So long, favorite friend

Charlotte loves ice cream. Unarguably her favorite food. I limit it to weekends only or she’d beg and cry for it every night of the week.

Dairy-free versions of ice cream are plentiful. Charlotte has been happy in her non-dairy ice cream consumption for some time.

Then the whole soy-reaction thing showed up, and our options for dairy-free, soy-free ice cream are much fewer.

All are coconut milk-based.

When Charlotte had the IgG test about a year ago, coconut showed up as something she’s reactive to. Highly reactive.

She’s never had coconut that I know of, and there  can be false positives on these tests (so I read), so we decided to let her have the coconut milk ice cream. And then see if we notice anything.

With Charlotte, foods that she is sensitive to don’t cause an immediate reaction. It’s delayed, and cumulative (meaning, the more she has the more it affects her).

This past weekend was the 2nd weekend we tried it. Saturday night she was wide awake past 9:00. We were laying in her bed and she was sensory seeking pressure to her head. I offered to get her her weighted blanket, which she then wanted me to droop on her like a hood.

“Does your head hurt?”

“Yeah, it feels scratchy.”

“Scratchy on the inside, or scratchy on the outside?”

“Inside.”

It was close to 11 before she finally fell asleep. Today was more sensory-seeking to the head, although she did say her head felt better.

I can’t say with 100% positive certainty that it was the coconut. But the staying up late, the sensory-seeking: not good signs.

And so I guess it’s so long ice cream. I cannot find one that does not contain soy unless it’s the coconut-based one.

Charlotte, though, such a good girl. I said, “Charlotte, I think we’re going to take a break from ice cream for awhile. We can do popsicles on the weekends instead.”

“Okay.”

And she  happily enjoyed her strawberry frozen treat without a single complaint.

Gosh I love that girl a little more every day.

***

Can I just complain about how much this diet stuff frustrates me? Not the part about sticking to it, we do okay with that, but how it is seeming like Charlotte is sensitive to SO MANY different things! Her original IgG test showed 29 food sensitivities.

I think to myself: Am I imagining this? Can this be real? Could she REALLY be sensitive to 29 different foods?! What if rice becomes an issue? What the heck would she eat and drink?

I’m not sorry that I began to explore dietary intervention for Charlotte. My initial reason for going GFCF was because I figured there was no harm in trying. Indeed there was no harm, and we have seen many, many positive effects. But I had no idea that it was going to end up being this involved. I just had no idea there was such a strong food-behavior connection with her.

Alright I’m done complaining. Yes, it’s frustrating, but overall it has proven to be quite worth it.

Random, slightly coherent

I probably have 3 or 4 half-written posts that I just can’t finish. I can’t tell you how many times I have abandoned a post halfway through because I lost where I was going with it.

My blogging mojo is on vacation.

So, instead you are being treated to the random, slightly coherent thoughts of goodfountain.

Here are some tidbits:

Charlotte has two friends that she sits by every day on the bus ride home. As soon as she hops off she says, “I sat with V and H today.”

One day I asked what she and V and H talked about. She says, “I didn’t talk. I just looked.” To help spur her into some conversation with these girl friends of hers, I’ve asked her questions like, “Does V have any pets?” or “Does H have a brother or sister?”

Hopefully she’s engaging in some occasional dialogue and that is not too terribly repetitive (you know I mean, right?).

***

Sarah has become a talking machine. I remember a pediatrician telling me once (in regards to Charlotte) that a typical 3 year old girl will talk your ear off. Truer words were never spoken. Sarah, who will be three in a couple of weeks, is a total chatterbox.

She has chosen a new baby doll to be her favorite, replacing Ick. Remember her oddly-named Ick? Well she named this baby Ehhh. Not Ahhhh, I was corrected. “Ehhh.”

***

Over the years I have often said that Charlotte is a low-energy kid. What I mean by that is she is not one to bounce, skip, dance, twirl all over the place. She’s a little less active in that way.

Not so much anymore. The girl hops and twirls, dances and skips everywhere. From the kitchen to the family room and outside to the car. Non-stop moving. Run run run in the house. It’s such a remarkable difference – everyone who is around her often has commented.

Coincidentally (or not), it started after we removed Soy completely from her diet. I don’t know if there’s a connection or not, but that’s when it started.

***

Sarah loves to pretend. And Sarah loves my iPhone. She covets it. Under no circumstances will I let Miss Toilet-Tossing Destructo play with it. She cannot be trusted. She was pretend playing recently. “You’re Grandma!” she said.

“Okay, then you’re Mommy,” I said (meaning me, but I used my name). We bantered about a bit with me being Grandma and her being me. Then she spotted my iPhone.

“Sarah, you can’t play with my iPhone. Hand it back to me.”

“I’m Mommy, it’s MY iPhone! Not yours.” she says with the haughtiest of tones and saunters off.

***

Girl Scouts is going good – when we actually meet. It’s been a bit of a slow start but things are looking to pick up. Charlotte enjoyed the last meeting. She was fully engaged the whole time, fully participated. It was great. I don’t feel like I need to stay at every meeting

She had a meltdown when the last meeting ended. She was having fun and didn’t want to stop. I am going to ask the troop leader if she’ll write up an agenda for each meeting. I think it will help if Charlotte knows what to expect and she won’t be surprised when the meeting ends.

***

I doubt I will post again before Thanksgiving (unless my blogging mojo makes a surprise return) so let me take now to wish a Happy Thanksgiving to all my blogging friends.

(Oh and this month is my 2-year blogging anniversary!)

Jitters for nothing

Charlotte’s adoring fans want to know: how in the heck did the conference go? I’ve been emailed, texted, tweeted and blog-commented with requests for an update. So nice to know there are people out there thinking of us (and rooting for us too). I do love this community.

Net, she’s really doing great. My jitters were unfounded.

The academic portion is pretty much all reading based since that is so much the focus in Kindergarten. Of course, Charlotte is fine there (we all know that). Out of a possible 29 points on an assessment, she scored 27. The two lost points were in answering Wh- questions. Go figure, huh. A common area for ASD kids to take a little longer.

Her inclusion teacher doesn’t feel she’s overwhelmed (sensory-wise) by the busy classroom, but she is distracted. She needs a lot of reminders to stay on task. She always has to be re-instructed one-on-one after a time of group instruction. No big surprises there. That’s why that is included in her IEP.

She seldom plays with other children during recess. Usually she stands by her teacher, who encourages her to go play, but Charlotte will usually choose not to. The speech therapist spoke up and said that was typical of spectrum kids to watch and watch and observe, memorizing the interactions, learning the script before jumping in. They were all aware that she spends a lot of time watching the other kids (just as I suspected).

It didn’t bother me, and I didn’t feel any twinges of sadness, because it seems like Charlotte is owning that decision. It’s not like she wants to play but no one will include her. She is doing her observing, she’s figuring things out, she’ll make a move when she’s ready.

A bit of discussion about how to help her be more independent with completing work. She needs to be prompted to get started even though she can say what she should be doing when asked, she’ll just sit there till someone says, “Okay, then go do that.” What’s up with that?

I have to say I was really impressed with the speech therapist. She couldn’t say enough good things about Charlotte and how well she was doing. At the same time, she’s in tune with where she needs the supports and what area to focus on. Very impressed.

Right at the end I asked my burning question: How does her work look? Is she learning anything?

Emphatic yeses all around the table! She does the math. She writes her stories. She is getting it.

Whoosh whoosh and a big sigh of relief.

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.