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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.
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!
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.
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?
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.
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.
Things are trucking along in the world of special dieting in our house. Charlotte has been completely gluten free since mid-August, and completely dairy free since the beginning of August. There are a few other things we avoid, keep to a minimum, but are not entirely avoided (like soy).
Early this past summer when I removed dairy from Charlotte’s diet due to her wonky behavior, I didn’t remove cheese. I know it’s dairy, but we didn’t feel like it was a big deal. And when we did completely remove it later, it didn’t seem to have a noticeable effect.
So a few weeks ago when Charlotte began really wanting pizza (Vegan cheese, my friends, just doesn’t cut it), we decided to see what would happen if she had a gluten free pizza with cheese on it. That was on a Friday night. No big deal, it seemed, maybe cheese really isn’t a problem. Later the following week I let her have some Parmesan cheese on her gluten free pasta, and that next Friday we did the gluten free pizza with cheese again.
I think dairy has some kind of cumulative effect. Because the next day Charlotte was wonky. And itchy.
Actually, the itchiness started earlier in the week. Charlotte has dealt with chronically itchy skin for a long, long time. She had eczema her first year of life, the next couple of years were fine, but then sometime after turning 3, she started scratching her belly. To the point that it would bleed. A lot.
Absolutely nothing would keep it away. Cortisone cream provided temporary relief, but the redness and itching always came back. It went away when we changed her diet dramatically.
After a couple of rounds of cheese, it’s back. As testament to her outstanding communication abilities, she woke up one morning and hollered down from her room, “Mommmmyyyyyyy, I can’t find my cortisone cream! Where is it?!”
“Like, duh, Charlotte I don’t keep it on your room where you might decide to lack some impulse control with it. It’s down here in the kitchen.”
“Can you bring it up to me?”
“Why do you need it?”
“So I can put it on my belly and stop the itching!!!”
[Damn good communication thankyouverymuch.]
After the 2nd pizza is when the wonkies hit.
Just what are the wonkies, you might wonder.
I’m sure it’s different for every kid, but in Charlotte’s case this time she started doing what might be considered a verbal stim in ASD world. She goes, “Eh eh eh eh eh eh eh eh eh” over and over and over again. Really, really loud, and really, really fast. She does it especially when you try to talk to her, or when you’re talking to other people, or when you’re telling her to get dressed, or brush her hair. Louder and louder, faster and faster.
(It seems different dairy cause different reactions: ice cream and milk put her into full-on mega sensory-seeking mode.)
That’s the main wonky behavior, but there were also lots of little things that are hard to describe that she started doing again. Things we hadn’t seen in quite some time.
Needless to say, we’re back to a cheese-free life. Tonight she asked if she could have some Parmesan on her pasta, “or am I allergic to it?” I told her it’s what was making her belly itch (that is nearly faded thank goodness). She seemed to accept that (but she didn’t eat her pasta).
I was hoping that the removal of gluten from her diet would yield something positive in the area of, um, going #2. We’ve seen some improvement, for like a week here and there, but then goes back to its norm.
However, I do think the GF part has helped with her communication. She’s always continuously communicating better and better, but it’s like the improvement ramp went from a 30 degrees to 60 degrees (if that makes sense) as the gluten has left and stayed out of her system. I mean, it’s just so so so so fast that it’s hard not to correlate it.
So for now we remain free of gluten and casein and we limit quite a few others as best we can and we keep trucking along.
And I remind myself: no more dairy for Charlotte!!
Thank you, thank you, thank you for all of the outstanding comments on my post about the challenges we’ve been seeing here at chez goodfountain.
I considered writing a follow up post summarizing all the suggestions, but then I realized that would be a lot of copying and pasting and, well, I just can’t do it. If anyone stumbles here, though, looking for advice on how to deal with challenging behaviors of their ASD kid, just click here for quite a few great ideas.
One thing I’ve decided to fairly immediately do is make a visual schedule.
My reason is two-fold. One, I think a bit more structure to our mornings will alleviate some of the problems with being told “No” and, two, I’d like to try to work piano practicing into the daily routine. Yes, no quitting yet. At least not without trying a bit harder on my part to make 5-10 minutes a day of practicing part of the routine.
Besides, Charlotte herself does not want to quit. She is excited about the Halloween recital coming up (where she plans to dress like a witch to play her Zoom Zoom Witch’s Broom piece). Rather than jumping ship, as I’m tempted to do, I’d like to use this as an opportunity to force ME to provide more structure to our morning.
I think all 3 of us would be much happier if our mornings were a little less haphazard. As the primary grown up in the house most of the day, I suppose it is truly up to me to create that order (darn it!).
I have used written schedules for Charlotte before with good success, but it has not worked well for us this year yet (by year I mean the academic year that just started).
What’s different is that she is in afternoon Kindergarten rather than morning (like the last 2 years of preschool). Morning routine used to be very simple – wake up, potty, get dressed, eat breakfast, brush teeth, fix hair, shoes, backpack, school. That written schedule hung on the fridge all year and made mornings fairly smooth.
Sarah would also benefit from a visual schedule. She tends to get very upset when told No about something as well – I don’t see why having a visual schedule wouldn’t help her as well.
Now comes the hard (for me) part of actually organizing the time. Charlotte and Sarah are usually up between 7:30 and 8:00. We leave for school at 1:00, allowing for 5 hours to accomplish just a few things. The current routine is lunch at 12:00 or 12:15. Get dressed, brush teeth, fix hair, shoes and backpack starts at 12:30. (It’s important to start early as there’s major lolly-gagging during this process.)
Three mornings a week we have places to go (getting dressed and out the door for those is not a problem), so we have much less time at home, but the before-school routine remains the same.
The time we’re at home is filled with a circuit of coloring, breakfast, reading books playing and watching a show. There’s no routine to that. Sometimes they watch TV while eating breakfast, sometimes no TV at all. The morning time we’re home is very, very loose.
The two new activities I’d like to add to the mix are piano practice and clean-up.
What I’m wondering is how structured should I go? Following a clock all morning doesn’t appeal to me (and I’d surely fail).
Charlotte really likes the Centers in her classroom at school. I don’t see myself setting up physical Centers, but maybe something like Time Centers. At school, kids do one Center a day. At home, we need to do all the Time Centers.
Time Centers would be things like the before-school routine, breakfast, morning snack, piano, coloring, reading, watching a show, clean up.
I don’t want to mandate what order all the various activities are done. I don’t care if the kids wake up and feel like watching TV first thing. I don’t want to control how they spend every minute. I just want to make sure certain things ARE done every day – namely, piano practice and cleaning up.
Okay you super-creative blog friends out there, help me flush out this idea. I don’t want to make things too complicated as perhaps I am known to do (who me?).
As I’ve shared a few times, Charlotte is doing fabulously at school. Fabulous.
Things, however, are not quite as fabulous on the home-front.
If I get to dwelling on this too long, I will start to berate myself. It’s all my fault that she doesn’t listen. I haven’t enforced consequences enough, I’m not stern enough, I’m a horrible failure, blah blah blech!
Self-flagellation sucks. I hate it. So I don’t dwell for too long on how we got to this place. Instead I remind myself that her development was atypical and we did what we thought was best at the time.
When Charlotte was age 2, and most of age 3, she had almost no true reciprocal communication. Most of her negative behaviors (and there weren’t many) were linked to sensory processing challenges, meaning we don’t believe she could help herself. So we couldn’t bring ourselves to punish her. Instead we focused on creating an environment in which she felt safe. That helped tremendously.
The year she was 4 there was such a tremendous explosion in her communication skills, we were dumbstruck. Sass? A little bit of attitude? No, it wasn’t right, but Oh My Goodness she was communicating spontaneously with us. We were so afraid it might go away, a lot of things were let slide.
And so here we are at age 5 with a girl who communicates mostly perfectly fine. She is handling herself very well in the classroom at school, during swim lessons, during her first-ever dance class this past Monday (where her diagnosis was not disclosed and there was no parent present – yep, we just sent her off into the wilds).
The good news at home is that she is not battling us on much of what used to be cause for meltdowns (e.g. brushing teeth, getting dressed).
However, we have another set of meltdown-inducing, um, challenges.
Example 1
Charlotte accidentally bumps a game off the buffet which lands on the cat’s water bowl and sloshes water all over the floor. I ask her to grab a towel and clean up the water. She runs away.
Example 2
Charlotte is playing with stickers. She dumps out the whole bag of stickers on the floor. I mention several times that she will need to pick all those stickers up when she is done. She finishes playing and runs away, ignoring my demand that she come back and clean up the stickers.
Example 3
Charlotte decides she wants to color. It’s 5 minutes before dinner, or before we need to leave the house. She pushes a chair to the counter and reaches high into the cupboard to get the markers and crayons. I repeatedly tell her that she cannot color right now but that we will do it later. Finally I have to physically block her from getting the markers. She throws herself down on the ground screaming and kicking.
(Those 3 examples all happened today.)
A couple of things are kinda sorta working to bring her back to do the cleaning up. The magical 1-2-3 count coupled with the threat of losing her beloved Belle has brought her back. Threat of consequence however is the only way to get her to do something she doesn’t want to go. Positive reinforcement when she does clean up is doled out, but it hasn’t cleared the way to doing it when asked the first time. Or just doing it period.
To get her to stop having a meltdown over not being allowed to do whatever she wants to do right the minute she wants to do it – I have to use threat of consequence. Which is, again, losing Belle.
I hate threatening consequences. Is there another way? A way that is more positive? I’ve tried setting rules because she likes them, but it doesn’t matter. Plus I can’t anticipate every single scenario. I know that it’s typical of kids at age 5 to not listen to their parents, but I believe this goes beyond what is typical. Especially in her reaction.
Or do all 5 year olds throw themselves on the floor kicking and screaming when told they can’t color? Every time?
What is the best way to get through to her? Do I write a social story about listening to Mommy? About respect?
My ultimate hope here is that she will a) learn to clean up her toys after playing with them; b) learn to accept No as the answer when she simply cannot do what she wants to do the minute she wants to do it.
If you’re on the other side of this, I would love some advice. Or just some good “hang in there, Mom” kinda stuff works too.
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