Tragic Sandwich

Category: Autism Spectrum Disorder

  • 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

  • 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:

  • Baguette, of Late

    The last six weeks have been pretty incredible. Toward the end of December, both Baguette’s day care and our workplace closed for the holidays. At the same time, her evening ABA therapist got married and took a few weeks off. We did schedule one session with the therapist who goes to her daycare, but for the most part it was a real break for all of us.

    We’ve discovered that these breaks are very important. Routine lets Baguette learn new skills; the breaks are when she shows us what she can do. And when this break ended, she kept going. Here is a not even remotely exhaustive list of the new things we’re seeing from her.

    • She answered a question with a specific response: When Rockin’ Elmo said, “What do you want to do now?” she answered, “Run on the grass.”
    • She didn’t just quote, but imitated the “how do you wrap a present” segment from the Elmo’s World about birthdays.
    • On New Year’s Eve, she let Bestie watch videos with her on the iPad.
    • One day, after several viewings of a “Happy Halloween” Sesame Street compilation on YouTube, she came up behind us when we were in another room and said “Boo!”
    • One evening, she said, “Want carry you.” Then she jumped up into my arms and yelled, “Whee!”
    • Another evening, before bed, she sang first the first two lines of her favorite lullaby by herself.
    • She played with her Connect Four game and took turns with her stuffed lion.
    • When coloring, she enhanced a drawing of an elephant to show it spraying water with its trunk.
    • This morning, she used her Sesame Street-inspired gift-wrapping skills to help wrap Bestie’s birthday present.
    • At the zoo:

      • * “The elephant is eating the carrots”
      * “Look, an elephant”
      * “I see a lion”

    • After climbing and playing on the elephant statue at the zoo playground, she ran back, hugged it, and said “I love you. I love you.”

    small girl sitting on statue of elephant

    To a lot of people, these developments may not sound like much. But for Baguette, and for us, they’re huge.

    She’s communicating in ways she never has before. She’s expressing a complexity of thought that is new. She’s interacting in ways that we haven’t seen.

    Because not only will she let the lion take turns at Connect Four, but when she completed a task at day care and her teacher asked her if she wanted to pick a friend to jump with, she walked up to one of the little boys in her class and held out her hands to him.

    It’s hard to know who was happiest about this–us, her teacher, or the little boy, who apparently was overjoyed that the girl who talks to no one had picked him out of the group. But probably the answer is that we were happiest. Because we know what it took her to get here.

  • Progress

    A week ago, Baguette was coloring in broad swaths of marker. Now she can do this.

    coloring book page with Big Bird

    All.

    By.

    Herself.

    Don’t get me wrong, it’s not this precise all the time. But she suddenly gets what the lines are for, and pays attention to them. She matches the colors of the characters, whether it’s Zoe or Clifford the Big Red Dog. She’s doing SO MUCH right now, and it’s incredible to see how all of the hard work we’ve been doing, all of the hard work she’s been doing, is helping things come together.

  • Auld Lang Syne

    When I was younger, I thought it would be fun to go to a big, blowout New Year’s Eve party.

    I never did. I’m totally fine with that.

    First of all, I didn’t want to go by myself; I wanted to go to that kind of party with a boyfriend. And I almost never had a boyfriend, which limited my opportunities. (I did once go to First Night in Manhattan with a friend, her husband, and her brother, but I’m not even sure that was a set-up; I think we just all wanted to go to First Night.)

    So what have been my favorite New Year’s Eve celebrations?

    Growing up, we would have dinner at a Chinese restaurant and then see some blockbuster or other. That was always good.

    One year–I can’t remember whether I was dating Mr. Sandwich yet–another friend invited me to a party at her brother’s Manhattan apartment (different friend, different brother, same Manhattan). But it was supposed to snow, and my block was always last to be plowed, and at the last minute I canceled because I wasn’t sure I’d get home. Instead, I spent New Year’s Eve curled up on my couch, watching movies I can no longer recall and eating either Chinese food or pizza. The details don’t matter, because what I do remember is that it was a great evening.

    When we were dating, Mr. Sandwich and I spent one New Year’s Eve with his friends, starting at Cheesecake Factory and moving to one friend’s nearby apartment; we spent others playing board games with some of my friends.

    The year we moved into our house, we hosted a party at which I learned that if I’m going to drink, I really need to eat dinner. Or at least lunch. But that lesson didn’t make itself clear until after everyone else had gone home, so the party itself was a lot of fun.

    Since then, we tend to stay home, safe from the drunk drivers of the world. Last year, Bestie and her parents came over for dinner (we planned to start early, to reduce their odds of being menaced by drunk drivers on their return). A good time was had by all, including Wicket–although the hat placed on her head spoke more to her tolerance than to her awareness of the passage of time.

    This year, we have planned absolutely nothing. It’s been a busy couple of weeks, with lots of events filled with people who want to see Baguette. She’s done really well with it, but she needs plenty of downtime. We all do. So we have no plans, and I think it’s going to be another great evening.

    So to all, near and far–may you have a Happy New Year. And those good wishes aren’t just from me. They’re also from Wicket.

    small dog wearing Happy New Year hat and leis

  • Q & A?

    Question mark in Esbjerg

    I read this list of “the best” children’s books of 2014. A lot of them look great. And then the entry for The Baby Tree by Sophie Blackall got me thinking.

    The standard advice about answering children’s questions about “tricky” subjects–sex, death, etc.–is to answer the question that was asked. Don’t overthink it, don’t give more information than they can process. They asked a question that reflects the level of information they’re ready for.

    Sounds great. I certainly want to teach Baguette everything she wants to know.

    But what if your child can’t ask the questions to begin with? How do we know what she wants to know?

    Photo by Alexander Henning Drachmann, via Flickr. Creative Commons.

  • 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.

  • On Gifts

    birthday presents

    Baguette loves gifts, and she gets a lot of them. Mr. Sandwich and I are constantly buying her books, and she had grandparents on both sides who are always on the lookout for toys and games that will capture her interest.

    What we’ve learned, though, is that giving Baguette something, and having her get it–well, those are two different things, and they happen in very different time frames.

    For her birthday, in April, one pair of grandparents gave her a Monsters University Scare Factory and a Rescue City Center set. She started playing with it last week. This is August.

    This week, four new Wibbly Pig books arrived in the mail. I suspect it will take us several weeks to get all of them into rotation, and Baguette loves Wibbly Pig.

    We’ve seen this before, and we expect it. Baguette needs time to warm up to toys and books. She needs to decide how she wants to play with them. We’ve tried showing her, and it just doesn’t seem to work–but eventually she’ll figure it out and incorporate it into her play.

    And while she’ll lose interest in a particular toy, the odds are pretty good that she’ll come back to it, months or a year later. You never know when that set of stacking rings is going to re-emerge.

    I also understand, though, that as a gift-giver, people want a reaction. They want to see that they did actually pick the right gift, that they’ve brought happiness to the recipient. It’s hard to give something and feel like it didn’t even register. (We do have her say “Thank you,” but some enthusiasm is usually nice.)

    Every once in a while, though, that magic moment happens. When Baguette was two and a half, we had a playdate. The other little girl had a Rockin’ Elmo that Baguette just loved. So I told my dad about it, and he bought it for her as a Christmas gift. And when she unwrapped it, and it started to sing and move, she was in raptures–delighted shrieks, beaming smiles, the works.

    We got to see it again last weekend, at Mr. Sandwich’s 25-year high school reunion. It was at a restaurant, so we got a table and ate dinner there. That gave Baguette time to settle into the space and enjoy herself. Then we went out on the patio and mingled with the rest of the alumni.

    One of his classmates, having heard about Baguette’s love of “Frozen,” brought her a set of character finger puppets. Baguette lit up and gave dazzling smiles. She even stopped eating her Pirates’ Booty for a moment (and let me tell you, it is hard to get her to respond to anything when she is eating).

    And those finger puppets? On a nightly basis, in tiny, high-pitched voices, they act out this exchange from “In Summer”:

    Kristoff: I’m gonna tell him.
    Anna: Don’t you dare!