Girls and Autism and American Girl Magazine

The majority of information about autism is about boys. One in four individuals is male, so more is written about them. I am always tickled to find an article about girls on the spectrum.

FYI: The current (Jan/Feb 2011) issue of American Girl magazine features a story about a 9-year-old young lady on the autism spectrum. The young lady's name is Gina. The story is called, "Finding Her Voice". A video of Gina singing is here. We subscribe to the magazine. I have seen it on magazine stands in the warehouse club. I assume it is available at book stores or your local library if you're interested in reading the article.

GFCFSF Sloppy Joes

Li'l Bit has been begging for Sloppy Joe's. I didn't think she would eat them. I don't like smelly foods all mixed together - the thought almost makes me gag. (I have a few sensory issues.)

After several days of listening to her begging for Sloppy Joes, I looked for recipes. I found two rather quickly. One is a crock pot recipe (that contains cabbage-is that unusual for Sloppy Joes?) from a cookbook I reviewed, Easy Gluten Free. The other recipe came from one of Carol Fenster's cookbooks that I bought from a warehouse club several years ago, Wheat Free Recipes and Menus. (No cabbage in this one.)

We decided on the Carol Fenster recipe. It was a tad dry, and we added some water. I suspect we should have added some tomato sauce, instead (but what do I know? I don't eat Sloppy Joes.) Hubby, who grew up on Sloppy Joe's, says it's bland, that it needs something, but he's not sure what. After some thought, he said next time, we'll omit the cloves. (I am not sure I follow his reasoning, but, he's the Sloppy Joe expert, and I'll have to trust him on that one.)

Here's the Sloppy Joe recipe on gluten-free bun from Ener-G:

And a photo of the recipe page. I do love my StudyPod for holding the cookbook open.

The verdict? Li'l Bit helped us make it; she got some experience reading fractions down to 1/8 tsp, and together we smelled (and described) every spice that went into the ground beef. Cooking with dad and mom is very RDIable. She tried a li'l bit, but she wouldn't eat a whole sandwich. She said it reminded her of GF pizza. I think there's a texture thing for her, and maybe she's a li'l bit like her mom, who does not like a bunch of food mixed together on a bun like that.

Uncertainty and Change

We all need a certain amount of tension and uncertainty in order to thrive and grow. We are bored and stuck when there is no change. Monotony is boring.

We all need "just right" tension, uncertainty, and challenges. Dr Gutstein always referred to that concept as "productive uncertainty". Too much tension, change, uncertainty is overwhelming, produces chaos, and often causes an individual to shut down, or to create sameness, rituals, rigidity, in order to avoid chaos. Many individuals on the autism spectrum experience a big amount of chaos unless they stick to a rigid routine. (There's a blog post about sensing patterns rolling around in my mind at this point, but that would take me on a detour that I don't want to take in this particular post.)

As I think about all of the change we'll experience in this move, sometimes, I feel very overwhelmed and want to resist the change with all of my might. During those times of feeling overwhelmed, I more clearly understand the need for routine and sameness in autism.

As we prepare to make this big move, I am reminded of family systems theorist, Virginia Satir, and what she observed and described as five steps to navigating and incorporating change. (I completed some grad level work in the area of marriage an family therapy in another life, before children. My favorite theorist was (is) Virginia Satir. I still learn a lot from her.)

Here's my take on Satir's five steps to processing change:

First, in my term, is our current 'normal'; it's our life here in the Midwest as we know it. Second, is the tension, the change, the challenge, the uncertainty: the upcoming move. Third is the chaos - which occurs at many levels. While we anticipate the move, our chaos is mental and emotional. As our belongings are packed and moved, we'll have a lot of physical chaos. Fourth is a period of integration, assimilation, accommodation, which all happen at many levels, too. And fifth and last, is our new 'normal'.

There's a much more in depth explanation of the stages, here, if you're interested.

I see myself and my children going up and down between the second, third, and fourth stages. That's to be expected, and it's a good reminder for me that we are feeling and experiencing what everyone feels with big change.

I have something that my children do not have regarding our upcoming move, and it involves the fourth step of integration, assimilation, accommodation: I have the experience bank of having moved before. I have the experience of losing my day-to-day life as I knew it and morphing into a new life in a new city, experiencing some painful losses while simultaneously experiencing pleasurable gains and bonuses that I would never have experienced had we not moved.

Navigating the chaos step is the pressing step at the moment, keeping lines of communication open so the kids are comfortable verbalizing questions, so that we can answer them or begin to find answers, which will reduce some of the temporary chaos. I want to be able to preview for all three of my children (not just the one on the autism spectrum) both the fun and excitement of moving and the loss and change. Right now, they aren't able to picture the fun and excitement of new discoveries in a new town; they've never done that. It's not a part of their experience bank. They must rely on someone who has been through this before (a guide, as in "guided participation") to help them make some sense of a move. (I, on the other hand, have never moved with children, or with a child on the autism spectrum, and am looking for folks who have that experience in their experience banks to guide me as I consider places to look for a home, autism services and supports, schools, etc.)

I want us to look back on the experience having a sense of confidence and competence where we are able to acknowledge the uncertainty while sensing that, although it was big, it is temporary (until the next change) and that we were able to navigate it, and navigate it together, and recognize that we have navigated change before this, and that we will be able to navigate the next change, and the next one, and the next one. I want this move to add many deposits to our experience banks, one that will grow us for the better.

Walking in my daughter's shoes

After reading Dr. Temple Grandin's, "Thinking in Pictures", oh, probably almost 10 years ago, I have sometimes said that if Dr. Grandin can get down on her hands and knees to look through the eyes of a cow, then I can try and I will try to look through the eyes of my daughter (the one who regressed into autism after her first birthday and a chicken pox vaccination).

And I have certainly tried to understand her perspective, to see through her eyes, to walk in her shoes.

As I became an accidental pupil of Gutstein & Sheely, the psychologists who have taught me an enormous amount about autism remediation and infant and child development, about what pieces of development go off course in autism (they call them the "core deficits" of autism), and how to get development on course, seems that every day, at least once, I see examples of what they've taught me, which broadens my window into my daughter's experience.

The window is broadening even more, this time, with an experience. Ya know the line from the song that goes something like this: Life is what happens while you're busy making other plans. ?

We're moving. Surprise! It was a surprise to us. A big move. Cross country. From one region to another. We're leaving the Midwest.

And I am getting a first-hand, up-close-and-personal lesson in the difference between "productive uncertainty" and "UNproductive uncertainty", and the frustration and anxiety that "UNproductive uncertainty" can provoke.

I have some thoughts and observations on uncertainty and change - you'll have to stay tuned as I process them out my fingers through the keyboard.

GFCFSF Cheese Sauce

With the encouragement of GFCF Chef Tom Dickinson in a thread on facebook, I attempted a homemade "cheese" sauce. Chef suggested I start with a GFCFSF roux, something I'd never attempted (although I've made a roux with wheat flour and cow's milk a few times). Chef Tom's motto is, "It's not about sacrificing, it's just about replacing." Chef Tom actually suggested a roux of rice milk and arrowroot; I used coconut milk and a GF flour mixture and stuck with a familiar recipe I'd used before I had a child on a GFCFSF diet.

I began by adding Farmo brand pasta made from corn and rice to boiling water.

I began the sauce with a basic roux, that calls for 2 cups of milk (I used boxed coconut milk from So Delicious); 1/4 cup of flour (I used Cybele Pascal's basic blend, except that I use corn in place of potato); and a half stick of butter* (see note below). Melt the butter over medium heat; add the flour and cook, stirring, until the mixture bubbles up well. Do not allow the roux to brown. Add the milk all at one time; cook and whisk until the mixture is smooth.

I added some pink himalayan sea salt from a grinder and a half-teaspoon of dry mustard and whisked that in.

Then I began adding Daiya cheddar flavor shredded "cheese" until the color looked right.

Li'l Bit asks for mac-and-cheese, but won't eat it when I make it. I thought it was because other sauces I've tried are too spicy; this one is not spicy, and still she wasn't feelin' it. *sigh* I think it's a texture issue. She did try it.

She asked for chips to dip into the sauce. That's some creative problem solving! *smile*

From someone who knows how mac-and-cheese is supposed to taste, this attempt is a step in the right direction. This one is a bit bland, and next time, I will add more mustard and more salt, and possibly some Daiya mozarella flavor "cheese". I wonder what other spices I might add that would add flavor without "ick". And I might mix the pasta with the sauce in a casserole dish and crunch up some rice cereal or GF corn flakes on top and bake it for a few minutes. Some chicken or ham or turkey bacon would be good in it. Hmmm. Look at me, creating my own recipe!

The sauce would be good on steamed broccoli or cauliflower. Or maybe asparagus.

My verdict: a little bland; still, it is an excellent first try, and I am encouraged.

*Confession: I use real butter. I know that most GFCFers do not use real butter. However, when my daughter had been on the diet approximately six months, our holistic MD (who was training in the DAN! protocol at the time) told me to try real butter instead of the substitutes we were trying. He'd attended a medical conference on the topic of fats in the diet, and thought butter would be good for her diet, as opposed to substitutes. I resisted. I'd seen my girl regress for four. long. days. after eating ONE teeny cheerio, not once, but twice, in the past six months, and I wanted no part of a deliberate infraction. Dr. N. said that there isn't enough casein in butter to affect some children; that only the most sensitive individuals would react to the miniscule amount of casein that might be in butter. I thought he was crazy. A month or so later, over a holiday break with my parents here helping, I decided to give butter a try. We saw no infraction reaction/regression, and while I do not serve her food made with butter all of the time, I do use it. It is the only milk product I use in her food and I buy organic.

Weird is GOOD!

Weird?

Absolutely.
Celebrate it!

click here:
http://www.enjoyparenting.com/daily-groove/weird

Guided Participation in a Cisco commercial

This commercial caught my eye.

In the first part of the commercial, watch how Lil not only breaks down the skill into little pieces, but watch how she waits for her student, Ellen Page, to reference her, to position her own spoons, before she moves forward.

The slowing down, adjusting our pacing, waiting for our daughter to orient not only her body, but first, her attention, to us, was something we missed in the early days. Behavioral intervention was all about the skill, and we missed allowing our child to join attention with us, orient herself. We missed the most important non-verbal interaction foundation piece.

“Ok first you have two spoons…put your finger in the middle of the spoons…and bang them back and forth.”

Okay, I know it's a commercial. Still, it reminds me how naturally we alter our pacing with someone who gives us that non-verbal feedback (even when we're not in the same house, when we're using technology), and how we can assume some children are not capable of giving that feedback, so we rush, rob them of the opportunity to shift attention and orient their gaze and body, instead of giving them the extra processing time they need to be active participants.

Proof *wink*

IT'S A BOY!

For to us a child is born, to us a son is given: and the government shall be on his shoulder: and his name shall be called Wonderful, Counselor, The mighty God, The everlasting Father, The Prince of Peace.

Isaiah 9:6

Thankfulness

Random thoughts...

My newest niece was born this morning. She is named after me. ;)

Saturday was test day at Learn-to-Skate; Eldest passed Basic 3; Li'l Bit didn't. I figured Li'l Bit wouldn't care that she didn't pass; I was wrong. She cried in the car. We were able to show her the two skills she needs to work on and pass in order to move to Basic4, and she seemed to process that information, although she was still upset about it. Her upset over perceived failure is interesting to observe; I see how much progress she is making and where she still needs experience.

Fast forward to today. The girls wanted to skate today, their first official day of CHRISTmas vacation, so I took them to a different arena from the place where they Learn-to-Skate.
As she got onto the ice today, I asked Li'l Bit what two skills she needs to work on so that she can pass Basic 3, and she actually spent some time and effort on skills. I've never seen her do that. She usually does her own thing during free skate times, and refuses to work on anything she learned in lessons. I was impressed with her focus. (I realized later that she was not working on the right skills, so I have to spotlight those for her, again, but the fact that she spent time and energy on skills today still astounds me.)

There were approximately 10 people on the ice today, and two of the individuals there were brothers, younger than my girls, who were practicing hockey skills. The arena does not usually allow hockey sticks and pucks on the ice. I was worried they'd be wild and all over the place, in the way, discourteous. I had nothing to worry about. These young men took care to stay on the side or at one end and out of traffic as they tossed a puck between them.

Sidebar: Li'l Bit sometimes tries to engage kids on the ice. At Learn-to-Skate, the kids play tag during free time, and she has tried to start a game of tag in this setting, too, with kids who are strangers to us, and they sometimes make fun of her, talk about her, pick on her. I hate that. Eldest hates that, too. Helping Li'l Bit understand what is appropriate and what is not is really challenging when they're skating and I'm watching from the sidelines. (I don't skate.)

Today, one of those boys dropped his hockey stick and she was close to it and picked it up and gave it to him. Then she tried to engage them a little. I told her to give them room, that they need room to practice hockey, instead of telling her to stay away from them.

A few minutes later, the puck sailed to her, and she scooped it up and returned it to them, even when one of them said, "it's okay, I've got it".

I kept waiting for one of them to say something mean to her.

And they didn't.

They were so kind. They even waved to her when she skated past them.

I walked around the arena to tell their dad "thank you" for his generous, gracious boys.

I'm thankful for my new niece; for witnessing my girl working on skating skills; for kind strangers on the ice with my girls.