Pre-conference jitters

Tomorrow is the first parent-teacher conference of Charlotte’s Kindergarten year. As per usual, the closer we get to the time, the more my anxiety ramps up. This is not an IEP review, just a regular conference, although I think maybe the inclusion teacher will be there too.

It reminds me of my pregnancies when, as the time drew closer and closer to that monthly appointment, I was convinced we’d go in and the doctor wouldn’t be able to find the heartbeat. Such a relief every time I heard that whoosh whoosh.

While I know that everyone is generally pleased with how Charlotte is doing, the comments always center on her acclimating to the environment, following instructions, handling change in the routine, etc. Every day the communication notebook says she had a great day.

What I don’t know is whether she’s learning anything. Or, more accurately, if what she’s learning is sinking in.

It will be interesting to see what her work looks like, and how it compares to the work she did in preschool. If you remember, in preschool the teacher said that Charlotte was unable to complete any work. We hypothesized it was because of the chaos of the room.

I am still concerned that the environment is too busy for Charlotte. When I volunteered this week, I had a chance to observe her in action. During a time the teacher was giving group instruction, she was busy watching another kid who was acting silly. Her eyes were not the least bit focused on her teacher.

I’ve also noticed that Charlotte always knows what centers all the other kids did each day. She will tell me what she did, but also what centers other kids did. And if I ask about a specific kid, she knows. I know she has a great eye for detail and a strong memory, but I’m wondering if she’s paying more attention to the kids in her class than the work.

And then I wonder, is that even anything to worry about? Maybe lots of kids are really tuned into what the other kids are doing. How am I supposed to know what is normal and what isn’t?

So I wait. We’ll see what the teacher tells us at the conference tomorrow. We’ll watch to see if there’s progress made over time. Meanwhile I’ll explore other learning environments to see if there’s one that might be a better fit for my special girl.

Sarah’s plan

Sarah knows her sister well.

Charlotte has been struggling lately. Her cheeks are flushed, her belly is itching. Combined with her not great behavior and the signs point to food sensitivity. I’m suspecting soy. Time will tell.

She was having a fit tonight, laying on the floor. You can imagine.

Suddenly Sarah appears.

She throws herself down on top of Charlotte (deep pressure) and starts saying, “Charlotte! Charlotte! I have a plan to cheer you up! I have a plan to cheer you up!”

Mom and Dad whip around to see how this unfolds.

With all eyes on her, Sarah scrambles, breathlessly, and grabs a Fossil watch tin and lid that she’d stolen earlier from my nightstand.

She stands over Charlotte and while banging the tin and its lid together she sings, “Cheer up! Cheer up! Cheer up!”

Caught completely off guard, Charlotte starts giggling.

Soon we’re all laughing. And we’re all cheered up.

Meltdown averted.

Having a sister is good.

Not always a reason

In my continuing (but completely useless because what is the point really?) efforts to be able to proclaim that Charlotte is not really Autistic (sorry, just being honest) I find myself (once again) having to step back and acknowledge that sometimes it’s just the Autism talking. Or, more precisely, it’s the Autism not talking.

[Aside: I'm not upset or bothered by Charlotte being Autistic (having Autism or Asperger's, whatever), I accept it. I guess why I jump on this train of thought periodically has to do with my hopes for her future. If she's not really Autistic, than she has a brighter future (or so I find myself thinking, foolishly I know, such is the perils of parenting a child who sometimes does and sometimes doesn't act all spectrum-y). Believe me, I know people with Autism have bright futures. But this is my blog and it's okay for me to be honest about my trains of thought, however foolish or unproductive they may be.]

Anyway, back to my point.

Ever since we discovered the link between dairy and Charlotte’s sensory-seeking and screaming and general wonkiness, it’s been hard not to analyze some of her usual ASD traits and wonder if it’s because of something she consumed.

Last week after 3 days of Children’s Tylenol coincided with some not good times, we made the connection that, hey, maybe it’s the Tylenol. Stopped that and wonkiness began to subside.

Then went straight into Halloween where she got all loaded up on artificial colors, which are not usually in her diet, and the wonkiness, albeit to a lesser degree, returned, mostly in the form of spaciness and reduced eye contact and not responding all that much.

Now we’re a few days past the candy and today she was all sensory-seeking, a bit spacey, not a lot of eye contact and, of course, not responding.

And as much as I’d like to be able to point to something she consumed as the reason behind it, I can’t.

I can only point to Autism itself.

This is what Autism looks like in our house.

This does not take away from the fact that, yes, dairy does have a whacked-out effect on her causing a lot of screaming and significant sensory-seeking. And, yes, Tylenol definitely ramped her up in those areas as well.

But a typical day in the life of Autism in this house has varying degrees of those behaviors: some days she has more eye contact than others, some days she is more communicative than others, some days she sensory-seeks more than others.

On those days where she is less of all those, those are the days that my patience is tested and tried. It’s much easier to be patient when I know that her extreme behavior is from some errant casein ingestion. But when, to the best of my knowledge, that is not the case, and she’s just “a little bit Autistic” – those are the days I feel like I can’t handle.

Those are the times that I need to, as my husband says, “put it in check.” Quit getting so frustrated. Stop expecting more of her than she is going to give. Capable of giving.

Dietary interventions are not a cure. (I don’t believe there is a cure for Autism, by the way.) They are just another tool, just like other therapies available, that work great for some kids and have little effect on others.

Dietary interventions help. They do. But it doesn’t change the fact that she is still Autistic.

This is something I need to stop forgetting. She is on the Spectrum. Period. Welcome back to reality, Mama.

Worth it

I could say we went there to surprise Charlotte. But, when it came right down to it, I had the chance to skip out on making dinner, so I took it. (I’m no fool, friends.)

We went to Five Guys last night.

When placing her order, Charlotte ordered every thing on the menu.

“I’d like hot dogs, burgers and fries.”

The wait wasn’t too bad, although it was pretty chaotic in there.

The burgers and fries and hot dogs lived up to our memories, thankfully.

A good and greasy dinner was had by all.

Speaking of good dinners, click on over to (Never) Too Many Cooks for my newest post: Taco Salad. I share a recipe for making your own taco seasoning.

Anticipation

When we were on vacation this past summer, we fine dined at the President’s favorite joint – Five Guys Burgers and Fries.

It was a hit. We all loved it. Burgers, hot dogs, fries. Ice cold Coke.

When given her choice of where to eat one day while down there, Charlotte chose Five Guys again.

She has not stopped talking about it. In fact, I believe it may be her favorite memory from summer vacation (am I raising a little foodie or what?).

You can imagine her happiness when we found out a Five Guys franchise is opening just minutes from our house.

Charlotte cannot stop talking about it. She has planned our entire trip. Most especially her order.

“Hot dog, no bun, and French fries and mustard!!”

It opens Monday. And she is none too happy that I’m making her wait till Tuesday to go (no school, so no rush at lunchtime).

This weekend we’ve been pretending to eat all of our meals at Five Guys.

The last thing she said before going to bed was, “Maybe we can go to Five Guys a different day. Before Tuesday.”

Maybe I’ll surprise her and we’ll go there for dinner Monday.

Bliss at Five Guys - South Carolina

Stay tuned for a full report.

(Never) Too Many Cooks

I love to eat.

There, I said it. It’s out there.

I also love to cook. And as you may remember, Charlotte has some food sensitivities (gluten and casein) so I have had to reinvent myself in the kitchen.

When I’m time-crunched, it’s nearly impossible to default to quick fixes like frozen pizza or Dino nuggets. No more grilled cheese sandwiches or quesadillas for lunch.

It’s all scratch cooking, all the time. Nearly.

And so I find myself talking about, thinking about, and planning for meals all the time. All. The. Time.

I’ve tossed around the idea of food blog for awhile, but I know that I could never commit to one all by myself.

Turns out I’m not the only one who loves food, cooking and eating, and talking about food, cooking and eating too.

And so, after countless emails and a few tweets, a new blog is born.

(Never) Too Many Cooks.

You can read Kristen’s fabulous introductory post here.

And my first post is up: my recipe for gluten free salmon patties.

The other two contributors, along with myself and Kristen, are Niksmom and TC.

In the not too distant future, ads will show up on the (Never) Too Many Cooks, and we’ll share our plans to donate the revenue from the ads to charity. Not just any charity, but one that hopefully represents how we call came together.

So please, click on over, sit back, and let’s talk us some food!

Just great, no caveats

Often times it seems like Charlotte’s strengths are measured in comparison to how far she’s come or in relation to her ASD-ness.

At school:

“She participated in the fire assembly and didn’t get scared.”

“She engaged with the other girls during Girl Scout meeting and didn’t wander off.”

“She had 4 (or 5 or 6) back and forth exchanges with another child in class. Look how far she’s come!”

At home:

The kids were playing in the playroom. The Dad and I were bustling about the kitchen. He said to me: “I got a flu shot at work today.”

“Oh, I didn’t know you were getting one.”

“Yeah, I did last year too. It was free.”

A couple of minutes later Charlotte yells out: “Daddy, were you brave?”

He asks, “Brave about what?”

“When you got your flu shot,” she responds.

Our jaws hit the ground. We couldn’t believe she heard us talking in another room, not directly to her, while she was busy playing, processed what we said, and inquired totally appropriately about it.

That was great conversation … for her!

Why did we caveat it? Yes, I know, it’s because a few months ago she wasn’t tuning in and responding to ambient conversation.

She really has come a long way and I will never stop celebrating it or cease to be amazed and inspired by her.

However, I even find myself caveating her reading ability. I end up explaining Hyperlexia and that it’s on the Autism spectrum. As if that explains Charlotte’s ability to read. Isn’t is possible she’s also just smart?

I mean, I know she’s smart, but when I tell someone she taught herself to read when she was 2, and they exclaim, “Oh my goodness she’s a genius,” I feel like I have to give a broader picture of her.

It’s kinda nice as she’s getting older and lots of 5 year olds can read. I don’t feel any need to exclaim, “But she can read chapter books!” No more explanations needed.

But you know what’s really nice? This hasn’t happened too often, but when it does, my heart feels like it could burst.

I love when Charlotte is acknowledged positively for something all on her own, unrelated to how far she’s come or ‘despite’ that she has ASD.

The communication notebook last week had this comment.

“Writing Workshop: Charlotte has a wonderful imagination for writing stories!”

The note went on to give the specifics of what they are working on (that stories have a beginning, middle and end), and also the other things she did that day.

But all I could see was that one line: “Charlotte has a wonderful imagination for writing stories!”

Heart bursting over here!

She’s being recognized and praised for talents and strengths that have nothing to do with her being an ASD kid or compared to some other time.

I could almost cry when I think about it. Why? Maybe because I’ve recognized that she’s a good story writer. Maybe because that’s what I was known for being good at when I was a kid.

Maybe, and I suspect this is at the core, it’s because I see this as the beginning of revealing the person Charlotte is going to become. A person who will not always be measured in terms of disability and progress. But just in terms of her own person.

Visual schedule

As promised, I made a visual schedule for Charlotte and Sarah. My goal was to add a bit more structure to our day in hopes of creating new habits. Namely, cleaning up and practicing piano (a returning habit, I suppose).

I should confess, first, though that I did not make the schedule myself. I was volunteering in Charlotte’s class last week (actually, I was in the hall doing a project for the teacher) and I had the opportunity to talk with her Special Ed teacher for close to half an hour. Yay! That was enlightening!

She offered to make a visual schedule using the template that they use in school. She included a few picture cards for me, and then I used this website (which was recommended to me by this lovely blogger) to make some additional cards.

In addition to the aforementioned new habits, I decided to throw one more into the mix: potty before bed. Charlotte can be very stubborn (you may or may not have realized this) and so she will often refuse to potty before bed. Without fail, this leads to an extra load of laundry for me the next day.

We’ve tried many things to coerce her into going, but as we all know, there are some things we simply cannot control.

Yesterday, Day 1 using the visual schedule, was great. To be fair, she had started practicing her piano again (yay!) before yesterday, but because of the visual schedule she played all of her songs, when I asked, instead of just one.

And, joy of joys, she helped me clean up. I set the timer for 10 minutes and gave her ONE task which should have taken all of 2 minutes. She played with the toy she was supposed to put away for 9 minutes, and then scrambled the last minute to clean it up.

But she cleaned up! Wasn’t exactly FlyLady standards, but it was an effort heartily appreciated.

Sarah was a total rock star with cleaning up though. She was a little “clean up, clean up” singing machine. This, however, came after a mega tantrum about wanting “puh-wetzels” now! She so did not care that the Time For card said “clean up” and not “snack.” She wanted her snack then, dammit. And she got it. She cleaned up with a giant pretzel stick in her hand.

There was even success last night with Charlotte using the potty before bed: and no extra load of laundry today!

Visual schedules are great!

You know who else thinks so? I mean, really thinks so?

Charlotte.

First thing today she made up a little schedule for the morning. Breakfast, Play, Clean up, Piano, Snack, TV Show, Lunch.

After each activity was completed, she ran to move her picture card into the envelope and start the next thing. She even cleaned up again (same exact toy she cleaned up as yesterday, same exact manner, same dialogue -hello scripting).

She was so excited that she flew through the whole routine and the next thing I knew she was saying, “Time for luuuuunch!” It was 10:30.

My suggestion to play longer was not well-received.

We worked through it, though, and made a new ‘mid-morning to lunch’ routine and all was mostly well.

Tonight, however, she was less than impressed with her Daddy’s entreaties that “the visual schedule says Go Potty and so you must go.”

I’ll probably be doing that extra load of laundry tomorrow.

While we’re still in our infancy stage with using a visual schedule, I have to say that it is starting out well. Both girls have responded positively to it. Charlotte, especially, but I think it appeals to her strong need for routine and order.

I’m seriously considering making one for my husband. It would have visuals like “put shoes away” and “dirty clothes go in basket.”

You think it could work?

S’okay?

Both of my kids are very independent. I don’t micromanage their time or activities.

Charlotte can operate the remote and find the DVRed shows, so when she wants to watch a show, she does. Luckily she self-limits the amount of television she watches, so I don’t have set any limits. (Whew, I feel like I got a free pass on that potential battle.)

If they want something to eat or drink, they can have it – within reason of course. No sweets before dinner is a rule (that has been tested many times).

Independence is good, I encourage that.

But, at the same time, I feel like they need to ask first. If you want to eat an apple, fine, but you need to at least ask first.

This is not something Sarah or Charlotte seem to understand.

If you want to color, fine, but you need to ask first!

You don’t just push a chair to the counter, climb up, and then reeeeeeeach way up high to get the crayons and markers.

Most of the time I don’t say no to requests to color. Unless of course it’s 5 minutes before it’s time to leave for school (as noted in this post).

If you want a cup of chocolate rice  milk, no problem. Just ask. No need to get the carton of chocolate rice milk out all by yourself and pour it all over the counter into the cup all by yourself.

I can help. That’s why I’m here.

Perhaps my constant reminders to ask first are finally sinking in. At least with Sarah.

She has been asking permission lately. For everything.

“S’okay if I can push my baby in the stroller?”

Sure, Sarah, you can take your baby for a walk.

“S’okay if me and Charlotte can go play in my room.”

Yeah, go right ahead. And thanks for asking.

What I don’t get, though, is why I never hear,

“S’okay if I can take this marker and scribble on the wall?”

or

“S’okay if I can throw Charlotte’s Belle doll in the toilet?”

Instead, I hear the after-giggle. She has a very distinct giggle, low and deep, that she reserves for when she knows she’s done something she shouldn’t. When you hear that giggle, be prepared.

Be especially prepared if she’s running out of the bathroom when you hear that giggle. And grab some rubber gloves.

Where’s that mantra when you need it?

I have a mantra.

Perhaps I’ve mentioned it.

This too shall pass.

If ever I’ve needed to heed my own mantra, now is the time.

Charlotte, apparently, is in love.

My first inkling came when she would tell me that for Halloween Kevin (not his real name) was going to dress up as a Knight and she was going to go Trick or Treating at his house. That Kevin is going to be a Knight is particularly relevant as Charlotte plans to be a bride.

Early in the week she said, “I wish that Kevin and I could get married.”

What?!

I volunteered in her class this week and BigC (the special ed teacher) told me that Charlotte introduces Kevin as her husband.

Kevin’s response: “I ain’t nobody’s husband.”

Charlotte was disappointed that Kevin was out sick that day and she couldn’t introduce me. I discovered they sit at the same table. Never underestimate the importance of proximity when you’re a 5-year-old in love.

Later in the week she asked if we could go to Kevin’s house on Valentine’s Day. Valentine’s!!

Today she drew a picture of Kevin.

She said: “I drew a picture of Kevin and I’m going to put in his mailbox and when he sees it he’ll say ‘Hey what’s this?’ and I’ll say ‘I made that for you, Kevin.’”

Big smile on her face.

She put on a little green heart-shaped ring and called it her wedding ring. “I’m going to wear this to school and show Kevin.”

Lord help me.

Just before it was time to leave for school she said, “Mommy you need to clean up your face because I don’t want you to meet Kevin looking like a mess.”

I couldn’t make this stuff up if I tried.

Charlotte’s grandparents came over today for dinner. The first thing she did was show them the picture she drew. “This is Kevin, he’s my husband.”

There was further talk about Kevin dressing up as a Knight and them Trick or Treating together. I asked, “Have you talked to Kevin about this?”

“No.”

Kevin was the topic of conversation much of the evening. Her topic of conversation, I should clarify.

I have joked that the only things Charlotte ever did early were Hair and Teeth. I am not at all ready to add Boyfriend to that list!

I will say this: Tiana from the coming-out-soon movie The Princess and the Frog better be a smart, independent girl whose sole mission is something other than finding Prince Charming.

***

Okay, I was going to end right there. But then I went and read more about Tiana. Holy crap Charlotte is going to love this girl. She’s a waitress who is an aspiring chef!!

Charlotte wants to be a chef when she grows up! And remember she was a waitress last Halloween!

Wikipedia says this about Tiana: “She’s a strong woman who doesn’t need anyone to do things for her…She wants to do things for herself.” She must learn that balance is important in life; to be happy, she needs both love and a career.

Since I do believe it is Disney that made Charlotte fall in love with the idea of finding a husband, then I think Disney needs to pitch in and help undo that notion a little bit.

Here’s hoping Tiana does the trick.