A.S. Kids are Cool!

I think I Finally Figured Out How To Say It

Brandi — Thu, 31 Jul 2008 15:15:51 +0000

I don't like saying that Nathan "has Aspergers" Mainly because there is so much more to him that I don't want AS to identify him for myself or others. But there are times when I do have to explain something. So, here's what I came up with in a recent e-mail:

"My son, Nathan, has some deficits in his social and relational abilities."

What do y'all think?

Nathan: In Real Time Part II

Bird — Tue, 29 Jul 2008 01:06:35 +0000

Same ground rules apply. I'm with Nathan, asking him these questions right now. [My comments are in brackets.]

Q: What is the capital of Russia?

A: Moscow [that was an easy one]

Q: What is the capital of Australia?

A: Canberra [I'll bet most people don't know that]

Q: What is the capital of Romania?

A: Bucharest

Q: What is the capital of Hungary?

A: Budapest

Q: What is the capital of Iceland?

A: Rejkyavic [neither one of us know how to spell it]

Q: What is the capital of the Czech Republic?

A: I think Prauge [this one almost stumped him; I'm not sure we spelled it right]

Once again, he pretty much knew all those answers immediately. I could go on and on and on ...

Nathan: In Real Time

Bird — Sun, 27 Jul 2008 23:57:50 +0000

I'm asking Nathan these questions right now, in real time.

My question: What is the twelfth letter of the alphabet?

His answer: L

Q: What is the eighteenth letter?

A: R

Q: Twenty-first letter?

A: U

He just pulls that information from his brain automatically, within half a second of being asked. He KNOWS that stuff. He's memorized it. Pretty amazing. I think he'll be a good chess player with that memory of his.

We've Decided ...

Bird — Sun, 20 Jul 2008 14:18:43 +0000

... to keep this site on life support. ;-) At least that's sort of what Brandi and I decided, but we'll see what happens. We've got some ideas for posts. More to come (hopefully).

I'm Wondering ...

Bird — Thu, 03 Jul 2008 13:06:13 +0000

... at what point do we say this blog is dead? It's a vicious cycle: no one wants to post, because no one reads, no one reads because no one posts ...

Feeding Issues

Brandi — Tue, 13 May 2008 20:46:46 +0000

Thank you to everyone who responded to my post, "Who Are You??" I sincerely apologize that it has taken me this long to post again. I just wish I could clone myself, then I could do everything I'd like to do

What I plan to do for now is attempt to post questions as they come in. I will answer them as I can and I invite others to give their perspectives in the comments. I want to make a special invitation to those of you who don't have any direct knowledge/experience with AS. Truly, your perspective is often the most valuable since you see more of the "big picture."

Following is a question that Laura asked:

Feeding issues and what's worked and what hasn't (it would have been good to know that hiding vegetables that should have been indistinguishable in my child's food was NOT going to be so and that she might go on a food strike for any length of time as she did not trust me and the food I gave her anymore). She no longer eats dinners or lunches at all and is working at fading out breakfasts too it seems.

Here's my answer:
Laura, I'm so sorry! I know that must be really rough. First, my question is this: Is she healthy and of average weight? Is the doctor concerned? If not, I would relax since most kids will eat when they are hungry.

I have had some feeding issues in the past with one of my kids and they main way we got through was two ways:

1. We made him eat one bite of anything, disciplining if necessary. This was not easy, but we were determined. It got messy and emotional at times. Sometimes he would literally gag.

2. I would require him to eat the food he didn't prefer before the one he did. For example, he won't get his PBJ until he ate his carrots. And desserts were usually reserved for after an undesirable meal.

He used to be pretty picky, but now he eats anything and I am so glad I did stuck to my guns! In fact, we still go through this same process to a degree, only he doesn't fight it anymore. He did not like lima beans when I first started making them over a year ago. He learned to tolerate them. And he surprised me the other day after finishing a bowl. He exclaimed, "I like lima beans a LOT!" (I think he even surprised himself! )

Hope this helps! Please, chime in if you have any tips for picky eaters.

James 5:14

Bird — Mon, 21 Apr 2008 00:38:45 +0000

In the tradition of James 5:14, we had the elders of our church pray for Nathan this morning. It was pretty amazing to see all of that spiritual leadership -- and spiritual authority -- gathered in one place, calling out to JESUS on behalf of our son. I think it speaks a lot for Antioch Community Church that, with about 2,000 members, the highest levels of leadership still appreciate the value of that passage. Brandi and I were both deeply moved.

Nathan enjoyed it, too.

Who Are You???

Brandi — Sat, 05 Apr 2008 15:22:47 +0000

I apologize that there has been very little activity here recently and I hope to be able to post more often in the near future. But I'd really like to know who visits here. Whether frequently or not. Lurking or commenting. Who are you and what would you like to see discussed here on AS Kids?

I think it might be easy for some people to think that their opinion doesn't matter if they aren't directly affected by AS. But if you are human, then I'd like to hear from YOU!

You visit here for some reason, right? And even if you stop by and really don't know WHY you visit, then that's okay too. Just let us know that you visited and that this isn't just a forgotten wasteland of the blogosphere.

GFCF Sugar Cookies

Brandi — Wed, 13 Feb 2008 20:43:15 +0000

I made these at Christmas and they turned out great! I will make some this evening and color with beet juice for Valentine's Day

Christmas Sugar Cookies (Gluten-Free)

3 cups gluten-free flour mix*
2 eggs
1 teaspoon soda
1 cup sugar
1 teaspoon cream of tartar
1 teaspoon almond (or flavoring of your choice)
1 cup gluten-free margarine
*my addition: 2 tsp. xanthan gum

Sift flour, soda & cream of tartar - cut in margarine or butter (I find that margarine is easier when rolling out the cookies). Beat eggs, add sugar & almond - mix well. Pour egg mixture into flour mixture and mix well by hand.

Chill at least 15 min (several days is also ok). Roll out to desired thickness on floured surface and cut into shapes. Decorate with colored sugar, or if you prefer, after baked & cooled frost and then sprinkle with colored sugar, etc.

2 cups powdered sugar mixed with some melted butter & lemon juice frosts one batch. Bake at 350F for 9 minutes.

* Bette Hagmans Four Flour Mix (from The Gluten-Free Gourmet Bakes Bread).
Garfava Bean Flour 2/3 part
Sorghum Flour 1/3 part
Cornstarch 1 part
Tapioca Flour 1 part

From www.celiac.com

P.T.

Brandi — Tue, 22 Jan 2008 00:32:49 +0000

I don't know if I've mentioned it before, but Nathan was referred to a Physical Therapist because of his lack of strength. After the initial evaluation an few months ago, she labeled him "low toned." I don't have time right now to go into what that is exactly, but it basically means he needs to have a lifestyle of physical activity in order to maintain strength, balance and coordination. Apparently, it's a central nervous system thing.

Just thought I'd share his daily exercise routine:

20 squats
20 sit-ups
"wheel barrow walk" (he "walks" with his hands while I hold his feet) 20 feet
stand on one leg (flamingo stance) for 20 seconds per leg
catch and throw a ball 10 times each
run for 2 minutes

The good news is he is doing so well, he doesn't have to see her anymore. He just goes for monthly check-ups.

Faith Like A Child

Brandi — Sat, 12 Jan 2008 02:47:22 +0000

Mom: Nathan, what would you do if I got hurt and I couldn't get up or talk?

Nathan: I would pray for you to get better.

Mom: Okay, good! And then what?

Nathan: You would be better!

(I started this conversation in order to teach him what to do in case of an emergency. Eventually we got to "911" and all of that. )

Ever get angry?

Brandi — Fri, 11 Jan 2008 19:26:40 +0000

The discretion of a man makes him slow to anger, And his glory is to overlook a transgression.

Proverbs 19:11

Queen of Denial

Scott — Wed, 09 Jan 2008 19:30:42 +0000

My Mom and Dad were visiting for the holidays and after a few glasses of wine (arrggghhh) talk turned to K2 (our son). Mom refuses to see or understand that our son has issues that he faces. It may or may not be autism/Aspergers, at this point we don't have a label (great post btw), but regardless of that, anybody who spends any amount of time with him sees that he's at best unique and at worse a large handful. How do you talk to relatives who only see your child as being the perfect angel or "a regular boy"?

Eventually we just had to change the subject, because it was just maddening, but I want her to see that while yes he's a great little guy there's a lot going on under the hood that she doesn't see.

This Is Amazing

Bird — Tue, 08 Jan 2008 03:12:47 +0000

You'll be extra pleased if you like the song, "I Can Only Imagine."

First Kiss

Brandi — Sun, 06 Jan 2008 01:23:23 +0000

OK, so it's a little thing, but often times it's the little things that are really big things, right?

I am a "kisser." I constantly kiss my kids...it's just a way I like to show affection. Anyway, Nathan has never shied away from my kissing him, but he's never initiated giving me a smacker.

Three nights ago, I leaned in to give him a good-night kiss. To my surprise, he planted one right on my lips!

AND, every night since, I've gotten the same. Many parents (understandably) take good-night kisses for granted...not this one. I am so thrilled!

What's In A Label?

Brandi — Tue, 01 Jan 2008 18:58:05 +0000

Truth be told, I don't like labels. I know that may sound odd since the banner on this site says "Asperger Syndrome" in really large letters, but...

I think for many parents, the diagnosis or label is helpful at first because it gives a "reason" for all of (or a lot of) the atypical behaviors and other characteristics that they have been witnessing for months or often years. That's how it was for us, at least.

But as time goes on, it feels more like the label "Asperger" is a hindrance. My child is an individual. He shouldn't be characterized in my eyes (or anyone else's eyes for that matter) by a "syndrome." Whether we want to or not, I believe our expectations for somebody's potential are lessened when they have a label like Asperger's.

More and more lately I find myself explaining to others (and myself) about my son in terms of specific differences (whether positive, negative or neutral) versus disability. The positive and neutral differences, we are thrilled about and seek to encourage; the negative, we do our best to work on both for his best interest and to help him to be more of a blessing to others.

I want to hear what you think...whether you have a child who is "labeled" or not. What's good about labels? What's not so good about labels? Do you think they are helpful in your situation? That can be relating to your own child or a child that you know.

Oh, and something else--when using a label, it is considered impolite and insensitive to say the label first, like "an autistic child." It is better to say, "a child with autism." And "disability" is preferable over "handicap." Hmmmm..maybe this needs to be a separate post..

Our "Every Day" Gluten-Free/Casein-Free Bread

Brandi — Mon, 31 Dec 2007 20:02:02 +0000

Gluten-Free Casein-Free Bread for a Bread Machine

Microwave 2C water until very warm, but so hot that it kills the yeast.

Put in bread machine:
Warm water
2 tsp. yeast
2 Tbsp. fructose
1 Tbsp. molasses
2 Tbsp. potato flakes
2 Tbsp. soy milk powder

Allow to stand about 10 minutes or until yeast makes bubbles

Add to yeast mixture:
1 egg
3 Tbsp. oil
1 tsp. vinegar

Then, add:
Â¼ C ground flaxseed
1 C garbanzo bean flour
1 C brown rice flour
Â½ C buckwheat flour
Â½ C sorghum flour
2 tsp. xanthan gum
1 tsp. salt

Dough should be about the consistency of cake batter. Add a bit more flour or water if needed.

Set machine on express bake. Mine takes around 1 hr. 20 min. I think. If you don't have an express setting, just use a regular white or wheat setting.

Jalapeno-Cheese Bread

Brandi — Sun, 30 Dec 2007 23:08:28 +0000

Aunt Debbie got a new bread machine for Christmas so we were able, at Nathan's request, to make some jalapeno-cheese bread (gluten-free bread with vegan cheese, of course!)

For some reason, Nathan has been EXTREMELY "into" jalapenos lately. He talks about them a lot, asks people if they like them or not and eats what he can tolerate. I wonder if it's a phase. Anyways, here are some pictures of the cook and the finished product!

It's Been A Year..

Brandi — Sun, 30 Dec 2007 00:25:38 +0000

Since we went gluten-free. (Or I guess I should say, "Since Nathan went gluten-free. )

We started last year, three days before Christmas. Not a good time to start a new diet, but we were desperate and God just kinda dropped it into our laps. See here for an in-depth post about why we started the diet.

It hasn't been easy, but both Eric and I believe it has been well worth it. Here are some of the benefits we have seen:

A huge decrease in anxiety.
Greater sense of competence.
Much more tolerant of change.
Decreased "stimming."
Increase in "connectedness."
Healing of eczema on his feet.

After a couple of months gluten-free we went casein-free as well. We saw even more improvement so we have stuck with it, but it wasn't nearly as drastic as when we went gluten-free.

Chess: First Lesson

Bird — Tue, 25 Dec 2007 17:21:57 +0000

I gave Nathan his first chess lesson yesterday. Everything went well. I basically just got one piece out at a time, told him what it was, and then told him how the piece moves. He picked up on it all pretty quickly. Hopefully he'll remember it all when we have our second lesson.