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:

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.

Little Talks

Mr. Sandwich wrote this on Monday, and we both wanted to share it here.

Last week we got the news we had been both expecting and dreading. Baguette was formally diagnosed with Autism Spectrum Disorder. This was not a complete surprise, we had been looking at symptoms and ‘benchmarks’ to one degree or another for at least a year. There was speech therapy, there were visits with the principal at daycare about her behavior and class integration issues, of potty training, and the need for her to have further help. To the friends I’ve talked about it with, I have likened it to a punch that you can see coming. You can brace for it, but you’re still going to feel it.

So now we have a doctor’s diagnosis. We have a downloaded packet of steps to follow and paths to pursue. As I read my packet I see that I can expect to go through the stages of grief, which I don’t know if I am, or I don’t know if I started months ago when it became so clear that Baguette was different from her peers. I’ve talked with friends whose children are affected too. I’ve felt at alternating times that I am dizzy and steady, even keeled and bowled over. Today Baguette bowled me over, and I haven’t quite gotten up yet.

I picked her up from daycare late and was rushing to the pool. We’ve noticed how she seems to respond positively to the water, both with speech and behavior and for the past several weeks I’ve been trying to get her into the pool every day. When I buckled her into the carseat she asked for her Sesame Street CD like she always does, but that was in the other car, so all I could do was turn on the radio for the 3-minute drive to the park pool. Of Monsters and Men’s “Little Talks” was playing on the radio and we heard most of that by the time we hit the parking lot. I was running late, and we would only have 12 minutes worth of swimming so I was hustling as fast as I could. As I scooped up Baguette, she was reciting to me. She frequently recites, she doesn’t speak directly, she reiterates whole passages, whole verses of books and songs she knows and keeps as her friends and repeats them to me and Mommy and the World. While I was initially distracted as I fast-marched through the parking lot, she reached out and grabbed my face to turn me towards her and I heard clearly what she was reciting.

“Listen word I say. Hey. Scream sound same. Hey. Truth vary. Ship carry. Safe shore.”

She was repeating to me the lyrics she had heard on the radio just moments before. She’s heard that song played before, but not recently, and even if she did I’m not sure I’d expect any three-year-old to mimic lyrics like that. For a brief moment I was struck dumbfounded in the parking lot, trapped between wanting to laugh and congratulate her on her razor-sharp retention and cry over the fact that she couldn’t tell me things other little girls can. The fact that the lyrics are about a woman whose mind is at war with her and the man who still loves her despite this is just the brass wrapped around these particular knuckles. I didn’t have time to process the moment completely. She had started singing “The Farmer in the Dell” and time was ticking away. We only had a few minutes to get in the pool and that was the reason why we were there, for her benefit, not mine.

Hours have passed now and I can’t shake that refrain she recited to me. I can’t help but think that she was trying to tell me how the wheels in her mind were turning, how she needed me to communicate to her, how she hears the world. “Don’t listen to a word I say. (Hey) The screams all sound the same. (Hey) Though the Truth may vary, this ship will carry our bodies safe to shore.” That song will never be the same for me. Nothing will ever be the same.

What Baguette Is Saying These Days

Here are a few things we’re likely to hear from Baguette right now:

  • “I want listen to Pajanimals music.”
  • “I want iPad, please.”
  • “That wunnerfull!” (most likely to be heard just after she jumps into the pool and surfaces)

And the kicker:

  • “I can’t sleeping!”

We knowing, Baguette. We knowing.

Update: Baguette and Speech Therapy

Forgive me for the rambling post. It won’t be the last.

Two months ago, I wrote that we were exploring speech therapy for Baguette, based on feedback from her school and our concerns about her confidence levels.

While we were able to get an in-network referral, it wasn’t possible to get a timely appointment. And while the public school system does offer free speech therapy, Baguette isn’t old enough qualify for it, and we didn’t want to wait until she is. So we got references and decided to pursue private therapy.

For nearly two months, Mr. Sandwich has been taking her to the therapist’s office twice a week, and the therapist has made some visits to Baguette in her classroom.

I have to be honest–I don’t really understand a lot of this. To start with, I haven’t seen the speech therapist since the original evaluation. For a host of reasons, it’s easier for Mr. Sandwich to take time away from work than it is for me. And a lot of the terminology is foreign to me; I’m trying to learn it, but I think that there’s a certain amount of irony that a field that is about improving communication uses jargon that gets in the way of communication.

The therapist’s concern isn’t so much about enunciation as it is about the way Baguette uses language; she apparently uses it internally rather than externally. (If this topic is new to you, do you understand what that means, or do you need someone to explain it to you? That’s the kind of jargon I’m talking about.)

The focus is on play, encouraging Baguette to communicate in specific ways. Right now we’re working on getting her to answer questions with “Yes.”

I spoke by phone with the therapist before Christmas, and she said that Baguette is “making wonderful progress.” People around us say that they see her being much more interactive with her peers, and that she talks more freely and confidently. We see that ourselves.

So you may understand my frustration and confusion when we learned that in addition to her twice-weekly sessions (at least one of which will be paired with a music therapy session), they want to add three occupational therapy sessions each week. If Baguette’s progress is so wonderful, why are we more than doubling–possibly even tripling–her therapy? Why does she need sessions every day?

People keep coming back to the fact that she plays with sand, often lying down in it and pouring it over herself. They say that this isn’t “purposeful play.”

So, in my effort to be a good and involved parent, I set out to research “purposeful play.” And I have no idea what it is. I see the phrase used, but I can’t find a solid definition of it. And I can find nothing about why the way Baguette plays with sand is bad. In fact, all I can find is that sand play is really, really good.

Next week we go to the in-network evaluation. I’m curious to hear what they have to say, and what services will be available to us. But right now I’m very, very skeptical.

Confidence and Communication

Backside My Fair Lady - In Stereo 1959

I’ve written a bit about Baguette’s school, and their concerns about how she interacts with her classmates. Here are some of our observations:

1) She does get wary around unfamiliar people and large groups.

2) She is overjoyed to play with Bestie, and she warms up quickly to unfamiliar children. Shoot, when we went to Santa Barbara, we’d get to a playground and the first thing she’d do was hug some little girl she’d never seen before.

3) She is not as articulate as her classmates. We knew this was the case with Bestie, but Bestie is a little older and has always been very verbal–the two of them really can’t be compared. Now, though, we’re seeing a difference between her and classmates who are several months younger.

4) Her vocabulary is booming. She repeats things we say, and things she hears from Sesame Street.

5) Her enunciation is not very clear at all.

The result of this is that she lacks confidence in large groups. So she talks up a storm at home, but is largely silent at school. And it’s getting in the way of her toilet training, because while she is telling people that she needs to go to the bathroom, she’s not doing it with words–and apparently her teachers are unable to recognize that.

We wanted to let her develop at her own pace, and gave her until 2-1/2. But it’s clear that the pace is too slow for her own satisfaction, and she’s getting frustrated by the discrepancy between her desire to communicate and her ability to do so.

So we’ve started to explore speech therapy. We have a referral from her doctor, but we couldn’t get an appointment until late January–by which time we’ll have changed insurance providers, making that referral useless. Plus, January. And there are programs available through the public school system, but she isn’t eligible to participate until she turns three.

The next option is a private program, for which we’d pay out of pocket. Not cheap, not cheap at all. But this is a Big Deal, and we save for Big Deal expenses.

We’re gearing up for intensive research. Because we want to give our daughter opportunities. Not the moon. Just the usual stuff. Like self-expression.

Photo by Piano Piano! via Flickr.

Baby Talk

Lt. Weinberg: You’ve heard her. My daughter said a word. She said, “Pa.”
Kaffee: She was pointing to a mailbox, Sam.
Lt. Weinberg: That’s right. She pointed to the mailbox as if to say, “Pa, look, a mailbox.”

A Few Good Men

My mother always said that my first word was “word.” Today, that sounds like I must have been a really early rapper, but I’m pretty sure that wasn’t the case.

Baguette’s first word was “monkey.” She said it while looking at a monkey, so I’m reasonably certain she was actually talking about monkeys. Also, Mr. Sandwich’s mother heard it too, and there’s no way a grandmother could be biased in favor of early speech, right? Meanwhile, Baguette has yet to repeat the word.

Her next word, several weeks later, was “diaper.” My unbiased witness in this case was Mr. Sandwich.

Now she’s 16 months old, and her vocabulary continues to grow. Here are a few of her favorites:

  • “Mama”
  • “Daddy”
  • “Wicket”
  • “Up”
  • “Out”
  • “Outside”
  • “Bubble”
  • “Ball”

…and something that sounds suspiciously like “more milk.”

What were your children’s earliest words?