Nothing’s Ever Easy

That’s my father’s saying. Mine is “It’s always something.”

Baguette’s IEP includes bus transportation between home and school. Because she is now able to attend the after-school program (this is a whole story of its own), she only rides the bus to school in the mornings; Mr. Sandwich picks her up in the afternoons.

At the beginning of the year, I called the Special Education department, which is where you’re supposed to call to let them know this.

Her bus comes at about 7:15 each morning, except for when it doesn’t–usually because there is a substitute bus driver, or because there is some sort of maintenance issue. Usually (but not always) we get a robocall about the latter.

Baguette, meanwhile, loves the riding the bus. She is ready ahead of time, can hear it 1/2 mile away (I am not exaggerating), and is almost frantic to get the front door to the house open when it pulls up.

little girl boarding school bus

Today, the bus did not arrive. We waited on the porch for almost 20 minutes. There was no robocall.

So I called the Area Bus Supervisor, who was not there, and left a voicemail. Then I called Dispatch, which required a lot of time on hold before I spoke to a person, and many more short times on hold while that person talked to other people before finally let me know that Baguette was not on the route sheet.

Which is weird, because she was on a route sheet YESTERDAY.

Then I got Baguette into the car and called Special Education, who confirmed that their records showed that she was to be picked up in the morning and said that her “profile is active,” but that they did not see any routing information.

And then I called the Area Bus Supervisor again, and actually got a person. She remembered talking to me earlier in the year (when I was trying to get Baguette’s pickup time changed because I refused to cut into her inadequate sleep even more by waking her up before 6:00 a.m.), confirmed a.m.-only pickup, and said that the only thing she could think of was that sometimes “when you make some changes, the system goes ahead and bumps kids off of routes when it’s not supposed to.”

You know what? That’s not a system.

But she did email the person in charge of routing and get them to reinstate Baguette’s transportation starting tomorrow, and she called me to let me know it was fixed.

So that’s good. But to get it fixed, I had to make multiple phone calls to multiple offices for a total of 45 minutes, be late to work, and find breakfast out in the world (thanks, McDonalds!) because I hadn’t been able to eat at home the way I usually do.

This is going to happen again, because this is how it “works.” Nothing’s ever easy, and it’s always something.

Endings and Beginnings

Friday

Today was Baguette’s last day at the school she’s gone to for the past year and a half (almost). We fought hard to get her into that school, and in the end we succeeded. She spent last year in TK, and overall we were happy.

Pros: The special ed teacher was amazing. She really cared about Baguette–and all her kids–and went the extra mile (and then some) for them. The kids were welcoming to Baguette, and didn’t mind when she screamed, and kept reaching out to her even when she didn’t seem to respond. The parents were friendly and supportive and made sure that Baguette was invited to birthday parties. The office staff was delighted by her, and repeatedly told us how much progress they saw her making. The principal always said hi to her, and made sure she was included in the morale events he sponsored, and told us how much change he was seeing in her.

Cons: The TK teacher didn’t want Baguette in her class. It was obvious, and if we could tell, Baguette surely could. Seriously, I don’t think this teacher said a single positive thing about Baguette all year.

At the end of the year, they tried to get us to move her to a special day class in another school, instead of staying in the mainstream classroom. The original plan had been to give her two years, so we insisted on staying for kindergarten.

This year is kindergarten.

Pros: A new classroom teacher, and several of the children from her TK class.

Cons: A new special ed program and a new special ed teacher, neither of them a good fit. A new principal (she could be fine–I don’t know her–but it is change). A classroom teacher who didn’t seem resentful, but who didn’t connect with Baguette either.

The real problem was that Baguette wasn’t fully participating in the class, and wasn’t demonstrating mastery of the curriculum. I need to point out that I think the key word is demonstrating. Baguette is constantly learning, but she knows when she’s being tested, and she does not cooperate. It’s a challenge. But it doesn’t mean she isn’t learning what you’re teaching her.

The thing is, it was clear that the staffing changes at the school meant the school had changed. The parents and kids and office staff were still great, but the teachers and the assistant principal (who runs the IEP process) are going by the book, and their book doesn’t include Baguette.

You know who knows that? Baguette. She didn’t take to the new teachers. And like a lot of us, she performs better when she knows you want her around.

So we agreed to move her, and move her now, because hopefully there’s enough of the year left for her to adjust to a new classroom. If we like it, and she does well, we can keep her there next year. And if we don’t, we may be able to find another school for her. We’ll spend the spring looking at how to do that, so that we know what our options may be and how to make the most of them.

We’re sad about leaving that community, and we don’t really want to take this step–but since we’re taking it, we hope it will be a good one for Baguette.

Monday

Doing What Works, Because It Works

Today, Baguette’s Daisy troop had an outing to a UCLA Gymnastics meet. I’ve been thinking about taking her to see a gymnastics meet, so this seemed like a great opportunity. She’d get to see some of her friends and have a new adventure.

gymnastics meet warmup at Pauley Pavilion, from stands

We made it through the warmup, and Baguette was done. There were two factors.

First, she didn’t want to sit in the stands. She wanted to go down onto the floor with the college teams, because clearly they were doing something active and fun, while she was just sitting there.

Second, apparently now every athletic competition is a concert. My gymnastics viewing is pretty much limited to the Olympics, during which I can hear the equipment flex at moments of impact. But from well up in the stands in UCLA’s Pauley Pavilion, we got an overwhelming combination of music, announcements, cheers, and more. As we learned later, it was a bit much for the neurotypical girls, too.

So we left our seats and walked around the concourse for a bit, to see if we could cajole her back in once the actual meet got underway. Turns out? We could not.

Fortunately, we had a Plan B: UCLA.

Baguette loves the campus. We’ve taken her there any number of times over the years, and she runs around it like she owns the entire place. She seems to be learning her way around; often, it’s clear that she knows where she wants to go and how to get there, and we just follow her lead.

So we did that. We went up staircases and down walks and through buildings and plazas. We watched the marine layer come in, bringing the fog ever closer from the west, even though the campus itself was still bright and sunny. And after a couple of hours, she asked to go for a ride in the car.

It was a great afternoon. Maybe not the one we expected, but great nonetheless.

It was what worked, and it worked well.

Occurrences Of Late

Mr. Sandwich: I’m developing legal arguments regarding why Ariel’s contract with Ursula isn’t binding.
Me: Because she’s a minor?
Mr. Sandwich: That, and Ursula keeps employing metaphors that Ariel cannot be expected to understand, like “Rake ’em across the coals.”
Me: When Ariel doesn’t know ‘what’s a fire, and why does it–what’s the word–burn’?
Mr. Sandwich: Yes. And she talks about how “if you want to cross a bridge, my sweet, you’ve got to pay the toll.’ Ariel has no bridges in her life.

[pause]

Me: This is based on our extensive knowledge of Law & Order. But have you considered maritime law?
Mr. Sandwich: Good point. After all, my Opa did sign a contract and go to sea at age 12.

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Baguette has two loose teeth. They’re her top front incisors. This will be interesting.

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In the “nothing’s ever easy” category, we’ve just changed Baguette’s aide at school. We thought that having the aide who was with her at day care would be a good transition, and offer some continuity, but it didn’t play out the way we expected. First, it took a month and a half to resolve all of the communication issues between the district and the private agency, so the need for continuity was pretty much gone by the time we were up and running. And then it turned out that there were persistent punctuality issues, and we stopped getting our daily reports (which are kind of important when you have a child who’s not yet able to tell you about her day). The aide had to be out for a week and a half for a family issue (this was valid–we have no issue with the week and a half, just all the rest of the time around it), and that meant we had a sub.

The sub was amazing. As of tomorrow, the sub is the permanent aide. Fingers crossed, and moving forward.

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Baguette has a new iPad Air. The old iPad ran out of memory, and there was really nothing to do about that–just because she hasn’t played with an app for a year doesn’t mean she won’t start again in 10 minutes. And the apps were starting to hang up due to the lack of available memory, so the solution we came up with was a new device.

New to her, anyhow. We went with refurbished. We’re not insane.

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Los Angeles got rain today! I was really hoping for a solid day of rain, and there were a couple of sunny hours in the afternoon, but I’ll take what I can get.

Kindness

We took Baguette to the doctor yesterday, to check on a minor concern. While we were there, we decided to get her flu shot–none of us has gotten it so far, because we’ve all been sick through the fall and into the winter, but she’s pretty healthy at the moment.

As always, Baguette screamed a lot about the shot. And this year’s shot is a doozy, so it had an even more extreme effect than usual. She and I waited outside the pharmacy while Mr. Sandwich went in to pick up her prescription. It took about 20 minutes. She was still in pain, and screaming.

People moved in and out of the courtyard where we were waiting. I tried to calm her, offering her distractions, singing to her (that definitely didn’t help), and walking around while holding her. After a while, I noticed a young boy looking at us and smiling.

He said, “Hi. Is it okay if I come over and talk to her?”

I said, “Yes, but she may not talk in return. She doesn’t talk much sometimes.”

He said, “That’s okay,” and came over.

He never lost the smile. He talked to her, and suggested games they could play, and put “pixie dust” on her arm, and let her play with his tablet.

After a couple of minutes, I said, “Do you have a brother or sister with autism? Because you really seem to know what you’re doing.” He answered, “Oh, I just really like little kids.”

Eventually his mother came up, and I introduced myself and told her how helpful her son was being. She said he was in a peer support program at his school, where he helps kids with ADHD and autism. I told her that it showed, because he was really good at it. She said, “I heard your husband mention it in the pharmacy, and my son asked me if he could go talk to your daughter. I said I didn’t know, but apparently he did anyhow.” I smiled and said, “He did ask first!”

Apparently Mr. Sandwich had to endure a long stretch of snarky, irritated, and exaggerated comments from the other adults in the pharmacy, several of whom seemed to feel that 15 minutes is the same as an hour, and that no one was doing anything about the upset child in the courtyard.

But let me tell you, that 12-year-old was a real grown-up.

Change

Remember when I talked about how routine is important, but disrupting the routine is, too?

No?

That’s okay. Here’s a link. But you don’t necessarily need to read that, because I’ve got more examples from this weekend.

  • Mr. Sandwich read one of her “Touchy Feely” books using the adjective written on the page, but not the one Baguette prefers. She didn’t get upset, and she didn’t repeat the original phrase. Instead she corrected him, saying, “They are prickly.”
  • We were in the car, and she started to get a little fussy. She asked for her book (she has a sequence in which she reads the Touchy-Feely books, which are firmly in rotation. I asked, “Do you want Mommy to read That’s Not My Dragon?” And she answered, “I want Baguette That’s Not My Dragon.”
  • She’s been playing with the apps for The Monster at the End of This Book and Another Monster at the End of this Book. On Saturday she made up her own chant based on phrases from the apps: “Grover is furry, Grover is furry, YOU! Elmo is cute, Elmo is cute, YOU!”
  • As usual, we went to the zoo. Elephants are her favorite animal, and the demonstration enclosure is always one of our first stops at the L.A. Zoo. But the male elephant sometimes trumpets loudly and scares her. Yesterday the females were doing the demonstration, and she sat on my lap. Almost immediately, she said, “Time to say bye-bye elephants.” I said, “Are you sure? Don’t you want to watch them eat carrots?” She looked at me and said, “I want to go see giraffes please.”
  • When we reached the carousel, toward the end of our visit, I asked if she wanted to ride on one of the animals (she never does–we only ride on the bench seat). She answered with “I want to ride peacock, please.”
  • Last night, she handed Mr. Sandwich one of her stuffed animals and unilaterally changed one of her common Baguette-focused phrases (“I want Daddy take elephant”) to a straightforward instruction: “Daddy, take elephant.”
  • “Frozen” is also back in rotation, and she’s memorized even more of the dialogue. She’s also tailoring it to her own preferences, as in last night’s pronouncement: “It was an accident. She was scared. She didn’t mean it. She didn’t mean any of this. Tonight was my fault–I should be the one to go after her. Bring me my elephant.”

She’s been in school for three days. It hasn’t been easy, and it hasn’t always felt good. But it is good.

Little girl with a big stack of books

Milestone

For the past several months, we’ve been working to get Baguette into a certain school with a certain autism program. It’s been an exhausting, nerve-wracking process. After refusing our requests in the spring and seemingly lying dormant during the summer, the school district managed to make and rescind several offers over the past week.

“Emotional rollercoaster” may be a cliche, but wow, is it also true.

So yesterday we finally got the offer, which was signed by all parties. It placed Baguette in the school we want with the help we want, and it arrived just before we needed to leave the house to pick her up and take her over for enrollment.

She is enrolled. She’s in a Transitional Kindergarten class, which is a two-year program designed for students who are a little young for kindergarten. I have no idea how it’s different from Pre-K followed by K, but it is a thing that exists in the world, and it is the thing we are doing.

We’re not done–there are aides to identify and work schedules to coordinate–but one big piece of this educational puzzle is in place.

whiteboard with date and "First Day of TK" written on it

Oh, and in Los Angeles, school started on August 18. So it’s her first day of school, but it’s everyone else’s third week.

Santa Barbara: The Ugly

We were in a restaurant. It wasn’t Denny’s, but it wasn’t Ruth’s Chris, either–your standard American fare, in an attractive but not terribly trendy setting. It was late, particularly for Santa Barbara, which is a town that closes early.

It had been a big day. We’d taken Baguette on her first train ride, and had spent several hours at the beach (where a stranger had asked us to move our beach chairs and umbrellas because they blocked her open view of the water–from her third story condo). Baguette napped late, and had eaten, but Mr. Sandwich and I still needed dinner. I’d gotten her a new app on her iPad, and she was playing it happily and describing what was happening and what hat the monkey was wearing from one moment to the next.

Baguette likes her iPad on full volume. We tend to be immune to it, but we are aware of it in shared public spaces. We know it’s loud, but we also know what happens when we try to lower the volume. And she was talking, and happy, and we really hate to interrupt that when we don’t have to.

So when the woman at the booth next to us said, “Could you please turn the sound on that down?” Mr. Sandwich said, “I’m sorry. I’ll try, but she may scream,” and leaned across the table to try to make things a little more quiet.

As she turned away, she said something that I couldn’t quite make out, but I could see Mr. Sandwich’s face. It went a little feral, and he turned back to her and said something that is not our go-to approach.

“No, actually, that’s where autism comes in.”

We don’t hide Baguette’s diagnosis–we talk about it quite openly. It’s nothing to be ashamed of or embarrassed by. But we also don’t use it as a defense or a come-back. It’s an explanation, but not a justification. So I knew something had happened.

I managed to get Baguette to shift the iPad down to her lap, where the speakers were a little muffled. Mr. Sandwich and I had one of those wordless couple exchanges that meant that we would discuss it later, and we went back to eating our dinners. And while Baguette went back to talking about the monkey and its hats, we were silent. It was awkward.

Then the woman stood up, walked over, and faced me–carefully standing so that Mr. Sandwich could not make eye contact with her. She said, “Excuse me, have you ever considered treating your daughter with essential oils?”*

It was 9:40 p.m. I was exhausted. I didn’t know exactly what had transpired a couple of minutes before, but I was not so tired that I couldn’t tell that this woman was determined to make some kind of point. And I just didn’t want to talk about it. So I said, “I’m sorry, I’ve looked into essential oils as an autism treatment, and I don’t believe in them.”

She said, “But have you tried them?”

I said, “Excuse me?”

She said, “You said you’ve looked into them, but that doesn’t answer my question of whether you’ve tried them.”

So in rapid succession, we have:

  • Criticism of our child’s behavior
  • Criticism of our parenting (presumably, at this point)
  • Criticism of my thought process and word choice

This is when I got the expression that Mr. Sandwich describes as “a cross between a police bloodhound and a Stinger missile.”**

A series of responses flashed through my mind like slides in a carousel, and then one–informed by my time in the blogosphere–came into focus. I asked:

“Do you sell essential oils?”

And she saw fit to answer, “”Yes, I do sell them. I have a sample here, I can just wave it under your daughter’s nose and let her smell it, I think you’ll find it soothes her.”

Sure. Why not? I’ll just take some unlabeled vial of some poorly identified substance and wave it under my daughter’s nose.

But I didn’t say that. I said, “I’m sorry, but I’m not interested in giving her essential oils.”

And finally, she went back to her table. I don’t know if she could relax, but we couldn’t. Dinner was over, no matter what we had or hadn’t eaten.

It turned out that what she had said to Mr. Sandwich, when he said he would try to turn down the volume, was this:

Ah, well, that’s just where parental authority comes in, isn’t it?

No, lady. That’s where autism comes in. I think you missed the parental authority part; it happened when I said “no” to you multiple times, because Mr. Sandwich and I are the best judges of what Baguette needs or does not need.

*The correct answer: Yes, I have tried essential oils for a variety of purposes. I believe that they have some helpful properties. I also believe that their efficacy is limited. For example, I believe that lavender can be calming, and that it has some antibacterial properties. But I would not use it to treat pneumonia. And yes, I am aware that there is scientific research into essential oils and autism. I also know that the study in question uses essential oils as a sensory tool. In other words, it’s something for kids to smell, used in conjunction with other senses such as touch.

**I consider this a compliment.

Santa Barbara: The Bad

Baguette had a fantastic time on our trip. She enjoyed her train ride, in both directions. She loved going to the zoo. She could not have been more thrilled with the beach–walking, wading, castle-stomping.

Also she screamed a lot.

Baguette’s screams are like some kind of air raid siren. She screams like a banshee. It’s piercing. I’d like to say that only dogs can hear her, but that’s not true.

All of us can hear her.

It was a big week, and that’s not always easy. She was off her routines. She had a bit of a tummy bug. One of her teeth is loose. She had a lot going on.

She did enjoy the things we did. But I think we’re in a phase where it is hard for her to be away from home. It’s important, because disrupting her routine–while disruptive–tends to result in gains for her. We’re pretty sure that after this trip, she is thisclose to truly reading.

But it’s not easy–for us, but even more so for her. Our girl works so hard, and it can take a lot out of her. I’m so impressed with her persistence and her determination. I really want to focus on the positive, while helping her find new ways to deal with things that are hard. So I don’t want to give up these trips, but maybe we make them shorter, at least for the near future.

I know there’s a lot out there about angry diner owners and parents who were or were not paying attention to their child’s behavior. I don’t know the truth about what happened in that situation, or what any of those people does or does not face on a daily basis. But I know how much Baguette tries, and how much we try. So please, please, when you see a child out there having what looks like a tantrum, please keep in mind that maybe they’ve just had not enough, but too much. And that’s nobody’s fault.

More on this later. Because of course I have a story for you.

Also, I’m using this title for effect. Baguette was not “bad” and I don’t want to give anyone the impression that I think she was. But let’s face it, this aspect wasn’t “good,” and I mean from her perspective as well as mine. She doesn’t enjoy feeling this way.

Things Baguette Did This Weekend

I haven’t posted much lately; the past six weeks have been . . . well, let’s just call them “challenging,” why don’t we? We’ve all had a series of minor illnesses (I’ve had a sinus infection twice in the same month). My dad had quadruple bypass surgery–but we haven’t been able to visit because we haven’t been healthy enough. Work has been incredibly slow (thank goodness), except for when it’s been incredibly urgent. We’re going through the IEP (Individualized Education Plan) process with LAUSD, and that’s challenging and dismaying, too. We know what Baguette needs and how she’ll thrive, and it just shouldn’t be this hard to get that for her.

All of this at once? It’s a bit much.

But then there are the wins, and this weekend was full of them.

  • Baguette’s been signing the alphabet since Christmas 2013. This weekend, she moved on to words. And she teaches them to us, demonstrating and then saying, “What does that spell?”
  • Lately, when we read her favorite alphabet book of the moment, she grabs the stuffed animal that corresponds to the book. Friday, when we got to “T is for Tiger,” she said to the tiger, “Stay right here” and then ran to get the hat she insists that it wear.
  • Verbally, she’s been adding to her arsenal of stock phrases; today’s addition was “Want Mommy hold hands” while we were in the pool (which has opened! Huzzah!). Last night’s was “This is my penguin.”
  • She’s been improvising lines to songs and books. To my knowledge, Eric Carle never wrote, “Cookie jar, cookie jar, what do you see?”

And apparently it’s time for the tooth fairy to start coming to our house.

missing baby tooth being replaced by permanent tooth