Saturday, October 29, 2005

"I bounced 60 times mom." What good jumping! "Actually, it was bouncing, mom..."

"If you put 100 people with autism in a room, the first thing that would strike you is how different they are. The next thing that would strike you is the similarity."

-- Dr. Fred Volkmar, the Harris Professor of Child Psychiatry and professor of pediatrics and psychology, "Lifting the Veils of Autism," International Herald Tribune, Feb. 26, 2004.

I had not one but TWO of those rare moments this evening at the "Trunk-or-Treat" event we attended.
We were to meet a couple of families from church at a neighboring church for this fall festival type gathering. Being on my own, I really didn't get to visit with them; the girls had their own agenda naturally. LOL. But two interesting things happened while we were there.
Shortly after we had arrived, while I was waiting for the girls to come down one of those inflatable tunnel slide things, I spotted this woman who for whatever reason I recognized immediately as a gal I spoke to at length at an Autism Resource Fair about three weeks after Abby had been dx'd. That encounter was very encouraging for me, but still, it has been a few crazy years since. What was really funny is that she remembered me! She said, "Ah yes! And ya'll were on TV last Feb., right?" She had not met the girls before. She was appreciative of both their progress and their ongoing struggles, all without me uttering a word. Anyway, it was just cool.
Then later, I was in line with Abby at a bounce house (Beans was with one of the other families' dads) and she was about to flip out to get in, but there were some bigger boys in there. One 'a little too big,' I thought at the time. Another lady got to talking to me, we were chuckling over Abby's particularlness about various things as she prepared to enter the bounce house. I did not say anything about her dx of course, I mean, why would I? She said a few things that hinted at the subtext of the ASD lingo, but neither of us came out and said anything. When this boy who turned out to be her son exited I knew. He was a very HFA 16 year old, but still...
At any rate as Abby went in and he got reaccustomed to being out, Abby informed me that she would jump twenty times, then tweny more times and "Did I know what 20*20=? Four, zero, zero. Mom, I got something to tell you...When you have two zero's next to each other and you put number in front it means that number and one hundred." This is an old standby of hers I must endure at least 25 times a day or more. I was half listening when I caught the mom's eye and I knew that she knew.
It was so neat. I can't exactly explain it but for a split second I knew for sure there was someone on this planet, possibly in a neighboring zipcode who I didn't have to explain a thing to.
God is good.
And anyone who managed to read this whole post ain't too shabby themselves.

'Fix your thoughts on what is true and honorable and right. Think about things that are pure and lovely and admirable. Think about things that are excellent and worthy of praise.'
Philippians 4:8

Monday, October 10, 2005

Jason Upton ~ Faith

Okay, please bear with me. Most of ya'll know I like Christian music and much of it touches me and is so relevant. I adore the old hymns and the rockin' Christian tunes as well as the singer/songwriter genre. But friends, today I listened to a CD I got a while back and never really played. I think I hit the first song and it just wasn't what I was expecting and I never played it again. Today I did for some reason and this CD is so...simply put annointed. The musician is I guess. I am pasting the lyrics to one song ('song' seems insufficient to describe it) from the CD. I was literally weeping, just overcome while it poured over me. I am not a hard rock or anything, but it is not like me to be so moved. Anyway, if reading it strikes you at all, then hearing it will blow you away. Even dh was stilled completely when we listened to it together tonight after the girls went to bed.
Maybe it is just where we are right now, but in case someone else might need this balm that soothes and sparks at the same time, I want to pass it on.
The artist is Jason Upton and the album is called Faith and this song is also called Faith....

(inspired by the Holy Spirit and sung by Jason Upton)

Let faith arise, oh Lord, let faith arise
In the deepest parts of my being, oh Lord
In the most broken parts of me, oh Lord
Friends have failed me Lord, let my faith arise
Loved ones have failed me Lord, let my faith arise
Heroes have failed me Lord, let my faith arise
Let my faith arise
Let my faith arise
Let my faith arise
Let my faith arise
I say NO to the discouragement that keeps me down
I say NO to the things that keep me back from You
And this broken heart inside of me
Broken in so many pieces
By so many circumstances
I say NO to just letting it stay that way
Because I’m learning to trust that it’s not You that hurt me
I’m learning to believe that it’s not You that deserted me
I’m believing that You still love me
Brokenness and all
I’m believing that You’ve got a plan for me
I’m believing that You will restore me
I believe that You will awaken my soul
And let, let faith arise again, I believe
I believe like a little child again
I’m gonna dance in my trust in You, oh Lord
I’m gonna dance

two excellent reads

"Not Even Wrong," by Paul Collins

So good. Whether you have a vested interest in the subject matter or not, this is a well-crafted yarn. He is an amazing writer. My dh is not a big reader and he could not put this down.


"A Thorn in My Pocket," by Eustacia Cutler

Written by Dr. Temple Grandin's mother. When I learned that she had at long last published a book about Temple's early life I was like, "FINALLY!" The insights into the autistic world that Temple has offered in her books and lectures are invaluable, but as a mother I couldn't help but wonder...what was it like for the rest of the family? People on the spectrum are famously self-absorbed (hence the name of the disorder auto, which means "self" at it's Latin root) and Temple's autobiographical accounts are no exception, bless her. Anyway, this book just came out and the prologue alone has been so moving to me and Jimmy as well. I wanted to share a little bit of it because it may help some of ya'll. Bring you some comfort and encouragement or at the very least a sense of some kind of community. I know that we often feel so alone, despite the rising numbers that this epidemic claims. The disorder itself creates isolation, it just does.
Anyway, here it is, from her book, and I just LOVE this title,

"A Thorn in My Pocket:"

"I've learned how the parents of autistic children suffer from a loss of their own sense of self. We all know that a baby needs a mother to know that she is a baby, but, equally true is a mother needs a baby to know that she is a mother. When those first infant/mother resposes can't grow, a whole family identity is thrown out of kilter, I understand that far better now, from the vantage point of years than I could when I was young. I understand too how much parents long to be good parents. The purpose of my lectures is to find them and comfort them in their never ending battle with autism.

"Think of me as your future," I tell them. "I am where you will be many years from now, when you know how it all played out, when 'what will be' has turned into 'what was,' and you will have come to terms with it.'

"Perhaps not in the way you thought you would, but you'll no longer feel trapped in the morass of angst and guilt. You will have resolved your child's future and your own. You'll know you've given full measure, and the measure you've given has never been pointless."

"I offer you my story as a promise of that: an overall insight to carry with you as a talisman. And I promise that, iin the future to your surprise, your dreams will have changed and changed you."

" I know that's not what you want."

"What you want is a real talisman, a magic something you think I conjured up to coax Temple into joining life, as you hope your child will. There was no magic; there was just doing the best I could. That's the point; that's the talisman."

Theodore Morrison, who knew Robert Frost well, said that Frost also came late to lecturing and was never entirely at ease with it.

"I always carry something in my pocket I can touch when I am talking," he told Morrison, "so I'll remember who I am. Lately it's been a thorn."


Saturday, October 08, 2005

I am not superstitious

And I don't believe in 'jinxes,' but I have been halfway afraid to report something. Suddenly I am ashamed of myself for being so selfish when the glory isn't mine to do anything with but share anyway.
when will I learn????

For the past nine days now, Abby has been rocking and rolling! Just a super fun, funny, silly, affectionate, normal(ish) little girl. One major wing-ding in eight days! She has been letting me give her her shots and vitamins without a big ta-do and she has even been telling little jokes. Her language skills...OMGOSH!!!!!!!!!!!! Eye contact...suddenly improved like 70%. Incredible burst of growth seemingly out of nowhere. I am so awed by her right now I can barely shut my yap. I am agog in wonder.
Praise God! And thank you to all my prayer warriors. You guys are so awesome and such a blessing to my family. I love you man!


Satisfy us in the morning with your unfailing love, so we may sing for joy to the end of our lives. Give us gladness in proportion to our former misery! Replace the evil years with good. Let us see your miracles again; let our children see your glory at work. And may the Lord our God show us his approval and make our efforts successful. Yes, make our efforts successful!

Psalm 90:14-17

Thursday, October 06, 2005

thought for the day


A Shackle for the free.
~Ambrose Bierce

Tuesday, October 04, 2005

open letter to the moderator of the HFA forum

I am sorry that the "Top Ten" post I made in the 'Humor' forum was so terribley unwelcome and dare I say it? Misunderstood in it's intent. But I should know better, given what the ubiquitous 'they' say about where the road of best intention leads....
I am thoroughly chastened. Well maybe not thoroughly, but I will sincerely practice greater restraint if and when I post here in the future.
In other words, enough already.


Later that same day....

Of course I can't leave it I had to reply to 'her':

I did see that program. I found her to be very insightful and articulate and I was grateful that she had been freed from the fetters of her autism enough to be recognized as an intelligent human being with emotions and feelings and the ability to learn a number of intellectual facts, with perfectly functioning reasoning skills and capable of developing some behavioral stratagies that would permit her more freedom still from the "awful autism," as she so achingly described it. I am not unfamiliar with the differing outlooks within the autism community about the disorder and what it means to the spectrum of people affected by it within that community. I am not yet entirely familiar with how my own daughters will feel about it. I pray that they will find a way to accept themselves as the perfectly designed children of God that their dad and I believe that they are. Right now, they have to work a lot harder than it seems most kids their age do to gain enough self-control and understanding of this wacked out world they were born into to participate to whatever degree they are able and willing to do so as they mature. Until they can tell me how they feel though, we just muddle through learning together about what works for them and what doesn't and when we hit a brick wall we try to determine how high it is then whether or not there is a way over it, if it is an absolute necessessity that they learn how to scale that wall, or if there is a way around it. Or if there might be some flexibility in that area of life later, then sometimes we just take a step back and say, "Well then, not right now anyway. Maybe we'll try this again in the future."To me, that "Top Ten" bit was rye and rueful, but humorous and if it was written by a person filled with self-loathing and for the sole purpose to ridicule himself and how he lives with his disorder then I didn't get that from it at all. However, it was very good for me to see that someone else read it completely differently because as I have learned along this fantastic journey (so far) that I am not that great at considering another person's perspective myself and this is a stunning instance of just how profoundly disabled I can be in that area. That I need to be mindful of that fact as I deal with my two very different yet strangely similar precious daughters on their fantastic journey and of other's quite possibly differing perspective that we will meet along the way.I reiterate my previous apology and add a sincere and unsardonic thank you for responding because I have learned something from you tonight. You were kind about it and I really appreciate that too.

The only reason it bugged me is because she struck me as condescending in the way she upbraided me, as if I just fell off the turnip truck on my way to the HFA board, KWIM? Granted, I am not well known there, but I thought I had been around long enough to have earned my chops. In fact, I know I have hence my reply.Whatever. I shouldn't care. It's just a little ego bruising, no one got hurt. But I am shamefully attached to my pride at times.

Sunday, October 02, 2005

my sweet Bean

She tries so hard and is acutely aware of her shortcomings. I forget that sometimes in the midst of what feels like our daily battles.
Today I was trying to get her to retell something to me that we had just discussed (frustrating for both parties to say the least, but necessary unfortunately) and this is what she said to my request:

"But Mommy, I am not good at words. I can't make them work from my brain in my mouth."

I am thankful for this bit of insight today.Please pray for me to be more mindful.
Satisfy us in the morning with your unfailing love, so we may sing for joy to the end of our lives. Give us gladness in proportion to our former misery! Replace the evil years with good. Let us see your miracles again; let our children see your glory at work. And may the Lord our God show us his approval and make our efforts successful. Yes, make our efforts successful!
Psalm 90:14-17

Saturday, October 01, 2005

Top Ten Things About Being Autistic

What? A funny here in Holland?
Be sure to read the disclaimer....

Top Ten Things About Being Autistic
From our home office in a place that exists only in my mind, here is today's top ten list.

10. No need to keep your lies straight.

9. None of that pesky peer pressure.

8. No irritating fluctuations in pitch when you speak.

7. No need to wait for bad news to get stressed out. Why procrastinate?

6. Greatly reduced odds of bad dates when you can't get members of the opposite sex to acknowledge your presence.

5. Ability to hear bad news and not realize you are supposed to be sad. Happy, happy, joy, joy.

4. Fewer friends means less Christmas shopping.

3. Harder for other players to read your face when you are playing poker.

2. If you are ever in a swarm of flies, the swatting-at-the-air motion will be second nature.

1. You never notice the dirty looks other people are giving you; that would mean looking them in the eye.

Disclaimer: This is humor, folks. If it offends you, I'm sorry. Well, OK, you are right; I am not really sorry... but then that really depends on the meaning of the word sorry, right? I am not sorry, in that I am now laden with sorrow and remorse... how could I be? You just read this a second ago, so you could not have sent me hate mail yet, so it is obvious that I do not even know that you are offended just yet. So perhaps what I should say is this. No one likes autistic people more than me, so if you are going to send me a letter about how hard it is, or what great people they are, or how I am doing a disservice by denigrating them with my attempts at humor, you might as well send it to /dev/null. Ok, ok, maybe no one uses that computer geek expression anymore, but I've never been on the cutting edge of coolness, to say the least. Anyway, I like autistic people, especially since I live with one of them (wait, I thought I lived alone. Oh yes, I do, that's right.) Remember that Jews can poke fun at other Jews, blacks can poke fun of other blacks... why should we not have the same rights as them? This is, after all, an advocacy site, or at least that is what is written on the index page. So maybe that is my angle... by doing this top ten list, I am asserting the autistic person's right to make fun of his own kind, just as all the other minorities can. Yes, that's right, other minorities. We're only one in two hundred; I would call that a minority, wouldn't you? Speak up, I can't hear you. Maybe if you pick up the mouse and say "computer" first, like Scotty in that one Star Trek movie, I will be able to hear you. Or maybe not, but you will never know until you try. I'll wait; go ahead. Ok, so I guess that does not work. Well, you could always try telepathy. If I get a telepathic message, I will assume it is yours. Please leave a telepathic message after the tone and I will get back to you when I am finished perseverating on something. Yeah, right, that's really likely. Might as well wait for a glacier to come by so you can ride on it. Hey, did you ever notice that 'glacier' sounds a lot like 'glazier,' which would be the guy that puts new glass in windows? What is the connection between them? Well, I'll have to analyze that one another time; right now I am hard at work writing a disclaimer. What is a disclaimer, anyway? Well, my son... ok, so maybe you are not my son... maybe you are my daughter. Anyway, a disclaimer is a weaselly kind of note that essentially says that what you just read does not say what it says. Don't you just love those annoying little things? I know I do. I saw one on the Simpsons after an Itchy and Scratchy episode. It said, "This cartoon contained scenes of extreme violence and should not have been viewed by young children," or something like that. Funny, eh? Well that's humor. And that is what we are talking about, right? Humor. The stuff inside your eyeballs is called vitreous humor, but that's not the same thing. Trust me. Why should you trust me? I don't know. Why should I trust you? Huh? Huh? Trust is a funny thing, isn't it? Ok, it is not literally funny, in the sense that trusting people would make you laugh. Yes, laughter. I love laughter. I even try to provoke it sometimes. For example, today I posted a humorous thing on my web site. I called it "Top Ten Things About Being Autistic." Yes, I know that Dave Letterman's Worldwide Pants may take issue with my use of the top ten list concept. Well, he'd have to be a real butt-head to attack an autistic guy for putting something on his advocacy site. Speaking of that, am I the only one that thinks that Beavis and Butt-head was funnier than King of the Hill? I mean, if you want funny cartoons, you need not look beyond the Simpsons, Futurama, Family Guy, and South Park. Underwear gnomes... that is classic stuff. I also liked Two Stupid Dogs and Ren and Stimpy, back in the John K. days. Of course, there is no denying the ageless appeal of Wile E. Coyote falling off of that same cliff a hundred times. I think Wile E. Coyote might actually be on the autistic spectrum himself. He perseverates on catching that stupid roadrunner... it is all he seems to think about. He's highly intelligent, I mean what other kind of coyote can build a hundred foot tall metal robotic replica of himself? I see coyotes around here all the time; this is the desert Southwest, after all, and not one of them has even had a rocket strapped to his back while he wore roller skates. Despite Wile E's intelligence, he always seems to come up short in common sense. Sounds like someone else you know? Yeah, me too. So anyway, if you think that somehow this little top ten list is going to hurt autistic people, I say you need to lighten up. No, I do not know if you need to go on a diet; I was speaking figuratively. Yes, I can do that too. Will the wonders never cease? Face it, this page is not going to hurt anyone. To get here, unless you went throuh a search engine that hooked you right in here directly, you had to go through my front page, which lists my articles fairly brimming over with my wisdom and my pro-autistic stance. This is just comic relief, nothing more. If we can't laugh at ourselves, we're not mentally in good shape. A circle is a good shape, because that is the shape of pizza pies, and all sorts of other pies. I love hot pumpkin pie buried under a mound of Cool Whip. Mmm. Sometimes I would eat Cool-Whip from the bowl, as if it were pudding. I also used to eat ready to bake cookie dough from the store. Speaking of dough, have you noticed that dough is slang for money... and if you bake dough, you sometimes get bread, which is also slang for money. However, sandwich, which is the next step on the bread chain, is not slang for money. If a bank robber burst into the bank and demanded all the sandwich, people might be puzzled. Rubik's cube was a puzzle, but no one would give one to the robber demanding a sandwich. These things used to be everywhere, and now they are all gone. What happened to yours? I left mine in my mother's house when I moved out when I was eighteen (XVIII). That will be of no consolation to the hapless burglar that breaks into my house looking for sandwich. Even if he wanted an actual sandwich, he would probably not be happy breaking in here. He might find some Top Ramen, but probably not anything resembling either a sandwich or a Rubik's cube. I don't even have sugar cubes, which are for horses, but I do have a box of sugar. C and H pure cane sugar, that's the one. One was a song by Metallica on their last album that sounded like them, which was ...And Justice For All. That was a great album, even if they didn't write Jason Newsted any bass parts. No, that is not bass, rhyming with glass, that is bass, which sounds like base. He plays a guitar, not a fish. Could you see him up there on stage, strumming a big old fish? It would be funny to see him smash it into the stage after the show. That never was Metallica' s style though, before they became activists for the poor underpaid record companies, and had to go get rid of Napster. Everyone has their issue. Mine is to promote aspie and autistic pride nnd to push for equal treatment. I suppose it lets you know where someone's priorities lie. Personally, I hate to lie... it's not the way I am wired. Really, though, I do not actually have wires in me, at least not in the sense of copper multistranded things with sheaths of PVC. I have neurons, though, and those act a lot like wires. I think it is possible that you may have neurons too. Yes, I am sure of it! A non-sequitur is a statement that does not follow from that which preceded it. My bank sends me statements, but I don't like to read them. They're boring. It's like reading the phone book... huge cast, no plot. By the way, free association can make your disclaimer longer than it actually needs to be.

I did not write this. I sure appreciate it though. Laugh out loud!
  • International Day of Prayer for Autism & Asperger's Syndrome