Thursday, March 31, 2005

In case anyone was wondering......

Developing Proactive Strategies for Managing Problem Behaviors
By Lori Ernsperger, Ph.D.

Individuals with autism often exhibit a wide variety of challenging behaviors: physical aggression, self-injury, tantrums, and noncompliance. These behaviors can be stressful to parents....

Sunday, March 27, 2005

A new adventure in the verbal funhouse that is my life...

When I say "funhouse," you know what I'm talking about right? Those rickety-tilty buildings at the local fair, where the mirrors make you look all distorted and nothing is quite as it appears? Well that it what most verbal exchanges are like at my house. The girls don't know what I am saying most of the time and while I can often deduce what they are trying to express, it rarely has much to do with their choice of words.
For example, awhile back they had been wearing me out all day with their inattention to the activities that they had chosen. I would have barely gotten the requested game or whatever out when they were ready to move on. After the zillionth interruption to make some kind of modification, I ranted at them, "You girls need to stay on task until the timer goes off. Honestly, y'all are never satisfied! You need to practice being content."
Now admittedly, that was way too much information and far beyond their comprehension, but I mostly speak for my own benefit anyway.
How does Emma Jean react to this admonition?
"Oh yes mommy! Our tent! That's a great idea! We need our tents!"

Today I made the mistake of referring to our project as "dying" Easter eggs. OMgosh. Majorly poor choice of words here in Literal Land. Sheesh. I never thought I was going to talk Abby down from that one. From now on, we call it "coloring" Easter eggs.
Life on the spectrum...Never a dull moment.

Sunday, March 06, 2005

open letter to the mom who thought pets were an appropriate party favor....

They are not.
It may be very creative and "fun" to give fish as party favors after a Nemo themed birthday, but it is wildly presumptuous.
And did you have to insist that we take one for Emma Jean too? She wasn't even in attendence. She just came to pick Abby up. Oh yes, thank you so much, she was delighted for about three days.
I just wanted to drop you a line and tell you that I think of you everytime I am cleaning each of our four fish bowls. (That's right, we already had one Beta and a frog and some goldfish). Oh and when everyone died for no apparent reason and I had to make up a reason that they were gone so Abby would not have a mamouth anxiety attack, I thought of what a gift your creativity was.
Thanks for sharing.
And everytime she panicked over their whereabouts after that and I had to answer the same series of questions about them over and over, I was reminded again of how much fun you are.
And when subsequently, weeks later Abby woke up sobbing in the middle of the night out of worry over those damn fish, I thought of you yet again.
Today, whiling away 25 minutes at my neighborhood Wal-Mart, waiting on someone, ANYONE, to come help me get some replacement fish. I thought of you once more.
I thought to myself, "She is so fun. I have to get her son over to the girls' b-day party. It will be a safari theme and I've got a beautiful red-butted baboon picked out just for him. And I even went ahead and got one more for his brother."
Aren't I so creative? Isn't that fun?

Friday, March 04, 2005

and the beat goes on....but sadly

I did go ahead and type up an email, ran it by a trusted friend who I can generally count on to be objective, and pressed 'send.' I actually feel relieved by the thought of not having to endure another jejune Saturday conversation with her.
Anyway, this is what I wrote, please forgive me for quoting myself.


Dear Sarah,
I regret my part in the heated exchange we had this morning. I got your message. And you are right of course, that it had never occured to me that you would have any personal feelings about ECI or that my criticisms of DISD's perspective on autism would sting or hurt you in any way. I am very sorry that I hurt your feelings, failed to recognize your personal connection to the field, and spoke derisively of the professionals employed in it. Once I got home, I turned to the only thing that I have to right my thinking and straighten my path, the Bible. I think I understand that you regard it as a collection of fables or stories that has outlived it's usefulness, but be that as it may, I depend upon it as a moral compass and I want to cite it as my source of such. Left to my own devices....well, I think much of my life is a pretty good illustration of what I am capable of on my own.
Anyway, I love you and your precious family.

Thursday, March 03, 2005

I guess sometimes you gotta know when to fold 'em

I got into a very heated exchange with someone I have known for more then 12 years now. In the past, I would have said we are friends, but our relationship has grown increasingly superficial in the last two years. Frankly, I am not certain why I maintain it; I guess out of a reluctance to fully accept how much my life has changed. I know it doesn't make sense to hang on to the vestiges of a past that was not constructive or in anyway something to be proud of, but I guess there is a part of me that was/is not ready to divorce myself from it entirely. Anyway, this person called me this morning to tell me that she had watched the DVD I sent of the NBC segment we were in. She opened with how fun it was to see us on TV, then immediately went on to describe it as "boring" and "autism 101," which it was. It was the beginning segment that kicked off the "autism-palooza" on NBC last week which grew increasingly in-depth as the week progressed. Regardless, it sort of made me feel a little defensive first thing this morning, I mean it wasn't even 8 AM. Anyway, one thing led to another and the next thing I know she is defending the very irresponsible advice we were given by the DISD/ECI autism "expert" and basically saying we got lucky with ABA and a whole slew of other remarks that I can only excuse by the fact that she is woefully ignorant in the matter. The content of the arguement is neither here nor there as to why I am posting about it anyway. What is of importance is that her complete lack of self-control when it comes to her tongue "It's my right to have my opinion,":rolleyes: and her lack of sensitivity to me and my obvious closeness to this issue has illuminated the true discord in our relationship. She called me later and left this half-assed, back-handed apology on my voicemail, which I personally think is a very craven and lame way to do someone, and laughingly said we just needed to agree to disagree on the subject and "perhaps we should just take it off the table for discussion as we have so many other subjects." And you know what? If we do that it leaves us almost nothing to talk about anymore. Seriously. My faith is off limits, as are my politics and now if my children and our all-consuming battle with autism is taken off the table too, that leaves only her obsession with her weight and her home improvement plans and to be truthful I am way, way too busy for that kind of superfulous kind of chatter. If that sounds selfish, I guess it is then. The other day another mother with a child on the spectrum who has been in the trenches longer than us took a casual poll asking if any of us had any friends left and not one of us said yes. And at first I was kind of shocked, but then I started evaluating my own life circumstances and realized why that is probably a real truth: Battling autism is never ending. Even when your child recovers to the point that Abby has it is still not finished. There are still more considerations to be made, ground to be taken or even lost and retaken :( . It is all consuming of every resource that you can fathom: time, money, emotions, and even friendships. Either they can stand the test of fire or the are consumed by it. A Christian friend of mine who is a mutual friend between myself and Sarah, who I had this altercation with, said that I am in a position to tell Sarah some hard truths about herself in my "articulate and diplomatic way" and that I need to do so, but I am not so sure that that is right. I don't feel any peace about that tact at all. I am drawn to the passage in 1 Corinthians chapter 13. I think I need to write her a brief note that apologizes for having hurt her feelings, cites this scripture as having straightened my path, tell her that I love her. And without stating it, I will no longer persuit the relationship. I will pray for her and her family and I will always love her of course, but we truly differ in such fundamental ways and I do not have the energy and at this very moment, even the inclination, for pretense. I have had a similar experince with an old roomate of mine recently. These are people I have known for almost half my life. It is so weird. And it really isn't me. They claim to espouse tolerance, but they really aren't, not in the truest sense of the word.
Anyway, I am feeling a little sad now. But at the same time pretty secure in my decision.
Anyone else ever been through this kind of thing? If anyone thinks I am making a rash or immature decision here, please speak up.
Thanks for reading.


1 Corinthians 13
The Way of Love
1If I speak with human eloquence and angelic ecstasy but don't love, I'm nothing but the creaking of a rusty gate.
2If I speak God's Word with power, revealing all his mysteries and making everything plain as day, and if I have faith that says to a mountain, "Jump," and it jumps, but I don't love, I'm nothing.

3If I give everything I own to the poor and even go to the stake to be burned as a martyr, but I don't love, I've gotten nowhere. So, no matter what I say, what I believe, and what I do, I'm bankrupt without love.

4Love never gives up.

Love cares more for others than for self.

Love doesn't want what it doesn't have.

Love doesn't strut,

Doesn't have a swelled head,

5Doesn't force itself on others,

Isn't always "me first,"

Doesn't fly off the handle,

Doesn't keep score of the sins of others,

6Doesn't revel when others grovel,

Takes pleasure in the flowering of truth,

7Puts up with anything,

Trusts God always,

Always looks for the best,

Never looks back,

But keeps going to the end.

8Love never dies. Inspired speech will be over some day; praying in tongues will end; understanding will reach its limit. 9We know only a portion of the truth, and what we say about God is always incomplete. 10But when the Complete arrives, our incompletes will be canceled.

11When I was an infant at my mother's breast, I gurgled and cooed like any infant. When I grew up, I left those infant ways for good.

12We don't yet see things clearly. We're squinting in a fog, peering through a mist. But it won't be long before the weather clears and the sun shines bright! We'll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us!

13But for right now, until that completeness, we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly. And the best of the three is love
  • International Day of Prayer for Autism & Asperger's Syndrome