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Monday, July 26, 2010

Battles

So, there is an almost daily battle in this house @ 3 or 4 pm--which is "TV Permitted" time. It goes something like this...

Ben(in BenjiSpeak™): I want a movie

Mom: OK! What would you like to watch?

Ben: I want movie?

Mom: Yes. Which movie would you like to watch?

Ben: Watch movie, please?

Mom: (takes a breath) Ok, Benji. What would you like to watch?

Ben: (crying/whining) movie please!

Mom: (sigh) Benji? What movie? Would you like (insert movie name here)?

Ben: no

(repeat last two lines with different movie titles until you start rooting AGAINST the Lorax or find yourself wishing the man in the yellow hat would make a batch of monkey stew!)

Mom: OK. Let's try this. (Mom grabs the remote and turns on random movie from collection.)

Ben: No! All done (insert obviously asinine movie that he has yearned for before as if it were hoarded water in mommy-caused desert)

Now at this point I turn off the TV and tell him that it won't come back on until he tells me what he'd like to watch. This has two effects:

a) he shuts down and runs off crying
or
b) he cries right there for a few minutes and then, after a few minutes of silence, mentions a movie in the quietest voice he has. Like a shy secret, or the second line of clumsy expositional dialogue in teen angst pilot about vampires or how hard it is to live in a rich zipcode.

So then I have to get him to repeat the movie's name five or ten million times so I can understand him. Once I do, said show is turned on (he always asks with a quiet please), and he is happy for a few minutes. These minutes often boast a delightful waft of coconut rum, and are always measured in what I like to refer to as "shaker time."

Now, for those of you who are Super Parents® and looked at that dialogue thinking, "Well, why don't you just do (insert unsolicited parental advice here)," there is a reason I drag this out. We ARE working on his communication, and as such, when he is trying to tell me something, I try to help him do just that. Yeah, it's about as much fun as emptying the diaper pail, or chaperoning a junior prom, but a gal's gotta do what a gal's gotta do.

The obvious problem here is that Ben doesn't understand the concept that "movie" is a generic term, which contains many titles. I try to spend a little time during this battle--if he's not whiny/frustrated/screaming like a banshee to try to explain the concept. Repetition is key, and I can see his wheels turning when I talk--it's just that some of the words coming out of my mouth don't really register. Thus repetition. Eventually all those words will make it to his brain and the light bulb will go off. (This is how we got "please" into his vocabulary--although it's not quite working for "Thank you".) When I get result B, I know that it's working, but he's still unsure of it all--thus the quiet voice.

But learning moment aside, this can be a frustrating moment for both Benji & mommy. Especially if mommy has had a long day, is hormonal, or needs a drink. Then that conversation is a bit of a hair pulling exercise in impatience. And mixology.

This was the time to use some research. In Autistic circles (or ovals...sometimes ellipses, but I digress), one becomes familiar with the "visual schedule". Since many people with autism "think in pictures", sometimes it helps to create something visual to help kids (and adults!) along. It might be as simple as a picture of a toilet and then another picture of the sink in a bathroom, to "remind" kids to wash their hands after potty. Or there may be multiple pictures of very step in the potty procedure. (yes, the picture for "make pee-pee is...interesting) Like with any kid--typical or no--it depends on your kid. Generally, Ben does well with verbal cues, so I haven't really engaged the visual schedule. I can usually give him simple one step commands like " go get your shoes" or "hand mommy that vodka bottle" (although we are venturing into multiple step commands as well--Mixed drinks, here we come!), and he'll follow along--well, as much as a 3yo listens to you tell him to put his toys away, take his shoes off, or please stop playing with that coconut bra, it's for mommy! Well, really it's for daddy. OK, a little for mommy.

So, as I pulled my hair out for the gazillionth time, I realized it was time for a liquor store run and an attempt at the visual schedule. Ben knows he wants to watch a movie, but he doesn't remember all the movies we have, and frankly mommy has been so good at reading his mind for so long, he is confused as to why he needs to start clarifying his needs.

So I sat down at the computer and saved jpegs of all the movies we have on our TiVos® and DVRs. (Hey, Mr. Mommy works in the industry--we have A LOT of TVs in the house. It's all tax-deductible!) I printed them up on photo paper, ran them through my trusty laminating machine, and currently these cards are in a pocket chart on the wall. Eventually I'll have a board with velcro next to the TV where he can look and choose, but for now, the pocket chart will do. He's been really excited about it so far--mostly from a labeling point of view. He loves bringing me a card and telling me what it is. It's great to see, even if I don't need to be reminded at this point which one is Wall-E and which one is EVA (eeeeeeeeevaaaaah!). And he has used the movie board correctly a few times as well, to request either Olivia (his new favorite cartoon) or The Bee Movie. Perhaps we should add a "NAP" card.

Of course, now the new lesson begins:

Ben: Bee movie, please?

Mommy: no. No TV for now. Later.

Ben: (whining) Bee movie?

Mommy: not right now. Maybe later. Now its time for (insert approved mommy activity here)

Ben: NO! No (insert obviously not toddler approved activity) Bee movie please! (crying)

Mommy: No. Let's go get mommy a drink instead...

The Muppets won't take Manhattan as strong as I like to mix mine.

Tuesday, July 20, 2010

Future Bullies of America

So, this past weekend, we took the squirt to a birthday party in the valley for one of his (and our) friends. True to form, he showed absolutely no interest in the party, but since it was in a park, he was interested in the adjacent monkey bars/slide/sandbox combo. Hell, add a wetbar, and who wouldn't be, right?

He previously hasn't been too interested in sand--and we thought maybe he had acquired his father's hatred for the substance, but Saturday proved us wrong. I think at one point he was just rolling around in it. Zoe (said birthday girl) had a cool toy that would turn wheels when sand was put into it, and I think he played with that (after Zoe was done, of course) for a good 1/2 hour. Oddly enough, it was a toy I had contemplated purchasing on more than one occasion, but since he had shown no interest in the sand toys I had gotten him before, I figured that one would be a waste as well. Lesson learned. *adds to her to-do list*

But all birthday party and sand encounters aside, it was a playground event with some other kids that got under my skin--and made me wanna hurl verbal epithets at a couple of pathetic marmots.

Ok--lemme 'splain a little back story. I think I've pointed out that one of the ways Ben likes to engage kids is with a little rough-house. He's a boy--they do that. It's that contact that he likes. Sometimes he'll push (not hard) and sometimes he'll …well…or lack of a better word, "girlfight". It's hard to describe this visual--so bear with me. Imagine a big bucket of ping pong balls. Now imagine sticking both hands into that bucket and just mixing the balls up in a frenzy. This is sorta what Ben will do to another kid's hands or arms--as if he were going to play a frenzied game of "miss mary mack". (howz THAT for the old school reference?) That's usually when I have to step in and tell Ben to stop--which just confuses the poor boy, because he thought he was engaging a friend. I can see, in his mind, he is sharing a wonderful feeling of "mixing"--but little Kyler or Francis usually don't agree.

So anyway, back to the park. Ben is doing pretty well, taking his turn on the slide--not pushing, and enjoying the slide and the sand at the end of it. He hasn’t knocked anyone down or thrown sand in anyone's eyes, so I'm callin' it a good day. I turn to talk to my husband briefly, and then turn back to Ben, only to find him "mixing" it up with another kid--we'll call him Tanner McWhiney. A kid smaller than him--but prolly the same age. And before I can step in, said child runs to his mother--we'll call her Haley McSnooty, sitting on the other side of the playground.

I keep an eye on them to make sure she isn't gonna come over and chew me out--but she ain't getting' up from her well earned Starbucks sippin' spot. That spot was no doubt marked for weeks with careful urination and musk rubbings. It was prime real estate. Not to mention she's with another mommy friend(why not--let's call her Piper McSidekick). She says something to her son and sends him back out to play.

Ok--I'll give Haley the benefit of the doubt. She prolly told her son, as I would have, "well, stay away from him"--sage advice. But did little Tanner listen? What 3 year old does?

I walk over to Ben and give him a verbal reminder to take turns, be gentle and be nice. He then continues to go on the slide, and at the bottom, look for his new friend--who constantly runs back to mommy when Ben just looks at him. Haley is showing some annoyance with little Tanner, because she would much rather be sippin' her Macchiato and discussing her friend's bikini wax. She tells her son--"tell him not to hit"

What? Had she been paying attention, she'd see that my son hadn't laid a hand on hers since the "mix-up". (and honestly--even then he just smacked his hands. I'm not saying my kid was right, but come on--grow a pair) So what is little Tanner going to his mother and saying? And why is she lookin' at me as if I were the invading Hun army? I am quite obviously of valkyrie descent; I just left my horned hat in the car so as not to frighten the children...

Do I go get my kid, who at this point isn't engaging with anyone except the sand fairies? (seriously--it was EVERYWHERE) or do I stand back and let this scenario play out? I mean--little Tanner would run if Ben would even LOOK at him, so what were the chances that something would happen?

I think, ok--be proactive. I smile at the moms and say (rather loudly since they seem to be setting up residency or at least growing mold from their lack of movement) that Ben doesn’t understand those words and doesn't mean to be mean. He's just playing, and that I'm keeping an eye on it. *smile*

Snooty glances back. Great. So much for diplomacy. Skinny bitches. What? Too true?

The playing continues on. At this point my husband is at my side, no doubt recognizing the need to keep another set of eyes on Ben. And honestly, this puts me into a state of mind that bothers me most--apologizing for Ben. Not that I want him to ride roughshod over ever kid smaller than him, but this idea that I have to be the first to apologize for my kids' behavior when there are typical kids all around acting worse than he is get under my skin like a new tattoo needle. I know how important it is for Ben to be raised with good--no, GREAT manners. And on top of that, he is physically showing that he may well be bigger and stronger than a lot of kids, so I know that I will need to "gentle" him so that he doesn't take advantage of that strength other than in a good way. I am paying attention--I GET it. But when I have to watch my kid like a hawk, when other parents are letting their kids terrorize the playground, I get a little irate.

Anyway, Ben is climbing up onto the slide, which has two platforms that lead up to the slide. Tanner's little friend is on one of the platforms, and pushes Ben away when he climbs too close to her. Now, Ben likes pressure--he likes to be pushed, it makes him laugh. So he looked at this little girl and thought they were playing a game. So he pushed back--and when I say push, I don’t mean a hard shove--I mean a slow lean, if that makes sense. And he smiled and laughed. Anyone who knows him would say--hey look at that--he engaging that little girl! Yay! And little Tanner steps up and pushes Ben aside, which only made Ben laugh again. Ben then climbed up and away from the kids and went down the slide to play in the sand once again.

Little Tanner at this point says to his friend (loud enough for all adults around the playground to hear) "lets go fight that boy!". I look over at Haley and Piper--nothing. That must have either been some bikini wax to keep that conversation so strong, or they were drinking Starbuck's new "I'm too important to pay attention to others" caramel frappaccino. So I keep an eye on Tanner to see if he plans to follow through with his words. He grabs his friend, dragging her along and says it again.

Since Haley and Piper are showing no signs of consciousness or conscientiousness--both words being too long for their combined vocabulary--I step in. I reach Benji before they do and tell little Tanner that Benji doesn't know he's being rough--he just think he's having fun. This is how he plays sometimes. Fighting is NOT how we solve this. And the steam in Tanner's sails is deflated. He and his friend run off to their mommies--who still have not looked up from their conversation--although I can tell from their body language that they heard every word. That's ok ladies--I'll take a moment to parent your children--you just keep sipping your coffee.

I let Ben play a little longer before we made our goodbyes at the birthday party.

Now, I know--sure this is just a playground story, and what does it matter? They were just self involved women who paid no attention to their kids--what else is new in LA?

Except, while I've been educating myself not only about the disorder of ASD, I've also been scanning the message boards and chat rooms frequented by parents with children with Autism. You wanna know a common topic? Bullying. With their children as targets.

It makes sense. I read one article that used the herd euphemism: if you feed on the outskirts of the herd, you are open to predator attack. So of course kids that are "different" or "quirky" are the targets--they are often seen as without any protection. And when they lash out to protect themselves, they can often be blamed for the situation entirely. Autism has the misfortune of being a disorder that it not always "visible", and the adults in a school don't always know what's going on enough to know that Johnny may well have been within his rights to sock that kid. I've read news stories about Autistic kids being expelled or eve arrested for defending themselves, or placed into a situation that provoked a violent outburst.

And I'm not saying this is just an Autism problem--it's just the lens I'm looking through at present. I know a lot of kids have to deal with bullying--typical or not. And it has really gotten out of hand. I worked in a few schools--and I could see with perfect clarity that the adults (including myself) had no idea how to deal with bullying. And the bullies know it.

Now, I'm in no way saying that little Tanner was a bully, or that he will become one. But the lack of parental involvement during this incident gave me pause, and made me think, if anything can foster a bully, it's a complicit attitude of the parents.

Don’t get me wrong--I know there are times you just gotta sit down with your girl and talk about how bleach won't clean your grout. I get that you haven't had a chance in the last twenty minutes to sit down and drink your sugary coffee drink and bitch about how fat you are now that you're a size 6. I get that your kid whines, and whines, and clings to you like you're his mother or something, in order to get attention so much that you wish he'd just go play just out of earshot while you have a shot. But hear this: if your kid steps up to my kid again, I'm not stepping in. And I've seen him hit--he's a natural. You can just consider it an intervention. That stings.

Friday, July 16, 2010

Friendships

One of the things you might find discussed AD NAUSEUM in all the websites, books, lectures, etc. is how the impact of a special needs child can change your relationships. Now usually, they are referring to marriages or romantic relationships--and yes, there is an impact. But I'm not here to talk about marriage. Sure, Pete and I felt the impact of the label, and the recognition of what the future may, or may not hold. But--oddly enough--having the truth of the situation, and the acknowledgement that we really have to live in the NOW actually helped us. There was no more push to be "perfect" as we tried to get our son to "catch-up". In accepting him as he is, we continued our promise to accept one another as we are.

Do we still annoy one other on occasion? Well yes. This IS a marriage for chrissakes.

Friends, however can be a different story. Friends aren't bound by vows or checking accounts, although chances are, they've seen you drunk as much as your spouse has, maybe even more. (seriously--BURN those pictures) I found that even before the label and the therapy and the new paradigm, when the differences became more obvious, friends began to fall into different categories.

First and foremost are the golden friends. The one's who've been there, thick and thin. They were the first ones to call when word got out that a label was placed. They are the ones who read my blog even though no one else does. They are the ones I know I could call in the middle of a serious problem and say, please take my boy for the night, and do it without question (I can never say thank you enough, Krista.) They are the ones who get up and do a happy dance every time Ben does something awesome. In short, they are family--maybe not blood, but family nonetheless. These are the friends to be cherished--and rewarded with pie and expensive bottles of wine.

On the other side of that, there are the friends with whom you completely lose touch--the ones who ran when they saw or heard that Ben was "different" from their kids. I'm happy to say, they weren't many, and frankly--their absence is for the better, no? I mean, if they are freaked out by my kid, does my kid need to be around them? I think not. You can recognize the signs of these friends when you start getting the repeated blow-offs. I’m not talking the, "oh my kid is sick, can we meet next week?" typical blow offs that happen to ALL of us. I'm talking the, "my kid is sick, but not sick enough to do something fun with other parents that is then bragged about on FB." And then maybe you see that person at the park from time to time, and you get the fake hug and the "yeah, we should TOTALLY hang out," and that's the end of the conversation. They don't really ask about your kid, but are perfectly willing to tell you EVERYTHING about theirs. Luckily, they prolly don't read my blog, (since they've been unfriended) and even if they did, they're prolly too stupid to put it together that i'm writing about them (Wow, I'm like a Carly Simon song over here...)

It’s a weird place when you are confronted with these "friends." You don't wanna be paranoid, you don't wanna think they are THAT shallow--because, after all, they were your friends, right? But remember that clairvoyant gut of mine? When it comes to character analysis, she hasn't been wrong yet. It would be helpful if she'd speak up a little earlier, though...

Then there are the new mommy friends--the ones that "get it" because your life is their life, give or take a margarita. These are the mommies of kids who are in school with yours, dealing with the same tantrums, the same quirks, the same vocabulary, the same concerns. Its strange, but they are sort of "instant friendships"--maybe because we get to relax--there's no explaining here. Sharing of new ideas, maybe, but no apologies over your kid grabbing toys, or not wanting to play, or screaming in protest when hugged. We can have those moments that transpire in a look that says--yeah, it's that kind of day. And we can share the joy of seeing our kids make eye contact and running together--because we know that's a HUGE step for them in the realm of play. (hey Yasmine!)

Then there are the friends that, well, maybe don't mean to blow you off, but do. Because they are confused. A golden friend reminded me of this the other day. Sometimes, they just don't know what to say--to me. They don't know that they can just sit down, have a cup of coffee and talk about the crap we talked about before the diagnosis. Because, turns out, Ben and I are still the same people. Some of my vocabulary has changed, and paradigm has shifted slightly, but I'm still heavy handed with the liquor in my cocktails, and bake a tasty whole wheat banana/zucchini bread. And unless you came over and called my kid a retard, there really isn't anything you could say that would offend me. Well, unless you criticized my banana bread--but you already knew that. If you have questions, I can supply answers. And our kids "might" play together, although I wouldn't hold your breath.

Now, I can't talk about friendships without taking account of my own actions as well. Sometimes--well, who we kiddin? When you hear the words, when you get immersed in this new world, you hide. Hell, I was down for a good month--lucky to get my toilets scrubbed, let alone step out in public for anything other than the ubiquitous grocery run. And I was prepped--we had been in therapy for a few months, and I was ready to hear what was going to be said--and it STILL knocked me on my ass. It is the tendency of new moms of special needs kids to hide--not that we're hiding our kids, but we are hiding ourselves. I know personally, I didn't want to burden my friends with tears that showed up unexpectedly while I got my emotions under some semblence of control. And honestly--I didn't want to hear about your kids. I didn't want to hear how great they were doing, how the doctor thinks they might be gifted, how milestones are being passed by. I didn't want to have to hide my jealousy, my frustration, my anger. But I'm not hiding anymore, even though I'll still cry at the drop of a hat--its usually over the sort of things I would normally cry about--soup commercials or Hallmark cards. (Look, I'm entering peri-menopause on top of all this, so my hormones ain't gonna be right for at least a decade or more…)

There is a Wiccan belief that I've always cherished: when you make friends with someone--a child is born. (not literally, unless they're a friend with benefits, I guess) Each friendship is a child to be nurtured and cherished. Prolly why I'm not the social butterfly(that and my general misanthropic views). The relationships i have are precious, and must be cared for--for each is their own individual gift. So, if you've been hesitant to call, feel free to pick up the phone. And if you called me yesterday, you can call me again today. Although--any of you who know me know I prefer email than actually TALKING to someone...

Monday, July 12, 2010

Rules...

I hate rules. No, that’s not true. There are some rules that I love. Iambic pentameter, for instance—LOVE. The rule of odd numbers creating a visually pleasing visual. The Pythagorean theorem. But there are also rules that kinda grate. Chewing gum in class—who cares? Having to put on your turn signal when you’re ALREADY in the turn lane? Or the red left turn arrow in a non busy intersection, even? No eating after 8pm—riiiiight. Well, our household just adopted a new set of rules, and I’m already feeling the chafe.

As Special Needs goes, once you get the diagnosis of ASD, ADD, ADHD or any other acronym that includes a variety of sensory issues, you inevitably run up against the question “have you changed his diet?” His diet—as if this kid is eating anything but cheese, bread, peanut butter and chicken nuggets. (ok, his diet is better than that—but you get my point) It turns out there is some sort of gut-brain connection for some kids, and those kids MAY benefit from a diet that eliminates certain items, one of the most popular being the Gluten free/Casein free diet. And while the evidence that a special diet is at best anecdotal, you know in your own parental gut-brain connection that you have to try them, because you never know. I’ve read the lovely anecdotal stories of parents who cut out gluten, or red & yellow dye #594, and their kid became “normal”. Hell, Jenny McCarthy has made quite a pretty penny telling her own story about changing her kid’s diet and “curing” him. (If you can’t tell or don’t know me, those quotation marks imply sarcasm—a rich, deep sarcasm brewed and steeped over time) I’ve also personally talked to parents that have tried these different diets with bupkis to show. Anecdotal evidence is just that—anecdotal. Which kinda leaves it to every mom for herself.

I should note here, it isn’t the diets that bother me—it’s this constant need to “normalize” the kids/people that fall on the spectrum. I mean, yeah—I would love nothing more that to have my kid go to the playground, or a birthday party, and make friends, or make believe he is on a pirate ship, or find another method to deal with his frustrations rather than screaming. Yeah—who wouldn’t, right? Except there is a part of my gut-brain connection that says there is something special here—my kid thinks in a way that other kids do not, and I cherish that. I know—that sounds like rainbow brite hokum—but it is the truth. When people tell me “he’s gonna be OK” I can’t help but think, he’s OK, NOW. Different. Not Less. I cannot wait until Ben can explain to us what he sees when he looks at the world—what he thinks about when those wheels are turning.

And there it is—I can’t wait for him to EXPLAIN. Which means there are things he has to grasp, and learn, and control. Which is hard for him—and he needs help learning to focus and listen. For me, this is where things like therapy and diet comes in. I am not looking to cure my child, I am looking to help him grow. If there are dietary influences that are keeping him from paying attention or listening, then I cannot without a guilty conscience NOT try these diets. Not to mention he has a nasty case of eczema that I would love to control without slathering him with lotions…

So, in the next couple of weeks, our family is going to ease ourselves into the Feingold Diet. Step one, in my “things I can do to help” list. (well, step 453, really, but it’s more of a cluster diagram instead of a list…) I don’t know what, if any effects this will have, but if we can get him to pay attention for more than 30seconds or find another method to vent frustrations other than dog-howl inducing screams, then I will pour myself a cocktail and toast my ingenuity.

This diet was developed by Dr. Feingold to help kids with ADD/ADHD or SPD (sensory processing disorder—which has been labeled today’s new ADHD) And for any of you that think these acronyms are hokum, just stop reading my blog. As a former teacher, and the parent of a special needs child, I have seen and have lived with them all. Really—I’m not kidding. Find another blog.

As I began to do some reading on this diet, I found that it has some features I love. It’s at best an elimination diet that gets rid of chemicals and preservatives that may be affecting your “target” (that’s Feingold speak for the kid on whom you’re subjecting this). No artificial dyes, no artificial sweetners (yay!) no icky preservatives like BHT or BHA—and no I don’t know what those stand for other than “what I don’t want in my food.” I’ve been this kick for a while—a whole foods approach tempered with reality. So when I saw this part of the diet, I said, yay, I can DO this. Then I got the handbook. Then I poured myself a drink.

Along with all that crap, I also have to eliminate from Ben’s diet :

• Almonds
• Apples
• Apricots
• All berries
• Cherries
• Cloves
• Coffee
• Cucumbers & pickles
• Currants
• Grapes & raisins
• Nectarines
• Oranges
• Peaches
• Peppers
• Plums
• Tangerines
• Tea
• Tomatos
• Wintergreen
• Rosehips


OK. Now some of this stuff, not a worry. My kid’s never been a big currant or wintergreen fan. I don’t think he’d appreciate a delicate infusion of rosehips in his tea. But apples? Raisins? Tomatos & peppers, for chrissakes? Those are the two main staples of my cooking repertoire—the Mediterranean/Cajun/Mexican diet is the norm around here. What the hell am I gonna cook now? (ingest Drink #2)

Now, this by no way means he can never have these things again. This is an elimination diet—which means once we clear out his body of these natural Salicylates, we can then re-introduce them, slowly, one at a time to see if he has any sensitivities to them. I’ve read a few things on the Feingold member board about kids that are just fine with some stuff even a few dyes, but all hell breaks loose if they have a strawberry. So it’s hopefully only a few weeks of stage 1 and then we get to bring back the funk. But to get to the reintroduction, or stage 2, we have to see some improvement. So there are these food diaries I have to fill out, and symptom lists to which I must refer, and at the top of this control freak paper trail, a food list I have to follow.

THE LIST contains things that have been fully researched and approved by the Feingold association. There are a lot of things that are basics—eggs, milk, flour, vodka, etc—that I can use without checking THE LIST. But if I want to use a brand name product —say a macaroni & cheese mix in a familiar azure-colored box of heaven—I have to consult THE LIST.

And if it isn’t on THE LIST? No dice.

If it looks like something on THE LIST? No dice.

If it’s on the shelf next to where THE LIST product should be, in a bright box with a sans serif font and a perky empathetic cartoon gnome, promising to add years to my life or improve my immunity, all the while containing the magic blend of high fructose corn syrup and lard? NO DICE.

This means two things—either I make everything from scratch, or I spend a lot more time at the grocery (Well, groceries, now that I have to go to different stores) checking products against THE LIST. And THE LIST is neither brief nor easy to follow. Things may not be listed where you THINK they should be listed. And there are monthly updates of new products for THE LIST—printed on a different sized paper, so you can’t just cut and paste it into THE LIST. Nor is there a computer generated LIST that you could use—cutting and pasting to create THE LIST for your home. So that means bringing THE LIST and the supplement LIST, along with my shopping list, to the store. I can't even count the number of times i've walked out the door without my shopping list--now i have to remember three. Seriously—of all the things that need an app. You can get multiple apps for playing farts or GPS tracking the whereabouts of Nicole Richie, you’d THINK someone could work out this little problem…

LIST conundrum aside, you’re probably saying, so what? Cooking from scratch is the kinda thing you do—and you’d be right. I like to make my own cornbread, sure. Hell this weekend I made my own hamburger buns—SOOOOOOO good! I can even mix a Caucasian good enough to please the Dude with my eyes closed. But, honestly, some stuff, I don’t wanna make from scratch—like marshmallows. Oh, there are some on THE LIST, but I can’t find the three brands listed. Which means if my kid wants hot cocoa with marshmallows I get to sing a song my mother often sang to me: “tough titty said the kitty, but the cat came back.” I’m unsure of the reference, but in my house, it meant you can’t have it, quit complaining.

And back to the ban on tomatos. Can we face a certain toddler truth here? Ketchup is god. It is often the lure to get my kid to eat something new. He’ll look at me and say “dip?” Now there’s a recipe in the handbook for some sort of “Un-ketchup” with beets and carrots that you are challenged to “go ahead and try." Really? If a cookbook has to convince me to try something, I'm a little skeptical. Anyone wanna come over and try this beet carrot mélange? *urp*

(Yes, I’ll try it—I’m not that hard headed.)

In the end, we’ll be on this for at least a month before we have to make any tweaks—eliminate more if need be. And if that doesn’t work, then we turn to the Gluten Free Casein free diet. I had no desire to try that one first, because, well, it had a lot of rules, and I worried about all the snacks and treats he loved that would not be available. So instead now he cannot have his favorite fruit leathers from trader joe’s or applesauce, or grape jelly, or ketchup. And somehow, I thought this one would be easier. If you need me, I’ll be chopping beets…

p.s. for anyone interested in the Feingold program, here’s the link:
http://www.feingold.org/overview.php

Wednesday, July 7, 2010

No "A" for Effort

So, this blog was gonna be about whispers and “looks”, but today’s events turned out to be more blogworthy than any event ever. Day one of summer school.

AS part of Ben’s IEP, he is eligible for an extended school year—in English it means he gets the privilege of going to summer school. So when I got the application in March, I filled it out promptly and sent it back to the powers that be. A week or so before school ended, I received notice that Ben was to attend his preschool class at a certain elementary school, and the times of the class. That was it.

So, preschool classes have routines, yeah? One big one is the morning meet & greet. At his previous school, we all met by the buses (many of the students were bussed in) and after a rousing good morning, the kiddies would go off with their teacher to eat school-issued coffee cake and chocolate milk. (don’t even get me started on THAT one…) Anyway, since I was unsure of the “first day of school” routine since we joined in later in the year, I figured I would go to the school, find where the bus dropped off and his teacher would magically appear. Mistake number one.

Instead I was greeted with THE LINE. Did we know what the line was for? No. Were there signs posted as to what new students were to do or where to go? No. Did I drink too much coffee before I stood in said line? Yes. Does Benji like to stand in lines? Dear God, please help me.

Now, unbeknownst to me, what we were supposed to do was go the auditorium and wait for our child’s name to be called with their teacher. You think someone coulda written that down on a piece of paper and taped it to the fence… No need to get fancy with lamination or anything. Just a sharpie and a piece of copy paper—Hell, it could have been one sided to be more environmentally friendly.

So, after standing in the line for a while, rumor spreads that if your kid is already enrolled, that you can go up to the front, dragging your screaming toddler with you and check “the list”. So we did that, no dice. He is not on the list. Really? I applied in MARCH. Do I have a copy of his IEP? No—I APPLIED IN MARCH, dumbass. Why would I have a copy with me? It’s not as if I carry it around—it is a rather thick document and not very multitask friendly. I suppose I could use it to beat off an attacking dog, but I digress.

Ok. So I head back home to get his F#*&in’ IEP. It made sense—Benji would not stand in lineas it was, so if we left and came back, it should be much shorter. So I went home, picked it up, headed back. After parking 3 miles away--ok, two blocks, I arrive to find a mommy friend in the same line with one of Benji’s classmates. So we got to mutter and harp on the idiocies of the system, while we edged closer to the front. As we get closer, the aide from Ben’s previous class came by and told my friend her son was on some list in the preschool classroom. Was mine? She didn’t see it. GODAMMIT!

(now, I should have checked myself at this point. Hindsight and all that…, I guessed I assumed the system would work it all out.)

So, it get up there, turn in my subsequent paperwork, and am directed to room 1. Not the room all of Benji’s friends were going too. Uh-oh.

See, this is a big transition for him, and ideally, he needs some familiarity to help him deal with it. Flexibility is not a strong suit in kids with autism, and Benji is no exception. I had already heard through the grapevine that his previous teacher was not here, so I was hoping that he would be in a class with some faces he knew. I knew he needed it. This session is only 4 weeks long. It wouldn’t be very functional if Ben is resisting it for 3 weeks…

So we’re off to room one, following a woman who seems to be training to be an Olympic speed walker, and I’m trying to keep up without dragging Ben behind me like the migrant worker warning sign. We get there, and the teacher—alone in a room of children (warning #1) looked up in bewildered confusion (#2) She has no roster, and begins to ask me questions about Ben, but barely paying attention and looking confused more (#3). I ask her where the kids will be dismissed so that I can be there to pick up Ben. She didn’t know. SHE DIDN’T KNOW? She consulted with the teacher in the room next door—a breath of seeming coherence in this sea of crazy, and they agreed to dismiss upfront by the busses. (DUH…and #4)

Now, class will be dismissed at 10:30—and at this time, it is 10. So I go move the truck from BFNoHo to closer to the school and wait. As time gets closer, I head over to the entrance and chat up some other moms. They are shocked that Ben isn’t in their kids’ class. Then, my gut reminds me I wanted to talk to that teacher in room 24. I head over there to ask the teacher if Ben is on her list. LO and BEHOLD…

So I head BACK to the office, to talk to someone AGAIN, only to hear my kid screaming outside as he’s being lead out with his class. So I run to gather up his blotchy face and mucousy nose, and we head back together to get back in THE LINE.

Now, this time in line made me privy to some office gossip. (as a prior teacher, I’ve learned to listen closely to whispers in the main office—they are almost ALWAYS informative) Seems the preschool lists were MISSING. Our kids were on some other list that the people in the office didn’t have. Those lists got delivered as I neared the front of the line.

At this time I begin to notice that my right side—the hip Ben is perched on, is feeling moist. Perfect. He hasn’t been changed. Awesome.

“My son is supposed to be in room 24. The teacher in that room has him on her list, and I would like him to be in there to be with familiar faces.”

“Huh, so he is. Well, I’ll just cross you off that other list…”

I have a number of lists I’d like to cross you off of—the first one being HELPFUL EMPLOYEES IN LAUSD. The next being MASTERS OF THE OBVIOUS.

So, now he’s supposedly on the correct list, but lord only knows when the teacher will get his IEP. Or when I’ll get my copy back for that matter…(I really need to make multiple copies of that damn thing). We left there exhausted and hot. And moist. At that point I thought, fuck Weight Watchers. They can watch me go to McDonald’s. Ben agreed. Well, he said “fries” which I took to be agreement.

One day down. 19 more to go. My waistline or sobriety can’t take much more of this…