Tragic Sandwich

Tag: autism

  • 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

  • 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.

  • Lifelong Learning

    Baguette has a significant language delay. We do a lot of interpretation.

    NighYouRah

    She works so hard at communicating. I’m so impressed with her, and how diligent and persistent she is with any number of tasks. These are traits that are going to serve her well no matter what she chooses to do with her life.

    These traits are invaluable with ABA. She makes no secret of the moments when she is bored, or frustrated. There are plenty of times when she resists completing a task or participating in an activity (to the point of banshee screams). But there are so many other times when she will Just. Keep. Trying.

    She does this with speech, and I want to encourage her. So I try really hard not to tell her that she’s saying something incorrectly. Instead, I say things like this:

      “Mommy doesn’t know that one yet.”

      “Mommy still has to learn that.”

      “Maybe you and I can figure that out together.”

    Because I want to let her know that communication is a two-way street, and the burden isn’t entirely hers. I want to let her know that I’m still learning, too. I want to show her that adults also struggle. I want to let her know that it’s possible to share tasks and work together.

    Ultimately, I want to help her make herself understood to others. But first, I have to show her that I understand her. I have to show her that I’m going to work hard with her. I have to show her that I think hearing her, listening to her are worthwhile, even if it’s not immediately easy for me.

    Oh, and Nigh You Ra? She requested it for days. I asked her ABA providers and her teacher and Bestie’s mom and a co-worker with a daughter slightly younger than Baguette. And then (as you can see above) I turned to Twitter–and I was not surprised at all when the answer came from Cloud, with an assist from one of her daughters:

  • Will Disneyland Be the Happiest Place on Earth for Baguette?

    A through E

    A lot of Baguette’s peers have been to Disneyland–many of them, more than once. My parents first took me when I was four, and we had annual trips until we left California a couple of years later. I’ve been a handful of times since, as a teen and as an adult (most recently with Mr. Sandwich and one of my college friends, about seven years ago), and it continues to be an amazing experience.

    Baguette is four, and we have no plans to take her to Disneyland. It’s not that we have any objection to Disneyland. It’s more that we’re not even remotely sure that she’ll like it.

    She’s just started to discover Disney movies, and she’s really only interested in Frozen. While she does know Mickey and Minnie, I’m not sure she sees them as anything more than two of her (many) plushes.

    Disneyland is crowded. It has innumerable lines. While there is a program to accommodate people with physical disabilities and special needs, I haven’t yet figured out how it works, and it still sounds as if there is a lot of line-standing and coordination required to navigate the program and the park.

    Will Baguette like any of the rides? Will she be okay with having a lap bar that holds her in place? Will flying on the Dumbo ride completely terrify her? Will Mr. Toad’s Wild Ride be a little too wild? Will Snow White’s Scary Adventure give her nightmares that she can’t tell us about? After all, this is a kid who won’t even ride one of the moving animals on a carousel.

    Also? Disneyland is freaking expensive. $96 each for Mr. Sandwich and me, and $90 for Baguette. That’s $282, and we haven’t parked. Or eaten. Or bought a single souvenir. $282 and a drive that isn’t short, for a day she may find frustrating and frightening.

    We’ll wait. Disneyland isn’t going anywhere. Plus, that gives us time to save up for it. Because entry will probably be $500 for the three of us by the time we’re confident about her readiness.

    Photo by Andy Castro, via Flickr. Creative Commons.

  • Back to School

    Baguette is four. Today she started her second year in a 3-year-old room at her day care.

    In fact, she’s been in a 3-year-old room for close to 18 months already, because she moved into that group just before her third birthday. So why are we keeping her there?

    Because it’s the best solution for her, although we didn’t arrive at that in a straightforward way. If it weren’t for a screwup on my part, she’d be in pre-K today. But that wouldn’t be the best solution. It was a fortuitous screwup.

    Baguette’s day care has a re-enrollment system. Each year, in the spring, you pay a fee and file some forms to indicate that your child will be coming back in the fall. (My friends with children in similar centers find this surprising, but it’s how Baguette’s center does it. And, yes, I do think it’s weird considering that we paid a deposit up front when we first enrolled her four years ago, to cover her last month, but that’s how the center does it. Fine.)

    The director sent out the re-enrollment information, and I submitted the form and paid the fee. Later, she sent out a reminder, and I thought, “Should I confirm that I submitted everything? No, I know that I did.”

    Except I was wrong. I hadn’t sent them in. We learned this in June, when the director emailed me to ask if Baguette would be coming back in the fall, because there was no re-enrollment form for her. Oh, and all of the pre-K classes were filled, but we could be first on the waiting list.

    Cue discussion of how we’ve been there for four years; how we’d paid for a year of Friday pizza at the school fundraiser in the spring, and maybe that indicated an interest; and how the policy really makes no sense to begin with; and so forth.

    Also, cue panic. I sent off inquiries to a number of other day care centers, one of which we later toured. Mr. Sandwich and I each sent emails to the director to get clarification on our options. Finally–maybe a day later, but it felt longer–the three of us had a conference call.

    The director offered us a solution: One of the existing 3-year-old classes was very large, and was being split into two. While pre-K did not have any open spots, one of the new 3-year-old classes had room. Baguette already knows the teacher, who gets her and who she loves. The class, while still for a 3-year-old bracket, is a little more academic than the developmental class she’s been in for the past year and a half. So she’ll get new experiences and challenges, but in a more comfortable and familiar environment.

    Pre-K would not be as good a fit for her this year. The thing that stands out for me is that the children are required to sit still at a table and work in workbooks for 30 minutes at a time. And each week, they have homework.

    I don’t think 4-year-olds should do that, period. That’s not how they learn, and that’s not how they should be taught. But I really don’t want to ask that of Baguette. She loves to learn new things, and she has an amazing memory. She’s much better at listening and following instructions than she used to be. She should not be asked to sit still for that long so that she can complete worksheets.

    I also don’t think that they should be doing homework. At this age, they should be learning through play, and they should also just be playing. In Baguette’s case, she gets 10 hours of ABA at home each week–on top of the 15 hours per week she’s getting in the classroom. That’s enough homework. She’s doing enough.

    If I’d turned in that re-enrollment form when I meant to, she’d be in a pre-K classroom right now. And that would be wrong for her.

    I want my girl to be confident, to be capable, and to have the skills she’ll need to succeed in whatever way she chooses. She doesn’t need to be doing worksheets and homework this year in order to accomplish that.

    Next fall, she’ll be 5. She’ll be old enough for kindergarten. Will we have her go into pre-K instead? I don’t know. We’ll figure that out over the next year. And we’ll decide based on what seems best for her at that point. I have the feeling that this is going to be a big year for her. Without worksheets.

  • Performance Anxiety

    I’ve always been conflicted about children and performances. Growing up, I performed in piano and ballet recitals, and was in the occasional play. The stage wasn’t my natural habitat, but I never had any real qualms.

    But when I was in junior high, I went to see my friend’s sister perform in her dance recital. She did just fine–but there was a class of tiny girls who went on stage with teddy bears, and one of them should not have been there. This girl just stared out into the darkened theater and sobbed, and none of the teachers went to help her.

    Ever since, I’ve had misgivings about the idea of very small children performing on stage. Enter Baguette.

    December 2010: Baguette’s first school Holiday Performance

    Her class was all infants, and they were propped up in bench seats. Baguette was mesmerized by the stage lights and had no idea there was an audience, so that went well.

    By the way, if there is anything more ridiculous than putting infants who can’t stand on a stage and calling it a performance, I don’t know what it is. (Although Bestie stole the show that year, I do have to admit.)

    May 2011: Baguette’s first school Spring Performance

    Each class sang and danced a little to a song. The infants got wheeled around in a cart and looked bewildered. It was fine.

    December 2011: Baguette’s second school Holiday Performance

    She was starting to get a cold, and couldn’t spot us in the audience. One of her teachers kept her from actually sobbing, but we could see the tears.

    May 2012: Baguette’s second school Spring Performance

    She had just moved to a new classroom and didn’t know the song. She knew she didn’t know it and she couldn’t spot us in the crowd, so she started crying quietly.

    December 2012: Baguette’s third school Holiday Performance

    I took her backstage to drop her off with her class, and she started sobbing and screaming. I left her, in the hope that she would settle down when she realized she was with her teachers (who she didn’t much like) and friends. After a few minutes, I asked the school director to check on Baguette. A minute later, she was back, holding Baguette and saying, “She’s not 100%.” We watched most of the show from the audience and then went outside and ran around in the patio.

    May 2013: Baguette’s third school Spring Performance

    Mr. Sandwich picked her up early and brought her home.

    December 2013: Baguette’s fourth school Holiday Performance

    We checked with her teacher (who she adores), who shook her head and said, “I think it’s going to be too loud for her.” We stayed home.

    May 2014: Baguette’s fourth school Spring Performance

    Again, we checked with her teacher, saying, “We don’t want her to feel left out, but we don’t want to put her in a situation that makes her unhappy.” The teacher said, “You know what? I think she’s going to like it this time. She’s really into practicing the song. She sings it all the time.”

    So with trepidation, we showed up at school and hid. Because we know from past experience that if she sees us, she’s going to come to us. And what did we see? A girl who knew all the moves and nearly all the words, who followed her teacher’s lead, and who was beaming as she performed with her class.

    little girl on stage with class

    She would not have done that a year ago, or two years ago, and we know that because she didn’t. But she’s learned so many skills in the past six months, and she’s become so confident. This is huge.

    This is huge.

  • Our New Normal (For Now)

    “Normal” is open to interpretation. That’s true for every family, but I’ve really come to understand the concept better since Baguette’s autism diagnosis. Actually, I knew it before her diagnosis–but that’s what made it okay for me to say openly that my normal is different from the normal you experience. Or you. Or that person over there.

    I came across a post about what “normal” means for one family dealing with ADHD, and it got me to thinking about what is normal for us.

    1) The house is always messy. Between work, commute, and ABA, we do not have time to clean. Mr. Sandwich does the laundry and I do the dishes, but the rest of the place is profoundly cluttered.

    2) No “me” time. This isn’t exactly true. I get my hair colored and cut every six weeks, and about as often I get a massage. Mr. Sandwich has a (sometimes) regular Sunday morning bike ride. But with Baguette’s long-standing distaste for sleep, I can’t even read a magazine in one sitting. Recently, it took me three weeks to finish streaming a movie. We have literally years of “Castle” in our DVR–or at least we did until we gave up and deleted them, with plans to buy the DVDs at some point in the future.

    3) There’s an awful lot of screaming. Baguette is frustrated by her inability to communicate. She’s also frustrated by the incessant demands of her ABA schedule. And sometimes the only way she can express that is to rage and rage and rage. As far as I’ve been able to figure it out, the only thing I can do is be there with her, as calmly as possible, and let the rage burn itself out. Friday was one of those days. After at least an hour of crying and screaming, she wore herself out until she was able to say, “I want carry me,” and I stood there with my arms around her, rocking her back and forth for at least 15 minutes. Then we sat down on the couch, and I held her on my lap until she slid down on the floor, still with her shoulder against my leg. I didn’t move until she did, because when she moved away, that meant she was feeling better. (Sorry, neighbors. This is just how it is.)

    4) There’s probably a #4, but I’m too tired to come up with it.

    5) The surprises never end. Baguette loves the water. She’s been teaching herself ASL–and now she’s teaching me, too. Lately she tells me she wants to play with her by saying, “Come along, Mommy,” and I have no idea where that phrase came from.

    All of this will change with time. And that’s normal, too.

  • Your Mileage May Vary

    This morning, when I took Baguette to daycare, she was excited to be there. She opened the door to the classroom without being prompted, and she ran up to a group of girls and started playing with the same toys they were using.

    (This is HUGE. Six months ago, she would have retreated to the corner with a book. Now she chooses to play with the other kids.)

    She picked up a toy ice cream cone and said, “Ice cream!” One of the other girls said, “Don’t eat it!”

    I said, “Oh, it’s okay. I think she knows the difference between the toy and real ice cream.”

    The girl said, “Sometimes babies put things in their mouth.”

    Every child in that room is 3 or 4.

    I said, “Well, she isn’t a baby.”

    “Yes, she is. She can’t talk.”

    One of the other little girls–we’ll call her Daisy–who has been in the same room as Baguette since they were both infants, said, “She can’t do anything.”

    Baguette dropped the cone and headed for the bookshelf, where she selected Can You Tell Me How to Get to Sesame Street. It’s the book she’s most likely to pick up at school. I think I know why; it’s because no one in that book would be mean to her, with the possible exception of Oscar.

    Daisy said, “Well, she knows Hebrew.”

    I said, “She knows Hebrew?”

    Daisy said, “Uh huh.”

    I answered, “She’s still learning some things, but she’ll learn faster if you’re nice to her.”

    Bestie came over to the bookshelf to hang out with Baguette, and gave her a one-armed hug.

    Parenting is harder than being in your 40s.

  • Why Baguette Has Her Own iPad, Part 2

    She can use it to teach herself sign language.
    She can use it to teach herself sign language.

    Part 1