost immediately when he had a meltdown. (That's its own story.) In the car on the way home, I remembered his successes from the previous week and asked him, "Is it easier to play with kids you know or kids you don't know?"

His immediate answer, not surprisingly, was "Kids I don't know." Then he started to spiral down into saying that the kids he knows never let him choose what to play, on and on. Which I know isn't entirely true, so I asked, "Even at recess?"

And he was quiet, so I suggested, "Maybe it's because the kids who are at the playground after school are different than the kids in the yard at recess?"

And he agreed. He does play more with the girls at lunch -- and more often, it's boys who go to the playground on Wednesdays.

There's something there.

It's the same or similar to the reason he didn't want to go to gymnastics anymore -- being with too many kids he knew was one of his main reasons for wanting to quit.

I think kids he knows have expectations of him -- that he'll recognize them, talk to them, remember things about them or previous conversations or experiences they've had. It's a lot of pressure for him to conjure up those memories -- some of which he may truly not have. He's much more interested in whatever is at hand -- the imaginary play, the tumbling, the game.

So, what do I do with this information?

Math Homework

2009-06-10T16:45:00.003-04:00

DuckyBoy was doing his math homework last night with his dad when I heard what sounded like guesses of random numbers: "15? 45? 9?"

Husband said something to the effect of "No, try to figure it out," to which DB replied, "But I'm brainstorming!"

To his credit, Husband simply said, "You can't do that, you have to calculate."

To my credit, I didn't bust out laughing.

Saying Mean Things

2009-05-27T16:52:00.005-04:00

This is more about autism and city life since it's about the playground. It also could be apropos for my blog instead of here since my feelings are in it too.

DB wants to play with other kids but also wants to impose an ever-increasing, and advantageous-to-him, series of rules. Like, halfway through a race, he'll change the finish line ... to be whatever he's closest to.

He also ignores people who speak to him when he has something else on his mind (in favor of the preferred topic), and -- today's topic -- says not-nice things to kids who approach him that he doesn't want to play with.

Another child was trailing him around the playground after school today, not really bothering him, I think occasionally making overtures to play or ask him something. Very nice polite overtures, if I know the other child's style at all.

Now, DB has trouble saying "So What," so of course this is a terrible thing that someone he does not want to play with at the moment is actually trying to interact with him, so he said things like "Go away!" and "Stop following me around!"

When he says these things within range of me, I tell him to knock it off, not say those things, be polite, apologize, suggest nicer things to say. When he does them while careening around the playground on his scooter, I make a mental note to talk to him later, and I do.

Which clearly is having NO effect.

To the point where the mom of this other child was clearly p-o'd with me today, not only suggesting that I speak to DB but also putting me on notice that this is not the first time this has happened.

I thought that last bit was a little uncalled for, since not only did I agree with her and make it clear I'd noticed and did not like DB's behavior but also, well, I'll just say she is someone I thought had some understanding of kids on the spectrum.

I wonder if he's been doing it constantly and just out of earshot? We're only there together twice a week. She probably feels that since it happened a while back and we discussed it civilly then, the problem should be fixed by now.

Hey, I don't know what to tell her. Teach her son to say "Well, f&%#u, a#*2*%!" to DB and walk away? Unfortunately it would go over DB's head. But at least the other kid would have a coping mechanism.

We may have to start leaving the park as soon as he says anything impolite to anybody. I'm embarrassed and angry and hurt, too, so on the one hand I'm prone to go directly to a zero-tolerance policy. On the other hand I'm paralyzed by fear of making a mistake in my own life and I don't want that to happen to DB.

I'm sure as heck not going to go out of my way to pick him up so this can happen.

Twin Day Success

2009-05-22T19:01:00.002-04:00

My subterfuge of putting DB in the same shirt that I know a couple of his classmates also have, seemed to work. DB came home yesterday pleased that his classmate was his twin. "We're friends sometimes now," he said, or something like that.

When I saw them today, that friend tattled a bit on DB, though I try not to take a side since I never quite feel I know the story. "DB called me "Danger," says the classmate. "He always calls me that! You should talk to him!" And, something about how DB and another friend seem to be possessive about a certain tree on the playground, calling it theirs and telling this guy he can't do whatever it is first-graders do around trees.

Whether it's a classmate telling on DB or vice versa, I usually tell them to tell a teacher when it happens. I may be an involved parent but the last thing I want to get involved in is garden-variety playground politics, if I can help it.

Concert Finale

2009-05-21T08:53:00.003-04:00

Yay! The school spring concert was Tuesday and we didn't go. Yay!

On Monday night DB was thinking he might like to attend. I explained that because he wasn't in it, his dad and I had made other plans for Tuesday night (there was a class we wanted to go to).

"Oh. Can we go next year?" was all he wanted to know.

Of course!

That was easy.

Management Issues: Classrooms, Parents, Anxiety

2009-05-21T08:36:00.003-04:00

Just read an interesting post on classroom management techniques. I'm amazed at how well these ideas could work not all ages and across the learning spectrum (pun intended).

And they really are pretty basic. Would love to see them used particularly in Nest middle-school environment, where so many things change about school. In addition to whatever strategies are already working of course; I'm not trying to diss the current 6-8 program, just acknowledge that already the moms of second-graders at our school are starting to worry about middle school!

One of the strategies is to make sure the classroom and principal send the same message. Ideally that should be true for parents as well as the kids, but it's nice for parents to have the principal able to see both sides and mediate when necessary. Of course she (or he) will have a bent toward the teachers, after all that's her team, but I appreciate one who's willing to hear us out. I'd hope that would be true for the kids as well. (I know it is at our school.)

That said, though, I was listening to a conversation yesterday about one of my fellow moms who'd had a situation with her child resolved to her satisfaction by involving the principal. There are a lot of engaged, hands-on parents in this program. At times I try to take a page from their playbook and get more involved in what's being done for DuckyBoy.

But overall I think I'm pretty low-key about it. I ask, I send notes when I think there's something to be dealt with, but try to keep the tone of, this isn't life-or-death.

I feel like DB gets a lot of attention and services and my comments are taken seriously. And I wonder if it's because I don't have to resolve every little thing. There are certainly more things I let slide than I'd like, but after all, I'm not homeschooling and I've got to start letting go a little.

Truth be told, I'm anxious when I don't say anything.

Like today. It's Twin Day -- when kids pick a friend and dress alike. Last year was easy, I made identical T-shirts for DB and his best girlfriend. This year, his two girlfriends had already picked each other. And he didn't like the "triplets" idea --"It's Twin Day," he stressed. So I sent an email; then anyway the first-grade the teachers sent home a note suggesting that, if people didn't have one twin in mind, boys could wear blue shirt and girls, pink. I think that's a nice way to handle it.

DB didn't love it. "Why do the boys get stuck with blue?" But he agreed to wear blue anyway. Unbeknowst to him, I emailed the moms of 2 of his buddies from gymnastics to say he'd be wearing his PGI shirt. So he may have a real twin after all.

He was cranky this morning. My imagination wonders if Twin Day was already on his mind. (He got mad when I mentioned it.) I hope the day goes OK, and I wonder if I could have managed it more.

I'll know later!

In the meantime, I do know he has a caring team of adults nearby.

Concert Practice Update

2009-05-15T23:53:00.005-04:00

So, DuckyBoy did fine -- "happy as a clam," went the report -- sitting in the back of the auditorium reading a book during Wednesday's practice.

"I don't need a heads-up," he told the teacher who gave him the news there would be practice that day. Lucky for him (and me), she loves that he "tells it like it is." What a character he is.

Oh, and Thursday? He had to come home from school because he threw up in the nurse's office. New phrase learned" Projective vomiting"! All the stuffed animals reenacted it for me later.

And, he proceeded to eat his way through the rest of the day and evening, and has had no further gastrointestinal problems. Despite what Husband thinks about my nursing DB for so long (18 months), I attribute his strong stomach to it. At least 50%. (The other 50% I attribute to family history. Mine. Shh.)

Special Ed Parents as Squeaky Wheels

2009-05-13T08:44:00.007-04:00

This morning I emailed DuckyBoy's team right after he got on the bus. This is an excerpt:

Subj: Concert Practice

Good morning everyone!
I'm sending this just in case anyone reads this before practice -- FYI, [DB] did not get any "warning" that there is practice today.

He barely got up and ready and on the bus by my focusing on all the positives of today (they were: a [speech therapist] session, enrichment cluster, nuggets for lunch, the new gummies packed in his lunch, and Family Fitness night ...); I thought he'd give up completely if I mentioned music.

Sending that made me feel like a squeaky wheel -- something I never think of myself as. But letting them know this puts my son in thier mind, lets them know where his head is at. (Although, as they all know, he could be completely fine by the time he gets to school.)

DuckyBoy himself is also a squeaky wheel. While it's sometimes frustrating to have the kid who talks, talks, talks nonstop, most of the time I'm grateful he is willing to share what he is thinking and feeling, so we know how to help.

It made me think of one of his classmates, one of the quiet ones. And his mom is quiet as well. She has told me that every morning is rough for her son -- so, probably like this morning was for us. I imagine her cajoling him out of bed, and nudging him through what has to be done and down to the bus.

I wonder -- does the school team know that mornings are rough for him? Because maybe knowing that might help them help him.

And I now know we have a better team by far than many schools. Some parents have to be squeaky wheels just to get their children the basic services they need to overcome a delay or learning issue. It's tiring for me -- has to be exhausting for them.

One of the Lucky Ones

2009-05-12T14:35:00.004-04:00

Last night I attended a little-publicized, hastily-called meeting designed for parents to have the chance to talk with the NYC Board of Ed's new Senior Coordinator for Special Education, Garth Harries. First he said he was asked by the Chancellor (and Vice Chancellor! he stressed that several times) to take on the role.

He offered reassurance that his role was not to look for budget cuts but, and I thought this was clever wording, to streamline and condense where practical. (Those might not have been his exact words but that's the gist of it.)

Best quote from his introduction: "A kid getting good services is magical, but it's not magic."

Then he let everyone talk. And wow, was that eye-opening. Parents in da Bronx got issues! Parents with IEPs citywide got issues! Teachers completely ignorant of not only what a certain diagnosis means-- sometimes ignorant of the very fact that a certain child has an IEP.

Given the time and effort I put into DB's IEP, I can't even imagine.

Lest my occasional rants here lead you to think otherwise, I'm so grateful for the Nest program, DuckyBoy's school, and the many trained, caring adults who surround my child daily and want him to succeed.

I was glad to have the chance to defend the program when a very bitter woman tried to paint it as a broken failure ("Kids get kicked out left and right!"). Another Nest mom replied first with a positive comment and I seconded it later, adding it is a program worth keeping AND replicating.

I feel for the woman who spoke -- she has a high-functioning child but (if I pieced it together right), because he needs a para, was told he is not appropriate for Nest. But it was clear when I spoke to her after the meeting that there was nothing I could say to convince her the program is a success. ("Look at how Long Island does it! The whole country does it better!" Uh, okay.)

Otherwise, almost every other parent was reasonable, if frustrated.

It seemed to me that Harries is making a comparative, prioritizable list of what types of issues come up around the city. So since other people mentioned teacher training, para training, IEPs, promotion, transition issues (which is more for the high-school level), all I said was: BUSING.

We were each given index cards to write issues on, so on it I elaborated: Bus quality, language gaps, accessibility (cell phone etc), length of routes, sensory and emotional issues. Someone else said driver and matron training regarding special ed kids. Amen to that!

I also wrote:

Earlier approval for summer programs
Continued funding for the additional adult support in our program
Teaching additional school personnel (lunch ladies, security guard, librarian, etc.) strategies for speaking to our kids
More training for teachers on writing IEPs

Someone asked if there was anyone who could help her write her IEP goals. At least they didn't laugh at her, but the answer is, Of course not. Not in the school system -- it's their job to give you as little as they can get away with! I'm sure the people who rushed that mom after the meeting told her as much, and gave her contact info for groups like Advocates for Children.

What the officials did let slip was that there are people called "IEP specialists" who are supposed to help the teachers learn to write IEPs. There are like 6 per boro, according to John Mulligan from the Manhattan ISC, and principals can have them come to do staff training. I've been lucky that each year so far there's been at least one someone on DB's team who drafts appropriate goals. But it was clear this year that the classroom teachers did the least; maybe an in-service for them could be arranged.

In the end, the meeting certainly put my concern about art at DB's school next year into perspective. Not that I don't want to advocate for it, but it's certainly going to be far down on the list of priorities of special-ed issues that need DOE attention and funding. It's clearly only something for the school level, not to be raised any higher.

Breakfast: It's All About Control

2009-05-12T09:36:00.006-04:00

I just ran across an old post about breakfast and realized I've not posted how DuckyBoy's breakfast-at-school issue has resolved itself.

First of all, the caring attention of his speech therapist has gone a long way. I think she was instrumental in his being allowed to eat breakfast in the classroom, and also it's part of his IEP now so we've got a leg up for next year. We're lucky to have her on our team! (I attended a citywide meeting for parents of special-ed kids last night that makes me feel the need to post about how lucky we are in general, but that's coming soon.)

A few weeks ago, DB started to get up in time to want something to eat (and with time to eat it) before he had to get dressed and go wait for the bus. (Clarification: Before I dress him. For those who wonder.)

Since leaving the dairy-free diet behind at the beginning of the year, he's become hooked on Eggo mini waffles; they are pretty addictive. (I'm delighted that this week he agreed to try, and he likes, the French-toast version. Any food variety is a success in my book.)

But I know him. He'll get to school and be hungry again. Wait, maybe that's me. I used to eat breakfast and then, after my subway ride, get a coffee and donut from the coffee cart guy on the way into the office building. But anyway. If he's used to eating when he gets to school, his body will send those habit-hunger cues, at least sometimes.

Ah, sometimes. That's where it gets hard. When he'd eat at home, and I'd pack a little something just in case, he'd complain the teachers made him eat it. If I didn't pack, they'd say he was hungry.

I finally printed up a set of "Get Out Of Breafast Free" cards. Just a sheet of paper and cut them apart. They also say, "DB ate breakfast at home this morning!" and have my name.

Now I pack a school-appropriate breakfast (has to be dry and not crumbly) no matter what, and if he eats breakfast at home, I slip one of those papers in (I write in the date as well.)

I have not heard a word about breakfast since. I think giving DB the control, the choice, made all the difference.

Some days the extra breakfast comes home, some days not. I don't even know if he's ever shown any of the cards to his teachers! Doesn't matter. The issue is solved.

If you want me to scan one of the cards, leave a comment and I'll be happy to. Maybe I can even get Husband to upload the whole Word doc as a PDF; all I did was print them on colorful paper, then cut 'em apart.

He CAN Do It!

2009-05-08T22:57:00.002-04:00

I'm so proud I don't know which blog to post this on. DuckyBoy went a whole week without a "strike," meaning his behavior never got to the point where a consequence was required.

And for that, he earned a new Cars movie car! He knew he was working for it all week -- after each day went by, I could tell he really felt the effort and knew if he messed up the next day, he'd lose all he had worked for so far. This was the first time for his awareness of something like this.

He really earned it -- sounded like it was a bit of a tough week. Two concert practices and who-knows what else.

Way to go, DB!

Spring Concert: The Decision Is His

2009-05-07T17:17:00.006-04:00

Thank goodness no one is pushing DB to participate in the spring concert. They exposed him to the opportunity, encouraged him when he decided he wanted to "be part of the group," but are not making life difficult for him now that he seems to have changed his mind.

Clearly his team remembered what I said after the winter concert fiasco. Which really was not so much of a "fiasco" per se, as in it didn't disrupt the concert (much) or bother anyone other than me, really, but it was upsetting to me. And, clearly uncomfortable for DB.

Yesterday at the first practice he stuck it out for 2 songs, then sat out the rest. Today he chose to sit out.

As long as we make it clear that he can't change his mind again and rejoin the group after he's missed any more practices, I think he'll be perfectly fine. He rarely, if ever, changes his mind once he's made a decision about something.

As the social worker said to me,"Maybe next year." And if not, that'll be okay too.

Homework Stumper: "Long O Sound"

2009-05-07T17:11:00.013-04:00

This was one of last night's homework sheets. The idea is to write the words that have the long "O" sound. (The checkmark just means the teacher checked that the page was done.)

Take a closer look at number 7:

Yes, of course it's a kite.

But the smart kids are looking for how it might fit the pattern, right? So DB thought of both "kite" and "bolt."

I encouraged him to write "bolt," since it fit the pattern, but not surprisingly, he chose the option that required less writing. And in fact on the scan I can see the outline of the word "kite" that I can't see on the sheet. (At our school they block out the partial words so the kids have to think of and write out each word, not just fill in and trace. Causes some brief confusion for DB when we read the directions that say "Then trace...,"but it's not a big deal.)

Certainly I know this isn't the fault of the school, but rather, the publishing company. We see that they reuse artwork regularly. (There's another drawing of a coat that looks a lot like a robe. It fools DB every time.)

It would've been interesting to see what they did if he wrote "bolt." Since it is, after all, only first-grade homework, probably either answer would have been okay. I just hope the tests have less ambiguity as the grades advance.

The Squirmy Model

2009-05-07T16:28:00.003-04:00

This isn't exactly about school but it's the real story (honest!) about where babies come from ... one of them anyway.

My husband and I told this story to DuckyBoy a few weeks or so for the first time, and he's asked for it repeatedly since then.

After all, who doesn't want to know the story of where they came from?!

DB also asked me to put something new on his blog "this weekend," so in case I don't get the chance I did it today.

Is Mediocrity the New Definition of Success?

2009-05-04T16:29:00.005-04:00

Today we got the next edition of our Nest program newsletter that updates us on the current "SDI Unit," in other words, what they do when they separate the Nest kids in each class and work with them, as a group, on interacting with one another and with several teachers (one runs it and several others take turns rotating through the group).

"SDI" stands for Social Development Intervention. The title of this unit is "Peer Interactions."

So far, so good. I like most of what I read in the newsletter. I read bout how they encourage and model thiking about others. I read about how they assign roles and work as a group. I read about how they work on flexibilty and cooperation in teamwork, and the work of agreeming on a single solution to a problem.

Then I get to this sentence: "Even when a solution doesn't work, it is 'good enough' because they worked as a team."

Um, No-o! Doesn't that just sum up the mediocrity that runs rampant in not only NYC schools but also government in general? (Oh, and Congregationalism at its worst, but that's another story.)

"It doesn't matter if anyone learns anything with this curriculum, because the whole education committee agreed on it!"

"It doesn't matter if we make any money at this because we all agreed to do it!" Yeah, that's good business sense.

Teamwork, yes. Having to go with the team's decision over your own, yes, sometimes it has to be done. I have no interest in anyone teaching my son that failure is OK simply because a decision was made as a group!

Which Arts Appeal Most to Aspies?

2009-04-29T11:47:00.003-04:00

My son's school may have a dilemma next year. The art room is being eliminated due to space needs (the room is going to become a regular classroom), but I think the idea is that Art will become an itinerant subject, traveling to each classroom. The beloved art teacher is retiring -- I think in part because she doesn't feel she can do her job properly traveling from class to class. (And, this is my guess but, since she's older, she probably doesn't care much for the idea of carrying cartons of Craypas upstairs and down.)

The librarian already has to do this sometimes, because the library is often the only available meeting space for folks from the district and so on.

But, with more budget cuts likely in store for all NYC public schools, and especially for small, already-doing-well, outlying schools like ours that cutting their funding won't cause an uproar, the arts may be in jeopardy.

The school still has a full-time music teacher.

But DuckyBoy struggles with music class. NOT his favorite. The winter concert was not a successful arts learning experience for him (or me).

What if it's the only art left next year?

Several other Nest parents audibly groaned at the PTA meeting when the art teacher's retirement was announced.

I'd love to know if anyone has opinions or a line on any research indicating arts preferences among people with autism slash Aspergers. Maybe if we can point to a reason why our kids need the visual arts, we can keep it.

I do know that a number of other kids with DB's dx in his grade have a real heart from drawing.

Anxiety Dreams

2009-04-26T19:20:00.003-04:00

This doesn't really have to do with school specifically but it does have to do with the fact that DuckyBoy has special needs.

The other night I had a dream that was 2 parts, seemingly separate but felt the same after I woke up. In Part 1, I was driving down the road with I think Husband and having a good time, feeling carefree. There was more to it but that was the end of Part 1, and then Part 2 began:

Suddenly we drove past a small body lying by the side of the road, facedown,wearing a pale blue shirt.

We screeched to a stop and it was our son. He was still alive but just barely, having been (I assume) hit by a vehicle. I said something about our having let him walk somewhere/ go somewhere on his own, as I cradled his head in my arms... and then I woke up in a fright.

That dream was a few days ago and I've just now calmed down enough to think of it again and be able to write it down. I also found this note by my bedside, obviously another recent dream, I think this one had something to do with his being smashed between the door and the inside shelving of a refrigerator and my being unable to reach him to help him:

"Afraid if I take my focus off him he'll be shut up in the dark, enclosed, confused, possibly can't breathe."

These are coming at the time when I am trying to dedicate a good number of hours while DB is at school to thinking of other things, and even last week when he was off school on Spring Break I spent more than 2 days working.

Mind you, he was otherwise occupied quite satisfactorily --2 days at Grandma's and 1/2 with a real live sitter, so it's not like my anxiety about him watching too much TV was kicking in. And the last 2 weekdays of Spring Break, DB and I spent having a great time at the Bronx Zoo.

But what am I to make of dreams like these? They clearly show how conflicted I am about turning my attention away from him. But what do I do?

Organized Desk Success Story

2009-04-07T07:59:00.005-04:00

I have a happy update on the Desk Inspection issue:

Yesterday during DuckyBoy's session with the occupational therapist (one of the people I'd emailed about the desk issue), they talked about what a clean desk would mean and planned how he might get -- and keep -- one.

What a success, with a simple plan! Here's why I think it worked for him:

1. They talked one on one, in another room so it was not not a stressful (or distracting) do-it-as-we-go-along type of thing.

2. She wrote notes on what he said (since writing is a stressor for him and she wanted him to focus on the topic this time; she makes him write plenty!) and he drew a picture of how the organized desk would look (so she did make him visually, viscerally, commit to the idea).

3. She emailed me and he told me about it almost right off the bus, which is always an indication of when something was really good (or bad, but in this case good). That helped me ask questions -- I let him bring up the subject, because from her description of how excited he was I knew he would. I was glad he brought it up shortly after arriving home, as it would have been hard to wait. He talks much more when he starts a topic. I just need the info for followup questions.

4. The OT sent home a copy of their notes/drawing, and when I read it over DB asked me to read it to him again -- always a sign he's processing and pleased with something. Again, this just helped me reinforce. I also had emailed her to ask for it so we have something to refer back to next year -- and at home as well. I can only imagine a second-graders desk requires even more complex organization.

5. She took his personality/quirks into account. His desk now has a "dog leaf condo" cantilevered off one side for the little toys he takes to school (I wonder if he'll keep it limited to dogs -- that happened to be who he took yesterday: "E. always brings her 2 Juliets" (Hotel for Dogs toys from McDonalds) so he had to take 2 Henrys. (Alas, we don't have 2 Romeos.)

The "leaf" part is because DB has a "pet leaf" from the playground. he told me that was in his desk some time ago, maybe even in the fall. But apparently it's hanging in there, and needed a space as well.

6. He also made/decorated a special folder for the papers he keeps in his desk; I don't know what the papers are but he's like me, never wants tothrow anything away. So rather than force him to learn to choose which to keep, just organize them! Brilliant. (And again, he's committed to the folder via having decorated it.)

These are little things, subtle things, but make a big difference. I'm so pleased that we have people like this OT on his team.

He said this morning "If I put everything in its right place, I won't ever have to clean my desk again!"

I feel 2 ways about that -- pleased he's seeing the value of staying organized right from the start, yet worried that if he slips up he'll see it as a disaster.

The comment happened right after we told today's dog condo guest -- Friday from Hotel for Dogs -- how different DB's desk will look from the last time Friday went to school. Friday was very hesitant to sign on, claiming he'd get lost in DB's desk.

We took great pains to reassure him otherwise. And that reminded DB that he "donated a lot of pencils" from his desk to the table basket, a common bucket where they keep the supplies they all use.

He further explained, "I have a habit of, when I use a pencil and I'm done with it, I put it in my desk." I commented that during future desk inspections, that would be something he could check for and put any stray pencils back in the table basket at that time.

His literal mind responded, "No, she [the teacher] doesn't check for pencils."

So, I emailed the OT --first full of profuse thanks!! -- to suggest a followup session on what he might check for during inspections so as to keep his desk neat.

Not that I don't think he's capable of putting things in their proper place from the outset -- I just don't want him to think less than 100 percent success is failure.

Which probably speaks more to my own paralyzing fear-of-failure issue, coupled with my experience with Husband's "You ruined everything!" attitude toward mistakes, than it does to anything about our son.

Hopefully DuckyBoy will do just fine!

Social Skills Classes

2009-04-02T13:11:00.003-04:00

How frustrating is it that the classes that are supposed to help are sometimes the least helpful?
Kari had a recent post where she mentioned that a social skills camp for her son may have had some positive impact, but she wonders whether it had negative consquences as well.

DuckyBoy's social skills class in school, which he has 3 times a week, consists of the 4 Nest kids from his classroom, the speech therapist who runs it, and the classroom teachers. I wonder about the wisdom of making the kids with poor social skills practice interacting with one another, but it's a very structured setting so there is at least some value.

The kids and teachers brainstormed names at the beginning of the year, and while the boys voted for "7 Penguins" apparently the teachers voted for "Funapallooza" and won.
Whether they liked it or thought it would make the boys like the group better is unclear.

Nevertheless, DB has complained about this class periodically, even though I get photos of him during the sessions, with a smile on his face. He sometimes calls it "Boringapallooza" and the teachers know it. Yet, yesterday he had a big win during a session (I must add, with one of the adults not another kid), offering to share a colored folder because he knew the teacher liked that color.

I heard from him yesterday that he gets along with one of the other Nest kids now, so I wonder if that happened during or due to Funapallooza.

They've had a whole conversation about Transformers, apparently. Overall, this is good.

But what makes me wonder is that DB tells me that the gist of the conversation is that the other boy offered to give DB all his Transformers, saying he doesn't play with them any more. Hmm.

So, this feeds DB's misconception that people will just give him things.

And, on the flip side, the other boy may not realize that personal/family possessions aren't to be given away; don't you think his parents might want some say into whether he gives away several hundred dollars worth of plastic?

Have you had a good or poor experience with a social skills class? I'd love hear about it, leave a comment here.

The Sound of Complaining in the Morning

2009-04-01T22:08:00.008-04:00

DB tends to complain about any little thing in the mornings, school mornings. Sometimes he's just grumpy when he wakes up, but other times something comes out he's actually anxious about. And if I can listen, I can actually help with something.

For example, once a week the physical therapist at school was counting how many times DB blurted out the answers in class instead of raising his hand. One Wednesday morning, he read over the schedule of what "special" sessions he had that day, and the PT was on the list.

Usually, he loves his sessions with her, but that day he was upset to see her name on the schedule. When I asked why, he explained, "On Wednesday she sits in the classroom and counts my blurts."

Obviously, he'd become really self-conscious about it. And obviously, he hadn't communicated that to her, because I know she'd have stopped if she knew how he felt.

After he got on the bus I emailed her, and that very day she talked with him about the reason behind it, reassured him, and also stopped doing it.

I got to thinking about this after I read Karianna's post on her son's most recent social stumble, and how difficult it is to unpack the feelings around social issues -- both ours and our childrens'.

She made me think how lucky I am that DB is often (eventually) able to articulate (in a roundabout way) what bothers him about a methodology. Often, this comes out early in the morning.

This morning, in fact, something else came up: The Desk Inspection Issue.

DB's classroom consists of desks with space to shove stuff into.

He mentioned this morning (the topic came from nowhere, by the way) that his "desk is never clean" for desk inspection. I know it's jammed full of papers and such, and I know he seems to have no clue what to do about it.

In fact a couple of weeks ago, I mentioned his messy desk to the teachers at parent-teacher conference, thinking and suggesting that perhaps he could use some guidance about what to do. In fact, I know I said out loud that he does not know what to do and could use some help.

I was thinking (and I suggested) a written list of steps to help him. That could help the whole class, right? And how hard is this?

But, their response has apparently been to have been at least 2 "desk inspections" since then, but clearly that's not helping him learn what to do. Now, it's totally possible that they verbally give directions.

But something did not click for DB. This morning he said things like "the teacher just looks at it" and "No teachers are allowed to help you!" (when I suggested that [the physical therapist] might be able to help him figure out what to do).

I also tried to talk to him about the steps for sorting papers, etc., and he anxiously said, "You just have to throw it all out!"

Now, DB doesn't like to throw ANYTHING out :) so that'd be anxiety provoking right there, coupled with the fact that I don't think he literally knows what to do first.

By that point (7:15 am), I needed to calm him down so he can get on the bus. So I told him there are a couple of things we can do, and I also explained to him that sometimes grownups don't realize what kids don't know how to do, and made an example of "What if I said to you, 'DB, go do the dishes.' I know how to do it but you don't. There are a lot of little steps I don't even think of, that you just don't know yet."

That seemed to make sense to him. God bless him, he really does listen to me sometimes.

So, right after he got on the buss I emailed the physical therapist this morning, and I've already heard back from her that she'll be on it when she can.

And, I'll continue to try to keep an open mind to the morning complaints.

Does Your Child Know His/Her Dx?

2009-03-30T08:50:00.003-04:00

Had an interesting conversation the other day about what to tell a child and when about his (or her) diagnosis. particularly with our high-functioning PDD/Asperger's kids, since they overhear so much and figure out so much and know when something's not like everything else.

I know people on both ends of the argument -- one person whose child has been sheltered to the point where he has no idea he's any different from anyone else, and another whose child attends his IEP meetings.

I am somewhere in the middle. When DB asks why he attends the school he's at instead of the one closest to our home, I simply tell him he's at the school that's best for him and the way he learns. When he wanted to know why his dad and I would be at school last week, I told him it was for his IEP meeting, and explained it's to help plan how school will best help him learn next year.

All of which is true.

He tends to use excuses a lot, so I feel if I told him his diagnosis he might say, "Oh, but I have PDD" to excuse his misbehavior.

I'm not opposed to him knowing about the autism spectrum, but I have this idea that one day he'll read about it and go, "Oh, I'm like that" and own it himself instead of my putting it on him.

If there comes a time when he can't understand why everyone else thinks so differently, I might tell him about his diagnosis as a way to reassure him that #1, he's not the only one and #2, there are so many people in his life who want to help him.

I also have it easier in one sense that he is the only kid in the household, so there are no other children to notice or ask about any differences.

Board Games - Finally!

2009-03-28T12:46:00.004-04:00

I have been waiting for this for years: DuckyBoy is finally into board games and card games!

What a pleasure it is to be able to play a structured game with him and have us both enjoy it. It's a relief as well, since often our play consists of me entertaining him by making his toys do what he directs me to make them do.

I don't know what changed -- maybe being able to focus his attention longer, be able to read, or what. But we now enjoy Uno (without the +2 and +4 cards and without the Switch Direction cards since usually just 2 of us play), and he also initiates Candyland (which we've had for a couple of years), one of his Thomas games, Tonka Crazy Eights, and today even our Down on the Farm game.

We play the card games with all our cards on the table, which changes it in terms of strategy but is still fun. It's easier to make the game go in a direction to help him win -- but, since it's a card game, I can't really rig it, so he still has to deal with that sometimes-I-don't-win thing.

We even had a stuffed animal join in the farm game this morning, and DB and I shared the responsibility for helping that groundhog play. (I love that kind of stuff!)

He got the Littlest Pet Shop board game last year for Christmas (thanks, sis!) and since it's quite simple, he started enjoying that first.

Hyperlexia

2009-03-24T08:12:00.001-04:00

Every hear of hyperlexia? I hadn't until Sandy mentioned it in a recent post.

The symptoms sound a lot like our experience with PDD.

Sandy says it's a recently developed diagnosis, still being figured out where it fits -- is it a subgroup of PDD? Is it its own category?

Even if DB doesn't quite have either Aspergers or hyperlexia, it's good to know there's another possible diagnosis out there to get kids out of the catch-all bucket that PDD is.

The Breakfast at School Story

2009-03-11T09:15:00.002-04:00

The whole topic of breakfast is frustrating for DuckyBoy. Based on talking with him this morning, here's what happens:

* He isn't hungry when he first gets up (most days).

* After the bus arrives in front of school, the kids sits on the bus for 5 minutes (or so?) waiting for someone to escort them into the building. But he's not allowed to eat on the bus. (This year, anyway.)

* Once in the cafeteria I presume he smells the breakfast and that makes him hungry. He says that the teachers arrive to get him "in 10 seconds" so he doesn't have time to eat the hot breakfast. He can't take the cafeteria breakfast to his class with him. I figure that's a standard school rule, which make sense otherwise there'd be cafeteria food all over the building all day long, but that type of best-for-all rule is difficult for him to understand.

On Friday when I went to the cafeteria with him, I noticed it took him several trips to the food window to have what he needed to be able to sit and eat:

First he got the food tray, sat down.
Went back for milk/juice, sat down.
Went for a straw, sat down.
Went back for a napkin.

It took a lot of mental and physical effort for him to be ready to sit and eat; it's entirely possible that by the time he's ready to take a bite, even if he's been in the cafeteria 5 minutes, the teachers come for him "10 seconds" after he takes one bite.

That's a brain-function organizational issue, right? Typical for his diagnosis? It's so early in the day that the teachers and therapists aren't required to be there yet. But if someone walk him through getting everything at once, a couple of times might be all it takes.

Maybe it could even be done for pretend, at any time of day.

Or if he already has a tray, couldn't he be given 2 minutes to eat it? Even one minute? He's become quite good at shoving his food into his mouth based on the lunchtime routine.

Anyway, to continue with the typical morning:

* In the classroom he's left with the choice of eating whatever I packed, which I imagine pales by comparison to whatever smelled so good downstairs; he mentioned the pancakes specifically. Plus by that point he's so frustrated he may not even really have an appetite anymore.

As another factor, he may not tell me when he's bored with something; he may just want variety -- but on the flip side, change upsets him, so how would I know? I can brainstorm what else I could pack him for breakfast, but he's so emotional about it, I'm not sure I'll get a valid answer.

*Sigh.*

I emailed all this to the school social worker this morning. I feel kind of bad about it, like it's tempest in a teapot. But it seems like it is adding unnecessary stress to the very beginning of his day. Every day.

DuckyBoys-isms

2009-03-10T07:40:00.004-04:00

Yesterday morning in the cafeteria, I heard DB ask as he approached the counter, "Got any Pajama Day specials?"

Where does he get this stuff? There's so much wrapped up in that: optimism, connection to the events of the day, making a connection with the ladies behind the counter... at 6 and a half! He's so much less afraid of talking to people than I was, I like that. (And I like that he makes his principal laugh.)

This morning he was unhappy when I broke the news to him that his breakfast is slightly different than usual. Usually I pack him a piece of bread and butter. Same kind of bread each day, Italian, no seeds. Today I noticed the roll he'd selected the other day at the store and buttered just half of that.

I was torn as to whether or not to give him a heads-up; as I hate the thought that my actions could have negative repercussions at school, I erred on the side of mentioning it. I'd prefer he flip his lid with me and then accept the situation better at school. I deliberately chose to do so at the last minute when it couldn't be changed.

"I don't want it," he cried/whined, "My teachers told me if I don't eat my breakfast they're going to write you a big, fat, note."

Now, do you really think the teachers threatened to write a "big, fat note?" I don't.

I told him to tell them to go ahead and write it, and calmly reassured him we'll work things out if I do get such a report.

Poor guy! What I think is this: I think he wasn't hungry yet (7:15 am), and couldn't imagine being hungry and so was worried about not eating it. Hopefully, by the time he's at school and breakfast is even an issue (8:15), things will be fine.

I wonder what they said that he translated as "big, fat note." It's a pretty funny choice of phrasing.

Hooray for Dr Seuss

2009-03-09T12:59:00.003-04:00

Today is Dr Seuss day at DB's school. It's only scheduled for the morning but since we took a cab here at a cost of $35 I'm here for the day (yes! posting at school, a first!) so I've run into him a couple of other times. So far he's handling it much better than last year, I couldn't have even considered being around this long last year.

I read to his class first, then to a 2nd grade class and two 5th grade classes. They were all so into it. I read My Many Colored Days, which appeals to all grades, and also Ten Apples Up on Top. This year I knew I could bring my own Seuss books from home, so I picked ones I thought would have upper-grade appeal.

And guess what, I was right! Everyone loved the Ten Apples story; there's one-up-man-ship, cameraderie, and an enemy to escape from. I even got to teach the 5th graders the word "segue," since the previous reader also read a story with non-Dr-Seuss illustrations and she'd commented on that --which made a perfect segue to My Many Colored Days.

I'm happy they enjoyed what I selected.

I'm not sure where I'm going with this post but I'm not scared of being around kids in schools like I used to ... and my friend is suggesting a master's in teaching as a possibility for me... so I guess it's something I c-o-u-l-d consider...

I'm Featured on the Soft Clothing Blog!

2009-02-26T15:51:00.003-05:00

Check it out, I'm featured on the Soft clothing blog!

I love the idea for this kids clothing line and can hardly wait for it to go live. In the meantime the proprietors are expanding their online service to the autism and sensory-sensitivity community by profiling bloggers on the subject. And so there I am. Thanks for the nod!

The Word Plane

2009-02-24T14:30:00.003-05:00

Last night we found another way to incorporate play into homework time.

Each week DB gets 6 "Words of the Week" which I originally thought they only need to recognize and know, but as it turns out they are expected to spell them by Friday as well. (If he ever brought home his yellow-dote notebook I'd have known that before December!!)

Anyway, one night each week, part of the homework assignment is to put those 6 words into alphabetical order and then write them down.

For the past couple of weeks I've been incorporating whatever we've been playing with to help us sort the words -- one week each word got taped to a Thomas train, another week the little Care Bears held them.

Last night we used Fisher-Price Little People. First of all I can't tell you how happy I am to once again be getting some use out of the Little People -- they've been tucked away at the edges of DB's room for months now and he just rediscovered them on Sunday, and he's enchanted. Moreso than ever in the past, he's really making up scenarios, and he's playing with the people even more than the animals. And I was afraid he'd outgrown them! (Now I just worry someone will make fun of him for taking them to school. So far this week, it's been fine.)

So. For each row of his phonics worksheet he did last night, he got to choose another Little Person to sit on his desk with him. They were carefully arranged all around the desk by the time he was done. And then I had him pick 6 -- which involved a little bit of sneaky subtraction practice for him, shh -- to hold the words of the week. After they'd been alphabetized (via a whole game-show process he made up involving a "Bonus Duck!" that switched them around one by one) he asked me to remove the words and put them on the Little People airplane; he then ejected each person from the desktop.

So then we had all the people visit the Word Plane. "At school we have a word wall but the other classes have a word bank," he told me. "I wish my class had a word bank instead of a wall."

After I tried to figure out how putting the words into a piggybank would help the kids refer back to them, he clarified for me that it's a piggybank shape on the wall.

But a 3D plane was even better! He even joined me in having the people USE the words in sentences --sometimes he calls me out for making things too teachy. That must have felt natural enough.

I love that when we can involve play, he's much more open to the learning, and also more talkative about both the facts and his feelings about school.

Typing Troubles

2009-02-21T22:23:00.000-05:00

The typing program DB's school uses is difficult for an easily-distractable child like DB. But I think part of the problem may be with the keyboard "skin" that covers the letters so the kids won't cheat by looking at the letters as they type.

Honestly, I think I'd have had trouble learning with that skin on my keyboard.

The teacher says DB is at the bottom of his class -- barely at grade level -- and he needs him to pay attention for 5 minutes to get through the timed test at the end of th year.

We got through 3 minutes today -- but only after I experimented with leaving the skin off. He looked at his fingers a few times -- but honestly, for a 6-year-old, I was surprised by how LITTLE he looked.

That tells me that the skin HAS helped him learn the keyboard positions -- but also makes me wonder if this isn't an area where he needs an accommodation, like maybe he can do the test without the skin?

I hate to ask for an accommodation if it's not really needed. DB's being able to type would be huge, as he complains about writing even 5- and 6-letter words ... though his mind thinks in longer words than that. If all that's hindering him is the keyboard cover, it seems an easy fix.

But would it perhaps work if we simply practice at home with and without the skin, and he continues to use it in class as everyone else does?

I just don't know.

I like this teacher, and clearly he has chosen the program that works best for the majority of students. But, as usual, DB is the exception.

Understanding Feelings

2009-02-11T21:21:00.003-05:00

The SDI unti current/upcoming is on feelings. Coincidentally (I think), one of the homework sheets from yesterday was something like "My Feelings." It was like this:
I was scared when _____________.
I was disappointed when ____________.
I was embarrassed when _____________.
I felt important when______________.
Then there was a box for further visual/written elaboration on a time they felt important.

DB read the page and said, "I don't feel any of these."

I don't totally believe him, and suggested a couple of things he could write down, but he got agitated and well, does that seem worth it as a first-grade writing assignment?

So I had him write "I don't feel any of these" on the back and called it a night.

Who green-lighted that as a typical first-grade homework assignment? That's a lot of cognitive and emotional thought: Think of several situations and associate a feeling with them. And, even though they almost all are negative memories, write them down! And turn them in for potential viewing by classmates!

DB was quite concerned over possible ridicule. I can't say I blame him.

Fostering Classroom Communication

2009-02-11T20:28:00.009-05:00

I see an elephant in the Nest program room that no one is mentioning. And that's us -- the parents. Either we have unrealistic expectations of our classroom teachers, or some of them are not living up to their end of the bargain. In which case we make pests of ourselves.

There's a lot of talk about school-home partnership, and there IS plenty of communication that takes place, two-way, within the broader context of the Nest program, but it's NOT based in the classroom.

And that's frustrating. Because after all, even with SDI and speech and OT pullouts and what-all, the kids spend the bulk of their 35 school hours each week with their 2 classroom teachers (and they take turns participating in SDI with them as well).

Shouldn't they, or one of them, be the repository of information on our child for the year? At least be somewhat of an expert on him or her and their state of mind, state of being, their progress and lack thereof? Shouldn't they be the FIRST person we go to with questions about those issues? And not just academics?

Or am I way off base? I know the idea is that it is a "typical classroom." But if my child could succeed in a 100% typical classroom, he'd be in one. It's that simple.

I thought the idea was that this program simulates a typical classroom, with the addition of whatever prompts the Nest kids need to succeed in that type of setting, including smaller class size and an additional instructor. And including not just physical assists, but adaptations in teaching style by those teachers as well.

I feel like a strained effort is being made to make DB's classroom As.Typical.As.Possible. Why am I going out of my way to send him out of district, again? (I love all the additional supports he gets, the therapist push-ins and pull-outs. But why is the classroom so emotionally cold?)

Anyway. We parents have expectations that are unaddressed. An impromptu chat with a few other Nest moms the other day brought up ideas like this:

* At pickup time: Tell us about a small moment (we gave in to some sarcasm here, as one of the writing units for the kids is "small moments"-- to tell in detail about a small incident). Something small that happened that was nevertheless "big" for MY child -- she told a joke, he tried the school lunch that day. Something that lets us know you get our child's struggles and issues.

Not all of us pick up our child every day; because we all live beyond walking zone of this school, some of us never do. If there's something you'd like to tell us, two things:

1. If I do pick my child up a couple of days each week consistently: Don't save it until the day I pick him up, write to me!

Sometimes I wonder if I get short-changed because I pick DuckyBoy up twice a week. if something happens on, say, Tuesday, they know they will see me on Wednesday, so they don't bother to write. But there's really only a few moments at pickup time, and probably something else happens with another child on Wednesday and they need to speak to that parent, so nothing gets said to me.

2. If I almost never pick him up: write to me!

* In the notebook: If there is a significant moment, please tell us. It means so much to us to hear of any progress. Also, (and I can't strews this enough) it's very possible we will never hear about it from our child unless we can offer a prompt such as, "I heard people were telling jokes today," or "Did they have cheeseburgers at lunch?"

You may think that something of whatever magnitude it was will certainly be brought home and shared. NOT TRUE. PLEASE, PLEASE TELL US!

Even if all you can manage to scribble is, "Cheeseburger - lunch," that can get us started.

Highlight something specific to our child. Not merely a broad academic update -- although that is welcome especially in the areas our child is close to or is falling behind in -- but the bigger picture of how those behaviors that are the reasons he is in this program are affecting him in the classroom.

As for how often we'd like to hear from you, how about at least once a week; more only if something noteworthy happens. Write more at the beginning of the year as you're getting to know our child. Ask us questions if you want -- we can fill entire notebooks with responses. We can save you some time experimenting. If you seem interested in getting to know my particular child, it will build my trust that you're going to help him grow this year.

And not to speak for everyone, but I'd be perfectly happy with an email, if it's easier to compose those instead of hand-writing in a notebook. The whole notebook concept of which is getting a little outdated anyway, don't you think? If any program could revamp the parent-teacher communication process to streamline it for everyone, I'd think Nest could. (Any teacher reading this, give me your thoughts!)

* At parent-teacher conference time: I'm painfully aware that we only get 10 minutes to talk. Frankly, if DB is on grade level in the report card, there's little to say about the academics.

I'd rather hear what kind of person he is at school (because that may or may not be what he's like at home), find out how you're managing the behavior issues that you've written to me about, have a chat on progress on what you see as the most important IEP goals to work on, or what you've found works or doesn't work for his issues. Or ask me whether strategies you're considering might work or have been tried before, or what else you might try.

We thought we might suggest a workshop for the teachers on what we're looking for in our communication from you.

Above all, we want to know that you get our kid. if you can convey to us that you know his issues, we will relax (a little) and let you do your job because we have a sense of trust that you will address those issues.

No communication = no trust. We will pester you with annoying questions. Or, we won't -- and when our child doesn't make progress, we will be bewildered. And he or she will have fallen a year behind.

Math and Thomas Trains

2009-01-28T08:50:00.006-05:00

Every once in a while, I come up with a way to help DB learn difficult-for-him concepts in a way he'll enjoy. Usually he scorns my efforts -- "I know what you're doing!!" he'll say, and ignore me.

We had the Thomas trains out yesterday, and I got some coins -- pennies, nickels and dimes. I made Harold the Helicopter try to carry 2 nickels and complain, "This is too heavy, I need one coin that's smaller that is the same amount."

He figured out the answer, then realized "I know what you're doing!", but wanted to continue. More coins, more trucks and trains involved, we had a whole economy going on the floor! Trains and trucks buying eggs and flour and milk to make popovers (we've got the egg cars, and popovers was the only thing I could think of that DB eats with eggs in them), other trains buying Hotel for Dogs toys as pets, and on and on.

And he was delighted! Even talking about how he was going to get "extra credit" with his teachers for practicing his math.

I think part of it was that he was happy to realize that he knew some of the answers. And I didn't make him have to count for Every.Single.Transaction, some I did out loud and some we did together.

He'd rather use a skill in a real-world application Any.Day over a skills drill, which he sees no point in.

And now I can say we practiced the counting, which is lumped in with about another hours' worth of concepts at the bottom of the first grade homework sheet each week, in addition to every day's assignments:
This "Reminders" list is in addition to 2 sheets that come home, plus 1 or 2 math sheets, and at least 1 vocabulary words assignment. Oh and every weekday also includes "Read for 10 minutes with someone you love." I find that confusing --does he have to read? Or does my reading to him count?

Overall, though, when he gets home at 4 (or later on swimming lesson day) and bedtime is between 7:30 and 8, when is he supposed to eat, take a bath and recover from his day, let alone read? Or play? First grade, people, first grade.

Choosing Playtime over Homework

2009-01-28T08:20:00.007-05:00

Last night I let DB play for a long time.

When he gets home he usually wants to watch tv, I think so he can give his brain some time off from working so hard all day.

I prefer the days when he comes home ready to play (unless I'm in the middle of something that I was going to use his tv time to complete...), but when he wants to watch tv first, I let him. I've learned from experience that trying to get him to do his homework when he first gets off the bus? Not gonna happen.

So yesterday afternoon he chilled for a while and then wanted to play. It annoys both Husband and me sometimes that he doesn't simply play on his own, but life is what it is...

We had the Thomas trains out from the night before -- more on that in another post -- so after a wedding and a Lego-building honeymoon, we turned back to trains and added track and more trains and Lego houses.

(Here is the happy couple, Fashion Bunny and Earl Bear, with a Lego creation. "They're not very good at Legos," DB informed me before they started.)

He was really playing, making up what we might do, thinking of things -- not just suggesting things for me to do so he could watch.

So I was reluctant to make him stop and do the homework sheets. It just seemed like he needed that playtime more than drills on the same thing that bored him all day.

And so, we kept playing. We stopped for dinner eventually, and he even agreed to stay in the kitchen with me, and not turn on the tv, while his food and mine cooked. So we ate together, even. Very nice.

And then, we played some more and we set a timer for how much longer before it was homework time. Now, he does those sheets reluctantly, but he did them, one at a time, with 3-5 minutes of break in between each one.

It's exhausting! But he did them all, without complaining. It was a big deal. I like to think the play time helped.

Now, I didn't get him into the bathtub... I'm really hoping that by the time he needs a bath every day, he'll need less sleep and everything will work out!

Fresh Perspective

2009-01-26T12:03:00.002-05:00

"I think he manages to act responsibly at school most of the time."
--received in an email from a friend, talking about her second-grader.

Hey, I think I can say that, too! Maybe DuckyBoy is going to be all right after all...

How (Not) to Teach Writing Assignments

2009-01-14T20:36:00.006-05:00

Right before pickup time the other day, I was talking with another mom who is having a bit of back-and-forth with our teachers about the current in-class writing assignment, which is how-to's.

DuckyBoy happened to bring up the how-to's later on in the day, so I got some more info. I think all of us with a kid on the spectrum in this program rely on each other's kids, typical and not, to "fill in the gaps" about what's really going on; we don't get a lot of communication from the teachers, so we take our best guess based on what we DO get and factor in what our child tells us, but otherwise, speaking for myself at least, I never feel like I get the full story. DB simply doesn't process events the way the adults would. (Nor, on-the-spectrum or not, do we expect 6-year-olds to?)

But, to get back to the how-to's. ("Chop, chop, back to the story," DB has taken to saying sometimes.) DB says they had to have 4 or 5 steps and use "First, ..." "next..." and "then..." "after that..." and "finally." (He came out while I was typing this and even sang me the song.) This leads me to think that the main point of the exercise is learning to convey a sequence of actions, right?

Well. My friend's son wanted to write about a topic the teachers didn't think worked well for the assignment: How to play football. Which his father happens to be a high-school coach of.

The teachers wanted something more minute, apparently, and suggested something more along the lines of, "How to make a pb&j."

This mom was wondering why her son couldn't get a bit of a break... after all, the topic was outside of his usual preferred topic, and not seeming to be that far out of line re: the concept of the assignment. (Remember, this guy's dad is a high-school teacher. Mom, too, is an education professional.) Especially when you consider the other topics that, apparently, were fine:

DB says he wrote on How to catch a train: "First you get your MetroCard, next wait for your train..." and I can't remember the rest.

And he says another friend wrote about How to swim (hmm, a SPORT...): "First go to the bottom of the pool, next come back up, then go back down, after that come up again, finally you can swim." (I may not have that exactly right, but DB has told me about hers twice, because it bugs him a bit -- it's different than how he would explain how to swim.)

How are those 2 topics much "smaller" than how to play football? Seems entirely possible to break that into 4 or 5 steps as easily as those two. Here, let me demonstrate:

First, find a coach.
Next, find 12 players. [DB's dad is NOT a football coach so I don't even know if that's the right number. Good thing I'm not in the class.]
Then learn the rules.
After that, practice.
Finally, find another team to play with.

Given the apparent parameters of the assignment, does it really matter whether someone could literally DO it after reading his how-to?

Do they really think someone can learn to ride the train or swim from a 5-step paper?

Or is the problem they don't know what happens in football so they couldn't tell whether his sequencing was right or not? :)

Is lack of imagination a requirement for the job or a byproduct of the training? (OK, to be fair, our kids have many other pros with wonderful creativity around them during the day that I love. And for the record, I'm getting more info than ever before from our teachers.)

I also happened to find out from DB that another classmate really did write "how to make a pb&j." Good thing we like him, otherwise, we might have to hate him for setting the bar impossibly high! (He's actually an impossibly bright and delightful kid.) Think it helps that his mom is an experienced, early-elementary-school teacher? And that he is not on the spectrum?

* * * * * * * * * * * * * * * * * * * * * * *
Clipart from Clipartheaven.com

Little Problem, Big Problem: Bus Companies Fail Both

2009-01-13T06:29:00.005-05:00

I'm trying to do THEM a favor!

I told DB if he stayed in his bed last night (when we had a teleclass), I'd drive him to school today. In the past we've had a negative element to it -- don't come out or you'll get punished-- which was making him anxious about going to bed, so i thought I'd try another approach, which I'm happy to do. I feel that by staying in bed he's contributing to the family's attempt at entrepreneurship.

I remembered late that I don't know the bus company or matron's number, I only have the driver's number-- and the matron told me Monday morning we'd have a sub today.

So. This morning at 6 I rolled out of bed to track down the right number to TRY to help them avoid swinging by unnecessarily.

It is now 6:30, and I have JUST completed the call.

I have my son's bus letter from last year which has his ID on it, so I called he NYC Office of Pupil Transportation and got a number or his current bus company.

After 20 minutes on hold, I called OPT back and got another number.

On that number, at least someone picked up. But she looked up my son, asked "Which company?" and gave me another number.

At that number someone picked up and immediately put me on hold without asking why I was calling.

In a minute I called back and asked NOT to be put on hold as I had a "no pickup" (and most of the buses have left the garage by now, I was hoping to get it in WHILE THEY WERE STILL THERE). For the amount of attitude I have built up at this point I thought I was fairly nice about it, but I got attitude back! "Well, if I'm on another call I can't take your call.." Yeah, but you can PICK MINE UP when that call is done!

[Picture me trying to shake this off.]

These companies play fast and loose not only with which bus number (switching the nice new ones so you only get that one when your bus is being inspected or followed) but also with who runs/owns/operates which company.

At OPT, if I ask which company, I'm told "Little Ritchie." But my son insists that the radio on the bus crackles, "Logan base." Which do you think I believe, the shady bus company or my son whose life revolves around all things mechanical?

Can you imagine if I had a real problem? And Husband wonders why I'm not more gung-ho about the bus.

Edited to add: They didn't get the message. The bus showed up after all, but when I saw the matron later she told me they'd been running really late, so probably didn't waste much time waiting on us. She knows after a certain point I drive him anyway.

Rather Obvious Dream

2009-01-06T12:27:00.002-05:00

I had this dream this past fall about DuckyBoy's school. It was just after the cluster teacher and computer teacher told me he was having great difficulty adjusting to the first grade computer curriculum -- last year it was mouse-skills, this year is keyboarding.

I am in a car in a city. Mr S (the computer teacher) is in the driver's seat and I am in the passenger's seat. DuckyBoy, in the backseat, gets out at a corner to get cash. The entrance to the bank is around the corner (like, we stopped on a side street and the entrance is on the main street), so I can't quite see him once he goes into the building.

Suddenly, Mr. S pulls away from the curb, into a left-turn lane and enters the main road, which is a divided, 4-lane highway with lots of traffic.

I say, "What are you doing???!!"

I tell him to go back.

I see that he can't turn around until he gets to the next left-turn/uturn opening in the road.

I'm in a panic.

I wake up.

Now, whose anxiety does THAT show??

Resolution: Continue Prayers

2009-01-05T21:12:00.003-05:00

I am living proof prayer works! For a first day back from a long break, it seems that DuckyBoy did extremely well! (He himself seemed pleased with his day, and not exhausted or surly getting off the bus ... which is a big step.)

And overall for him to get through with no physical aggression -- and just one outburst -- that is a HUGE deal. I am delighted.

He said it was a hard day ("I felt like I was in third grade!") and also "different"- the only different thing he could come up with specifically was "no math!"

So, in short, I don't know what was different, but it was good.

In socialization session the kids came up with resolutions, his was to watch less TV. He stuck with it for the whole evening! Boy, am I proud of that one.

He even got the concept of resolutions --"something that makes you healthier or better."

Amen to that!

Homework: Heroes Are Hard

2009-01-04T21:51:00.004-05:00

DB had a hard time tonight with his homework assignment from the holiday. It seemed simple enough-- write about "heroes," what they are, and choose one to write about.

Well. "What they are" to him meant literally, not personality-wise. So since he'd decided his hero would be Bolt, he said "heroes are dogs." We had to start with a discussion of what personality traits are and I mentioned some he knows, like funny.

Then we had to think of 4 words that the word "hero" makes you think of. He did come up with "fast," but they're not all fast. He thought of "nice," which I'm happy about. I helped him think of "saves" and "helps" and then let him use "super" even though I think he meant our building superintendent. (Not sure why he's fixed on him as a hero but well, whatever. He's a super super.)

Then, the sentences using those words. Oh, the torture! But we got 2 down.

Then, describe what your hero did. I practically did it for him, but my sentence included the word "because" -- one of his words from last month, by the way -- but that was rejected ouright as "too long." So I split the idea into 3 sentences he managed to do:

Bolt is a hero. Why? He saved Penny.

And I got him to add "He is nise [sic]."

I even wrote.it.out. so he could spell it right. Insisted in spelling "Penny" his way -- "Peeny" and I made him erase "saved" because he tries to cross out misshapen letters instead of erasing them.

Serves me right for waiting until the last minute... Next time? Homework gets done first.

Drat. I hate to be the homework police.

So close, and yet ... not

2008-12-19T22:31:00.002-05:00

We survived the winter concert. Some success, and some not success. During the first first-grade song, DB tried his best to shout down all the camera flashes, and got yanked from the stage. I think twice, it's a bit of a blur.

But all the people who helped him prepare all week who I felt like wasted their time felt like he made headway, because he pulled himself together and managed to stay quietly on stage and even sing for the other 2 songs. Well, not sing Auld Lange Syne, which he told us he hates. (It may be the key it's in ... really could hurt his ears.) But he stood for it.

No duck was won by him today. But he also didn't get an emotional beatdown by anyone -- and I was the one most upset so the most likely candidate to do so -- because, thankfully, the social worker checked in with me and gave me a suggestion of what to say and how.

So. I'm just glad it's over. I wish I'd gotten to see him succeed. Maybe next time I can go to dress rehearsal.

It's going to take some convincing to get me to do that again. There's got to be some alternative. Maybe I just won't go. Like maybe he'll just be sick next time. Or have a really important family emergency that day. Omigosh, he's going to have to miss the concert. Gee...

Mixing with the Typicals

2008-12-18T18:21:00.003-05:00

Sometimes I wonder who needs the social skills lessons, DuckyBoy or me. Yesterday I talked with the social worker for a long time about my anxieties about setting up playdates!

I feel awkward asking for playdates when we live so far from school and most of DB's peers are walking distance; I don't feel like it's a valid option to suggest "Come to our place," yet also don't want them to feel they have to invite us over. But I'm working on that.

Meanwhile DB had a GREAT time after school today with 2 girls from his grade -- one who sits next to him (may be new girlfriend, though he's playing this one close to the vest so they may just be friends. After all, they still are only 6) and another we know less well.

For more than an hour they played on the swings, and his friend taught him a new way to climb partway in and out. (Yes, a new way to clonk his head, great!! but I'm glad to see him trying anything new; anyway I was standing right there.)

He cried when we finally all had to leave, and while I was trying to explain that crying and sounding angry isn't a good way to leave off if you want to play again, she was saying to her mom, "He's crying because he loves me." Boy, would he be lucky to have her as a friend!!

Getting with the Program

2008-12-18T08:36:00.003-05:00

DuckyBoy has been getting into playing school from time to time.

This is a big deal. Not only because he writes out a schedule but also because it means he's processing it as part of his life.

I remember the parent-teacher conference last fall when one of the kindergarten teachers was encouraging us to set up playdates for him with a classmate who loved to play school. As in, nonstop. I guess they thought it would help DB get with the program, I'm not sure. (The other boy's dad later told us that when he got home from work, he had to play school. All evening.)

My reaction was twofold:

"Why I'm gonna make DB do MORE of something he already doesn't like?"
and ...
"That's the typical kid?"

An Unsolicited (and Much-Appreciated) Compliment

2008-12-16T11:54:00.003-05:00

I was very excited yesterday. On a whim, I packed something unusual for DB's snack -- a package of fruit gummies AND a few cashews. The packages of this brand of gummies are hard to open so I cut one open, then put it in a ziploc bag, where it just fit to hold it closed, so I tossed a few cashews in the same bag, knowing the 2 food items would not mix. I always like to remind him that it's important to eat the nuts, since otherwise he may ignore them, so I slapped on a label that said, "Brain Food/Fun Food" with arrows pointing to the 2 sides of the bag.

And, much to my surprise, when he was at home yesterday afternoon, he remembered it and said with a smile, "I liked your brain food, fun food." WOW! He thought of it on his own, and commented about something he liked, with no prompt!

Update on holiday concert practice: Vacuum-cleaner-tested paraffin-style earplugs are awaiting their official tryout at the next practice this week. The OT is also developing, or has already made, a fidget to attach to DB's belt.

He's being given the option to stand on the end of the first riser or on the floor in the front row, and will be (or has been--I always get the info on a delay, like I'm in another part of the world or something) given the chance to choose a reward to work for.

Holiday Concert Problems

2008-12-11T08:10:00.003-05:00

The one thing that's less than optimal overall about DuckyBoy's school is the emphasis on public choral concerts twice a year. I'd much rather he learn a few songs but not have to sing them on stage, learn some theory, whatever. I don't know that I even had music when I was in school but anyway it's really tough for DB.

Apparently they had their first all-class rehearsal last week and he misbehaved terribly. Covering his face, pinching the kid next to him, singing too loud. TWO cluster teachers were trying to help him, clearly to no avail since they emailed me last night looking for suggestions.

Well, my first suggestion was to ask his kindergarten teachers, since last year he needed an adult next to him at the December concert but did fine by spring.

I'm really torn. DuckyBoy is never going to be a great singer and group musical performances is likely to never be something he's interested in. On the other hand I saw him do alright at the spring concert so to give him the option not to participate would be backsliding.

He thought back to the spring concert this morning and said he liked wearing the hat (and possibly, from my recollection, fiddling with the strings on the hat).

That may be bigger than it sounds, for him to have something to do with his hands. Maybe something small. I know there's always an issue that all the kids will want one, but if he had a physical handicap and needed a cane to stand, all the other kids might think it was cool and want one, but they wouldn't all get one. We just can't see what his handicap is.

Since we don't totally know the real problem it's hard to address. I can guess that
1. he didn't know what to expect and
2. Was then required to do not just one thing but a whole series of things he didn't want to do and were entirely beyond his control.

I think the issues are control and anxiety. He also, to be honest, simply has difficulty keeping his body still while standing.

I know he is excited about at least some of the songs he is learning, and likes the idea of "Christmas caroling," but nervous. With the words in front of him, a couple of weeks ago he wanted to "go caroling" and sing one of the songs for our neighbor (another mom), but when he made a mistake in the words, he got angry with himself, stopped singing and ran away. I could not get him to try again.

My observation is that the area of regular classroom he is having the most trouble with -- certainly the time when he is exhibiting the most aggression -- is when he's required to be in close proximity with the other students, namely the group instruction period "on the rug." So his behavior is consistent, we just don't know what the triggers are -- proximity to their body heat, breathing sounds? being jostled?

The poor guy. All the things he has trouble dealing with converge in a mandatory group performance on the stage!

Handling Autism Aggression

2008-12-05T22:26:00.005-05:00

Has anyone heard about this study, from last year, titled "Mindful Parenting Decreases Aggression, Oncomliance, and Self-Injury in Children with Autism"?

Looks like a legit journal, though perhaps not a big one.

I found it while searching around for some online advice for dealing with DuckyBoy's aggressive tendencies in school. At home he's noncompliant at times, but at school he throws things, punches, and (today) kicked and, though more out of thoughtlessness than desire to injure, another child got kicked in the face.

This has to stop! I don't buy into the one website I found that said basically that the school (and, by inference I) should simply remain calm and simply accept it as "a consequence of the developmental difficulties autistic children face. Granted, that was only one site, but ... No way!

Not when he has shown that he is capable of learning to control his behavior, given the appropriate prompts and understanding.

Nor do I think he is so violent that he needs to be on risperidone or some other drug to calm him. He may need an anti-anxiety drug some day, heaven knows I did, but not at age 6.

Where was I? Oh, yes. So. I find this tantalizing title and a short abstract and can't find anything else about this article. So I Google mindful parenting, and find something even more hippy dippy (sorry but it's true) than the attachment parenting theories that, for the record, I still agree with, but caused such a rift to grow in my marriage that it has never fully closed.

It seems to involve saying little new-agey prayers to myself, about my child, every moment of the day. Uh, ok. I wonder if there's been a study of moms like me who just pray for strength!

I read one nice thought that I thought I'd post on DB's computer:

I connect with a mechanical brain
But there is a living brain
That loves me dearly

That's nice ... though it gets further-out from there. I think I'll stick with my prayers to The Big Guy ... though this inspires me to beef that up and make them more positive.

That seems to be the real gist of the Mindful Parenting movement -- turning your child's difficult behaviors into something positive, like when putting on their shoes, reminding yourself that this phase won't always last and to think of the color of their shoes. When you're driving them to school, being grateful to be together.

I already do that so much, I didn't know it was a movement. (Makes me wonder what else I do automatically that I could be making money by teaching other people to do...) But I struggle with dealing with DB's aggression.

I'm afraid for him, that he won't learn to control it. I envision violent men and police involvement and that scares me. A lot.

I did find some advice that helped put my fears to rest. Things that hint that this is solveable, with a lot of focused assistance.

Like this case study:
Case Study of Jo
from which I glean that there are a number of additional strategies I AND SCHOOL could be doing, albeit pretty intensive ones. But I think it has implications to help the ASD kids in this program beyond DB.

and

this post from a blog called Earthly Explorations, from which I got the idea to try giving him some practice at following directions, at times such as before we start homework and when I am taking him to school (specifically, when we arrive at school).

and this one, which describes likely reasons for DB's aggression. (Much as I love his uniqueness, when it's a problem, I find it reassuring to find him in a description!)

From these and others I've also developed this 3-step plan for expanding the "write down why you got a strike" idea to this:

1. Remove him from the situation to a place that is NOT rewarding. (Suggestions include a chair in the hall or facing the wall for some short time -- like 3 minutes. I don't think he should get to go to the break corner and read Highlights magazine when someone gets hurt. He should be even more bored than he was when he acted out. (Although, when I say it like that, maybe that's not such a good idea. The idea is that he should NOT receive attention immediately.) I think the hall idea would work. Alone.

2. The attention should be given to the hurt person, and DB should see that.

3. THEN (after the time apart) he fills out the "why I got a strike" form, including what he could do differently next time.

4. THEN he has to make up the work he missed. The problem I see here is that he's trying, I think, to avoid group rug time, and that can't be made up. Have to work on that a little more.

I give the teachers credit for adding, this week, him having to write why he did what he did (as best he can figure) -- for example, he came up with "because I was angry" for one. What we need more than that, though, is to find out what triggered the anger. And he likely cannot tell us that; we need to record and guess that.

Breakfast Perspective

2008-12-04T07:44:00.004-05:00

In one of those ironic twists life brings, I was up extra early this morning to bake muffins for DB's breakfast. But for whatever reason, he was up too, and had microwaveable bacon instead. (Oh well, I'm enjoying the muffins!)

Upstairs:
With his approval I packed a couple of the fresh, hot muffins for him to nibble on when he got to school.

[a few minutes later]
Downstairs:
As we walked out front for him to get on the bus, he complained, "My teachers MAKE me eat my breakfast! I don't wanna take it!"

Since he had already eaten 5 pieces of bacon I took the muffins out. And promptly thought better of it and emailed the social worker at school in case he changes his tune when he arrives at school and his stomach expects the usual routine, bacon or no!

I find two things interesting:

1. He often thinks of something about school to complain bitterly about right at the transition point of home to school, literally as we walk to the street for him to get on the bus.

I'll have to keep that in mind for the rest of his life -- he may be on his way to the church to get married, complaining about his girlfriend. But it doesn't mean he doesn't want it, it's just how he transitions. (I think. I hope.)

2. Can you imagine how awful it must feel to think someone is trying to FORCE you to eat when you don't want to?

The problem is, he gets hungry at odd, inopportune, inconvenient times. He can learn to eat when the group eats. He's learned it for snack and lunch, dunno why breakfast is still an issue.

There may be days when he's less hungry than others, and he doesn't want to eat ALL of the breakfast? His breakfast is more supervised than the other 2 meals at school. Maybe 3 mini muffins is too many. And that's easy to fix.

On the whole, though, on this one I'm on the teachers' side!

How I Spent My Thanksgiving Weekend

2008-11-30T22:14:00.003-05:00

We spent most of the weekend at my in-laws, where DuckyBoy's favorite thing to do is play with his cousin, who is 13.

After they'd played for 2 days straight, well, she -- being in high school and all -- had to do some homework. To wit, she had to read George Orwell's book Animal Farm, ideally the whole book in one day, and she was not looking forward to it.

I remember slogging through that book as a teenager and comprehending very little, so I thought a thoughtful reading and discussion might help to at least get her started.

My son was, of course, listening in. To my surprise, he asked intelligent questions, made comments, got as many of my occasional questions right as she did, and even drew a couple of pictures and wrote stuff down, just like the book responses he does in class and for homework.

His cousin even said his questions (and my answers) were helping her understand it!

Can you see me (and a 9th grader) explaining these concepts to a 6-year-old? Whew! Of course the larger political message was lost on him -- he simply says he's on the side of the men -- but a bit of the struggle among the animals he grasped.

Actually it WAS interesting to read it having read Doreen Cronin's book Duck for President with him. That made it easier to help him relate to some of the ideas ... that and the Nicktoon "Back at the Barnyard," where the animals are so much smarter than the farmer.

He didn't hear the whole book, about the first half. But he did hear the end and was curious about the pigs seeming to turn into people.

So, if I ever find myself needing to explain communism or capitalism to DuckyBoy ... or the corruption of power ... well, we've laid the groundwork. LOL!

As one of his teachers said, "Next up, Machiavelli!" Hmm...

Aspergers and Hive Mind. Sounds Like a Mismatch

2008-11-19T07:27:00.004-05:00

I may be harboring a misconception, but my feeling is this: When there are not additional support people in the room, my son is not treated in any way as an a individual. He is treated as someone whose individuality is in no way an asset to the group. He is expected to exhibit Hive Mind.

Mind you, there are 2 teachers in this room with only 17 children. I know my husband thinks I am unrealistic, but I expect better.

I Give Autism Teacher Training a Strike

2008-11-13T09:14:00.004-05:00

Kristina's post about teacher training for autism strikes a chord with me.

I'm struggling with the same issue while my son is in a program that's supposedly specifically for kids with his dx, and the teachers are paid extra and the district gets extra $ to give them dx-specific training! Supposedly.

I think part of the problem is that the training aims to generalize the population, the The Whole Point of this population is that each one of them, ideally, will do best when approached as an individual.

Sometimes I think my son would be better off in a general classroom (if they just weren't so gosh-darn BIG); I think he'd be treated as more of an individual than he is in his current classroom, where they take great pains (at least, it pains ME) to treat everyone the same.

The article that sparked Kristina's post about it recommends distance-learning as a way for teachers to get training without travel, time away from home, etc.

It's got to be better than the NYC model, which is apparently -- in my eyes -- dumb everything down to, "Treat everyone the same." Oh and also, "Give them checkmarks for good behavior (but don't tell them why or write down the reasons why). Give them strikes for bad behavior, and (since/when the parent is interested in following up at home) make the child write out why they got a strike and what the consequence was after 3.

My son has figured out that 2 strikes carries no penalty at home other than a bit of discomfort.

He said the other day that he kinda likes to get strikes. It's about the only time he gets 1:1 attention! Poor guy. I really feel for him.

ASD, Meet ASL

2008-11-06T16:42:00.004-05:00

After school I took DB to a free class at a Queens library branch about American Sign Language. He's very interested -- always checks out the ASL alphabet poster at another library branch we visit, and is very happy with the book I recently bought him on the subject.

So, I thought, a free class for all ages, give him some exposure to real live people using the language, we're in.

Well.

First of all it started at 3:30, which meant I spent from 3 'til 3:28 trying to prep, cajole, and otherwise drag him away from the playground. Thank you Joe, I finally got him to leave, and then I forgot about parking so we spent an extra 210 minutes circling the library. At just about 4, we walk in and since it's branch I've never been in, I ahve no idea where to go. The librarian wants to finish the patron she's helping before she'll even answer us --even though DB said, "Excuse me, miss" to her very nicely, I thought. We finally ask another passing librarian who ushers us into the room.

It's totally quiet! The teacher is truly only using ASL to communicate. That and a chalkboard (no screeching, thank goodness).

So I think that freaked DB out a little.

That, plus the fact that we got there so late that I didn't know half the signs he was using so I couldn't even translate to DB, made it a bit frustating for him. he ate his snack and then said, "We're leaving."

I could've argued about the imperious tone, but in fact I knew he wasn't getting anything out of it. We accomplished all that I really wanted. So we left.

And I am reminded that my son is, in fact, only 6 years old.

** Edited to add: It occurs to me that one of the reasons he was likely bored is that the teacher was teaching us "Understand/Don't understand/Do you understand," which in addition to a hand signs also relies on facial expressions for the differences. Get it, facial expressions, which DB doesn't really get.

You can't see me right now, but I'm signing "I understand!!!" Sorry, didn't learn how to say "Internet." Yet.

Lack of Control

2008-11-06T11:11:00.006-05:00

Ooo, there's another mom in the Nest program who's blogging about education and HFA. She's got an official gig though, while mine is, how you say, rogue. Haha. So far I'm really impressed with Marni's posts about ABA vs. floortime, and her son's issues. Look forward to reading more!

Her post about her son's first-thing-in-the morning obsessions got me thinking about DuckyBoy's first-thing-in-the morning utterances lately ... they're along the lines of this:

Nice Mommy enters dark bedroom. She gently sits on bed and touches son to awaken him in nicest way possible.

Son rolls over and stretches and says [whiny annoying voice]: "Arrghh! Moooommmmeee, I wanted to wake myseeeeelf up!"

Nice Mommy leaves. 30 second pass. Slightly-Less-Nice Mommy enters the room and sits on bed.

Repeat ad nauseum.

Only this morning, I wasn't even IN his room when he woke up and whined that! It's true that I was making some noise packing his backpack in the hallway, in the hopes he'd wake himself up, but I STILL got blamed for waking him up -- get this -- by being, he said, in his room!

Makes no sense. Which is what made me think it has to be about control. Isn't it possible his current obsession is just that -- control and lack thereof?

My other hint about that is that some of his tantrums at school have been when it's not his turn to go with the physical therapist. My guess is that he's bored in the classroom, she enters the room and he thinks, "Ah! A beacon of hope! A modicum of something interesting to do, an interesting adult to talk to one-on-one about ME!" (OK, I don't think he knows the word "modicum" yet, but you get the idea.) And when it's not his turn, that outstretched hand feels like it's been cruelly withdrawn.

So. Long story short, I think he simply doesn't know when it's his turn and when not -- it must feel completely random -- so I'm hoping she can give me the USUAL schedule (not written in stone, I know) so he can feel like he knows, in broad terms, what to expect. Some sense of control through knowledge.

More Typical Than Thou

2008-11-05T22:00:00.003-05:00

What bugs me is that I often wonder if DB was in a typical classroom with an IEP, he'd get more individualized help, tailored to his needs, than he does in this program, where the 4 Nest kids get lumped together and the goal is lock-step to Treat.Everyone.The.Same.

It's fine if every kid in the class has access to the box of fidgets. What I don't like is there's no effort made to (that I see anyhow) to ensure that at least one of those is meeting my son's needs.

Half an hour on the web and I have a lot of ideas, form a therapy ball to something he can chew onto letting him write with colored pencils. Anything to keep his interest. I think the kid is sooo bored he can't stand it. He's fidgeting with whatever is near him just to stimulate his brain cells.

But what I see, albeit dimly, is a fond wish that he simply go along with the program of typical instruction, as it were.

I feel like my kid is expected to be uber-typical, whereas it'd be more accepted for him to have individual needs and issues, and have a chance to have those needs addressed in a variety of creative ways, in a typical classroom setting. Dare I say, private school??

The idea is to treat all 16 kids the same in the class so no one is singled out. The problem is, my son needs some singling out to get his needs met.

I can remember being asked to read the worksheet directions to the entire class. When I was in first grade. I don't think it was done as a way to keep me focused -- no aural-learning need -- but I survived being treated differently, and my classmates dealt with being jealous that I got to read the directions and they did not. (I did get cornered at recess one day about it, but otherwise emerged unscathed.)

Why isn't that possible for him? Is that a NYC public school thing? A 21st century American education thing? Whatever it is, I don't care for it.

Telling Stories

2008-10-11T22:03:00.002-04:00

This isn't really so much about school as about DB, but it pertains to his fixation on a classmate so, well, my other blog post about today is too long already, haha, so I think this is a better fit here.

On our way to the bus, starting our afternoon adventure, I had to set some rules about telling stories. He's got a new girl to be enamored with this year. Still loves his friend from last year, but they're in different classes, and, well, this girl's always around. And fun.

Walking to the bus is, well, boring time for DB. So he likes to fill it with stories. Stories told primarily by ME. And for the past few days he wants those stories to be about his new friend.

Mommy don't play that; it's too close to fantasy about a real person, and I've got my own history with that. (Maybe I'll share that someday.) I'll make up all kinds of crazy stuff about any animal, inanimate object or TV- or made-up character you want, but a real person? A little weird for round-the-clock conversation.

So I told him so. I said, We'll tell the story until the bus comes, and then we switch to "doing what Mommy wants to do mode." He agreed ... and it worked out really well! He was in a great mood, didn't bug me for stories at all -- until we got off the bus. Can the kid turn it on and off or what? But when I called him on it, he seemed to switch easily into thinking about something else.

A few times this afternoon he did say to me, "Guess what I'm thinking about," and I always said the girl's name ... and was always right! But that's OK. He does focus on things. One of the things I loved about Husband when we were dating was how focused he was on me!

But DB was able to enjoy what he was doing today, and not think exclusively about his friend.

I wonder if my little time limit speech freed him, in a way. We sure had a good time together.

Homework Help: Reading Log

2008-10-09T22:34:00.004-04:00

At Parents' Night last month, someone asked whether the children themselves were supposed to write the titles on their monthly reading log. The teachers' answer was Yes, the kids should fill in the log themselves.

Yesterday I took a look at the amount of reading and writing DuckyBoy's class does every day, and at the homework (which includes at least 1 writing exercise and 1-2 other sheets, plus 15 minutes of reading), and realized something:

It's not gonna matter if I write the titles and authors on his book log instead of him. What's important here is that he reads the books. Let his teachers come to me and tell me he has to write the log as well, and then we'll talk...

About how last month, we picked only books with short titles by authors with short surnames.

About how tonight, when we started the October log and I told him I'd be writing the titles down from now on, he read me "A Dinosaur of My Own" and If You Give a Mouse a Cookie with no grousing.

About how I'm all for doing things the school's way, until it interferes with the bigger picture. And how last year, the teachers assured us that the big picture of the homework was more important than every little detail.

He's 6. His writing will get better.

And if it doesn't, it's not that big of a deal. In 3 more years he can type all his reports anyway. (Although the change in Computer class from last year's curriculum -- a shapes/drawing program called KidPix -- to keyboarding isn't making DB too happy in the short term. He has no idea how happy it's going to make him down the road to not have to write his reports out longhand.)

Our First Problematic Birthday Party

2008-10-04T21:14:00.002-04:00

One of the "typical" kids in DuckyBoy's class had his birthday party tonight. DB did fine at first, tossing balls around with the other kids. Though even then, he was confused by the other kids calling his name -- "like they hate me!" he said, when in fact they probably either wanted to play or throw him the ball!

Then there was a game, which he had trouble with but tolerated partial participation in. It was passing a ball from kid to kid and, when the music stopped, whoever was holding the item got to unwrap one layer of tissue paper. The suspense was difficult for him, and the pressure--will I win? Will I have it?

Then came the pinata, which was done outside. DB was able to stand in line, with prompts, for one turn, then peeled off and flitted about, watched, and eventually took 1 more turn -- drama-king style, but all the adults there love him.

When we all went back inside for the pizza, he just couldn't take the sound level. It was a basement room with low ceilings, and it was hard for me to just plain hear people -- let alone whoop it up as a kid -- so after he yelled at a kid I KNOW he likes, I made him apologize and we ate outside, then when he couldn't got back in we said our goodbyes and left.

I honestly was flummoxed, didn't know how to handle it. I was disappointed and part of me wanted to be mad, but at the same time I didn't want to be -- as it was clearly beyond his control. Because what he COULD control, he did; he said goodbye exactly the way I suggested, telling the birthday boy happy birthday and waiting to ask the birthday boy's mom (the more appropriate person at a more appropriate time) about the goodie bags.

He left with a positive feeling that he'd had a good time, which probably means I did the right thing.

Maryland's Version of Nest

2008-10-03T00:02:00.003-04:00

Interesting post about autism in public schools in Maryland. OK, so it's from June. Still interesting.

And I've got to give props to the folks behind the Soft clothing line for pointing it out to me. Where's my potential- investors into, Softies? DuckyBoy definitely has a few clothing-related sensory issues. Though, thankfully, not as many as some kids do.

What to Wear When You've Got Issues...

2008-10-02T13:46:00.004-04:00

Sensory issues and fine-motor issues and bathroom issues, that is.

The message board for our program had an interesting thread recently about pants. Some of the new kindergartners have trouble snapping, zipping, and so forth after using the restroom. The response most of us had was: Get him pull-on pants.

My son is thin enough he can pull his jeans, fully snapped and zipped, down and up. Others may need elastic-waist pants. I love that the board offered numerous suggestions of where to buy sweats and elastic-waist styles:

Sears (my suggestion)
Kohls (for sweats)
Target (jeans with elastic waist)

And even suggested some brands for the slim guys:

Osh Kosh
Cherokee

And for the huskier boys, another mom recommended the Children's Place jeans. I happen to also do OK with the Children's Place adjustable-waist jeans, but that's due in large part to the slim way my guy is built. (He's just growing into some of the bigger 4's -- a friend whose son is three months younger gives us some hand-me-downs!)

Someone also had a good idea of cutting the button hole a little bigger on button-top jeans, to make it easier to manipulate. I haven't had to try that, but it sounds like a good idea!

Everyone agreed that snapson jeans are the worst. And it was easy to tell we all sympathized with the mom whose recent purchases of new school jeans for her son are now going to need to be replaced asap! But as one poster put it, it's worth it in terms of the child's self-sufficiency and self-esteem that comes from being able to do-it-himself.

The pants problem actually began as part of a larger discussion on bathroom issues; not only do our kids - especially their first year in public school - need help with clothing, some also need help getting clean, or remembering why they're there, or dealing with the flushing sounds. Not to mention those automatic flush toilets, which I've heard our school is installing as needed when the old toilets are replaced. My son won't go anywhere near them, for #1 or #2! And, apparently, he's not the only one.

How about kid-friendly bathrooms in places like airports in 5 years or so? (Schools would be a dream...) It'd be great if in those nice big handicapped-accessible ones, they would also include a little-kid-size potty like preschools have. Without automatic flush, or on a 5-minute timer or something.

Public restrooms aren't exactly wonderful anyway, as I'm sure anyone who's ever used one will agree. So let's let our 5-year-old special needs kids go on their own! Yep, that's a good idea.

One of our knowledgeable parents on the board mentioned a "bathroom para." Ever heard of this? Someone whose job it is (I can only imagine they do other things throughout the day as well -can you imagine it as a full-time gig!?) to accompany a child to the restroom. Special training is involved, although it's probably more about the background check and accountability/ transparency than anything else.

I'm on the hook to write up our concerns for the head of our program, so I'll post that summary here when I get it done. My father always said "Don't tell them what's broken, tell them how to fix it," so doubtless I'll have brainstormed some ideas -- and so will the other folks from the board -- to pass along as well.

One more thing about pants: A few years ago when DuckyBoy first outgrew Pull-Ups for swimming, we had an issue with him hating swim trunks. A wise mom (thanks, Sneadwoman!) told me a -- no, make that THE -- simple solution: Cut that mesh lining out of the suit. We've had no problems ever since. (Though it does keep me from buying expensive suits for him -- I'd have trouble taking a pair of scissors to a pair of pricey trunks!)

School Pictures

2008-09-24T20:37:00.002-04:00

This isn't unique to public school, but am I the only one who thinks school pictures are passe? I helped with Picture Day today, and it felt so out of touch with today's life.

First of all, these giant portable portrait studios get set up -- 2 "mushroom" flash reflectors, places for the kids to kneel, sit, or stand, and backdrops, and these giant cameras as well.

Then they use adult-size folding metal chairs to set up for the class photos.

Ever see a group of first graders (I didn't even watch K or pre-K) try to sit with their legs hanging off an adult chair? And sit STILL? Without putting their feet on the rung underneath OR crossing their legs Or swinging them? Oh, and hands folded on laps. OH, and sit forward, not leaning back. Riiight.

Now put some of their classmates behind them. Just for fun, let's give 2 kids in the back row autism. Tell them to stand shoulders-touching their classmates (meanwhile all the rest of the time we talk about "not being in each other's body bubbles"), stand still, hold their arms at their sides. And look at the cameraman.

The guy doing the group photos seemed to think talking LOUDER would get their attention. Obviously had no training in special-ed kids.

Our school is committed to being all-inclusion classes as soon as possible; there's gotta be a better way to do photos.

Bespoke Education

2008-09-23T09:51:00.004-04:00

I learned a new word this morning, "bespoke." It means custom-made, made to individual order. It originally referred to clothing, but I think it's a great word for the type of education our children need. A program with guidelines is great, but a cookie-cutter plan won't work!

Ironically, I found it on the site of a young woman with Aspergers who was describing the presentations she gives about working with or teaching people with Aspergers. Her name is Robyn Steward, from Britain, and I wish I were in LA today so I could hear her speak.

Updates on Bus Buddies and Breakfast

2008-09-23T08:07:00.005-04:00

OK, so I was kind of freaking out yesterday morning. Mondays are hard on everyone. That doesn't mean I didn't have valid points though.

Bus buddy first: The social worker spoke with the teachers and Josh (it happened to be his day for a session with her and she read the email beforehand-- I should've played Lotto, too!) She talked it out with him about what his options are -- which they decided are to give me the buddy before he gets on the bus, or to put it in his backpack when the bus arrives at school. (Exact timing of that not specified, but she also got the Ok from his teachers that they will allow him to put it in his backpack, instead of taking it away from him.

Yes, that's right, classroom policy is when they see a child with a toy, they take it away from them for the day. I don't think that's so great for the Nest kids; first of all they've been in preschool for probably 2 years, then a year of kindergarten, when they've been allowed -- bus or not -- to have a transitional object with them.

Now, suddenly, hello! Grab! You'll get this back after the day is over. Meanwhile we're going to put it in a public place where anyone could grab it. Hmm, that's probably reassuring to a typical kid, is it? To be able to see it?

I understand that toys are distractions at school. I can see taking away a toy if a kid is playing with it during a lesson. But if a first-grader, for pete's sake, has something at the beginning of the day, isn't it likely to be a transitional object? Can't you just tell him to put it in his backpack or cubby? They have trouble understanding mine-yours-the whole personal property issue as it is.

DB really took it as a punishment to have it taken and then set on the desk. I have to wonder if he's not alone in that response.

And if they do mean it as a negative reinforcer -- don't bring in a toy so it won't get taken away -- couldn't they have at least had a transition period? It's still September for pet's sake!

The social worker's other comment was that the teachers were surprised to hear anything about a transitional object, "As they haven't seen one since the first week of school!" Well, yeah!! They shamed him into never.bringing.one.again., that's why!

Somehow all this needs to be communicated to the Nest teams. It's not a big deal, but the little stuff builds up for our kids sometimes. Maybe this is the kind of thing that made DB so unhappy by the end of last year. I'm trying not to let that happen this year, since he's off to a great start. It helps that he's more articulate this year also.

Anyway, Part 2: Breakfast
Well, I'll have to post another update when we see how it is ongoing. But the OT was very reassuring, noting that it's likely to be less disruptive for him to eat in the early-morning class than for him to not eat and whine from hunger later on.

And, I now have the facts from someone on the Nest parents board, which is that the bus company is supposed to get him there in time for breakfast! So technically, they should be letting him eat! I'm not in any hurry to get an earlier bus pickup for him, but ...

Why aren't the teachers more aware of this? Why don't they have a policy that bus kids who don't arrive in time to eat in the cafeteria Still Get To Eat Breakfast? I know most of the kids in this school are local, but hello! Nest class! You get paid extra to know about the issues pertinent to this program, and busing is one of them!

Further update: Teachers are on board with the bar. And-- how about this -- the OT is suggesting a water bottle at his desk too! I LOVE her!

Bus Buddies

2008-09-22T07:53:00.006-04:00

Another email sent this morning before 8 am...
Just wanted to make you aware of one more difference between kindergarten and first grade that is still giving DB some pause... it's often been helpful to him to have a "bus buddy," some transitional object from home that goes to school with him. Sometimes it's a stuffed animal, sometimes it's a small vehicle.

Last year when they would get to school the object would be placed in their backpack for the day. (Totally understandable.) My understanding was that it was part of the unpacking routine.

This year, he says the teachers (either) take away whatever object and place it on their desk the whole day -- where he can look at it and obsess about whether he's going to get it back or whether someone else will take it, etc. -- OR tells him (and he mimicked this in a really harsh voice, which I'm sure the teachers don't use but that must be how it feels to him), "PUT THAT AWAY!"

Mondays are the hardest transition day, which is probably why it came up this morning. I know he would really have liked to bring a bus buddy this morning but decided against it, calling the teachers mean and saying he hates first grade.

Needless to say, the transition onto the bus was then more difficult today.

He's got a lot to think about when he get to school, and I know they get walked to class as quickly as possible, but can he be helped to get in the habit of putting his bus buddy in one of the outside pockets of his backpack when he gets in the building, or as soon as he gets in the classroom, or something? Or can we have a social story about bringing things to school? (We've already gotten a social story home about who gets him off the bus; from its contents I infer that he was anxious when it wasn't the same person each day.)

What is the policy? Because K was very lenient and the message I am getting from him is that first grade has a zero-tolerance policy.

Since this went to the social worker and cluster teacher, I also noted that we are having an issue with breakfast as well, and that I had already this morning emailed the OT and written a (shorter) note to the teachers, ending with: I hate for this to make mornings a double whammy for him.

Breakfast frustration

2008-09-22T06:07:00.003-04:00

Email to the very-nice OT who brought the issue to my attention a couple of weeks ago:

Good morning,

We are back to square one with DuckyBoy and breakfast. He told us this weekend he gets hungry "at math," which I know from the schedule is the first subject after morning meeting.

His matron does not want him to eat on the bus and the teachers told me on open school night his bus does not arrive in time for him to eat in the cafeteria, even though I pack him something.

DB gets on the bus at 7 am. I can get him up earlier (like, 6 am) so he will be -- possibly-- hungry before he gets on the bus, but that will still be 2 hours till math for one little breakfast to tide him over.

On Fridays when I drive him: for one thing the start time is later so he gets hungry before leaving the house, for another thing he can always eat in the car. Driving him on the other days is possible but not the best first choice for our family.

Aren't there any other options? Can he eat something not too messy, like a breakfast bar, during the early session? I bought rice-milk protein powder to make my own high-protein bars for him, but if he's not given the opportunity to eat then there's no point.

The only other thing I can think of is not letting him have a bedtime snack, which is a cherished part of his bedtime routine that will be disruptive to change (and we have enough periodic sleep issues as it is). It's still no guarantee that he'll be hungry between 630 and 7.

Random Thoughts for Incoming Kindergarten Parents

2008-09-17T20:56:00.004-04:00

--as you freak out because it's 2 weeks into the school year and you don't know as much about what's going on with your child's day as you thought you would! From a first-grade Nest mom.

First of all... deep breath.

The first few weeks are the worst, the team is still figuring out what the kids can and can't do. Have they even done evals yet? Ours got done over the summer before kindergarten began, but I've no idea how it's being handled this year.

As for the handwriting homework that seems impossible, just have your child do it in crayon or you write the letters in "dots" and have him or her trace it, whatever; just get something on paper at this point to help the school team know where he/she's at and how the OT should plan to help. FYI, that kindergarten homework isn't graded.*

* Edited to add: At least, it's not graded in the way adults think about grades. I remember last year the teachers reassured us about the pages where the kids are supposed to write a certain number and then draw that number of things not once but twice; the important concept is the number, they said, not whether or not they DRAW it, so have them use stickers or a stamp or whatever, just have them do something in the box that number of times. Whew.

My son could barely write letters when he started K last fall. (He's in 1st grade now.) And the school therapist who did his intake evaluation didn't even know how many he COULD write, which was only a few, because he would.not.sit.still and focus to do more than, like, 2 letters for her. He HATED writing. It's still hard for him but getting better. He's far from where he started... but I thought he'd n-e-v-e-r get here!

Not talking, sitting still, and doing what someone else wanted him to do were rough concepts for my son. To be honest, because I knew the school days were hard for him, I tried to make the rest of his life as easy as possible last year.

I feel like my son was the worst behaved in his K class, but I didn't get much feedback from the teachers about his (mis)behavior unless I asked about something -- then I'd get an "Oh, yeah, he does XYZ" would come out.. At least one of the other Nest parents in that class wasn't happy with the speed of response to her notes (a day or so, which is an eternity in Nest Parent time, or maybe longer -- I can't remember). I'd suggest asking questions in an "I was just wondering..." sort of way!

My son really became attached to his special-ed teacher, but I wasn't in as love with her. At first she was really understated, low-key, nothing was a big problem, and suddenly--NOT. She was brusque and matter-of-fact, not taking into account how sensitive our kids can be. And it takes a lot for me to say that-- I mean, I want him to be respectful of the teachers, but I expect them to treat him with dignity too. It was almost like somebody evaluated her and told her to be tougher or something.

In her defense -- my son poked her IN THE FACE with a pencil in the spring --so they'd been working with him for many months, right? -- like, 2 weeks before her wedding. Way to go, eh?? Brilliant child, yeah. Fortunately, he did not break the skin, but I say it to let you know that they've seen some bad behavior. (And, if my husband's cynical theory about teachers is at all true, maybe, just maybe it ticked her off.)

On the flip side, our social worker was really supportive. Around that same time in the winter/spring I was having a lot of discipline problems at home with my son and she helped me brainstorm solutions. Plus she just listened and sympathized and told me I wasn't crazy. She's also a great way to avoid accosting/ bombarding/ haranguing the teachers, let her take the questions to them.

We did get a schedule of their day, but I'm not sure it was right away. Certainly you could ask. I'm not sure they understand how LITTLE feedback some of us get from our kids. I tried to convey how helpful it was to get any shred of info about his day, so I could ask a prompting question -- like, "How was art?" or "What did you do at center time?"

Even though it's mid-September, it's still really early in the school year. They're still getting the kids familiar with the schedule, so sending it home to us is secondary to that. And for that focus on the classroom, I am grateful.

For us, every day matters. The school-based members of the team take a much longer-term view: What can we do between now and June to help this child succeed in this setting? And remember, for better and worse, you are at a NYC public school. While I think at times the program is hampered by the very behemoth that hosts it, I also think there are a lot of reasons they'd like to see the program succeed.

Hang in there!

Summer Birthday Boys

2008-09-11T10:40:00.003-04:00

I confess that I rarely skim the news headlines, let alone click on news bloggers like Ada Calhoun, but her post today led me to this post by a Brooklyn-to-Texas mom who encountered "redshirting," which is the concept of holding your child (mostly boys) with a summer birthday back from kindergarten for a year --so they're 6, not 5 -- in order to give them an advantage, primarily social.

Now, the writer, Holly Korbey, specifically says that it's not aimed at children with developmental delays, and I know that. But isn't it ironic that my son, who clearly has a social delay and not an academic one, was pushed to start at barely-5 (his birthday is early September), and that at least 2 of his same-dx classmates have November or December birthdays? Wouldn't the redshirting idea have benefited them? (DuckyBoy also had fine-motor, gross-motor, and and speech delays at the end of last year. But that's dealt with separately no matter what.)

I guess they haven't heard of red-shirting here in Queens, at least not in the public schools. Maybe because the sports ain't the big deal they are in Texas, so a bigger boy doesn't matter as much. But sports are big in NYC parochial schools; is redshirting endemic there? I wonder.

There was certainly no mention to me of redshirting my son for his social benefit. My experience was one long cascade of interventions (to borrow a labor-and-delivery phrase): Classify him and slot him into a program where they can Work with Him on His Social Skills to the tune of $1mil a year.

And that social skills work is something I'm a bit leery about right now. I'm trying to be open-minded for this new school year, I think a different person is in charge of the social skills group sessions for first grade than who did it for them in kindergarten. Because last year, from the little I heard about it, those sessions sometimes seemed more like social skills torture than a positive peer learning experience. Some days, just walking into school is enough social torture (different link!) for my son; these sessions should be encouraging him to see how much Fun! It! Is! to interact with other kids. (Instead of just interacting with ME. I know I'm fun, but gimme a break! I thought he'd have outgrown this! Actually, yesterday he played with 2 kids from his class on the playground after school. They had a whole scenario going. It was great.)

Husband is always struck by the irony of putting all the kids with social problems together in a group with the idea of helping them interact better. Aren't there other models, like bringing in some peer buddies? I'm pleased with home much effort, professionalism, and enthusiasm the therapists at our school bring to their work; just wishing/hoping they will see when something's not working and break the mold.

Oh, wait, that's what I expect to be one of my son's strengths, not his teachers'.

Is it reasonable to expect adults who are followers of convention (certifiably so, since they have agreed to work for the behemoth organization known as the NYC Board of Education) to think out of the box and suggest, make, or even try approaches that are not part of the approved approach for this population?

In my mind, the jury's still out on that one.

Bathroom Blues

2008-09-06T15:34:00.004-04:00

Ironically, someone on the message board for Nest parents started a thread about toileting issues the very same day I encountered a bathroom situation with DuckyBoy at school.

The net is that many of us with the littlest kids have toileting issues -- ranging from getting distracted and forgetting to go, to not knowing how to clean themselves, to being afraid of auto-flush toilets.

I was at DB's school for his birthday party, which went fine -- he handed out the plates, I did cups and napkins, teachers and assorted therapists handed out food, and he did just fine. Which is the best I hope for in this type of scenario.

But afterwards, during Writing workshop, he felt the urge to go. Number 2. Which he's had to do for several days now.

Number 1 is no problem for him at school. The kid's got a big bladder and he's not afraid to use it. But Number 2 we're having a bit of a control issue about, I think. It's time for mommy to stop sitting with him and reading to him at bathroom time, I think, for one thing. But I digress.

Obviously I couldn't go into the boy's room with him. I thought to myself the teacher might let me be the buddy who walked him down the hall to go, but when he told her he had to go, she asked another boy to "take him." (I didn't especially like her choice of wording, but I guess since DB had to go and the other boy didn't, it was one-sided like that.)

He wigged out a little bit, said he wanted me to take him, and she (to her credit) calmly explained that boys go with boys and girls go with girls. He argued with her a little bit, since this is a different rule than they had in kindergarten (when an opposite-sex buddy could wait outside the bathroom for you). But he must've really wanted to try to go, since he acquiesced.

He was still fussed up about it, I could hear him telling the buddy "don't come in!", so maybe he was embarrassed. OK, so whatever, I'm pleased he overcame his issues and was going to try to go. (To be kinda graphic, however poorly he cleaned himself, it wouldn't any worse than the streaks that he's getting from not going.)

But. They were back pretty quickly, and he whispered to me than one toilet was covered (by a garbage bag or garbage can, I don't remember which he said), clearly out of order; and the other had, uh, contents in it already and, well, with his sensitivity to smells and anything that might be gross, he wasn't about to go near that! (Husband rather matter-of-factly said he's going to have to learn to flush. I suppose it's true, especially since DB abhores those automatic toilets, and those are the other option! What is it about public toilets that people of all ages don't seem to feel the need to clean up after themselves?)

So, after all that effort just to GET to the bathroom, he still felt unable to go.

Does a 6-year-old really need this?

Postscript, it's now Saturday afternoon and after several underwear changes he has, finally, gone. After I refused to sit with him yet another time and left him, with some encouragement by Dad to both of us, alone in the bathroom (with, like, a thousand books, I might add). Whew.

First Day of First Grade

2008-09-02T12:46:00.002-04:00

Day 1, post-dropoff:
So far, so good. Since I drove DB, I walked him to his classroom; turns out the protocol is for him to go to the cafeteria, but either nobody bothered to clarify that for me last year or I was never early enough for it to matter, so what-ev-er.

As we waited for DB's teachers, we saw his friend S. go past to her classroom; they both looked a bit stricken at the reminder that they're not in the same class, and DB stomped around for a moment but then held it together.

Once the teachers arrived with 2 other early-session students, he gave the teacher he knows a nice hello, and then with a prompt from her said hello to the other teacher, and then started to fall apart a bit. Time for Mom to bail!!

He was fixating on the idea of a class pet. All the first-grade books we read happened to have a rabbit as a class pet, either integral or tangential to the story. (Thanks a lot, Scholastic. Way to set us up.) So he was upset to hear they do not (yet) have a class pet, and wasn't getting the subtle cues that it was something they would discuss as a class and possibly acquire.

*Sigh.* If I'd know that would be the issue, we could've talked about it more on the drive. Oh, well. Whaddaya gonna do. He was overall pretty happy this morning, partly scared partly excited.

I hope the excitement lasts; I want to be engaged with his education in a way this year that helps expand on that and not devolve into a drudgery for him, which I think happened last year.

We looked at the daily schedule while we waited for someone to arrive in the classroom; he wasn't happy to see Writing Workshop, and I reminded him how good a storyteller he is. Then asked what he didn't like about it, and he was clear: "Writing down all the words." Which is what I suspected -- it's a fine-motor issue. I wish I knew how to help with that. Maybe the OT can help.

Da Bus
And, a first-day post would not be complete without everyone's favorite subject, The BUS!!

Our OPT letter states the bus route starts at 7 am and we are the 5th pickup, so since Day 1 is always a mess I figured it would be at least 7:30. Even though I was planning to drive DB today, I asked Husband to be downstairs to wait and see what time the bus rolled by.

At 7:15, when Husband was still in the shower, I saw the bus pull up. So I went downstairs and spoke to the driver, who said to be ready at 7:05 tomorrow. Yikes, I think, but I say OK. meanwhile the bus is empty. Maybe there's one kid who's so small I can't see him/her; I'm not sure what the matron said exactly.

HOURS later at school -- 9:30 to be exact -- I chatted with the bus coordinator and told her how happy I was the bus arrived at a reasonable time today. When I told her which route number, she exclaimed, "That one's not here yet!!"

Where could he have been? He was at my house at 7:15!! Thank God I didn't put DB on the bus today!

He did arrive minutes later, apparently carrying all the rest of the children who hadn't yet arrived at school, and it turns out there are 12 names on the route. I know at least 3 are not regular morning pickups, but that leaves 8 plus DB. I'm scared to put him on tomorrow!

I cannot in good conscience put my child on a bus in local stop-and-go traffic for potentially 2 hrs 15 mins!! He'll need breakfast and, even more importantly, a bathroom in that time frame!!

Maybe I'll have a chance to speak to the driver this afternoon at pickup. I'll keep you posted.

End-of-August Update

2008-08-28T22:48:00.003-04:00

So, what, am I silly to have started a blog about schooling in the summer? Oh well, everything starts up again next week. NEW! This year, with PTA!!

So far we know DB's teachers -- one of last year's first grade teachers, who comes highly recommended via mom J, and one of last year's Nest K teachers, NOT one of DB's teachers, so that's interesting and I'm neutral/happy about it.

We've got our bus route, and at least 2 kids he knows are on it, which bodes well and probably means they've got the same group together or mostly that. Which is good for 2 reasons:

1, the bus may only go to this school and not make stops at multiple campuses and take f-o-r-e-v-e-r to get them to school
and
2, at least one of the kids I know has an air-conditioned bus stipulation on his IEP, so DB won't be subject to the September (and spring) heat. Yay!

Misunderstandings

2008-08-01T11:18:00.004-04:00

DB has a lot of misunderstandings with what people say. Sometimes he hears the opposite of what is meant -- he's like the uber-personification of the reason why to word things the way you want them done, instead of saying "Don't do this..."

If I say, "I don't want to be late," he'll say, "WE'RE GOING TO BE LATE?!?!?"

He also hears things at school that perhaps aren't meant for him, or are meant facetiously, and doesn't get the joke.

I thought we weren't going to have too much trouble with that as he totally gets that type of joke at home: Saying things like, "Don't you laugh!!" to actually make him laugh. And he gets it outside home sometimes too, but maybe it depends on the situation -- who says it, when, whether he can tell from other cues that it's a joke.

This morning, though, the last day of summer camp he's been complaining "is ruining his summer," he said his teachers told him not to laugh or smile at camp. Now, I have my skepticism about their methods, but I'm 99-3/4 percent sure that wouldn't have been said seriously. When I suggested perhaps they were joking, he got quite upset and insisted, "I heard them. It was serious."

So, I asked if he'd like to me to mention it to them this morning at drop-off, and he said yes. The therapist I spoke to agreed, it certainly might have been said in jest, and said she would speak to him about it.

But the poor guy! No wonder he thinks camp is miserable! And how can we help him??

It's not exactly something I can put on his IEP, for what would I say? "Speak differently to him in case he doesn't get the joke," or "Detail very literally what you're going to do."

DH had a good point that I can't really change the teachers' speech, they've got a classfull of kids to interact with. But it's happening more and more; there must be some way to point it out so they're aware that it happens and can perhaps check in from time to time about what rules he's operating on.

DH suggested we ask him each evening, "Did anyone say anything upsetting at school today?" I think maybe also, "Did you hear about any new rules for school today?"

I did express to DB that he should tell us when he hears things that upset him, so we can help by bringing it to his teachers' attention.

It may also be a personality thing, and maybe the mix next year will not cause him so much consternation. I know when the cluster teacher has been able to interact with him more (She's not at the summer camp), there was less of this, so she must have been able to see these issues when they arose.

My other reason for wanting to bring it to the educators' attention -- other than to help him better tolerate the school environment -- is because they tend to brush it off, "Oh, he just misunderstood." As one incident, yeah, it's no big deal, but 2 things:

1. This might have happened weeks ago and he's been thinking about it this whole 5 weeks!

2. As a pattern, he's not getting the real point, he's distracted by what he thought he heard and not by what they mean. (Like when he thought his teacher threw Starry into the pre-K room; he was focused on that, instead of on the fact that she put it there as a consequence of his behavior.)

I feel like they undervalue the impact a misunderstanding has on him, as a person, and as the special-needs student they are supposed to be trying to understand and work with. This IS one of his special-needs issues.

More Bus Thoughts

2008-07-28T08:35:00.003-04:00

I got a smile on the bus this morning!

Usually this feels like the hardest part of his day, separation from Mommy. Before the summer ends and I forget over the next month what I want to say to the matron for the fall, these are the issues we deal with on the bus:

-- Being able to take a moment to say goodbye or listen to the one-last-thing he thinks of to say can have a real impact on how the rest of this day goes (or, so I like to think). Since we live at a difficult intersection, drivers are loathe to give me that moment. And it's not even every day.

-- Being able to wave goodbye is also helpful. He doesn't know/remember that I can't see where he goes once he gets on board, so I don't know which side to stand on to wave. It would help if the matron could encourage him to stay in one regular seat. (He's been back and forth this summer.)

I guess that's not so much.

Oh, also, sometimes he is in a particularly bad mood, by which I mean not particularly glad to be taken away from home for several hours to have to remain upright with his shoes on and few breaks in requirements for his attention (well, when I put it that way...).

So, sometimes he is a bit verbally belligerent. A few times he's yelled at the bus as it approached, GO AWAY, BUS! And I always remind him, he can't yell at the driver and matron, they are doing their job. I get so worried he'll take it out on them -- he has no idea how his negative behavior can impact how they treat him!

I think the social story about the safety issue of riding the bus helped a lot with him not giving the matron a hard time. (He hit or kicked her earlier in the year, hard enough that she had to write it up, and she was certainly not writeup-happy.) I'll have to remember to get that out after the August break.

Sometimes he takes out his frustration about going to school on me, yelling out the window, but the school-year matron told me that was an act -- by the time they turned the corner he was fine, she told me. Which made it slightly more tolerable. I much prefer a smile!!

Talking Like the Adults

2008-07-27T10:29:00.003-04:00

My son doesn't see the difference between adults and him. So when adults speak to him a certain way, he takes that as the way he also should speak to other people. So lately he's been saying things to me that sound like a teacher talking to a student.

Statements like "That was a good try!" are fine. Others, such as, "You keep playing this while I go do something else," don't work so well.

I also am sure I'm guilty of speaking to him in a way I'd prefer not to be spoken to, as some of the things he says to me sound familiar, like "[We'll do that thing you want to do] Right after I [fill in the blank]."

He has no sense of what needs to be done each day -- for example, at bedtime: jammies on, brush teeth, one book -- and argues it every day. What helps with this? Visual schedule? It's not that he doesn't know what's coming, he doesn't care or doesn't want to be bothered to think. I can't imagine what's going to happen at school when the supports are pulled back a bit. He just won't do anything.

I'm a bit down today, once again a backyard party has highlighted the differences between him and the other children. He actually did well, there was a set of toys he liked playing with, and he tried to interest other kids in playing with it with him, but they all wanted to be outside in the sprinkler, which he wanted to no part of.

That reminds me, we got an online slideshow of 43 photos from his school-camp's day in the playground sprinkler, and he's in one shot. The back of his head. And he's not in the sprinkler.

I guess it just makes me sad that he's not able to enjoy the summertime activities that are soo much fun for other children. Ones that I remember. And I don't know how to find what would be fun for him. Staying inside watching TV and playing on the computer just aren't a life.

He did make up a game at the end of the party yesterday with 2 other kids and their dad, and the 4 of them had fun and then Husband and I played it with him as well. He was able to let the boy and girl have a turn, and made up the rules they all played with.

It's hard for me to see the 1/2 hour win when the party was 4 hours in. Maybe it takes him that long to warm up? I don't know.

Advice: Best Taken with a Grain of Salt

2008-07-21T08:31:00.007-04:00

I find it hard to know when the advice I get from the professionals at DB's school is generic parenting advice or given through the lens of their special-ed, or specifically HFA, training. I suppose I should simply always say to myself "Hmm, she's probably giving me standard parenting advice" if they mention it's coming from their own parenting experience (of non-spectrum children).

Because really, if it worked for a typical child, I think there's a less-than-50-percent shot it will work for DB. (I was going to write, "It won't work for him" but that's actually not true. It's just not AS likely to work for him as it would be to succeed with a typical. Oh, haha, look which letters are in all caps --"AS," like Aspergers Syndrome. The irony.)

In terms of years, I have more experience with a member of this population than some of them do. They've had more training, but I've got almost 6 years under my belt. OK, 4 if you factor in we didn't know for a couple of years.

Anyway, this study on sleep problems in children with autism reminds me of a chat I had earlier in the year with one of my favorite of DB's teachers.

I was asking /telling her about DB's propensity to get up in the middle of the night, every night, and come into our room with some "need"-- music on, music off, more light, cold(er) water, he was cold, can't get back to sleep.

She suggested what had worked for her: putting a sleeping bag on the floor next to our bed, and telling him if he didn't want to go back to his bed, he could sleep there. The idea is you gradually remove the pillow, then the sleeping bag, so it's eventually more comfortable for the child to go back to, then ideally stay in, their own bed.

Well, I was skeptical, but I tried it. As I expected, DB had no interest in that idea. His whole reason of coming in was to snuggle next to me, not be near me. The floor? Not gonna happen. It was easier to just walk him back to his bed than get him interested in sleeping in or on that sleeping bag. After all, the whole point was that I didn't want to have to wake up, let alone get up, so if I had to wake up and convince him to lie on the floor next to me, I might as well not have made the change.

As an aside: The most interesting finding of the sleep study, to me, was the increased stress level of the parents with autistic child. We struggle so much to help our child through the day, we need our sleep! Or maybe it's a marker of a genetic component.

Eventually I came up with my own reward system. DB really wanted a Scholastic book club that involved a book, a sticker book, and a plush toy arriving each month via mail. So I said, Yes, I'll sign up for it, but in order to open each package, you'll have to have stayed in your own bed for almost all of the previous 3-4 weeks. And I put up a calendar and marked off each night.

It was amazing. With a reminder each night, the night visits stopped almost immediately and only occur now when he really is cold (sometimes we leave the a/c cranked up too high) or has a bad dream or sometimes on a night when a babysitter has put him to bed.

(As a postscript -- the book club screwed us by cancelling itself 3 months in to the 10-month set. I was able to purchase the rest of the set as a package, and only realized afterwards that I should have said NOTHING to DB about it and simply pulled a new one one out every 4 weeks. Because, after the whole set arrived, there was some backsliding. It's since stopped since we said we could take the toys away! It was still a bit of a bummer, though, since it was going to be something he would be able to work toward for almost a whole year. I thought I could trust Scholastic more than that! But at least they did send me the remainder of the set-- boy, did I have a dandy letter prepared in the event they said no.)

Anyway, the advice that worked for a typical did not for DB.

This topic also reminds me of a school staffer who left partway through the year; a nice person, but had little or no training in or understanding of the AS population she was dealing with.

"He's so cute, he's so smart" were her standard comments about my son.

Um, yeah, that's why he's in this program!, I always wanted to say. Any issue I ever brought to her was filtered through years of experience with typicals, as an educator and a mother. It was like I could see the wheels turn and her brain spit out Answer #7298, Advice for Parent Dealing with Topic X.

More specifically, I think it was years of experience with New York City typicals, who I get the impression have the dubious luck of being lumped together and dealt with via a single methodology more often than not, due to their sheer numbers.

Which makes me skeptical they can effect enough change in thinking to properly deal with this population within the public-schooling arena. But I remain hopeful -- and watchful. As I said above, the teacher who offered the sleeping-bag advice is absolutely one of my favorites from his first year in NEST-- she "got" him and his issues and really helped him grow without making him feel wrong or bad for who he is and how he tends to think.

And that's a very good thing.

Public School Busing

2008-07-15T12:47:00.009-04:00

What to say about buses? My friend C is having trouble getting a para for her daughter's bus. The child has to sit for 20-30 minute after arrival at the school before someone comes to accompany the children into the building; not surprisingly, her child balks at this.

It sounds like the driver and matron understand why the problem is occurring -- they just can't do anything about it and they've suggested the para, who could take daughter off the bus and walk around with her to fill the time. C is getting pushback from the bureaucrats she has to go through to get it approved.

I remember one day back in preschool I forgot DB's lunch and, since I have the luxury of doing this, drove to school to drop it off. His bus was sitting right up the block from school, just idling, waiting for the folks who walk the kids in to be ready for them.

Does this make sense to anybody? Let's fill up a bus with small children who already have behavior issues, anxiety issues, space issues, sensory issues, and put them on a school bus with 5-10 other kids who have the same issues, with 2 untrained people, and let them sit for a while?? This is how we'll start their day?? Wouldn't happen if Bloomberg had a special-needs kid.

Which reminds me, it is now mandated that all NYC taxicabs have GPS and air-conditioning. Shouldn't our school children get the same, at minimum?

DB's summer bus has bigger kids, from other schools, who disregard basic rules --sit instead of lie down with your feet on the windows; sit instead of walking around; wear your seatbelt. How are these good roles models, which the idea is to surround our children with? Hmm. Last year on the first day of summer school a large bus filled with high schoolers -- special-ed high schoolers, mind you -- pulled up for my friend's kindergartener. Yeah, right.

As for air conditioning, we had it at first this summer, then that bus got replaced with an older one without working a/c. The only way to make sure your child is on an air-conditioned bus is to have a medical reason they need it, like asthma, and get a doctor's note. I didn't want to make up a problem DB doesn't have -- and, if I'd known he was no longer on a bus with a/c I wouldn't driven him that hot week! But he's also last-on in the morning and first-off in the afternoon, so it's not too bad, less than half an hour. It takes that length of time for the a/c in our car to reach the backseat anyway.

But it's the principle: The bus companies play fast-and-loose with the regulations, swapping buses for inspections and then hauling the old crummy ones back out. I heard one story that the driver was given a new bus to drive past the inspectors and told to drive around the corner and wait -- for an old junker to drive on his run!

What I don't get is that these buses have license plates and bus numbers. Are they magnetic plates and peel-and-stick numbers? Or don't the inspectors really care (or worse yet, are they in on the scam)?

I understand that having a bus company is probably a low-profit scenario, but this is not a game. These are children, and specifically, children who often cannot tell you if something is wrong. I was talking with a driver and matron the other day and one of them said that, unfortunately, something is going to have to happen to someone before anything changes. I find that so sad.

But let me end on a happy note: I am finishing this post on July 28, and I got a SMILE from the bus window this morning! Wow. I feel like I got a glimpse of what his life could be like if he had a positive attitude (and had positive interactions to help bolster it); I pray that his day continues in a positive way.

The Penguin's Lament

2008-07-14T20:55:00.004-04:00

Poor penguin. When I picked my son up from school today, he asked me to open his backpack "so Starry [the penguin] can tell you about his rough day."

According to my son, Starry got thrown into the [empty, I presume] pre-K room, which would be the room across the hall. Mumbledy mumbledy, there may have been some action on my son's part first -- like, his being overly protective/possessive of said penguin, then some hitting of the special-ed teacher ... which was mentioned as a possibility in the second telling of the story, but was quickly replaced by "I don't know if I did that or not." (Which is, in fact, progress compared to the denial and "I don't remember" that usually occurs from the start.)

The special-ed teacher is the one who, allegedly, threw the penguin. Certainly she had precedent: I saw my son throw the penguin across his classroom when he walked in the room and saw them cleaning up breakfast. Given his walk in (see previous post), that was the best he could do.

Nothing in the notebook. No sign of the behavior chart I made, though maybe I'll get that at the end of the week. (I'm actually not sure where we left that issue, the teacher and I.) So he got his stop at 7-11 for Hi-C and chips, and gymnastics class, and a playdate, and TV and nuggets and fries and his request granted to watch TV in the air conditioning in mom and dad's bedroom when he got home. How can I follow up with discipline, or reinforce a lesson, if I don't know what, if anything, happened?

Son obviously had a rough day too; he never asks to lie on our bed, and he not only did that but later asked for his blanket. He did well at gymnastics, though, and enjoyed his playdate so much he didn't want to leave. Which makes me wonder whether the school environment of "Let's force the issue" is so great for him.

This program is specifically geared to high-functioning autism. One of the hallmarks of Asperger's and some with PDD is a desire to interact with others, but difficulty carrying it out. How does it help them when the adults model not being respectful to children who think differently?

Why can't the emphasis be on boosting their strengths, instead of poking their sore spots? If it is, I certainly don't hear about it.

Pushing Buttons

2008-07-14T09:38:00.003-04:00

OK, so the bus left without DuckyBoy this morning. Not that he missed it, but it left without him getting on.

Our neighbor, who attends a different school, also rides this bus on the summer route. The driver made it clear he wants us to put the boys on the bus at the same time, so he only has to pull out and stop traffic once.

I saw the bus come around the corner, so I hustled DB downstairs. Since our busmate wasn't there yet, we waited in the vestibule. I thought the driver saw us, as we exchanged glances and he made the "palms-up" motion like, "Where's the other one."

We live in an awkward spot; the driver had to pull forward to let a large bus behind him be able to turn the corner. I saw him pull up and stop, so sat down with DB to wait just another minute or two. (Of course I left my cell phone upstairs, couldn't call the neighbor OR the driver.) Oh, and it's raining this morning -- so it's not like I was eager to stand out on the sidewalk.

I rang the neighbor's buzzer and heard static back -- telling me only that someone was home.

At the time I'd decided, I stood up to walk DB down the street to where I thought the bus was waiting; just then the neighbor came downstairs. I walked the 2 boys down the block, but -- no bus.

DB handled it pretty well -- we had been able to talk about what might happen while we waited for our neighbor.

The other boy's mom laid it on pretty thick to her son (one of those lesson moments!) --how he'd made DB miss the bus, and then she made him apologize to DB. Whereupon DB got mad, or acted it, anyway -- "I"m angry because I missed the bus!" -- which made the other boy cry... oh, brother.

Anyway we got in our car, and DB was doing fine. All the way to school, all was well.

Now, we had a situation not too long ago in the past upon arrival at school when there has been a miscommunication and he's been basically unceremoniously ripped away from me. The first person he know we met, she said hello and he pretty politely said, "I want my mom to walk me to class." That interaction was fine.

Just inside the door, the speech therapist said good morning -- she did not make a motion to walk him in, just said good morning --and he grumbled, "I want my mom to walk me in!" Not so nice, he's clearly getting stressed.

She then grabbed the stuffed animal he was carrying and said, "Oh, who's your friend, who'd you bring today."

I don't blame him for being angry she grabbed it! (Do typical kids like/tolerate that? I don't know because I wasn't one. Is it supposed to be playful?) He held it together somewhat, when she asked the animal's name again he told her. She didn't hear him and he repeated it, louder and a bit angrier, but still holding it together.

He went on up the stairs and I said to her something like, "He wants to make sure I walk him to class," or "He's concerned about me being able to walk him to class," or something like that.

She said, in that tone they use with the kids, "Maybe you shouldn't walk him in then."

Huh? I guess I need to ask her to say more about that. I don't know if that tone was for me or him (FYI, it went over his head). I did ask her, on the way out, if I should take him once a week or something to get him accustomed to the idea? She felt whatever's the easiest transition for him, which, I agree, is the bus.

But I've got to be able to take him him -- there are days when I have a meeting in the morning at school, and he likes to get a ride, so I want to be able to drive him!

And why, if something is difficult for him, shouldn't we try to make it easier? Why is it OK for her to push his buttons by grabbing his stuffed animal, but not OK for me to want to teach him a better way to walk in?

I'm just going to be like M's mom, who made it clear at the beginning of the year last year that she would walk him to his room. (She drives him every day.) That way DB will know and can let go of that stress, and we can see how the other interactions go.

Tomorrow's Note for the Teachers

2008-07-06T21:39:00.001-04:00

Everything I read about educating children with autism says that a strong school-home partnership greatly increases the child's chance of success. I have mixed emotions about the feedback (and often what feels to me like lack of same) I get from my son's teachers, but nevertheless I am going to strive to be complete and out-there with everything.

One trouble I have is that, if I don't hear it from the teachers, I often hear nothing about his day. And since he is my only child I don't know if that is typical, or personality, or what, but I never hear much from teachers (preschool included), and always feel like they think I should be more in the loop.

Do I not ask him in the right way? Why am I gonna ask just to hear "Fine" and "I don't know" from a 5-year-old? And how am I gonna prompt if I've been given no hints to prompt with?

Anyway, here's my note for tomorrow -- Day 4 of "summer camp," aka summer session, wherein the counselors happen to be the 2 kindergarten teachers he just finished the year with. (The other parents from his old class are delighted; frankly, I was hoping for a little change of pace for him to help him ease into the idea of different teachers for the fall.)

Good morning, Teachers – I mean, Camp Counselors!

[Son's] notebook didn’t come home Friday, so not sure if any notes are in there, other than Mrs. R mentioned at pickup the need for rice milk for breakfast, so it’s in his backpack.

From what he told me, he did not have a good day on Friday -- the substitute teachers [mind you, both subs are teachers he knows well] threw him off, and he mentioned something else I told him I’d tell you about so you can talk with him about:

He said [Child E] called him [by another child's name] by accident, then continued to call him that name for the rest of the day “on purpose” (his view of it). He was very touchy about it even Sunday night, when I tried (at his request) to tell a story about someone else getting called the wrong name… shortly into the story he dissolved into a 40-pound mass of whininess.

FYI, he’s also still very nervous about first grade, but can’t articulate why (even when I offer prompts, like “Is it because of X or Y…”). He did seem to relate a bit to “Is it because you already know how to read” – after I asked that he said, “Yeah, I’m afraid they’ll try to teach me how to read.”

Also FYI, we’re having a problem with him withholding b.m.’s, the past few days. That hasn’t happened in a long time.

Don'tcha just think that'll make their day Monday morning?? Is it too detailed? Am I going to hear anything back? I just never feel like what I do is right.